tag:blogger.com,1999:blog-66900822376239945142024-03-14T21:24:31.133-07:00Navigating the Stormy SeasDovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.comBlogger135125tag:blogger.com,1999:blog-6690082237623994514.post-25557035892484966902024-03-14T14:51:00.000-07:002024-03-14T14:55:37.060-07:00Hello and Goodbye<p> I have not written here for years. Over 5 years, in fact.</p><p>The reasons are many. First off, I am at the point in my life where Dovi isn't such a front-and-center part of my life. He is 15 1/2 years old, bli ayin hora, and doing amazingly well at Anderson. I call his house regularly, and they send me pictures regularly. I hope to post some later on in this entry. I just finished the IEP meeting with the school , and I was moved to tears by their reports on the things he can do today. If someone would have told me back when I started this blog and despairing about his future, that in 2024 he could recognize numbers, guess the weather correctly, do tasks such as taking paper to the shredder, sweeping the floor, doing laundry, following recipes correctly, and dressing himself, I wouldn't have believed you. He is tall, handsome and healthy, and while I miss him every day, I cannot thank Hashem enough for leading him to such an amazing school and such devoted caregivers. I can write a whole book about this topic, but I'm pressed for time.</p><span><a name='more'></a></span><p><br /></p><p>So I haven't updated this blog because that would entail going back in time and delving into a period that I have no interest in revisiting. My life has stabilized to the point where frankly, thinking back to those difficult times serves no purpose except bringing up terrible feelings that I have no intention of revisiting. It also makes me think more about him, which makes me very sad. So there isn't much of a point in continuing to write, since it won't help me, but harm me.</p><p>Secondly, I don't even remember how this works. I would have to relearn all the technical details of blogging, and there's no time for that in my life. As it is, I'm writing this hastily for reasons you'll see soon, and I don't even know what I need to do to make it look similar to the previous entries.</p><p>Lastly, as I'm getting older I struggle with different minor health issues, including brain fog and sluggishness. I have stopped writing professionally a long time ago; it's harder for me to string together proper sentences, and very hard to focus for any length of time on a sustained task. My life is very busy; I'm always chasing my tail, and updating this blog isn't on the list. I left it open instead of shutting it down, in case anyone finds this through a search and finds my story helpful.</p><p>Which is exactly what happened recently. Apparently, without me realizing, a big organization whose mission is to help out parents of special needs children, referenced this blog in their weekly email, which is probably what led you here.</p><p>So I just want to say to you, thank you for visiting. I hope there will be something in these pages that you will find helpful, even if it's just one article. Hang in there! I hope life will get easier for you soon and you experience strength and even joy, despite all you are going through.</p><p>While I'm very much out of the special needs circles at this point, and I don't even know what resources are available, you can always reach out to me via email and I can try to see if I can lead you in the right direction.</p><p>Goodbye for now.</p><p><br /></p><p>P.S. Hello from Mr. Handsomeness himself.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><strike style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5A_D7i_o2q4rz9443wowKk4lhKdMzL5FG2LSyF85ftCXdFrQCfm923hJg-AQxGrUYyr_edJPO8fGhqUSL-oUi0AovDwAni7age-6C-ng8alX_ke3E-dk6svhd_bqmmVtqNklYooYVxZZUx3-MPI52hL_89vPyE2UzR7BgdLYif15dK6f9-CQKkwiQJs/s320/WhatsApp%20Image%202024-03-12%20at%209.59.08%20PM.jpeg" width="240" /></strike></div><br /><p><br /></p><p><br /></p><p><br /></p>Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-36110299262360701532018-01-07T13:22:00.001-08:002018-01-07T13:22:08.155-08:00After the Flood June 13, 2013 was a pivotal point in the journey with Dovi. But it turned out to be merely a passing storm. Sure, I was rattled and unsettled and in turmoil, by the realization that placing Dovi was not a far-off dream, but a closer reality. But like most storms, the water eventually receded, and the rickety vessel resumed its cumbersome, weary trek down the unknown seas.<br />
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Which left me, the captain steering the ship, rather seasick and green around the gills. And there was debris all over the ship's deck to clean up.<br />
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The Shabbos following that Stormy Day was Dovi's fifth birthday on the Hebrew calendar, which coincided with our 17th anniversary. Still beset with raw emotion, I sat down and penned him <a href="http://www.autism-parenting.com/2013/06/its-dovis-party-and-ill-cry-if-i-want-to.html">this</a> note. It was a note to myself, obviously, as he will never be able to read it, barring a miracle, or the coming of Moshiach, whichever will happen first...<br />
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I did a lot of soul searching that afternoon and evening. I discussed the situation with many people - my mother, my friends, my husband. My mother was filled with sympathy. My friends were filled with empathy. My husband was a completely different story; he had trouble understanding what I was so upset about. He was ready to place Dovi right then and there.<br />
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It's no secret than men are from Mars and women are from Venus, so to speak. Women filter everything through their emotions. Men think with logic. My husband explained to me very simply why he felt the way he did, and on paper, it all made sense. Our house was always a wreck; I was always a wreck; I let Dovi get away with everything; we couldn't focus on Chaim's needs; We had no life; and so on and so forth. But missing from the equation was the emotional counterarguments, which were endless. Dovi is a little kid; he belongs with his family. There are no Jewish places taking such young kids. If he gets placed, a big part of my identity will dissolve, and I will be left figuring out who I am. Etcetra etcetra. Both sides had equally valid arguments. But his attitude was killing me.<br />
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I may have mentioned in another post that my husband's relationship with Dovi completely changed and blossomed the last 2-3 years he was home, and the 2 of them have a deeply loving relationship that I cannot compete with. Dovi's face lights up in ways I can't describe when my husband visits. He obeyed him in ways he never obeyed me. My husband's ability to put his feelings aside and keep firm boundaries and discipline was impossible for me; I often sabotaged his efforts because of my maternal insecurities. But at that time, his relationship with Dovi was weak. And honestly, so was mine. We were still struggling to figure out how to balance all the different facets of parenting Dovi, and it was very difficult to have a positive relationship with him. He was also much lower functioning at the time and he didn't express any reciprocal positive feelings, so everything around Dovi was just one big ball of stress.<br />
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I was desperate to quell the talk of placing Dovi for as long as possible though, despite knowing it was no longer a distant issue. I realized that the main reason for the tension in the house wasn't so much Dovi's existence, but the way I was handling it. That afternoon I put in extra effort to maintain a calm attitude. I stayed away from the computer all evening, focusing on Chaim and Dovi. My husband noticed that the atmosphere in the house was a lot more relaxed. When Dovi was running up and down the hallways, instead of making annoyed comments about the racket, he said, "Look how adorably he is running around. I wish he was like this every day!" I realized with a start where my husband's willingness to find a facility for Dovi came from. It wasn't even Dovi himself, but my constant kvetching and panicking about how everything was falling apart. I resolved to try much harder to keep the house running and not complain so much.<br />
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It worked - for a short while. But I was deluding myself. My sister told me, "You're suddenly whitewashing everything he does. Your house is still a wreck. Caregivers will come and go like a revolving door. Things will be extremely difficult for a long while. I understand you want to pretend that the situation isn't so bad because you are terrified of thinking of the alternative -- placement -- but you have to be honest with yourself."<br />
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But for the moment, trying bravely to pretend it wasn't all that bad, and putting in supreme effort to hold the fort together was the better option.<br />
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The end result of all that soul searching and turmoil and valiant effort at fighting my case was a very simple set of statements:<br />
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Caring for Dovi was <i>hard</i>. And it would only get harder as he'd get older, stronger, and more stubborn. I knew and understood that. However, he was still very little and I felt that his time with us was nowhere near complete. I was willing to do 2 things: 1) call every Jewish agency in New York and place Dovi on the waiting lists of their residential facilities. I would do that after the baby was born - my emotions were too heightened in my third trimester of pregnancy. 2) If by the time he was six years old his behavior hadn't drastically improved, I was willing to visit TATD in the summer while we were up in the Catskills, so I could see the place for myself and decide whether I wanted to enroll him there. For now, however, the discussion was back on the back burner, where it belonged. I told my husband that I did not want to discuss the issue <i>at all</i> until Dovi was six. He was not going <i>anywhere</i> at age five. Not that anyone would take him that young -- and I was <i>certainly</i> not going to send him to Higashi of Boston, regardless of what Ted's parents had done. End of.<br />
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I had to get used to being away from Dovi for a lengthy period of time first. The longest we'd ever been apart up to that point was three days. A summer in camp would help ease me in to being apart from him. He would be at camp for a total of six weeks, and I would visit him after three weeks. It felt like an eternity. But a very necessary eternity.<br />
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June 13, 2013 was not <i>completely</i> bad. Something very small and very big happened that evening, and it came from my guardian angel, whom I'll henceforth refer to as Gina. The same Gina who had told me about the <a href="http://www.autism-parenting.com/2013/01/bed-tent-saga-part-two.html">Pedicraft bed and how to get it</a>. Once again, she came through with an incredible idea that hadn't occurred to me. We had a little Facebook chat, and when I told her about the Sunday Program was refusing to take Dovi back for the coming year, she told me that her daughter was attending an affiliated program, under the umbrella of the same agency that ran the Sunday Respite program - but it was a 1:1 program specifically geared to autistic kids. It wasn't local to me -- it was a good half hour drive away -- and they probably wouldn't provide transportation. <i>How on earth had I never heard of this program????</i><br />
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I vaguely recalled Yolanda mentioning a program that Josh attended on Sundays, but I had somehow never put 2 and 2 together. Gina told me that her daughter also eloped at times, mouthed inedible objects, and needed constant close supervision - and the staff at the Sunday Autism Respite Program was not fazed. It was a great program, with real activities, run in a way the local respite program wasn't. I was floored.<br />
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My heart expanded with excitement at the possibilities! I couldn't believe it. HaShem had come through once again. I was stunned at the reminder once again - when one door closes, a better one opens. It was clear, time and time again, that every terrible thing that happened when it came to Dovi's resources, ended up being a very, very good thing. And this was one of them too!<br />
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A big unanswered question that remained with me until the day Dovi left home, was: <i>How did my Medicaid Services Coordinator not know about this option?</i> It would come up many more times over the next 3 1/2 years. As wonderful and kind and hardworking as they were to help me as best as they possibly could, ultimately I found virtually all the resources by myself. I guess they had never come across such a needy case, which couldn't be helped by the handful of locally available options.<br />
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I called Yolanda to get her list of agencies who ran group homes - she had worked her fingers sore in the months prior to call them all and remind them of Josh's desperate need for a bed - and I wrote all the numbers down dutifully, and put them in a drawer. I asked her about the Sunday Autism program and she praised them to the sky. I called the director of the program, but she had bad news for me. She was leaving the program in June. She would, however, train in a replacement, and it would be up to her replacement to decide if they could accommodate Dovi. They also couldn't provide transportation, as Dovi would be the only child from my area attending that program. I assured her it wouldn't be an issue; my husband would do the morning route, and I would hire a private driver to bring him back in the afternoons. That program ended at 2:00 instead of 3:00, though, and it would be tough to find a girl willing to have Dovi from 2:30-6 pm. But I would worry about that once he actually got accepted to the program.<br />
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I was ecstatic that there was actually some hope for Sundays!<br />
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On Friday, Dovi went to Mrs. G. for Shabbos. The house felt a little empty. Suddenly there was a knock at the door. My mother showed up - with a bunch of Happy Birthday and Happy Anniversary balloons, and chocolates. I was shocked. My mother never visited me. She had sensed how distraught I was with all that was going on, and she came to bring some cheer. I was touched.<br />
<br />
****<br />
<br />
Something great happened in the middle of June. It was a small, seemingly insignificant event - an event I almost missed - which would have incredible effects a few months later. You'll have to stay tuned for that part. But here is part 1.<br />
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It was a typical Thursday afternoon. I was sitting on the couch. Dovi was eating supper. I noticed 2 missed calls on my cell phone. One of them left a voice mail. She introduced herself as a girl who worked with Dovi often at The Respite House. A Respite House counselor was getting married in my neighborhood - would it be possible for them to bring Dovi to the wedding? I was shocked. The Respite House had a strict rule about staff interacting with parents. Only the Head Counselors were allowed to talk to the parents - I had no idea who any of the girls were, even though I often wished I'd know their identities so I could hire some of them for private respite. Apparently an exception was made and the girls were allowed to call me so that Dovi could attend the wedding. I called back the number of the girl who had left the voicemail, but she didn't pick up. I called the second girl then - a girl I will henceforth refer to as Ariella. You will see her name in the future on the blog.<br />
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Ariella answered the phone and explained, excitedly, how the girl getting married that night - Gabi - was the unabashed leader of the Dovi fan club, and it would mean the world to her to have Dovi at her wedding. I was in absolute shock. Dovi had a <i>fan club</i>? All I EVER heard from ANYONE who had Dovi was how hard he was, how difficult his behaviors were... and here he had a real fan club? I was suddenly shown a window into a world I hadn't known about and would slowly learn about -- a whole world out there of girls who were absolutely crazy over Dovi. What a pity that all I ever heard from Dovi's caregivers and therapists was criticism on my parenting, dire warnings about how things would get harder, and annoyed eyerolls at his antics. The locals girls who took him didn't complain so vocally, but they breathed a sigh of relief when they brought him home to me. Things were about to get very different, as my network of volunteers and counselors was about to expand. Every new program that Dovi attended -- be it summer camp, winter camp, and all the different respite programs he'd end up attending - brought about an explosion of new girls who fell in love with him and wanted to have him whenever they could. Ariella and her friends was my first view into that world. <a href="http://www.autism-parenting.com/2013/06/shoutout.html">It was shocking, exhilarating, and filled me with hope.</a><br />
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We quickly dressed up Dovi in his finest crisp shirt and shorts. Ariella and her friend showed up in a car with an appropriate booster seat for Dovi, and they whisked him away to the wedding. I was simply blown away. They returned him a little later and once again expressed their burning love for delicious Dovi. I walked into my house pretty dazed. I quietly saved Ariella's phone number in my cell phone to use discreetly in the future if the need arose.<br />
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The photos they took at that wedding are the best shots I have of Dovi during all of 2013, literally.<br />
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<img alt="Image may contain: 1 person, sitting" height="320" src="https://scontent-lga3-1.xx.fbcdn.net/v/t1.0-9/1003112_174551879380882_654468757_n.jpg?oh=4156a91e9c238a1638a9d9c9e371630b&oe=5AF40D13" width="240" /><br />
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This was only the beginning. Later that summer and early next fall, two different <i>incredible</i> girls who had formerly worked at The Respite House contacted me privately, separately, expressing their love for Dovi and how much potential they saw in him, and offered their services. Both them completely changed my life and played a huge part in making 2014 and 2015 surviveable.<br />
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But that will come later.<br />
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******************<br />
<br />
The days leading up to Dovi going to camp were rough. I had a perpetual pit in my stomach. Would Dovi be okay? Would they understand his cues? What would I <i>DO</i> with myself in his absence? It was crazy. 3 1/2 years later, the month leading up to Dovi's move to the residential school would mirror the process and emotions in an uncanny way.<br />
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<i>To be continued.</i><br />
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<br />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com1tag:blogger.com,1999:blog-6690082237623994514.post-52232346749327949822017-12-12T19:15:00.001-08:002017-12-12T20:00:09.585-08:00The Turning PointTonight is the first night of Chanukah. As we lit the Chanukah candles, my thoughts were with Dovi. It has taken close to a year of work to push the guilt feelings aside and actually enjoy the moment. This night was filled with memories of a year ago, Dovi's last Chanukah at home with us. We had just received the news that Dovi was accepted at the residential school, and he would be moving out in approximately six weeks. Our emotions over Chanukah were mixed, to put it mildly. I think I spent the next six weeks with a perpetual lump in my throat.<br />
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I think today was a very appropriate day to sit down and reflect on that pivotal day when I moved into a new phase of my life - June 13, 2013, the day that Residential Placement inched its way slowly from the back burner to the middle burner.<br />
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Before I begin, I want to thank the devoted readers of this blog who have hung in until now. I apologize for taking such long stretches between writing chapters of this long-drawn out story. Between struggling to keep up with my Ebay/Poshmark "business," dealing with real life issues, and bracing myself for delving into the dark time that was 4 1/2 years ago, it takes a lot out of me to write these entries. So thank you for cooperation.<br />
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In any case, here's the pinnacle, the climax, the apex, what have you, of all the events leading up to the catclysmic moment when the world around me changed, forever. The moment when the niggling thought of 'one day we'll have to place Dovi but not yet' came into very sharp focus. It would take another 3 1/2 years until he would actually leave home, but it was the defining moment when I realized that it was a definite reality.<br />
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The weeks leading up to the summer of 2013 were extremely difficult, to put it mildly. I was dealing with the effects of a third trimester of pregnancy at age almost-37. Everything hurt, and I had no energy. I was constantly busy with an overwhelming amount of research and advocacy and paperwork and scheduling caregivers. All kinds of crazy incidents happened then, such as <a href="http://www.autism-parenting.com/2017/08/the-rise-and-fall-of-leticia.html">the blow-up with Leticia</a>, worrying about finding places for Dovi when I went into labor, getting his camp stuff set up, and most difficult of all - handling his newfound obsession for ripping paper.<br />
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The underlying reason for the vast majority of Dovi's destructive behavior has always been intense sensory seeking. Whether it's ripping open endless oatmeal packets, jumping in and out of the bathtub, spilling water and liquids, smearing ice cream on walls - it's all to get sensory input he desperately craves. Sometimes I was successful in redirecting his need for sensory input, after endless brainstorming and shopping and trial and error. Most of the time, I wasn't. Then Dovi discovered ripping paper. Apparently he was taught how to rip paper during Occupational Therapy at TABAC, and it delighted him to no end. Suddenly, no sheet of paper in any shape or form was ever safe. We had to hide all forms of paperwork, magazines, newspapers, and books. Fortunately I don't have any daughters whose homework would inevitably have gotten destroyed. But magazines were a big casualty. It was difficult to remember every single second of the day to hide all papers in the house. When I realized that this <i>meshigoss</i> wasn't going away anytime soon, I started supplying him with all manner of scrap paper to go to town with - old newspapers, a package of construction paper, ad booklets. We had our own built-in paper shredder. All that left the house blanketed in paper - it looked like Ground Zero. Leticia did not approve, of course.<br />
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We tried to redirect him. But it was of no use. He was drawn to paper like moths to a flame. Then his com-hab girl introduced him to <a href="http://amzn.to/2AMFw5Z">playfoam</a>, which was an excellent sensory tool - but it left tiny stick pieces of foam attached to everything - clothing, shoes, walls, in the dryer. The level of messiness in the house started ramping up to levels it hadn't been before.<br />
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(Below are stills from a pretty funny video where Dovi is ripping up a newspaper and then watching with delight as it floats down like confetti. It would take a while for me to realize that this was his way of getting visual input.)<br />
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Then suddenly, out of the blue, like a violent wave crashing the sides of the rickety vessel barely keeping afloat, my carefully assembled network of caregivers and respite programs started falling apart. I would learn later that this tended to happen every single year at the end of the school year. Caregivers were burnt out and wanted out; programs assessed their list of participants and tried to weed out the more difficult cases; and as I learned the hard way, Dovi's sensory situation always seems to escalate in June, for reasons I just can't explain. Maybe it's the barometric pressure changes, or the ways the stars align - who knows.<br />
<br />
The bottom line was, that the bottom underneath me simply opened up and left me falling down, flailing my arms desperately.<br />
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First to bail was Toby, the com-hab lady to whom Dovi went straight after school twice a week. I had noticed a few weeks earlier that she was pregnant, and apparently she'd had some dizzy spells and her doctor told her to be on bedrest. I felt terrible to think that someone who was highly pregnant had to do the same job I was finding so difficult in my own pregnant state. At the same time I started panicking -- it would be impossible to find someone new, available at those hours, with enough experience to handle Dovi, for 1 1/2 months. Thankfully, the situation resolved itself within a few days and Toby continued taking Dovi until the very day he left for summer camp. (Toby and I remain friendly to this day. Her child is indeed the same age as my Levi, and we often exchange text messages about how the kids are doing.)<br />
<br />
Just a week later, Estelle's mother called me late one Saturday night, around 11 pm (<a href="http://www.autism-parenting.com/2013/02/and-second-angel-was-disguised-as.html">Estelle </a>was Dovi's Sunday program counselor.) with a long story about how she needed Estelle's help the next day for a fundraising event she was hosting. To say I was taken aback was an understatement. I asked her mother in shock, how she could do this to me. I was 8 months pregnant, incapable of staying home with Dovi all day on Sunday - it wasn't even safe. There was no way I could find a substitute at that late hour! If it was a legitimate excuse I could understand - but for a charity fundraiser? She had known about that fundraiser weeks in advance. I asked if Estelle's sister could fill in for her, as she had done in the past. No, said her mother, her sister's help was needed to. I was flummoxed and desperate. After a few quick texts to possible fill-ins, Toby agreed to take Dovi from noon until Cerie the com-hab girl would take her usual slot, and Estelle would do a shortened day - from 10 am to noon. I was still very upset about it - I didn' think it was responsible of Estelle's mom to yank her from her very important job for her own reasons. On Sunday night I was stunned to discover that Estelle was engaged!! Her <i>beshow</i> - her engagement 'date' - took place on Sunday afternoon, which is why she needed to take the day off. Whether she had right to do so is up for debate, and I'm sure some of you readers will slam me for even <i>thinking</i> I had a right to be upset. This incident illustrates how desperate and helpless and dependent I was on qualified caregivers to take care of Dovi. I simply did not have the energy. And a constant, reliable roster of people available at the snap of a finger to fill in, was exhausting to maintain.<br />
<br />
A couple of days later, things escalated further. I remember the scene clearly. It was one day before the holiday of Shvuos. I was standing in my hot kitchen, mixing cheesecakes, cooking roasts and side dishes and desserts. I was racing against the clock, but felt good that time was on my side. As usual, Dovi was scheduled to go to Cerie's house from school via ambulette at 3:30, and Cerie would bring him home at 6:00. At 1:30 p.m. the phone rang. It was Alice, Dovi's impossible-to-please therapist, informing me that she was leaving early that day - at 2:30 instead of 3:30, as she also had to cook for the holiday. I couldn't believe it. This was messing up my day completely. I would have to run over to pick up Dovi from TABAC at 2:15, find some way to occupy him for an hour, and then find a way for him to get over to Cerie's house -- how, I did not know. By then, I would be depleted, the house would be in shambles, and there would be no food for the holiday. I was shocked that Alice simply had carte blanche to do whatever she wanted with her schedule, without caring how it impacted the families of the kids. I started panicking. There was no way I could have all the cooking done by 2:15! I called my sister in a panic, asking her which items I should cut out of the menu. She had a much better idea: unbeknowst to me, the high school girls only had half a day of school that day! Hoping against hope, I called Cerie on her cell phone - and she actually answered! When I told her about the bind I was in, she gladly offered to pick Dovi up from TABAC and take him for an extra hour. I was weak in the knees. Talk about a crisis averted. The mental strain all these 'sudden changes in plans' and the quick scramble to find coverage so that my schedule wouldn't be totally upended, took a toll. Just rewriting and reliving incidents like this is giving me heart palpitations. The whole setup at TABAC took months off my life; not having rotating substitutes like other centers do, but instead operating it as an hour-by-hour therapy clinic, leaving the mothers of the kids to fill in the gaps, was incredibly stressful. Thankfully, I wouldn't have to deal with that once Dovi started a school program.<br />
<br />
I had barely recovered from that stressful hour, when I was sucker-punched in the stomach once again - and this time it took me longer to start breathing again. That same day, the director of the Sunday program called. Apparently, Estelle was having a very hard time managing him. She agreed to do it until the end of the school year, but... since Dovi was a client at The Clinic for Medicaid Services Coordination, and they had their own Sunday / legal holiday respite program for kids over age 5, perhaps he would do better in that program starting in August, since he's turning five in July.<br />
<br />
The world around me began spinning, and I started hyperventilating. <i>This could not be happening. No, no, no. </i>The Clinic had made it clear that they were not the right place for Dovi. They would never take him. They did not have a 1:1 ratio or even a 1:3 ratio. They did not take difficult autistic children. That's why the Sunday Respite Program had been my lifesaver - because they were an autism program. If they kicked him out, he had nowhere else to go.<br />
<br />
Mrs. Director - who happened to be my 2nd cousin - tried to explain. Dovi tended to elope. By law, they were not allowed to lock the doors - the kids had to have free rein to move around. (Which is a ridiculous rule that makes zero sense. I don't understand how kids who are a <i>safety risk</i> and a <i>flight risk</i> have to have free rein to run out of buildings and G-d forbid get lost or hurt or even killed.) The male director of the program - himself a father of two special needs children - didn't feel they could take the responsibility of him getting lost or hurt. Since he was getting his com-hab services from The Clinic, they would have to find a way to accommodate him.<br />
<br />
To be honest, I felt very hurt and betrayed by Estelle, who had started out being such a good friend, and a real angel who always seemed to have time for Dovi. Unfortunately, that always seemed to happen to me; incredible people would swoop into my life, fall in love with Dovi, give them their all, and suddenly get burned out within a few months. Estelle, on the other hand, argued that she had never told the Director that she didn't want to have Dovi anymore and it was all the Director's perception. After I cried and pleaded with the Director that she could not abandon me to the wolves, she said she would think it over. The thing is, she explained, she was leaving the program after that school year, and the new director taking over was kinda afraid of Dovi. I explained to her how The Clinic is even less suited to Dovi's needs, and with a newborn baby, having Dovi home all day on Sunday was simply not an option. Creating my own program of rotating workers had proven futile in the past. It was too overwhelming for me to undertake. The autism sunday program was there for a reason - to provide respite to families. How could they just toss out a kid because he was too 'hard'?<br />
<br />
Unfortunately this was a new reality that would slap me in the face time and time again. Every year - sometimes a few times a year - another program Dovi was part of would apologetically inform me that they were incapable of handling his needs and ask me to find something else for him. It's almost laughable. Dovi was a small 5 year old boy whose only 'crime' was being extremely active. I would think to myself, if these young 19 year old girls cannot handle Dovi for a few hours once a week, how do they think his 40-year-old mother with other kids and obligations does this every single day of the year? Indeed, the most oft-heard refrain over the years was, <i>"I don't know how you do this."</i> Honestly - I don't know either how I did it. I truly don't. It's a miracle I didn't crack up completely.<br />
<br />
Once I was able to contain my hysteria and explain to my cousin-Director that Dovi had nowhere else to be on Sundays and I didn't have the ability to coordinate a program for him myself, she said she would think it over. She would spend the summer advertising and looking for the perfect match of a counselor for Dovi who would be his 1:1, and hopefully that would work out better. I hung up the phone shakily, realizing again that this would be the story of my life for the next number of years, until Dovi would eventually end up in residential placement.<br />
<br />
(By the way, when that year was up, Estelle and I kind of lost touch. I attended her wedding, with Dovi no less, but the feeling of hurt and betrayal continued festering. About 2 years ago we sporadically began talking again, and the air was cleared. Estelle assured me that it had never been personal; it was simply too much for her to continue working with Dovi, and there were no hard feelings. We are good friends today.)<br />
<br />
At my next therapy session at The Clinic, I went upstairs to talk to Marilyn, my Medicaid Services coordinator, about the situation with the Sunday Program. She clucked her teeth sympathetically and told me very apologetically that The Clinic wasn't equipped to handle Dovi - which I expected. We started exploring different possible programs - <a href="https://www.otsar.org/sunday-holiday-program">Otsar</a> ran one, as did <a href="http://www.ohelfamily.org/?q=bais_ezra/overview">Ohel</a>. Marilyn filled out the application and faxed it, and we were still hopeful that Dovi's old program would still keep him. I was very down about the situation and cried bitter tears. "How can it be," I asked Marilyn, "that such a delicious, lovable boy as Dovi, who has never hurt a fly and is afflicted with a condition he has not asked for, should be tossed around like a ball? Nobody wants my delicious little boy. It makes me so sad." There were tears in Marilyn's eyes as well and she wished she could fix this - but knew that she couldn't.<br />
<br />
(Yes, I can already see the lynch mob with pitchforks coming at me in the comments section, yelling at me that it appears like *I* didn't want my own little boy either. I'm going to head off the comments right now. Dovi was very much loved and cherished at home. That does not diminish the level of difficulty in caring for him on a daily basis. Having a program on Sunday was <i>crucial</i>. Keeping Dovi safely and constructively occupied for hours on end is <i>exhausting</i>. Every one of Dovi's caregivers - be it teachers, paras, therapists, com hab girls, counselors, volunteers, even my very unflappable husband - would start tiring at the 2 hour mark, and by the 3 hour mark would be positively worn out. Dovi himself needed a change of venue every couple of hours. Therefore there needed to be a rotating cast of people to handle him on one given day. It was very understandable why Estelle had difficulty being with Dovi for 5 hours every week. So now try to picture a very pregnant mom with little energy, with other responsibilities to handle as well. Or, fast forward a few months later, with a newborn baby whose schedule is unpredictable and whose safety is paramount. Dovi <i>needed</i> a structured program on days off from school. Being confined to his house all day would drive him crazy, and it wasn't safe for me to be in charge of a newborn baby <i>and</i> a one-on-one high-needs child like Dovi. This does not mean he wasn't very much loved and cherished. It just meant that I needed help. Any comments that will be made to insinuate that I didn't want to take care of Dovi either, will not be helpful and will also be untrue.)<br />
<br />
The next day, The Early Childhood Center hosted an evening support event, with its speaker being <a href="http://agudathisrael.org/wp-content/uploads/2015/02/Rabbi-Yaakov-Reisman-speaking-at-the-Siyum-HaShas.jpg">Rabbi Reisman</a>. Rabbi Reisman is a parent of four special needs children, who are now adults. He did not specify what they have, but it sounded like a cross between high-functioning autism and general developmental disability. He told over a few cute stories involving his children, and his humor put a smile on my face despite the pain and stress I was feeling. Soon the tone of his talk changed. He began speaking about the necessity to consider residential placement if the family is affected by the behavior or overwhelming needs of the special needs individual. My heart started racing. I squirmed uncomfortably. This was exactly not what I wanted to hear right now. I wanted to hear that keeping a special needs child home as long as possible was paramount. <i>Of course Rabbi Reisman can talk this way</i>, I thought bitterly. His children had left home as adults, and they were living in a frum place. As a matter of fact, the true story goes like this: When Rabbi Reisman moved to a new, larger home, he donated his old house to to one of the organizations that runs supportive living apartments. His own house became the group home for his four children. They remained living in their old, comfortable environment; and they needed minimal help, since they were largely independent adults who simply needed a supportive living environment out of their own home. Dovi's situation was extremely different - he was all of five years old, there were no Jewish options for him, and I refused to consider alternate options at the moment.<br />
<br />
But his talk left me with food for thought. <i>Uncomfortable</i>, unpalatable food.<br />
<br />
When I arrived home I shared the content of the speech with my sister. To my absolute horror, she agreed with Rabbi Reisman.<br />
<br />
"Look," she said, as diplomatically as she could. "I'm all for offering you emotional support. But you have been complaining <i>non stop</i> for the past couple of months how impossibly difficult your life is, and how unmanageable the situation with Dovi is, etc. etc.... I'm not gonna go as far as to say that I'm getting tired of your complaints - because I could <i>never</i> put myself in your shoes; what you're going through is every bit as hard as you're describing. But... you're not doing anything to help yourself. You have two options here: Either accept the fact that Dovi is the axis of your life, and every single aspect of your life for the rest of time as we can see it, will be dependent on what Dovi is doing at the time; or the second option, which will undoubtedly hard for you to face: to seriously consider placing Dovi in a facility. Continuing in this status quo - ripping yourself to shreds to keep your family afloat, and then griping about it because it's too much for you - is draining, on yourself and on your loved ones. Something's gotta give! Either you accept that this is your reality and not kvetch about it so much, or fix the situation."<br />
<br />
I was stunned.<br />
<br />
My sister is a wonderful and brilliant person who, to be honest, totally should be a life coach. She has this knack of analyzing a situation into simplicity and reframing it in ways that boggle your mind. What she said made every bit of sense. But I could not and would not accept it. I was horrified. I was not placing Dovi in a facility anytime soon! The other option - complaining less - would be difficult to implement, but I could try!<br />
<br />
That evening, Mrs. Director called me back again. She apologized profusely up and down, but the plan was a bust. Dovi could not be accommodated for September 2013 at the Sunday Respite Program. She felt very bad about it - but the decision was final.<br />
<br />
I began spiraling downward fast again. I was drowning and gasping for air.<br />
<br />
There was only one person who could make this right for me - Linda, my amazing therapist. She would surely take my side, and give me tools to cope with the maelstrom swirling around me.<br />
<br />
At my session on June 13, Linda surprised me by taking my sister's side. What?! There was no end to the betrayals!<br />
<br />
Linda did not tell me to jump up and get rid of Dovi that afternoon. She encouraged me to start exploring the field. To spend the next year researching; find out what facilities there are, which ones are better than others, what the process entailed. Just an information search - so that when I felt fully ready, I would know how to proceed. The final decision lay with me; no one would forcefully wrest Dovi from my arms. Being highly pregnant also meant I was highly emotional, and this was not the time to make any weighty decisions. In any event, Dovi would be going to summer camp in 2 1/2 weeks; I would find out that summer what it felt like to be away from Dovi on a long-term basis, and I could explore the effects his absence had on me, my marriage, and my other kid(s).<br />
<br />
What she said made sense, though it was very discombobulating. There was a queasy feeling in the pit of my stomach. It felt like the beginning of The End.<br />
<br />
I had to rush out of the Clinic since my oldest niece's 8th grade graduation was going on at the time and I had already missed half of it - I really wanted to get there in time for her solo. (Currently, at the time of this writing, she is engaged to be married! mazel tov!) But I made a detour upstairs at Marilyn and Jenna's office to sign some paperwork. I told Marilyn, shaking my head, that I was going through a maelstrom of emotions due to the added pressure from all sides to start looking into placing Dovi. I shared with her my extreme hesitation; I knew there were no residences to be had for little boys, and I didn't feel ready to look into residential schools. Whenever that topic came up, all I could think of was a little boy from the community who had gone to live in a residential school out of state at age five. I don't know if I ever mentioned him on this blog and I'm too lazy to check back posts; stop me if I already did. If there ever was another child in the community who was <i>exactly</i> like Dovi, it was this little boy - whom I'll call Ted. He was equally delicious as he was endlessly hyper. Jumping onto the dining room table and swinging the chandelier was a normal thing for him; the youngest of a large family, shredding his older sisters' homework was an everyday event. His mother is from the 'previous generation' - she was nearly old enough to be my mother -- and in those days, com hab, respite, and acceptance/normalization of autism, were not in vogue. Ted's mom could not handle his existence at all, and once he aged out of preschool, she jumped through incredible hoops to get him placed. Although I'm sure he was loved and cared for very much (he has made incredible progress and today as a young adult he is very much a productive member of his society), the image of a helpless five year old child living a plane ride away, without anyone familiar to comfort him when he cried at night, still creates a golf-ball sized lump in my throat. Dovi was <b>not</b> going to be the next Ted. His time with his family could not end just yet!<br />
<br />
Marilyn sympathized with my dilemma. "You know something?" she said, picking up the phone. "I happen to know that the Women's League Baby Home has a vacancy right now. I'm going to put a good word in for you." And she began dialing.<br />
<br />
"NO!" I cried out in panic. "Don't call them! I'm not ready!"<br />
<br />
"Don't worry," she soothed. "Making a phone call doesn't mean he's going anywhere anytime soon. At least let them hear about Dovi. I doubt they'll take him; the Babies' Home is for medically challenged children, and they can't have someone as active as Dovi around. But it doesn't hurt to call."<br />
<br />
But just the sight of Marilyn calling a children's home to inquire about the availability of a bed was causing a hysterical reaction inside me. I burst into tears, begging her to hang up the phone.<br />
<br />
Meanwhile in the other room, Jenna got on the phone to call Jennifer, the director of the OPWDD. "I'm here with Mrs. K . It's a desperate case. Their son is very difficult; it's an emergency; we need to find him a bed somewhere - " I almost lunged at her, begging her to hang up the phone. The last thing I needed was for Jennifer to get alarmed and sic Social Services on me. "Don't make it out to be so bad!' I mouthed through my tears. "I <i>don't</i> want to place Dovi yet! I'm only exploring the idea!"<br />
<br />
I was just completely incoherent at that point. It was all too much. A simple fact-finding therapy session with Linda had morphed into an instant campaign to start the placement ball rolling, and I <i>did not want that right now.</i> My MSC team was trying to help me - but I was not ready.<br />
<br />
I was incredibly late for my niece's graduation performance. I dashed out of the Clinic through a blinding haze of tears. <i>So this is it? This is what my life is going to be here from now on? Fighting the tides, the pressure exerted by well-meaning, helpful people who want the best for Dovi and for me, without realizing there is so much more beneath the surface? </i>Was this my new fight? Silencing the pro-placement voices? Battling my heart against my brain? The war could kill me.<br />
<br />
I arrived at the graduation ballroom, to the swell of beautiful, moving music, perfectly appropriate for the rite of passage of a teenage girl. That was exactly what I did not need at that moment - or maybe I did. It was hard to hold back the tears, because I looked ridiculous - my face was puffy and blotchy from all the crying I had done at the Clinic and on the way to the graduation. The emotion-filled singing from the innocent, fresh-faced 14-year old girls on the stage did not help. I was a blubbering mess. I texted an explanation and apology to my mother and my sister, that I would speak to them later about my unusual bout of mourning and sobbing.<br />
<br />
Of course, eventually I calmed down, and tried to examine the situation logically. Reflecting later on my visceral reaction on June 13, I know that it was completely normal. On that pivotal day I entered a new phase in the journey across the stormy seas. Almost a year earlier, when my husband had first raised the idea of Dovi living elsewhere, I unknowingly jumpstarted the mourning process, a new Five Stages of Grief. On that day I firmly hit the denial button. <i>No</i>, my brain screamed, <i>Dovi is not going to leave home at a young age. It's not happening!</i> The next 11 months as I continued struggling to make life with Dovi liveable, I continued the firm denial. On June 13, when all road signs pivoted in unison, pointing at the long, bumpy road leading to Placement, I moved on to Anger. All those tears and angst were a form of anger; a deep seated feeling of upset that this is actually going to happen, even if not overnight. The next few years, until we actually began the process that resulted in Dovi's current placement, were chock-full of Bargaining. I was ready to do <i>anything</i> to keep Dovi home. And I did a whole, whole lot.<br />
<br />
It is now 9:20 pm, and I have been writing this post since roughly 11:30 a.m. It has taken a LOT out of me to revisit that gut-wrenching day. But there is a huge sense of relief. This was one of the hardest posts I had to write thus far. Next, I will discuss how I dealt with the fallout of June 13, and fill in the blanks of the days leading up to Dovi's first long-term foray away from home - the incredible summer camp that would host him for four amazing summers. I'm letting you know now, thought, that it will be weeks, perhaps even months, before my next blog post. Life will be pretty busy now, between Chanukah, a nephew's wedding, and a months-long home-organizing project I would like to start soon. Maybe sign up for email updates so you know when a new post is up.<br />
<br />
Meantime, have a wonderful, amazing Chanukah - and as always, I leave you with this hidden 'egg' if you will - a recent photo of our yummy boy!<br />
<br />
Love you, Dovi-boy. Happy Chanukah to you. I can't wait to see you again in 2 weeks, IY"H.<br />
<br />
<span style="background-color: white; color: #111111; white-space: pre-wrap;"><i><span style="font-family: inherit;">And when the night wind starts to sing a lonesome lullaby
</span></i></span><br />
<span style="background-color: white; color: #111111; white-space: pre-wrap;"><span style="font-family: inherit;"><i>It helps to think we're sleeping underneath the same big sky...</i>.</span></span><br />
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<span style="background-color: white; color: #111111; white-space: pre-wrap;"><span style="font-family: inherit;">P.S. Full disclosure: After I finished writing this, I cried.</span></span>Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com2tag:blogger.com,1999:blog-6690082237623994514.post-43720588910721364512017-10-21T20:36:00.001-07:002017-10-21T20:36:36.146-07:00The Other OptionMy sincere apologies for the very long delay in posting this. It's still not the apex of the post I'm aiming for, which is to relate the gut-wrenching moment when seeking placement for Dovi became a more serious reality, but I'm getting there. It's a long story. It can't be told on one foot. And I want to tell it the right way - this is the only way to memorialize it. This is my life story.<br />
<br />
I started writing this post in late August, a day after I visited Dovi (that's like 3 visits ago, lol. I'm still going every 3 weeks, religiously!) and simply didn't get around to finish it, because we came home from summer vacation a few days later and fell headfirst into the month of Tishrei. Then I got very busy with my very consuming <a href="http://ebay.to/2ypCiE8">ebay</a> hobby. But the positive feedback from about a dozen of you spurred me on to get this piece finished, even if it'll be a month until the next one...<br />
<br />
So here's the part I wrote back in August, and then I'll continue.<br />
<br />
******<br />
<br />
So, let's pick up the narrative from the previous entry, where I described in brief, the evolution in New York from oversized impersonal / abusive state facilities to small, personalized group homes.<br />
<br />
As I started saying, when I began attending the local support groups, I was flummoxed that the main topic of discussion was about placement opportunities -- or rather, the lack thereof.<br />
<br />
It seemed that despite the plethora of MSC agencies running residential facilities, there were simply no beds to be found. Apparently, the OPWDD had put a freeze on building new homes, preferring that young children be kept at home at all cost. Even if the cost was the sanity and well-being of the child's family, and often the wellbeing and even safety of the child himself. The bigwigs at the OPWDD just didn't seem to comprehend the extent of the effect of the severely behaviorally challenged population. And waiting around for an available bed was about as good as doing nothing.<br />
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Although I knew it didn't pertain to me yet, I kept my eyes and ears open for whiffs of the knowledge of new Homes being built, so I could apprise my friends of the news. I would call them up and inform them of what I heard. More often than not, it turned out that the agency was just canvassing for lists of children who needed a placement so that they could present the state with a plan. Then the waiting around for approval began, and it could take years.<br />
<br />
Some of the kids in our support group really, really needed to be placed. They were older teens whose presence was really wreaking havoc on the rest of the family. Some of the ladies in the group or their husbands had influence in Albany and they were still unable to push through for new facilities. (Eventually one girl miraculously got placed, once her younger sibling was born with similar disabilities and a facility took pity on her. There was one vacancy and 8 families fighting over the bed; HaShem moved the puzzle pieces around so that she got the bed!)<br />
<br />
Among the severely autistic kids in my group, <a href="http://www.autism-parenting.com/2017/08/three-cheers-for-camp.html">Josh </a>and <a href="http://www.autism-parenting.com/2013/01/the-vital-importance-of-getting-support.html">Zevi </a>are the most similar to Dovi. They are non verbal and hyperactive with little danger awareness. As all children, they differ in their personalities and abilities and their level of smarts, but when it comes to describing their behaviors and constant need for 1:1 supervision, they fall into the same category. At the time of this narrative, Dovi was 4 years old, Josh was 10, and Zevi was 8. Yolanda had no interest whatsoever in placement for Josh; although caring for him was very time consuming, she had a system in place for him and was managing to survive. He was in a good school; she had a home health aide for the morning routine, com-hab/respite families for after school, and when he came home in the evenings she kept him contained in his room until her other children were in bed. It wasn't ideal, but she wasn't quite falling apart. Josh was her oldest child and she had poured her heart and soul into helping him. He was toilet trained and communicating somewhat with a device. Up to that prior summer when he was kicked out of Camp A, he'd had summer camp too. Sylvia <i>was </i>trying to get Zevi into long-term placement. Her situation differed greatly from Yolanda's; Zevi is the third child of a large, growing family, and it was absolutely impossible to care for him and keep him safe at the same time as her other children. Although Sylvia and I were really close, I often judged her for that decision and constantly debated her, trying to make her realize that she could handle Zevi better than she thought. She refused to take help into the house, instead sending Zevi out as often as humanly possible. After months of hard work and research, she had a perfect setup of resources for him. He attended<a href="http://www.autism-parenting.com/2013/03/the-most-difficult-decision-ive-ever.html#more"> School E</a> and Camp A, which are affiliated. School E has an afterschool and legal holiday program, and is affiliated with a Sunday program (the same Dovi went to at the time). His counselor at the Sunday program also did com-hab for him every afternoon; he came off the bus directly to her house, where she played with him, fed him supper, bathed him, put him in pajamas, and brought him home ready for bed. For Shabbos and YomTov, Sylvia alternated between four options: The <a href="http://www.autism-parenting.com/2013/02/and-3rd-angel-was-best-of-them-all.html">Respite House</a>, <a href="http://www.autism-parenting.com/2017/07/just-boring-post-nothing-to-see-here.html">Mrs. G.</a>, the com-hab girl's house, and her parents -- she had a few teenage sisters who loved taking care of Zevi in their large surburban house. So despite dealing with Dovi-level constant action and messes, and back-to-back pregnancies and babies, her house functioned without missing a beat, like any other family.<br />
<br />
Then, the proverbial 'crud' hit the fan, and things started going south really quickly for both Yolanda and Sylvia. Josh was physically aggressive towards his younger siblings and they were afraid of him. It came to the point that his little sister started developing tics from anxiety of being around Josh, and she told her teacher in school that she was afraid of her brother. As for Zevi, Sylvia's support network started fraying suddenly in one fell swoop. His devoted com-hab girl got engaged and married at a very young age, which took Sylvia by surprise. Shortly afterward, one of Sylvia's sisters got engaged and married. She was suddenly short two Shabbos resources, and had to scramble to find new com-hab options.<br />
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<br />
<i>Continuing on 10/21: Whoa, I can't believe I wrote all that. I don't even know myself what I wrote! Why am I telling other people's stories? I myself am confused where my narrative is heading. THere's gotta be a point somewhere, no? Okay, let me try to pick it up somehow.)</i><br />
<i><br /></i>
When Yolanda came to the realization that Josh needed to be placed because of the psychological damage his presence was causing the younger children, she was at a loss. She did a boatload of research; thanks to her, I later had the phone numbers and contact info of all the different agencies who run group homes. She hit a brick wall everywhere she turned, until she got a sliver of a glimmer of hope; one agency was seriously working towards building a home for a handful of boys with autism. Yolanda left no stone unturned to secure a place for Josh. A simple phone call to an influential woman in a prominent Jewish organization did the trick, and Josh was slated to enter the new residence. A second slot went to another boy with a similar behavior profile whose mother I knew well - she attended our support group. Zevi's service coordinator also got him a coveted slot in that residence. Whenever it would open. It could take months, it could take years. They had no idea when it would be.<br />
<div>
<br /></div>
I'm digressing here for a moment, but I want to add this little anecdote to the tale as it's in the correct chronological order and will have bearing on my own story later.<br />
<br />
That summer, I advertised that I was looking for com hab workers after school hours. I received many phone calls, which resulted in my lifesavers for that year, Cerie and Toby. Among the people I rejected was a man I will call William. I was leery at the idea of a man working with Dovi - it didn't seem normal that a normal adult male was looking to be a com hab worker for a little boy, it was usually something high school and post-high school girls did on the side. But when I called him I was surprised to find out that I knew him rather well - he's a cousin of mine, and he had actually been my oldest son Chaim's bus driver 2 years earlier! For some mysterious reason he had been let go of his job, and he was now running a playgroup for little boys ages 2-3. Now I understood why this job interested him; he wasn't quite making ends meet to feed his large family, and dealing with little boys, even if they had disabilities, was up his alley. He had his own little school bus with which to pick up and drop off Dovi, and a playgroup full of toys that Dovi could potentially play with. However, I didn't think he could handle Dovi at all. He had no experience with the autistic population, and I didn't think it would be a good fit. At that point Dovi wasn't as interactive as he is today and was spending a lot of his time just making messes and mischief and mayhem; I couldn't imagine how William, a 40 year old man who had never done this before, would have the patience to chase Dovi around his neat, cleaned-up playgroup for 2 hours. I regretfully declined the offer.<br />
<br />
Imagine my surprise several months later when I found out who Sylvia's new com hab worker was in place of her newly married com-hab girl - William! He was managing Zevi just fine; playing with him at the playgroup, occupying him, giving him supper, and then bringing him back home to her house where - this made me raise my eyebrows - he bathed Zevi and put him in pj's, and then he left. (Why she couldnt do it herself or get an aide for that, is her business, I guess).<br />
<br />
I expressed my surprise to Sylvia about William doing the job, but she told me she was really happy with him and it was working out great. We had a long discussion about the endless search for com hab workers and we were commiserating about how finding good help for kids like ours was a lifelong struggle, and as they get older, heavier, stronger and more stubborn, it's nigh impossible to find girls interested in this job, and finding normal men who are capable of doing this isn't easy either. It was a sobering realization. This would go on to be my own reality for the next few years as well. It is draining.<br />
<br />
To replace her sister who no longer took Zevi for Shabbos, Sylvia advertised that she was looking for families to have her child for Shabbos. The ad was answered by a family down the block! They would take Zevi from Shabbos morning until bedtime. Now Sylvia had a new rotation in place: William for after school, Mrs. G., The Respite House, and the neighbors taking alternate Shabbosos; and of course, the Sunday and legal holiday program. Just coordinating and juggling all that took a huge toll on her.<br />
<br />
As the winter dragged on and there seemed to be no hint of the home she was waiting for coming to fruition, Sylvia asked me one day, "Did you ever hear of a place called 'The Academy of The Future'"? (Name has been changed, obviously. I will refer to it as TATF from here on, to make things easier.) Nope, I had never heard of it. And when Sylvia began to explain, a whole new - and scary -world opened up to me.<br />
<br />
Apparently, group homes aren't the only way to go. There is something I had never heard of, called Residential Schools. Funded both by the OPWDD and NYC Board of Ed, they're another option to consider. The part that's daunting, obviously, is that these places are not run by Jewish staff, do not - for the most part - offer kosher food, and tend to be a far distance away.<br />
<br />
Sylvia had visited TATF in the summer, and was blown away. The biggest attractive quality of TATF is its location - it's in the scenic Catskill Mountains, where many families like mine spend their summers. That meant it would be easy to visit in the summer, not too difficult to access in the winter, with Coach USA buses - and best of all, her son would have a 'camp experience' all year round. Kids like Zevi and Dovi don't do well living in a cramped city apartment and tend to do very well in the summer when they're in camp. That's one of the reasons everyone wants to get their kids into one of the Hamaspik facilities - they're large, airy, clean, and upstate. Living in a group home in Brooklyn is nice, but living upstate - even better. Sylvia was impressed with the large, clean living facilities and the acres and acres of room to explore outdoors. They had an excellent school as well, with an indoor pool, excellent therapy, and a new autism program (they were geared towards physically challenged children until recently). Another attraction of TATF is its sizeable Jewish student population; there are quite a few residential students from frum, kosher-keeping homes, and after a lot of negotiation and discussion they allowed kosher-keeping students to store their own food in the kitchens, which is a big draw. Sylvia was highly interested in getting Zevi into TATF, but even that was an uphill battle. She described the process to me, and it made my head hurt.<br />
<br />
Her first step was to call an IEP meeting and explain to the school board representative that her son wasn't doing well anymore at his current school and needed a more round-the-clock program so he would have carryover in his residential location for the skills he learned during the day, and with her large family and busy life she couldn't provide that. Once that went through, the Board of Ed had to make their decision, and if her son was approved, his information would be sent out to different residential schools in New York, some which were better than others. She had to hope and pray that TATF would have an opening for her son for the next school year; otherwise she'd be forced to look into other, less desirable schools.<br />
<br />
It made me sick to my stomach to even think of such an option. 2 hours away? in a non-Jewish environment? Why couldn't Sylvia just wait for the new home in Brooklyn to be built? But it was clear from all our phone calls that taking care of Zevi was extremely draining , and it wasn't even good for him to be bounced around from respite house to respite family to com hab worker to sunday program and so forth; he needed one solid place to call home that could help him. Not only that - the school at TATF was excellent, and would be able teach Zevi to skills that his current school couldn't provide.<br />
<br />
Sylvia had an uphill battle getting Zevi approved for residential schooling. School E wasn't really cooperating with her request; they felt he was doing pretty well in their program, and didn't really understand why Sylvia wanted to go this route. Her first request fell through. She called for another IEP meeting and presented the rep with a letter from Zevi's summer camp informing her that unless his aggression would decrease, he might not be able to return that summer. This clinched it, and the BOE rep promised to get the balls rolling.<br />
<br />
I shuddered at the thought that one day down the line I would possibly find myself in the same shoes, having to make this impossibly gut-wrenching decision for my own child. I couldn't bear to even think about it.<br />
<br />
Although it would be a couple of years until I would actually find myself in that position, things were starting to build up to a crescendo, culminating in the day my stomach dropped out of me and the floodgates opened - a precursor to what was awaiting me down the line. Stay tuned for the gut-wrenching story of June 13, 2013. Have some tissues ready.<br />
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Til then, I leave you with this delicious picture, a treat for reading all the way to the end.<br />
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<br />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com3tag:blogger.com,1999:blog-6690082237623994514.post-39598483004255424202017-10-17T04:58:00.001-07:002017-10-17T04:58:56.776-07:00I am touched!!!4 comments + 2 private emails. I'm moved that there are still people out there who are interested in hearing what I have to say - and I'm a total stranger! I will continue, IYH, though maybe not immediately - in a week or two, bli neder. Thanks so much ladies!Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-28312896838472926022017-10-16T08:01:00.001-07:002017-10-16T08:01:35.222-07:00Continue?Hello everyone!<br />
Well, the hectic month of Tishrei and all the holidays, are behind us. Now the question dangling in the air is, should I continue this journey?<br />
Dredging up all the difficult memories is rough. Spending hours writing about it, with little payoff, feels like a bit of a waste of time.<br />
Life marches on. My ebay 'business' took on a life of its own, running away from me at a speed I can't keep up. (shameless plug: http://ebay.to/2ypCiE8) .<br />
At this point, I have no idea who my audience is, and if I even still have an audience. I don't know if it pays to keep trying to revive this thing. It takes way too much time, and I need to know there are people still interested in reading about our journey with Dovi.<br />
Please drop me a line if you are still checking out the blog and if you want me to continue.<br />
Email: Incog71@gmail.com, or in the comments below.<br />
I am purposely not linking this anywhere, to gauge whether there are readers who check the blog on their own (or via email sign up.)<br />
Hope to hear from you!<br />
(P.S.: Dovi is doing relatively well at his residence. He's making progress in some areas, while continuing to have trouble with some of his deep-rooted behaviors. But all in all, it's all good, thank G-d.)Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com10tag:blogger.com,1999:blog-6690082237623994514.post-92044037413732503612017-09-04T07:37:00.001-07:002017-09-04T07:37:39.188-07:00DelayI'm so sorry I'm leaving you hanging in the middle of a suspenseful story. (Un)fortunately, summer vacation is over and real life has gotten in the way. Between getting home from the country, getting the kids back on school schedule, and now with the High Holidays approaching and lots of cooking and shopping to do, not to mention a huge shipment of items to put on ebay, I have to put the blog on hold for a very short time. I'm in the middle of writing Part 2 of the post though, and it will be a doozy, so stay tuned. Sorry for the delay, but it'll be worth it.Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-10134364143700203422017-08-20T16:46:00.002-07:002017-08-20T16:46:46.433-07:00A brief history on Jewish group homes in New YorkAfter that <a href="http://www.autism-parenting.com/2017/02/home-away-from-home.html">earth shattering moment</a> when my husband dared bring up the idea of <i>thinking </i>about placing Dovi, my innocence was destroyed forever. While I successfully put it out of my mind for the next year, the very knowledge that Dovi was living in our home on borrowed time and his path to the future was living in a facility simmered constantly on the back burner.<br />
<br />
I had known, of course, that unless a miracle occurred and Dovi would be fully 'cured', or at the very least, toilet trained, relatively manageable, and verbal, it was his inevitable fate. But in my mind, it was far, far off into the future. There was no point WHATSOEVER on dwelling on it when Dovi was 2, 3, 4 years old.<br />
<br />
But once I joined the <a href="http://www.autism-parenting.com/2013/01/the-vital-importance-of-getting-support.html#more">support groups</a>, right from the start I realized that the favoried topics of discussion in the group were respite programs, camps, and long-term placements. I was horrified. I had come there to find more info about programs that would "cure" Dovi, not ideas that would permanently label him a disabled person who needed tons of personal care.<br />
<br />
Obviously, the women in the support group who were talking 'placement' had children way older than Dovi. Their kids were in their teens and low 20s -- with some preteens in the mix. Certainly they weren't 2 or 3 years old. And they were worried; residential care facilities were few, and waiting lists were long.<br />
<br />
I largely tuned them out. One day, down the line, the info would come in handy. Not right now. Now I needed information about school. And camp. And home health aides. And yes, respite options. Not long-term care.<br />
<br />
But after that pivotal conversation with my husband, I began keeping my eyes and ears wider open than before.<br />
<br />
The stark truth, however, was pretty abysmal.<br />
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Dozens of years ago, the only option for children like Dovi was the infamous, horrific <a href="https://en.wikipedia.org/wiki/Willowbrook_State_School">Willowbrook State School</a> and similar horrible places. When I started watching the <a href="https://www.youtube.com/watch?v=dbiYJkiX-Dg">Geraldo Rivera expose</a> on Willowbrook I could not get past the first two minutes. It is that horrific. How the world could allow human beings to be treated like animals, like objects, is beyond me. After Willowbrook was exposed, the state started closing all the state schools and developmental centers, and gave the care and decision making back to families. Small, community-based group homes were formed, and the occupants of the state facilities were eased into these group homes. <br />
<br />
Slowly, organizations began forming within the Jewish community as well, and group homes were built. First on the scene was <a href="http://makordisabilityservices.org/childrens-residential.php">Womens League</a>, followed by <a href="https://jewishboard.org/listing/mishkon/">Mishkon</a>, <a href="http://www.hasccenter.org/residential_services.php">HASC</a>, <a href="https://www.ohelfamily.org/?q=bais_ezra/residential_programs">Ohel</a>, and <a href="http://www.pesachtikvah.org/developmentally_disabled">Pesach Tikvah</a>. Once the teens and adults were safely placed in new group homes, the OMRDD (Office of Mental Retardation and Developmental Disabilities), which was renamed OPWDD several years ago with the advent of political correctness, began encouraging people to keep their disabled children at home. No longer did babies with Down Syndrome, Cerebral Palsy, Spina bifida, or older kids who were deemed 'mentally retarded' but were probably autistic, globally delayed, or otherwise developmentally disabled, cast off and institutionalized. The new modus operandi was to provide a ton of support and assistance to the families, which was a lot cheaper than building more expensive group homes. Thus, the emergence of com-hab -- then known as Residential Habilitation - and Respite services turned into a wildly popular avenue for people who had an affinity for the special needs population. It became a building step for those who wanted careers in special ed. Schools for children with special needs opened up, and it became a badge of prestige for a post-seminary student to get a degree in special ed or related therapies. Suddenly, these children were no longer 'closet children' and were integrated, mainstreamed, or given the best education possible to reach their highest potential.<br />
<br />
But...there were still disabled children who needed a home. Kids with disabilities and medical complications were still being born, and not every family could handle it. Sometimes their medical needs or disabilities were overwhelming and very disruptive to the rest of the family. Placing a child in this new era of inclusion and acceptance became a heartbreaking choice, instead of a given.<br />
<br />
Beautiful, caring facilities for medically compromised or multiply disabled children exist around New York. There is <a href="https://setonpediatric.org/">Elizabeth Seton</a> in Yonkers, <a href="http://stmaryskids.org/contact-information/">St. Mary's</a> on Long Island, and <a href="http://www.sunshinechildrenshome.org/">Sunshine</a> in Westchester. There are few others further north in upstate New York as well.<br />
<br />
For religious Jewish families, placing a child in a facility that does not offer Jewish services like kosher food and celebrating Shabbos and holidays posed a huge dilemma. Obviously, if a child needs care, if the family is falling apart, and a Jewish placement is not available, it is permissible to place a child in any loving facility. It is, however, a very difficult concession to make.<br />
<br />
Several years ago, Sunshine was purchased by a religious family from Monroe, NY, and they made it multi-cultural and accommodating of every family's religious preference. This way, the Jewish children get kosher food, have holidays celebrated and Shabbos accommodations provided for families, and it has become a very sought after facility for Jewish families. Other facilities further upstate are accommodating of kosher food for their residents -- I am not naming names because those will figure later in the story and I'd rather not say their names right now.<br />
<br />
In Jewish communities in upstate New York, new Medicaid Service Coordination organizations started sprouting up as well, such as <a href="https://www.yedeichesed.org/residential">Yedei Chesed</a>; and the crown jewel of respite services, <a href="http://www.hamaspikorange.org/">Hamaspik</a>. They grew so big they eventually expanded into <a href="http://www.hamaspikrockland.org/">Rockland County</a> and even <a href="http://www.hamaspikkings.org/">Brooklyn</a>, building beautiful group homes in each location. Last to come on the scene with group homes were <a href="http://humancareservices.org/">Human Care Services</a> and <a href="http://www.rayim.org/residential_services.php">Rayim</a>. (Forgive me if I accidentally left anyone out. There are dozens of wonderful Medicad Services Coordination organizations, but these are the ones I am aware of operating Jewish group homes in New York. If I omitted anyone, please let me know.)<br />
<br />
You would think that with a plethora of group homes run by frum agencies, there wouldn't be a shortage of beds for the special needs population. I discovered two stark truths: There were absolutely no vacancies anywhere; and the agencies are kind of selective whom they accept into their facilities. Children with severe behavior issues, like Dovi, Zevi, Josh, and others, are not first choice. They are simply not equipped to handle them.<br />
<br />
The women in my support groups were urging everyone to place their kid on every waiting list possible, and to call every month. Make yourself be heard. Make yourself be known. Eventually, you will get somewhere.<br />
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The only question is, will the family still be sane by the time their child gets accepted somewhere.<br />
<br />
I can cite story after heartbreaking story of families that were hanging on by their last, unraveling thread of sanity. There were holes in the walls. The child was sleeping in a locked bedroom or a zippered tent - like Dovi - for his or her own safety. The child would smear his or her diapers on the wall. The child would be up for hours at night. The child could never be left alone, for a minute. The families were teetering on the brink of insanity.<br />
<br />
But they were still sitting on a waiting list.<br />
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<span style="font-size: x-small;">Against my own wisdom an instict I am ending this blog entry here, because I realized that the rest of this entry will be twice as long as the part you have already read, and I don't know how long your attention span is. In addition, I might not be able to finish the entire story tonight, and then I'll be pressured to do it tomorrow, when I have other things to do. So, consider this part 1, the introduction, to a very climactic incident that took place on June 13, 3 weeks before Dovi went to camp. If I will still get to write Part 2 tonight, I will post it in the morning, so that the 2 entries get sent to the email inboxes of the subscribers to this blog on 2 separate days.</span><br />
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Stay tuned.<br />
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Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-8670393436217078682017-08-17T08:24:00.001-07:002017-08-17T08:24:56.882-07:00The rise and fall of Leticia"Good help is so hard to find" is the truest sentence I've ever heard.<br />
<br />
I spent 5 1/2 years of my life networking, recruiting, interviewing, training, and losing dozens and dozens of people who help with Dovi.<br />
<br />
There were com hab girls, respite families, volunteers, behavior trainers, camp counselors, and then of course, the Home Health Aides.<br />
<br />
I briefly wrote about t<a href="http://www.autism-parenting.com/2013/03/home-health-hindrance-or-aide.html">he process to get Dovi qualified for a homecare worker</a>, and the first 2 aides who walked in and out of my life, <a href="http://www.autism-parenting.com/2013/03/home-health-homegirl.html">Danuta and Yvonne.</a> (I still wonder to this day what became of her and from time to time I look up her daughters on Facebook hoping to catch a glimpse of her whereabouts.)<br />
<br />
After that, the agency sent Leticia, who at first seemed to be a lifesaver but soon turned into a nightmare.<br />
<br />
I also learned that there's no such thing as a perfect homecare worker. You have to overlook a lot of things, but you also can't let yourself be stepped on. I was so afraid to let her go, and was terrified of change and of going through rosters of new people before we find someone good. It would take another long-term aide and another agency for me to finally find an excellent agency who always had a roster of great aides available and provided fantastic service. I just did not get good service from this first agency, and if a problem crept up with Leticia, I didn't feel like I had anyone to talk to.<br />
<br />
But I'm getting very ahead of myself. Let's draw back the curtain and delve into this.<br />
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<a href="http://www.autism-parenting.com/2013/03/summertime-livin-take-3.html">When Leticia first started, she was a breath of fresh air.</a> She took wonderful care of Dovi, cleaned up after him, and kept to herself. After the disaster that was Danuta, Leticia was exactly what we needed. But after two weeks or so, she started getting a bit lazy. She would walk through the door, sit down with her phone, and needed to be cajoled to do anything. At that point Dovi was at a com-hab worker every day until 6 pm, and although Leticia's job officially began at 5, I asked her to come at 5:30 because it felt a little bizarre for met to watch her sit around and do nothing until Dovi came home. Occasionally she swept up a bit here and there, and maybe straightened up his room, but she wasn't the type of person to look around for extra work. I knew the rules clearly: her job was <i>only</i> to clean up after Dovi and help me with him. Unlike many other people, who use the HHA as cleaning help and personal assistant, I never asked her to do any extra work, ever. But she rarely showed up at 5:30; it was usually more like 5:55, and there were a handful of times that Dovi arrived home before she came. She had a long train ride, and had to drop off her children with her grandmother first, so she sometimes ended up running late.<br />
<br />
Then Dovi would come home around 6:00, and Leticia would feed him supper and put him in the bath. Between supper and bathtime, she usually put on a video for him and sat quietly next to him while surfing her phone. She didn't interact much with him. It was a bit upsetting.<br />
<br />
My husband usually came home from work shortly before 7:00, and he would take over from there; he would put Dovi in pajamas, give him his meds and put him into bed. Then Leticia would grab a broom and tidy up quickly, and by 7:05 she was out the door. She was taking a nursing course and had to be in night school at 7:30, so she could never hang around a minute longer. She never wanted to work any extra hours, ever - not that I even tried to ask her, because she was a single mother of 2 small children and wasn't available for extra hours. She never clocked in or out, never asked me to sign time sheets, and never explained why. (I think she signed them herself...) So basically, although her job was from 5-8, she was there for exactly one hour, and did almost nothing.<br />
<br />
But it was another human being in the house helping me, and it was a relief.<br />
<br />
After 3 months with Leticia we went up to the country for the summer, and I briefly considered whether I should let her go and get someone else - I knew we could do so much better. But after hearing so many horror stories from other mothers of having aides who never showed up, were downright abusive, or did <i>nothing</i>, I knew I couldn't really afford to be choosy. I also have a very, very hard time firing staff; I hate confrontation and find it hard to speak up and make my needs known, and I very often end up being strung along until things reach explosion levels.<br />
<br />
When we came home after the summer,<a href="http://www.autism-parenting.com/2013/04/strollers-for-growing-special-needs.html"> Dovi was <i>delighted</i> to her and ran to her for a hug</a>. It seemed we were back on solid footing and Leticia would be our family's lifesaver.<br />
<br />
But very soon, it started to deteriorate rapidly.<br />
<br />
For starters, Leticia and I have very different personalities and we would rub each other the wrong way. I have a difficult time taking criticism, and I didn't like when she tried to tell me how to parent. She also had a way of talking that made every single thing she said, sound accusatory and argumentative. Then she would get sulky and defensive, and turn things around to make me sound bad. It was very difficult to deal with. She was very rigid about her hours and was very reluctant to make changes, which is a huge problem with a child like Dovi who has an erratic school schedule, coupled with the Jewish calendar. All of the later aides were way more flexible and tried their utmost to accommodate me, but Leticia wouldn't budge.<br />
<br />
For example, on Labor Day I asked her to come a bit earlier since Dovi had no school all day and it would be tough to wait until she waltzed in at 6 p.m. I asked her if she could try to be prompt and be there by 5. At 5:00 she hadn't shown yet and I texted her to find out if she was on her way. No, she had just dropped off her kids and was getting on the train now. I was extremely disappointed and let her know that I was frustrated, because I had been counting on her, especially on a long day with no school. She retorted that it was a holiday, and she really shouldn't be working at all, and I would never work on my holidays! Um, the two don't compare; Labor Day is not a religious holiday -- I could not work on Jewish holidays due to religious restrictions -- and if she'd wanted to the day off, I could've asked for a replacement! Her need to always be right, and never concede she was wrong, drove me crazy. Of course *I* ended up apologizing to her....<br />
<br />
Yom Kippur was the first time I really felt how great it was to have an aide. I asked her to come in the morning instead of evening, and she came indeed - for two whole hours. She turned on Dovi's DVD, and I was able to daven a bit. Then she left, and I was left to entertain Dovi for another 6 hours while I was fasting.<br />
<br />
(In later years when I merited to have some really incredible aides who went above and beyond their duties and spent 10 hours with us on Shabbos and holidays I couldn't think back how I had managed all those Shabbosos and holidays, such as Yom Kippur, without any help or just 2 hours of help. Having access to his favorite DVDs all day was really the only way I could survive.)<br />
<br />
Things started turning pretty bad between us once I was pregnant. I had no energy and did very little around the house. I had not yet told Leticia about it, and Dovi had started becoming a lot messier, and instead of stepping up and helping me manage the messes, she instead kept lecturing me about how I was letting Dovi get away with everything and that I was expecting her to do my job. I had no patience for any of this. Her job was not to teach me how to parent Dovi; her job was to help me with him. It was not her place, and it was getting under my skin.<br />
<br />
After Hurricane Sandy, when I was in the middle of running back and forth to the doctor for my infertility treatment, the ABA Center and I decided it was time to start toilet training Dovi. Naturally, I had to do some crazy things like give him a ton of snacks in the bathroom to keep him seated on the toilet. He ended up making a big mess and Leticia blew her top. Instead of assisting me in the project of toilet training, she berated me for letting him make a mess and refusing to clean it up. It was disturbing.<br />
<br />
As Dovi started making bigger and bigger messes, and I had less and less energy due to the first trimester of pregnancy, Leticia would often walk through the house at 5:55 pm, look at the mess in horror, and ask me how I was planning to manage with another baby. I retorted, "Maybe I'll actually get an aide who doesn't mind cleaning up!" (Ironically, it would take 3 years and 3 aides post Leticia finally find someone who kept up with Dovi's breakneck speed and cleaned up before and after him, only four months before he left home....)<br />
<br />
When I had the unfortunate CPS case, I was really scared that Leticia would tell the caseworker some half-truths about my ability manage Dovi. Thankfully, she kept quiet, relieved that no one was pointing any fingers at her, either. However, I always felt a little anxious in Leticia's presence, and a large part of my reluctance to let her go, even when I felt her presence was becoming toxic, was an unfounded fear of her making accusations against me and causing me trouble. But the actual truth is that Leticia is a very nice and well-meaning person, whose personality and attitude just didn't jive with mine. In a perfect world, I would've called up the agency as soon as I had a handful of annoying incidents and asked for a new aide. But I had no relationship with Ophelia, and I didn't feel that Leticia's behavior warranted being removed from the case. She hadn't done anything egregious; we just didn't get along.<br />
<br />
Shortly before Pesach <a href="http://www.autism-parenting.com/2017/07/spring-2013.html">Dovi came down with fever,</a> which immediately made me feel a little panicked. I was still recovering from my brush with the CPS and was very anxious to see Dovi feel better. He was sick on Wednesday and Thursday; on Friday Leticia had a long in-service that lasted all day and she called to ask if she could cancel. I was adamant that she come, even for an hour, just to give us a bit of a break. She was very miffed about it, and when she showed up, she refused to bathe Dovi, saying she will not put a child with fever in the bath. Ironically I was pretty sure Dovi had caught his cold from her, but I wouldn't tell her that. She left in a huff after half an hour, and I had a bad feeling. Monday was Erev Pesach, so I asked Leticia to come at midday instead of her usual evening time. She replied that it was no use coming if Dovi was still sick - which he was - because, according to her, she'd have to report to her supervisor that the patient was already on his sixth day of fever. If she didn't come, well, then she didn't have to report anything...<br />
<br />
The word "report" triggered a strong wave of anxiety inside of me and I gave her the day off. I felt she was manipulating me, knowing how afraid I was of the mix of agencies, Dovi's health, my own confidence in my parenting abilities, etc. We somehow muddled through that Erev Pesach day. She did come during Pesach, but I was already starting to feel a strong wave of resentment towards Leticia. It was a potent mix of pregnancy hormones, a personality clash, and the feeling that our needs were really not being met and her heart was really not in this job at all.<br />
<br />
On Fridays Dovi only had school from 9 to 11:45. His therapist had to run and catch her bus to Monsey, so we asked Leticia to come from 11:45 - 1:45, pick up Dovi, bring him home, and stay with us until my husband came home from work. Half the time she was still on the city bus or train when Dovi's therapist called me desperately that she needed to run and catch her bus. I would end up dashing out of the house and rushing to pick him up. Sometimes she came so late on Friday that my husband was already on his way home from work and it was a complete waste that she had even gotten on the train to be at my house for less than an hour. I know that commutes can be vexing and things can be out of a person's control, but it was happening too frequently. Yet, I had no one to complain to.<br />
<br />
The Friday before Memorial Day weekend, she informed us that she wouldn't be able to come on Monday or Tuesday, because she had to redo her physical exam and there would be no doctor available until Tuesday. I am pretty sure this is not true; there are certainly doctors who have office hours on Sundays or legal holidays, but putting that aside, why did she have to wait until that particular weekend to do her physical? She probably wanted to have a break from work... In later years, we would have never stood for it -- I would've requested a replacement, or even paid for her out of my own pocket just so that she could come. But when it came to Leticia, we never pressured her into anything - she was too strong-minded. So my husband and I worked really hard those 2 days, and admitted to ourselves that for all her faults, having an aide at bedtime was crucial to our ability to handle Dovi.<br />
<br />
One of my biggest weaknesses when it came to raising Dovi, was letting him get away with almost anything. It is a personality flaw I readily admit to when it comes to parenting and self control, and it's a lifetime of work for me to break through. When Dovi came home from com hab, he would head immediately for the freezer, and I would let him have popsicles and ice cream. Leticia was very upset about that, and she claimed - rightfully so - that it impeded his ability to eat nutritious food afterwards. She asked me why I didn't give him soup... or fruit... I retorted that he didn't <i>like</i> soup, or most fruits, and he likes ice cream so I let him have it. Part of the problem was that she would sit mostly glued to her phone, often with earbuds in her ears, and Dovi knew to come to me for snacks and goodies, because I readily dispensed them. And then she would get upset, saying she can't bathe him / manage him if he's hyped up on sugar. Even if her claims had merit, it was hard to take her seriously when she was not paying him much attention but sat around with earphones jammed in her ears and her eyes glued to the phone while she let him run around helter skelter, and only woke up from her stupor when it was time to give Dovi his dinner and his bath. It seemed that she wanted to be in charge and had a hard time taking directives from me.<br />
<br />
About a month before Dovi left for camp, I was informed that Dovi's Sunday program, which had been my lifesaver for 1 1/2 years, would not take him back the coming year. (I will discuss this in detail in the next post.) I got the phone call on a very difficult day, when I was in the middle of dealing with other crises. When Leticia showed up, I was in a bad state and very frazzled. I told her what was happening, and to my surprise, she had no sympathy to spare.<br />
<br />
"You want us to do <i>your</i> job. <i>You're </i>the mom! We're not here to do <i>your</i> job! Where I live, no one has this kind of help!" and she went on and on how I was relying so much on other people to take care of Dovi, and I would just have to buck up and take care of him, and that's it.<br />
<br />
I was really stunned.<br />
<br />
It was <i>really</i> not her place to give me that kind of lecture. She had absolutely no idea what it was like to raise a child like Dovi. Even though she was in my house every day, she still had no idea. She was criticizing my every move, lecturing me on how to discipline him, and now, she was rolling her eyes at the way I was freaking out over losing a very important respite program.<br />
<br />
"What are you gonna do when he gets older and stronger? He's only gonna get bigger! And what are you gonna do when you have the new baby?" and on and on and on. I bit my lip and did not tell her the truth: that Dovi would likely not be living at home anymore when he was older, bigger, and stronger. I could only imagine the long string of exclamations she would make once she heard that.<br />
<br />
Once when Chaim, who was 7 1/2 years old at the time, was being extra special fresh and difficult, I noticed her trying hard to contain her opinions over how I was dealing with him. When he left the room, I commented in jest that she would probably give her own son a round spanking over that kind of behavior. She laughed at the truth of the joke. I had overheard her disciplining her son over the phone and felt sorry for him. Obviously, she and I had very different ideas of how to raise children.<br />
<br />
Dovi had started really increasing the mess in the house; he had taken to shredding paper, spilling snacks and pulverizing them, and smearing ice cream around. It was hard for me to bend down and I was so tired all the time that I stopped cleaning up and waited for my cleaning help or my husband to do it. Whenever Leticia walked through the door and commented on how messy it was and I gently asked her why she didn't want to clean it up, her response was, "Well, I don't know which part of the mess is Dovi's and which was made by your older son, and besides, I only have to clean up what he does while I'm here, not what he does before I come."<br />
<br />
Nice.<br />
<br />
The straw that broke the camel's back came on May 29, about six weeks before Dovi went to camp.<br />
<br />
By then I was starting to strongly consider not taking her back after the summer. With a new baby coming, I needed way more than the one hour a day she reluctantly came to my house. At some point a few weeks earlier, she'd mentioned that she was considering taking a different job for the coming year, with more hours. I was pretty incredulous and asked her why she wanted to work more hours when she barely wanted to do one hour in my house? I think her response was that she wanted to do a morning job the next year; it worked better with her kids' school schedule. Inside, I rejoiced. I was afraid of 'firing' her, but I knew I would be delighted if she left of her own accord.<br />
<br />
I was, at that point, almost 8 months pregnant, clumsy and exhausted. Wednesdays were the hardest; I hit the ground running at 11 a.m., going for my therapy appointment, grocery shopping, errands, and arriving home exhausted. I sat around for most of the day like a beached whale. I had low iron and very little energy. On that particular day I was busy filling out endless reams of paperwork for camp, and I had to go to the social security office the next day for an annual review, so I was frantically running around trying to find all the missing paperwork. That morning Dovi had gotten up at the crack of dawn. In an attempt to keep him from rattling around in his bed trying to find a way to get out, my husband put a few slices of bread and a few carob rice cakes into Dovi's bed so he would keep occupied. The bed was full of the leftovers of that morning's feast; I hadn't yet cleaned it up. By the time Dovi came home from com hab, I was sitting on the couch trying to catch my breath. The grocery order sat in boxes, waiting to be unpacked.<br />
<br />
And then the crud hit the fan.<br />
<br />
Dovi <i>loves</i> water - anything liquid really. Flooded sinks and bathtubs were frequent occurrences; spilled bottles were the norm. Dovi had gotten so strong he could open closed bottles. While Leticia was running Dovi's bath, he took out a bottle of ginger ale soda from the grocery order, pried it open, spilled it on the floor, and began swimming in it and lapping it up like a dog.<br />
<br />
Leticia walked into the living room where I was spread out on the couch, her picture a face of deceptive innocence.<br />
"Can I ask you something?" she asked.<br />
"Sure," I replied.<br />
<br />
Wait for it...<br />
.<br />
.<br />
.<br />
"<b>What do you do all day</b>?"<br />
<br />
I was stupefied.<br />
<br />
"What do you mean what I do all day? I run errands, go to appointments, cook dinner..." It sounded lame, and I felt flushed. What was she insinuating?<br />
<br />
"Why couldn't you unpack the groceries before I came? I really can't work like this."<br />
<br />
She was right. I probably should have put away the bottles of soda and other things that Dovi could potentially mess up. But she was blowing this out of propotion.<br />
<br />
"Leticia, you're aware that I'm 8 months pregnant, right? I don't have a lot of energy."<br />
<br />
She sneered in contempt. "I"ve been pregnant twice myself. You're not disabled. You should be able to do some housework! Did you see what Dovi's bed looks like? I am <i>not</i> cleaning that up!"<br />
<br />
I leaped off the couch clumsily, my blood boiling. I couldn't believe what I was hearing.<br />
<br />
"Leticia, you were seventeen years old when you were pregnant! You were not thirty-seven years old, and you were not dealing with a hyperactive autistic child then!" I was shaking. "You should know, I've really had it with your attitude and I won't stand for this anymore. You're constantly telling me how I should do things. I'm not interested in having someone here to restructure how I do things and tell me how to run my life!" I was really angry.<br />
<br />
"I'm here to help you and you're not interestd in my help! You tell me that <i>I</i> have attitude? You're giving <i>me</i> attitude! I will not be disrespected! I'm going to report this to my supervisor! I cannot work like this!"<br />
<br />
The minute she said the word <i>report</i>, she triggered a hyper-anxious reaction in me. I ran to my room and curled up in a fetal position, crying hysterically. I felt so stuck. Now I certainly couldn't fire Leticia -- now she was bound to sit down with her supervisor and twist everything around to make me look bad, and I would have no recourse, as I had never had a conversation with Ophelia about how I wasn't getting along with Leticia. And irrationally I was also afraid of how I would manage if she indeed left us suddenly. As terrible as her attitude towards me was, being left without an aide even for one evening was disastrous. I could not longer physically handle Dovi at all in this stage of pregnancy.<br />
<br />
When my husband arrived home he was shocked at what he found. Leticia went on a tirade at how I had disrespected her and given her attitude and so on. How ironic is that? I was disrespecting <i>her</i>?<br />
<br />
May I add that Leticia was all of 29 years old? Ever heard of respecting your elders and getting along with your boss?<br />
<br />
This relationship had gotten toxic. And I didn't know what to do. And I was also scared of her.<br />
<br />
Of course, before Leticia left I apologized to her and asked her meekly if she was coming tomorrow. She murmured that she had to speak to Ophelia about this, but she probably would still come. After she left I was still shaking.<br />
<br />
I called my friend Tova, who also had an aide from the same agency. She was horrified by my story and told me that I did not have to stand for this kind of emotionally abusive treatment. But, I asked, how could I have Leticia replaced when I had no relationship with Ophelia?<br />
<br />
Tova told me of a wonderful Jewish man named Solomon who worked at the agency and had been instrumental in getting her a fantastic aide after a few really bad matches. She told me to call him; he would hear me out and really try to accommodate me.<br />
<br />
I also called my sister for advice, but she had a busy night and told me to call her in the morning.<br />
<br />
The next morning while I was sitting at the Social Security office for hours (I was eventually sent home and told to come back at a different date...) I had time for a lengthy conversation with my sister. My sister is bli ayin hora a wonderful person who is very centered and smart and always seems to hit the perfect response whenever I reach out to her. This time, to my shock, she kind of took Leticia's side.<br />
<br />
She tried to paint a picture for me what it was like to work at my house. The chaos, the mess, my inability to cooperate to try to change things. I am who I am, yes, but if this is how I operate, and she cannot work in these conditions, this job was not for her.<br />
<br />
Of course, my sister did not think that the way Leticia had spoken to me was acceptable or respectable - at all. But I had to think long and hard how any of my future helpers would last in my house if I kept letting Dovi have junk food and ice cream, which made him hyperactive and difficult to control.<br />
<br />
It was a hard pill to swallow. Being strong and disciplining Dovi was my weakest spot and I just could not do it.<br />
<br />
The bottom line, however, was that Leticia had to go.<br />
<br />But not yet. There were five weeks to go until camp, and there was no point now in stirring the pot, creating more conflict, and then trying out a dozen different aides who would not know how to handle Dovi, only to get someone new for September. My sister advised me to ride it out until Dovi left for camp, and be cordial and stay out of Leticia's way for the duration, and deal with getting a replacement over the summer.<br />
<br />
Sound advice.<br />
<br />
I composed a text to Leticia. I apologized for blowing my top the night before, and admitted that I have a weakness when it comes to imposing limits. Therefore, I think the best way for us to be able to work together, is for me to leave the room when Dovi comes home, and let her take over. She should feed him and play with him and I won't be present, since I know I won't be able to refrain from indulging him with junk food. She accepted my apology, never reported the incident to the agency, and we kept out of each other's hair for the rest of her time with us. I let her be in charge, and hovered around the periphery without issuing too many directives. It was very challenging, because Dovi kept coming to me and dragging me to the freezer or the pantry in search for his favorite snacks. But somehow we pushed it through.<br />
<br />
I learned some very difficult lessons during our experience with Leticia. I still had not learned how to be assertive and firm, and how to <a href="http://www.autism-parenting.com/2013/01/res-hab-mixed-blessing.html">let go of workers who were not doing their job</a>. It is a skill I have still not fully mastered. I stayed with subsequent aides who were not ideal and a cleaning lady who stole money from me, without having the courage to get rid of them.<br />
<br />
But... as with all the events in my life, especially when it came to Dovi, events that seemed truly terrible turned out to be a blessing in disguise. This blow-up with Leticia had to happen so that there would be a final nail in the coffin. I didn't begin to dream just how much help I would need with Dovi after baby Levi's birth. The best thing in our life would walk through the door in September, and she would keep us sane for the next three years.<br />
<br />
But if I thought I was done with drama and heartache in that short month until Dovi went to camp, I was sorely mistaken. My world would yet be shaken up in ways I could not begin to imagine, and it would set the path for the eventual climax of the journey with Dovi.<br />
<br />
Stay tuned.<br />
<br />
<img alt="Image may contain: 1 person" height="240" src="https://scontent-lga3-1.xx.fbcdn.net/v/t1.0-9/581689_168952956607441_975456526_n.jpg?oh=d3a9c37583b4fed023967db36ddb21db&oe=5A28607E" width="320" />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com6tag:blogger.com,1999:blog-6690082237623994514.post-9637027775248881792017-08-14T08:32:00.000-07:002017-08-16T18:50:33.140-07:00Three Cheers for Camp!One of the most amazing points of pride in the Jewish special needs universe is the existence of sleepaway summer camp for special needs kids. While the general population doesn't usually go to sleepaway camp before age 11 or so, when it comes to special needs, many parents look forward to their child turning five years old so he or she can go to camp.<br />
<br />
The main attraction for sending a child to camp is, of course, to get a much-needed break; often, the child's family goes away for the summer and there's no educational framework for the child to attend. But aside from the breather the family gets from the overwhelming burden of caring for said child, summer camp provides an opportune environment for every child to grow and blossom in ways they can't during the academic school year in a cramped city apartment. This applies even more to special needs children, especially with sensory processing disorders.<br />
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When Dovi was 2 and initially started Early Intervention, his therapists remarked that he did a lot better outdoors than when he was forced to sit in a room. Back home in the city he loved running outside, and there was very little opportunity to do so in a safe way. The following two summers, as you read here, were incredibly difficult. It was very hard to chase after Dovi all day in the country, even with help, and I knew that I could simply not do it again; unless Dovi would go to summer camp, my family's summers up in the country were history. And it hurt to even consider it; Dovi thrived so much upstate with the open expanse of grass and trees with access to playgrounds, swimming, and sensory opportunities everywhere. I knew that I had to find a way to get Dovi into camp.<br />
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While a plethora of camps exist for Jewish special needs children in New York, many of them are niche camps for specific disabilities. There's <a href="http://www.campsimcha.org/">Camp Simcha</a> for children with physical disabilities, which runs for 2 weeks each summer; <a href="https://www.yachad.org/kesher/">Camp Kesher</a> for high functioning girls; <a href="https://www.yachad.org/chaverim/">Camp Chaverim</a> for older boys; <a href="http://www.campruachhachaim.com/">Camp Ruach Hachaim</a> for older, relatively high functioning boys; <a href="http://www.campkaylie.org/">Camp Kaylie</a>, an integrated camp for higher functioning kids; and a handful of others. But there are only 2 camps that take kids from age 5. Although I'm fairly sure that most people reading this will know which 2 camps I am talking about, since I will be getting into real detail about them, I won't use their real names or link to them. Let's call them... Camp A and Camp B.<br />
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Camp A is large, professionally run, and world famous. They have over 300 kids (and adults) in camp every summer. It is billed everywhere as "Heaven on Earth" and they run massive fundraisers and a concert annually. It's an incredible camp; The kids have a blast, and many kids make major progress during the summer with therapy.<br />
<br />
Camp B is a lot smaller and run more 'heimish'. At the time it was funded by a Medicaid Waiver agency. Since the counselors are all girls (Camp A is co-ed though divided by gender), boys age out when they turn 9 years old. I had never really heard of Camp B, only in passing.<br />
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Naturally, I really wanted Dovi in Camp A. It was my dream - for him, for the family.<br />
<br />
Before the summer that Dovi turned four which we spent in "Kiamesha Hills", I became friendly with a woman in my support group, whom I'll refer to as Yolanda. Yolanda's son, Josh, is very similar to Dovi - although he is a LOT older - and we became very good friends. That spring she told me that Josh had spent 3 summers at Camp B and he loved it there. The counselors were more 'heimish' than Camp A, often Yiddish-speaking. Josh was already 10 years old, and he would be attending Camp A that summer.<br />
<br />
Camp A also ran a daycamp program for kids who were too young for sleepaway camp, and I tried to get Dovi in for that summer - but I was too late. I called in January, and by then the autism class was full. Besides, said the lady at the other end of the phone, Dovi was classified as 1:1 and their class was 6:1, so the Board of Ed wouldn't pay. I tried calling Camp B, but was told they don't do day camp, and even though they had a select few 4 year olds for sleepaway they thought Dovi was a little too young for sleepaway and told me to call back the next summer.<br />
<br />
Several days into the camp season, Yolanda called me with some bad news. Josh was kicked out of Camp A. After a few days. What???<br />
<br />
Apparently Josh had gotten aggressive and hurt another camper badly enough to cause injury to the child, and Josh was sent home with instructions to see a psychiatrist and get on a better medication regimen. I was stunned.<br />
<br />
I won't go into the details of the story and whether Camp A was right or wrong - it is what it is. But over the last few years, many kids with behavior issues were sent home from Camp A, not accepted for the following year, or not accepted in the first place. There are plenty of children with behavior issues in that camp, so it's not an across-the-board issue, but it happens a lot. It's something they prefer not to have to handle.<br />
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That worried me a little; but Dovi was still very little and very innocent and I knew that a little five year old couldn't inflict bodily injury the way a 10 year old can, and if they felt they could handle him, they would accept him. (A big part of the issue was, I think, that Yolanda hadn't really explained to Josh's counselors exactly what he does and how to handle his issues. Every single time Dovi went away for any reason, I briefed the caregiver very thoroughly on what to expect.)<br />
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It seems that Josh had an easier time at Camp B. The director knew him well and the counselors there somehow managed him. Maybe Camp A is too overwhelming for severely autistic kids. I don't know. But Yolanda was waxing lyrical about how incredible Camp B was. I still preferred to get Dovi into Camp A because of its reputation. I had little to go on with Camp B.<br />
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Before I went through my infertility cycle, I pored over the calendar copiously. I knew that I needed as much time as possible to recuperate after birth, since I would be having a scheduled C-section early in the ninth month. (That's what the doctor who delivered Dovi decided I needed, after the terrible pelvic infection I experienced shortly after his birth.) Since camp started on July 2 and ended on August 15, I calculated the cycle precisely so that if it worked, I'd be due at the very end of July, have the C-Section a day or two after Dovi left for camp, which gave me six whole weeks to recuperate.<br />
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Well, man plans, and G-d laughs. Heartily. None of my careful calculations worked out, and none of it ended up mattering, because HaShem had way better plans for me.<br />
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Firstly, as you probably already read in an earlier entry, the cycle ended up pushed off by ten days thanks to <a href="http://www.autism-parenting.com/2017/03/on-angels-wings.html#more">Hurricane Sandy</a>. That gave me a a bit of a later due date - July 30 - but if I gave birth very early in July I could still have five or six weeks time to recuperate.<br />
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The second monkeywrench in my plans was my phone call to Camp A to apply Dovi for camp. I called really early - in mid-October - but the woman on the phone found a million different reasons why Dovi was ineligible for camp. He hadn't yet aged out of preschool, and the Board of Ed would not pay for camp for kids in preschool. Also, he still had an IEP of 1:1, which their autism class didn't have. I started panicking a little bit, and tried to work it out with the Camp. She told me to first fill out seventy million forms, and she would look through them and get back to me.<br />
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I posted on Facebook about my dilemma, wondering aloud if I should also give in an application at Camp B. An old friend urgently messaged me not to consider Camp B, because it was really not geared to children like Dovi. Runners don't do well at Camp B, she said. The place is run down. The counselors don't know what they're doing. etc. etc. It was really disconcerting.<br />
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As it turned out, this friend had worked in Camp B a long, long time ago - at least a decade earlier - and the camp had improved tremendously since then. But it was enough to scare me off.<br />
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My plans kept unraveling. When I took Dovi for his <a href="http://www.autism-parenting.com/2012/11/please-donate-to-dovi-education-fund.html">interview</a> at the school he didn't eventually end up going to, I discussed summer camp. The woman who interviewed me said that there was no such thing as going away to camp if Dovi would attend that school, because it would hinder the case with the Board of Ed. I was devastated. From what I'd been told, speaking to other mothers - especially mothers who sent to that school - it was definitely possible for a child to go to camp, you just had to pay a little more because the BOE wouldn't pay for the 2 summer months and the school wanted full tuition, or something like that. But they were adamant that he certainly couldn't go to camp <i>that</i> summer, since they wanted him to start school already in July. I was stunned and very upset. I had built a whole house of cards on the idea of Dovi going to camp that summer. Finding him a place to stay while I recuperate from a C-section would be very daunting.<br />
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I began scrounging around for options. I didn't want to inform The Respite House yet that I was expecting, but I asked them anyway whether they would be open in the summer. They were usually open only after camp ended -- in late August -- but that summer would be the first time they were considering being open. The normal maximum amount for a consecutive stay was one week, but for a <i>kimpeturin </i> they extended it to 10 days. That actually sounded pretty good; Dovi could go to Mrs. G. for 2 weeks, followed by 10 days at the Respite House. That was almost a month. Not bad.<br />
<br />
(Ironically, the way things turned out, Dovi came home when I was 23 days postpartum, pretty much the same amount of time had this plan ended up working. Now, in hindsight, I don't know how I was able to manage with a newborn baby plus Dovi. God gave me an extra amount of strength and resources to get through those days. Looking back later I was amazed that I wanted him home so soon after giving birth and didn't send him somewhere else for a few more weeks. In later summers, Dovi would end up being away for 8-10 weeks at a stretch. But at the time he was so little and I felt it would be way too confusing for him to be at different places. I did say that if I had another baby while he was still living at home, he'd go to Mrs. G. for 2 months at least... one of my friends whose daughter was in Dovi's class the past few years, left her daughter at Mrs. G's for four whole months after giving birth, which was a little nuts. But I think she hoped that her daughter would eventually stay living at Mrs. G.... she approaches the whole situation differnetly than I do. But anyway, I'm off on a tangent. Let's get back to the topic at hand!)<br />
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Later in the winter <a href="http://www.autism-parenting.com/2013/03/the-most-difficult-decision-ive-ever.html">when the school situation heated up </a>and I was back-and-forth with the lawyer all the time trying to figure out how to make it work, the lawyer wanted Dovi to start school in September instead of July; it would give her a better case to settle with the Board of Ed. (This lawyer does this a lot; she made a friend of mine wait until October to start her son in school, and she nearly lost her mind over the High Holidays with him home full time!) The lawyer ended up convincing the school, and when I quickly called back Camp A to check if they still had any slots available, got the same response... He's still in CPSE, we can't service 1:1, etc. etc....<br />
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In desperation I decided to swallow my misgivings and call Camp B. But my last hope was shattered when the woman on the phone informed me that Camp B wasn't opening that summer at all. The Board of Ed was stopping to pay for summer camp at all; they refused to pay for all the students of the previous summer and they were left with staggering debt and there was no way they were reopening.<br />
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It was official. Dovi wasn't going to camp that summer. He would be home in the city, and we would cope somehow. The prospect was extremely daunting; all of his com-hab girls were going to camp; his Shabbos volunteers were going to camp; I wasn't feeling very good about Leticia anymore either. But we would persevere somehow. At least I could plan everything around the scheduled C-section and not have to leave things up in the air, right?<br />
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Wrong.<br />
<br />
I had been planning all along to see the same medical group that had delivered Chaim and Dovi. But shortly before I got pregnant with Levi, they stopped taking my insurance. I was left with the option of jumping backwards through flaming hoops to get the kind of insurance they accepted, or to see another doctor who did take my insurance. I opted for the latter, because the MFM group's office was a long train ride away and visits there were very draining, and the hospital they delivered in was very far. Dr. R.'s office was a lot closer and more easily accessible, and the hospital closer to home.<br />
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I had to wait until I was 10 weeks along to see Dr. R., because my new insurance would not kick in until January 1. It was a nerve wracking time for me, because my final visit with the RE was at 6 weeks. Four weeks was very long for me to go without knowing that everything was okay; I was terrified of showing up at the dr and finding out, God forbid, that there was no heartbeat for a few weeks already. The bleeding incident at 7 weeks along turned out to be a blessing, because now I only had to wait 3 weeks for my first appointmt with Dr. R instead of 4 weeks.<br />
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The appointment was uneventful. History... due date... ultrasound... I told them everything from A to Z, then sat down to talk to Dr. R. I detailed the incident with the pelvic abscess I had experienced 4 years earlier, and combined with a fistula I had a result of the episiotomy, both my RE and my former MFM felt it was dangerous to deliver naturally, and I should have a C-section scheduled so that there would be no option of my water breaking (which is how I went into labor with Dovi). Dr. R. would have none of it. "You're not having a C-section under my watch!!!" It turns out that Dr. R. is well known for a very low C-section rate despite having a very high risk clientele. He is a risk taker and does VBACs, VBA2Cs, and maybe even the occasional VBA3Cs. He felt that the infection had been caused by the episiotomy, not the waters breaking, and he would make sure that the baby would be small, thus I wouldn't need forceps like at Dovi's delivery, and I wouldn't tear much. (Um, I had forceps bc I was exhausted after 2 hours of pushing... the baby was not big, and there's nothing you can do to keep a baby small... but whatever...) The bottom line was, he would not schedule a C-section if he could help it.<br />
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OH NO!<br />
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That COMPLETELY derailed the last vestige of being remotely in control of when to give birth, and it threw me into a panic. So now I wasn't going to give birth early in July, while Dovi still had summer school. Now I was suddenly due on July 30, and if I made it to my due date or beyond, Dovi would be done with school by August 12, leaving him with no day program at all for his stay at Mrs. G. / Respite House. (As it turns out, the Respite House runs its own 'camp after camp' program the week after camp ends, but somehow they didn't offer it to me, perhaps because they felt Dovi was too difficult to manage.) And this also meant that I had no idea when I would go into labor, leaving me kind of stuck with options on who would step in to manage Dovi. Would my mother be able to handle him for so many hours? What if it was on Shabbos and I couldn't even notify her to come over? It was a mess.<br />
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On the other hand, I was relieved that I wouldn't be having a c-section, because recovery is a lot more difficult and prolonged than after a regular delivery. As it turned out, G-d really was looking out for me - I had the smoothest and easiest recovery after Levi's birth.<br />
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I spent the entire winter and spring worrying myself sick. My brain was in constant overdrive. Aside from dealing with the very confusing and difficult schooling decision, I was also trying to figure out arrangements for Dovi for my postpartum period. I asked the ambulette company if they would be able to transport Dovi from Mrs. G. / Respite House to his ABA Center. I sat down with the director of the Afterschool program and <i>begged</i> her to accept Dovi for the three-week-long after-camp program, as there was literally no way he could be home all day with me and a newborn baby. She promised me she would try to find really good staff for him and provide him with a 1:1. (the program ended up being a lifesaver and a disaster at once. I will write about it in a future post.) Then I discovered that the ABA Center actually finished summer sessions on August 9, not August 12, and the Clinic's after-camp program only started on the 13th. Then the Clinic asked me to try find a counselor for Dovi, or perhaps an aide. Huh? Leticia then informed me that she was taking some time off to go on vacation with her boys in August. Things looked bleaker and bleaker. The world swam around me. I just couldn't handle it all.<br />
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Three months before I was due to give birth I finally hit rock bottom and did what I should've done all along; the only thing that works, the thing I kept seeing over and over and somehow didn't seem to absorb before it was almost too late: I surrendered my worries to Hashem. I picked up my hands, told Him it was way too much for me and He just had to figure it out for me the way He did the summer before with the amazing setup of counselors at Kiameshe Hills. I just couldn't do it myself, and that was it. He had to help me - there was no other way.<br />
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And He did!<br />
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Several weeks later, after one of my therapy sessions with Linda, I went upstairs to see my Medicaid Service Coordinators, Marilyn and Jenna, like I often did when I visited the Clinic. Jenna looked at me thoughtfully and said, "I don't think it's really applicable to you, but I'm so happy, I just have to tell you this. Remember Camp B? It's actually reopening. At the last minute. A community activist got involved and raised funds to reopen the camp. I'm so happy! There are so many kids who were stuck for the summer, and they now have a camp to go to! Do you think it is helpful for Dovi?"<br />
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My knee-jerk reaction was, "Nah! Camp B is not set up for Dovi. I don't think they'll ever take him. I already made arrangements with The Respite House... And anywy I don't think I can be away from him for six weeks... I dunno."<br />
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But Jenna urged me to think it over. "The director of the camp is my first cousin's daughter. I have some pull with her. I can call her and tell her what an urgent case this is. I think we might be able to make it work."<br />
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My heart started racing. Was it really possible?<br />
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I held my breath for the next month as back-and-forth phone calls and conversations ensued. I described Dovi to Shelly very honestly; his tendency to elope, his need to sleep in a tent - which they did not allow - the million eyes that were needed to keep on him at all times, his safety issues around water, etc. I was sure she would be turned off. I had my doubts as well, and I was very nervous. She came down to see Dovi at the ABA Center, and he was actually quite well behaved, and he surprised me a lot - I had never really sat in on a session and was amazed at the things he had already learned, which never translated into his behavior at home....<br />
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Shelly thought it over, and a month before camp, began, she officially accepted him.<br />
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And just like that, my endless tangle of worries were over. Dovi had a place to be for the summer. I could spend the ninth month of pregnancy doing real things like organizing, nesting, shopping, figuring out a setup to handle a newborn baby and Dovi once he came home, etc. - and I didn't have to worry anymore what to do with him while I was in labor.<br />
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I was amazed at the twist of fate here. Hashem had orchestrated it all behind the scenes. Things that had seemed so bleak were a blessing in disguise. Because Camp B was supposedly not opening for the summer, many families had found other options for their kids, and suddenly there were slots available. The camp has capacity for 60 children, but now they only had enrollment of 40. there were 20 vacancies!!! Dovi would probably have not been able to get in otherwise. And amazingly, Josh was allowed to come that summer, even though he was already 11 years old - because there were so many empty beds to fill. It would be a lifesaver for Yolanda. Dovi ended up sharing a cubicle with Josh!<br />
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There were, of course, tons and tons of things to do to make it a reality. Endless reams of forms to fill out, shopping to do over my head, medical forms and letters.... He would be allowed to have his Ready Set Bloom tent with him as long as it had a doctor's note. He wouldn't be taken to the lake so that he wouldn't know there was a lake. He would get a good counselor who could deal with his level of activity. (Shelly is well known for making incredible matches between kids and counselors.)<br />
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While the preparations for the exciting summer ramped up, trouble of another sort started brewing, big-time. My relationship with Leticia, which had taken a southern turn that year, began unraveling to the point of no return. And yet again, what seemed like a disastrous situation would end up being one of the biggest blessings in disguise in the sage of Dovi.<br />
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Stay Tuned!<br />
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<br />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-20189882553012439642017-07-23T08:18:00.002-07:002017-07-23T08:18:34.819-07:00Spring 2013<i>Continuing from the last post...</i><br />
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I had known that being pregnant at age 36 would be more difficult than the ones when I was 28 and 31, but I had no idea just how difficult.</div>
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I was exhausted - all.the.time. I spent most of the day sleeping. I had no appetite, and little energy. Being off my ADHD meds made things worse. I was prone to anxiety and every little thing sent me into a tailspin. Especially once Dovi had his burn incident and the subsequent social services snafu, I stopped trusting my parenting. If he had the slightest hint of a scratch or a cough, I became hysterical and made a doctor's appointment immediately. The problem was, I didn't feel physically up to taking him to the doctor anymore, so the onus always fell on my husband.</div>
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In addition, Dovi's incessant need for sensory input and an endless craving for food - mostly ice cream - worsened the ever-present mess in the house.</div>
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Shabbos was the hardest. I had no full-time aide at the time -- a fact that still boggles my mind -- and I had no one to turn on his dvd player, blow bubbles for him, or do the many other things that kept him busy and out of trouble.</div>
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During the week, I had a pretty good setup. After all the advertising, phone calls, and interviewing I was always doing to find Com-Hab girls for Dovi, I had three lifesavers: Cerie, Toby, and Rachelle. Cerie took Dovi on Sunday and Wednesday; Rachelle had him on Monday; and Toby had him on Tuesday and Thursday. He went straight from TABAC via the ambulette to the com-hab's house. While I was often on the phone, busy begging the ambulette to go pick up Dovi already, as he was ripping TABAC apart and they had no one to watch him - by and large I was able to function well in the afternoons, since he only came home from the com-hab's house at around 6 p.m. Chaim went to play at a neighbor's house every afternoon as well, so I ended up having plenty of free, quiet time. You'd think that would help me run an efficient home, but no; I was always exhausted, and being a procrastinator by nature, would suddenly start cooking dinner at 5:30 pm. This led to some clashes with Leticia. More on that later.</div>
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I spent a large chunk of winter and spring <a href="http://www.autism-parenting.com/2013/03/the-most-difficult-decision-ive-ever.html">fretting about what to do about Dovi's schooling</a> for the upcoming year. Ultimately, the Hand of G-d led me to <a href="http://www.autism-parenting.com/2013/04/an-update-on-dovis-school.html">"School C"</a>, for which I'll have to think of a new name when I write about it in the future. It ended up being a great decision. I would have had a really hard time dealing with School A and a new baby; it would've been a similar continuation to the pressure I was still getting from TABAC. Boy, that year was rough. It's hard to think back.</div>
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The week leading up to Pesach of 2013 was Panic City for me; Toby informed me that she wouldn't take Dovi those days, and it led me into a tailspin of anxiety. I couldn't possibly handle Dovi on my own, and it would be really hard to find a replacement. Things got worse when Dovi woke up with fever. It ended up, ironically, being a blessing in disguise; he spent most of his day laying around lethargically and I was able to get all of my cooking done in record time. The downside was that my anxiety spun through the roof. He spent so much time sleeping that I was afraid that he was very sick. But it was a run-of-the-mill virus, which he had probably caught from Leticia, who was coughing and feverish a week earlier. I spent most of Pesach feeling sick to my stomach with anxiety, to the point that I called my therapist for an emergency session. (One of the triggers was Leticia, and I will address my deteriorating relationship with Leticia in two posts from now.) I couldn't be happer when Pesach was over and Dovi returned to TABAC, finally on the mend, after two weeks of off-and-on-fever and lethargy (with plenty of doctors' visits in the meantime, and Cerie being my right-hand helper through it all).</div>
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After Pesach I put on maternity clothing, and finally, my secret was out. I continued being exhausted and stressed, and eventually discovered that I had low iron and started supplementing. My primary source of stress was the big question of what to do with Dovi when I went to the hospital to give birth, and the first few weeks afterwards while I recovered. Part of the plan before I ventured forth with the attempt to have this baby was for Dovi to be at sleepaway camp. But that wasn't working out (as I will discuss in the next post), so I was desperately trying to formulate Plan B. Eventually I was able to arrange that Dovi would stay at the Respite House for 10 days, followed by 2 more weeks at Mrs. G. But I was still worried who would stay with him when I actually went to the hospital to give birth, which was obviously impossible to predict. I was also busy trying to convince The Clinic to let Dovi join their 3-week-long after-camp day program. Then I heard that TABAC was ending on August 9, while the end-of-summer Clinic program only started on August 12, which sent my brain racing again. The constant worrying took a huge toll on me.</div>
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In June, three pivotal events occurred, which would change the course of my life with Dovi forever. These three events were a mix of revealed good, hidden good, and long-term-super-concealed-good. These 3 events will be the focus of the next 3 posts.</div>
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The miraculous: Dovi got into summer camp.</div>
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The terrible-with-hidden-blessing: My relationship with Leticia unraveled to the point of no return.</div>
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The unthinkable-but-eventually-good: Pressure from well-meaning people to start considering placing Dovi ramped up to unbearable degrees.</div>
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Stay tuned!</div>
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Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-72397458659917534302017-07-12T12:32:00.000-07:002017-07-12T12:32:01.485-07:00Just a boring post. Nothing to see here.I last left you off with your jaws hanging wide open (nah) at the <a href="http://www.autism-parenting.com/2017/03/on-angels-wings.html">sight of a positive pregnancy test.</a> I apologize for leaving you dangling like that for over four months (gosh, has it been that long? Crazy!!) I will now pick up the narrative, circa November 2012 (does anyone really care about that? so long ago!)<br />
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When I picked my own jaw off the floor, I was left with my head spinning. There was so much for me to do, chiefly find a new high-risk doctor to manage the pregnancy, as the one I had used during Chaim's and Dovi's no longer took my insurance. Lots of research later, I had an appointment in early January. Next came surviving until I took a blood test the next day and had the results. The numbers were good. Several days later I repeated the test, then a week later. Things seemed to be going well. I held my breath. At the six-week mark, the ultrasound showed a nice, strong heartbeat. I took leave from the infertility specialist. It would be four long weeks until my new insurance would kick in, and with my long history of miscarriage I was really nervous. But I had strong faith that it would all go well.<br />
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However, having to go off my ADHD meds AND dealing with Dovi day-to-day made things very stressful. I was having a hard time coping. I was also on a very high dose of progesterone, which made me very sleepy. To top it all off,<a href="http://www.autism-parenting.com/2012/11/please-share-with-me-your-ritalin.html"> Dovi wasn't doing very well on the Ritalin</a>. As I had suspected and predicted, it was making his sensory processing disorder worse. He became a bit more aggressive, biting staff and throwing things. Meantime I went with Dovi and one of his ABA therapists, Alice, to see an <a href="http://www.autism-parenting.com/2012/11/please-donate-to-dovi-education-fund.html">incredible school</a> for Dovi (please do not donate to the Dovi education fund - it no longer exists!). Alice kept remarking snarkily on how much worse he was doing on the Ritalin; it was driving me crazy. Alice apparently is a health nut and all that; but I was flummoxed how she expected me to be able to manage his behavior without any medication. I was blown away by how amazing the school was, and began to frantically scrabble around to find a way to raise money to pay for it. It was a stressful time.<br />
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On Friday morning about a week before Chanukah I woke up with a terrible toothache and rushed to my dentist. The dentist made things worse, and I was in terrible pain all day. With being pregnant and exhausted and Dovi having not been away for over month, I really needed a break that Shabbos. I tried to get him into the Respite House, and they had a last-minute opening. However, when the nurse heard that he had started biting again, she tried to dissuade me, saying that if he actually would bite someone at the House, he could be blacklisted until his behavior improved. (Isn't that sad? We're talking about a little 4 year old here. Not an aggressive teenager.) But more on that in a future post.) Friday night I went to take a nap while 2 volunteers/com hab girls watched Dovi. I woke up from a deep, drugged sleep to horrible screaming. Apparently while I was napping, the girls didnt' properly supervise him and he ended up tipping over the percolator and getting burns on his feet!<br />
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I won't even go into much detail about what followed the next two months, because it still gives me PTSD to this day and I try to block it out. After bandaging his burn and monitoring it all Shabbos, I did end up in the burn unit with him on Sunday, where they miraculously discharged him with a Mepilex bandaging once they realized that he was too hyperactive to be kept hospitalized. But ended up embroiled in every mother's worst nightmare: Visits from child protective services. (We were actuallyn not reported by the hospital, but by someone else, but that's a whole other story I wont' even address.) Thankfully, we were eventually cleared, but not after weeks of terrible heartache and stress. The experience left me second-guessing my parenting for a long time, and sent me into massive tailspins of anxiety. Thankfully my therapist was able to guide me through a lot of it, but it was far from fun.<br />
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The worst repercussion that came out of the entire incident happened on Motzei Shabbos Chanukah. That Chanukah was the first time I started leaving Dovi behind during the family Chanukah parties, after rcalling the disasters of years earlier. <a href="http://www.autism-parenting.com/2012/12/chanukah-musings.html">I was very emotional and sad all Chanukah. </a>I didn't trust any of the com hab girls or volunteers and took care of Dovi myself, which was physically taxing. The last straw was on the first night of Chanukah, when I suddenly started bleeding. Convinced that I was losing the pregnancy due to the stress of the burn and CPS incident, I didn't feel like going to my in-laws for their party, but forced myself to. The next morning I raced back to the infertility clinic for an ultrasound, but all was okay!! It ended up being a blessing in disguise, since I couldn't see my new obstetrical team until week 10.<br />
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My mother and I took Dovi twice more to the outpatient burn clinic. Dovi's toilet training program, which we had barely started at TABAC, was suspended for the moment, since we didn't want to bother him unneccessarily while he was recovering from the burns. Indeed, toilet training was never subsequently reattempted until he moved to the residential school the past February. (He is , thank God, doing pretty well with their toilet trianing program.)<br />
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After the dust had settled from the burn incident, my Medicaid Service Coordinators, "Marilyn" and "Jenna", realized that I needed a lot more help than I was getting. They tried to obtain OPWDD funding to gate off my kitchen to make it safer, but of course, the OPWDD kept turning it down. It took another 1 1/2 years, but we eventually did it ourselves, and we finally had peace of mind for about 2 years, until Dovi was so strong he'd burst through the kitchen gate with all of his might and it was rendered useless.<br />
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They also started urging me to find another respite provider aside for the Respite House; once a month was not enough for us anymore, and there were times when they didn't take Dovi for 2 months or so. I had heard of an incredible lady, Mrs. G., who ran a 'respite home' in her house singlehandedly. Sylvia was sending her son Zevi there once a month for about two years by then. I was wary though, and after long phone calls and warning Mrs. G. about what she was letting herself into, she tried it out one Shabbos - and it worked! We started sending Dovi to Mrs. G. one Shabbos a month, so we ended up having respite every other Shabbos or so. It gave me a chance to catch my breath and rest up, and it also meant that I had a break on Sunday mornings from getting him ready and waiting for the Sunday Program van with him. I cried almost every Friday afternoon when my husband took him to Mrs. G. or the Respite House, and despite the much-needed break the family got when he was away, I cried almost every single Shabbos. It would take me a very long time to be okay with all these respite weekends, even though they were desperately necessary.<br />
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I will end this post now since I am actually on summer vacation and would like to step outside for a bit. I know this is a very very boring post, especially since it covers events that were hashed out over four years ago. But I'm building up to a point. And since this is a chronological diary, it was necessary to write this entry so I can build up to the post where I discuss the further movement into the decision that it was time to look for placement for Dovi.<br />
<br />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com1tag:blogger.com,1999:blog-6690082237623994514.post-80762115330472121382017-07-07T09:15:00.002-07:002017-07-07T09:15:27.240-07:00I'm back :)!Hello ladies and happy summering!<br />
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I spent five days going through all of the old posts on this blog and updating the Amazon links. (I'd been wondering why I didn't seem to be successful with the affiliate program and I see why - those links were really corrupt.) With the introduction of the amazon CPM program, a new fire was lit under me to get the blog really rolling again.<br />
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We're away for the summer at the bungalow colony and life is, thank G-d, a little easier right now. So I'm hoping to put up one post a week for the next couple of weeks. There's some interesting / fun / insightful stuff to write about.<br />
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We're heading up to Dovi's residence on Sunday to celebrate his ninth birthday. I have not seen him in a month (though I talk to his caregivers almost daily and they have been posting pictures on Facebook, so I'm up to date on his goings-on), and we're very excited :).<br />
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If you clicked above, your reward is the most recent pic we have of Dovi. If you're my friend on Facebook or a real life friend, you've seen it already. But if you're not, here's your reward :).</div>
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Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com1tag:blogger.com,1999:blog-6690082237623994514.post-33401758251746090932017-04-24T11:48:00.001-07:002017-04-24T11:52:05.966-07:00Don't worry, I'll be back soonMy sincere apologies for not updating for such a long time. However there's this little thing called "Pesach" which is actually not so little; the preparations took up all of my time and energy for the past 2 months or so. Finally the dust is starting to settle and I'm getting back into a routine. I hope and plan to try to post once a week so I can continue the riveting, or not-so-riveting, chronicle of how Dovi ended up in this fabulous place he now calls home. I visited him yesterday. He looks great. He lost weight. He's being toilet trained. He's happy. He has big wide open spaces to roam. The staff loves him. I miss him like crazy and visiting him is a massive shlep (I was out of the house for 9 hours yesterday and only spent 1.5 hours of it with him!) but I've been going every 2-3 weeks since I can't bear to be apart from him for longer than that, and he needs the visits (and the kosher food I bring with me). So anyway, hopefully now I'll start posting again. So stay tuned....Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-35940330720680957502017-03-06T20:33:00.000-08:002017-07-07T09:32:13.483-07:00On Angel's WingsAnd so in mid October 2012 I got my ducks in a row and went back to the fertility center that I had used to have Dovi to get another cycle started. Immediately we hit a lot of little snags with insurance issues and scheduling and whatnot. But I gritted my teeth and soldiered on. Medications. Patches. Ultrasounds. Bloodwork. Early morning rushes to the city. It all went relatively smoothly aside from some typical bumps in the road. Somewhere in the middle, I decided to <a href="http://www.autism-parenting.com/2012/10/the-psychologist-looked-at-me-squarely.html" target="_blank">start this little blog.</a> On Friday, October 27, I was all set to start Phase 2 of the cycle which meant switching over to a different medication. Suddenly I got a phone call from the Respite House that they had a cancellation and had room for Dovi for Shabbos. I was a little torn, because he had just been there 2 weeks earlier, but we figured, another Shabbos off never hurts. Good thing I took them up on their offer, because after that Shabbos it would take another NINE weeks until they would have another opening, and a lot of not-so-good stuff happened in those nine weeks. But I digress...<br />
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Anyway, so there I was sitting in the car on the way to drop Dovi off to the Respite House, when the phone rang. It was the doctor in charge at the fertility center that day. What she said next made my stomach drop.<br />
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“This is Dr. K. Have you been following the news? Did you hear about the big hurricane?”</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“Um… no! I have no idea what you’re talking about…”</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“Well, there’s a massive hurricane coming to New York, and it’s very likely that our office will be closed next week. </span><span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Do not switch medications tonight.</span><span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> If we can’t reopen by Wednesday and you’ve started Medication X, your cycle will have to be canceled. Continue on the Medication Y, and next week once the hurricane ends and our office reopens, come in for monitoring and we’ll take it from there.”</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">What hurricane? I had no clue what she was talking about.</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I would soon find out…</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I was terribly disappointed; the cycle was precisely calculated. I had spent months poring over calendars trying to calculate for the cycle to work out exactly so that Dovi would be in sleepaway camp while I gave birth and was recuperating from the birth, and this hurricane I knew nothing about was throwing it all off kilter. Nu, what can you do? </span><span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: italic; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A mensch tracht un G-t lacht…</span><span style="background-color: transparent; color: black; font-family: "times new roman"; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">(Man Plans, and G-d laughs)...</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As you will later find out, HaShem had planned it out so precisely amazingly, in a way that I, a mere mortal, could have never planned it out myself.</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I hoped that the hurricane would blow over quickly and the doctor’s office would reopen uneventfully by Tuesday or Wednesday, and I would be able to go in for monitoring. </span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Little did I know…</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">By Monday afternoon, Sandy made landfall. It was pouring outside and the winds were whipping mercilessly. I started getting worried that this was no ordinary hurricane. On Tuesday the worst was over and much of New York emerged from hiding shell-shocked to inspect their damaged homes and salvage their earthly possessions. My area was completely unaffected, with work and school basically back to normal. But there was no electricity in Lower Manhattan, and that included the Fertility Center.</span></div>
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<span style="background-color: transparent; color: black; font-family: "times new roman"; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">On the home front, I was not coping with Hurricane Dovi. He was <a href="http://www.autism-parenting.com/2012/10/hurricane-dovi-still-in-full-force.html" target="_blank">all over the place</a>. Finally, when the Center resumed regular hours, I called the Fertility Clinic anxiously to find out when I should come in for further monitoring. I was unable to reach anyone. Their web site, too, was down. I didn't know if it was safe to continue on Medication Y indefinitely. But on Thursday, </span><span style="white-space: pre-wrap;">I was finally contacted by a nurse, via cell phone.</span></div>
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<span id="docs-internal-guid-4353e7e4-a6ec-cabb-f6d0-cd4bf5ff82e7"><span style="vertical-align: baseline; white-space: pre-wrap;">“Come in tomorrow morning between 7 and 9 for monitoring. There is no electricity, so you’ll have to walk up five flights of stairs. Bring a flashlight. Our bathrooms also work with electricity, so make sure to go to the bathroom before you come.”</span></span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Woohoo! We were back in business! I was so relieved. This was great! I wasn’t entirely off scot-free; they made no promises about my ability to continue this cycle - it all depended on the results of the monitoring. But finally, at least I was in contact with the center!</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">It all seemed so surreal, like out of a novel. I pictured myself marching up the darkened flights of stairs with my flashlight, like a thief in the night. Or a detective looking for clues. I thought to myself, </span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">This will make a great story to tell the kids one day - if this ends up positive!</span><span style="vertical-align: baseline; white-space: pre-wrap;"> It added a whole lot of drama to the cycle…</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Normally I take the trains to the center, but this time I would have to take a cab, as all of the train passages into the city were flooded, or were not operational because of the electric outage. What I had </span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">not</span><span style="vertical-align: baseline; white-space: pre-wrap;"> counted on, thought, was the Great Post-Hurricane Gasoline Shortage. By Thursday night I heard distant rumors of cars lining up around gas stations and waiting for hours. But surely I would find a taxi service to take me to Manhattan in the morning! I was positive about it.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Boy would I be proven wrong…</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I got up bright and early on Friday morning, knowing that I had a long commute ahead of me. I called car service after car service, but no one was operating - there was simply no gasoline. (This was all in the pre-Uber era; can you imagine how much longer the gas lines would be today???) My only other option was a shuttle bus into Manhattan. When I reached the street where the shuttles were leaving from, my jaw dropped to the ground. The lines for the bus were four people wide, and stretched for </span><span style="font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">four long blocks!</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">At this rate, I would be at the center next week…</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I began to panic. It was 7:45. How on earth would I get to the center by 9:00? Even if I walked all the way to Manhattan I wouldn’t get there in time.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I recalled reading a news story the day before of people who had hitchhiked over the bridge to the city. I took a deep breath and walked over to the bridge. Then I raised my eyes heavenward and said, “Master of the Universe, </span><span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">You</span><span style="vertical-align: baseline; white-space: pre-wrap;"> put me into this mess, therefor I beg You, Please figure out a way to get me out of it! Even if I have to sprout wings to fly over the bridge - so be it!”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I had barely finished my heartfelt prayer </span><span style="vertical-align: baseline; white-space: pre-wrap;">when someone </span><span style="vertical-align: baseline; white-space: pre-wrap;">ran over to me. “Excuse me, are you looking for a ride into the city? They are only allowing cars with at least 3 people to cross bridge and I’m in the need of another passenger. Are you interested?”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">THUD.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">My jaw hit the floor again.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I was speechless.</span></div>
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<span style="font-style: italic; vertical-align: baseline; white-space: pre-wrap;">Yeshuas HaShem Kiheref Ayin.</span><span style="vertical-align: baseline; white-space: pre-wrap;"> Salvation had come in the blink of an eye.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I had indeed sprouted my wings.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">We flew over the bridge as if on air. It was empty. My generous benefactor had only half a tank of gas, and he had to get to work. His father was the third occupant in the car. We entered Manhattan; it was eerie. It was like a ghost town; dark and deserted. The city that never sleep was indeed fast asleep. Unbelievable.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">I couldn’t believe that just a scant few minutes earlier I was filled with despair, trapped on the Brooklyn side of the bridge, and now I was getting door-to-door service! What an amazing act of kindness!</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">The Fertility Clinic was indeed enshrouded in darkness. I donned my headlamp and began the laborious climb up the five flights. When I reached the fifth floor I was in tears, but they were tears of happiness. I MADE IT!!! I looked around the makeshift monitoring station and was amazed by the dedication of the staff and the patients alike. Nothing can stop a determined cycler - not even a hurricane!</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">It was just incredible. The nurses were drawing blood near the window in one of the doctors’ offices, using just daylight. A generator was powering a single ultrasound machine in one of the exam rooms. Everyone was working in near-dark. It was a surreal scene, and it was oddly thrilling to be part of it.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">(I was able to get home from the center far more easily; there was virtually no line for the shuttle buses going back to Brooklyn. It was truly strange to cross over the invisible demarcation line on 40th street into bustling ‘civilization’ with light and machinery. I felt like I had exited a time warp back onto the electrical grid!)</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">In the end the doctors made me stay on Medication Y another full week, which pushed off my due date even further. But it was all in HaShem's hands.</span></div>
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<span style="white-space: pre-wrap;">In the midst of it all, drama was continuing in my house, of course. I was starting to really butt heads with Dovi's home health aide, Leticia. (More on that in a future post.) The Center started toilet training him, which meant I had to follow up in the afternoon, and it was not going well. Between running to the Fertility Clinic for more appointments and trying to keep the house afloat with Dovi's destructive presence I was depleted. We had a very coveted appointment with a <a href="http://www.autism-parenting.com/2012/11/ritalin-and-signing.html" target="_blank">top child psychiatrist</a> in the city, after a long, nine-month wait. We had taken Dovi off the Clonidine 9 months before that because it was making him very depressed and sleepy. This new doctor decided to start Dovi on Ritalin. I was skeptical, because I knew that children with sensory processing disorder AND autism do not do well on stimulants. They start feeling their senses tingling a lot more and it doesn't help calm their hyperactivity. I knew what it felt like; being on Adderall I knew that heady, buzzy feeling one gets when on a stimulant and I couldn't imagine how horrid Dovi would feel on it. But Dr. Cartwright stood his ground.</span></div>
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<span style="white-space: pre-wrap;">It was a long, rough appointment. My mother came with me, and it remained her 'tradition' ever since. Aside from once or twice when I took the home health aide with me instead, she always came along with me. It was her twice-yearly opportunity to bond with Dovi aside from the brief appearances he made at her house during the year.</span></div>
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<span style="white-space: pre-wrap;">When I arrived home from the appointment, I was exhausted. I had slowly tapered off the Adderall for a few weeks in preparation for possibly being pregnant. The withdrawal was making me cranky, and I was feeling tired, fuzzy-headed, and overwhelmed the way I used to feel before I started taking it. I was scheduled to do a blood test the next morning to check if the cycle had worked. I had a superstition against taking home pregnancy tests; I opted to take blood tests and wait and pray all morning for the results. But now that I already had two children I decided spontaneously that nothing would happen if I would take a home test instead of putting myself through torture until the following morning and still wait for results. I had bought a double pack in preparation - thank goodness, because my hands were shaking so badly I botched the first test. I had to wait a little bit, drink some more water, and do a second test. I was hoping so desperately that it would be positive. The journey just to get to this day was crazy - oral meds, hormone patches, hormone injections and hormone suppositories daily! Somehow, keeping in mind the miracle I experienced to get over the bridge on that morning a month before, I just <i>knew</i> that something out of the ordinary was about to occur.</span></div>
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<span style="white-space: pre-wrap;">I could barely breathe as I picked up the pregnancy test - the newfangled digital kind, squinted my eyes closed, and slowly opened it....</span></div>
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<i>To be continued....</i></div>
</span>Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-44468733561396389042017-03-02T19:47:00.001-08:002017-03-02T19:47:24.732-08:00Weighted Blanket, Compression Shirt, Body Sock, Torso Wrap... for saleMy immediate apologies to my avid fans who are waiting with bated breath for the next installment of the Dovi saga. I know you are going to be acutely disappointed when opening your inboxes tomorrow morning and finding this post instead. Don't worry, the next chapter will come in due time.<br />
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However, this post is important to me. I have started to declutter the house and am finding new homes for many of Dovi's specialty items that he no longer uses. The LittleKeeperSleeper pajamas... the oversized size 7 snap onesies... leftover diapers... slowly but surely all the specialty products I had painstakingly researched and purchased over many years are being dispatched to new owners. It's like I'm unraveling and undoing six years of my life. It feels bizarre.<br />
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Back in the day I bought all sorts of sensory aids for Dovi, desperate to find the magic combination of deep pressure and sensory solutions to calm the persistent hyperactivity and proprioceptive confusion. Unfortunately Dovi really didn't care for most of the products. They were really costly. The Abiliblanket cost $175. The SPIO garment cost $130. The Southpaw vest, $75.00. and so forth. These things have been sitting in a box in the back of a closet, waiting for me to have a few extra minutes to list them on ebay. It took a few years, but I finally listed them. I am posting the link here in case someone googling any of these terms come across this blog entry and still finds the item up for sale on ebay.<br />
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<a href="http://www.ebay.com/sch/mindysfleamarket/m.html?_trksid=p3692" target="_blank">Click here for my ebay page</a><br />
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Thank you, and good luck! I will be back in a couple of days with the next chapter.Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com1tag:blogger.com,1999:blog-6690082237623994514.post-20223796543631835432017-02-27T06:10:00.001-08:002017-02-27T06:10:38.030-08:00Project Sibling, Take OneSmall piece of business first: If you're a real-life or online friend of mine, you've already seen and heard that Dovi is doing very nicely at his new digs. I visited him on Tuesday and it was wonderful. If you're not, here's a secret egg: Somwhere in this post I snuck in a photo I took of a very happy Dovi in his new room.<br />
Now, on to the meat and potatoes of the blog. Finally I will take a deep dive into the next topic I wanted to explore.<br />
But first, a bit of a preamble here, and this will very likely apply to many upcoming posts, if not all of the posts to ever be posted here.<br />
When I first started the blog, I tried to keep it carefully neutral so that much of what I write would apply to and appeal to the general audience. I gave Dovi's caregivers generic names. I didn't really talk too much about the lifestyle and community I live in, etc. But as time went on I realized that a) the vast majority of my audience are people who know where I come from anyway, and b) it was too cumbersome and complicated to remain general and neutral. So while I will still try to make my articles applicable across the wide spectrum of readers, my experiences and stories will definitely be more reflective of my background, which is extremely important to the story. If I don't, I will be too occupied with explaining / apologizing / justifying everything. Of course, I will provide translations, explanations, and context whereever I feel that my points might be misunderstood. But in general, you can safely assume, whereever you find yourself a bit perplexed, that I am coming from a specific cultural background with its own unique societal, social, religious, domestic, and etiquette norms and expectations.<br />
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With that being said, I want to issue a disclaimer that this entry might be a bit more of the 'mature' variety. Nothing explicit - G-d forbid! However, if you're a sheltered teenager, maybe delete this email now ;). If you're not, go right ahead and read on.<br />
As I said, I will pick up the narrative after the summer when Dovi had turned four. As you all know, I was pregnant while writing this blog. I didn't write much about what transpired during that exhausting but fascinating year. There's a preface to those amazing stories. From the moment the thought of having another child came into the picture, HaShem quietly guided everything, down to the precise moment, in His Divine Wisdom.<br />
Some of you already know my life story. I struggled with infertility and pregnancy loss for the first 9 years of my marriage. When Chaim was 2 years old my husband and I discussed leaping back into the craziness that is infertility treatment. I wanted to wait until Chaim was older, because I worried whether I'd be able to juggle a pregnancy and an active, high-needs toddler who was not yet toilet trained or in playgroup. My husband reasoned that the first try wouldn't work anyway, so let's at least get started. Surprise, surprise - the first cycle worked. 9 month later Dovi was born.<br />
The pregnancy was very hard on me. I was considered a high risk patient due to all the prior losses and Chaim's premature birth. I was monitored very closely, which meant spending close to a full day in Manhattan every 2-3 weeks, which meant finding childcare for Chaim for those days. I was exhausted and craving daytime naps desperately, which I couldn't have since Chaim was no longer napping but also not in playgroup. I tried toilet training him all winter so I could send him to preschool, where toilet training is a requirement, and it was a no-go. Chaim <i>finally</i> started preschool exactly a month before Dovi was born. It was rough. That's when I told myself that I wouldn't repeat the same mistake, and the next time I would start treatment again, it would be only when the Dovi was already toilet trained and in preschool. I reasoned that he would probably be easier to toilet train - Chaim did have language processing issues and was quite spoiled - so I figured that I would cycle when Dovi was about 2.8 yrs old, instead of 2.2 like we'd done with Chaim.<br />
Ha!!<br />
When Dovi was two weeks old I <a href="http://www.autism-parenting.com/2013/01/what-causes-autism.html" target="_blank">developed a pelvic infection and was hospitalized for a week</a>. It took two months for the abscess to drain. I lost 30 pounds and was very weak. My high risk obstetrical team could not figure out what had caused the infection. Only one doctor came up with a possible theory: When my water broke, I never had a gush of fluid, only very slow drips. It's possible that the fluid became trapped in a small 'window' in the previous C Section, and collected there and turned into an abscess. With this thought in mind, I visited my infertility specialist when Dovi was 16 months old to discuss what my childbearing future could possibly hold. She was downright nasty to me for some reason, but when she did the ultrasound she told me she was shocked that my insides seemed pretty much unscathed - she was sure she'd find a war zone and declare that my childbearing years were over. As such, she told me to do a sonohysterogram, which would give a more detailed picture. I put the prescription aside, figuring I'd take care of it after Dovi was two years old.<br />
Well, we all know what ended up happening. Dovi was diagnosed with PDD-NOS/Autism five months later, and all thoughts of having more children receded to the background. Life was so consuming and overwhelming that there was no point in exploring the topic. But several months later, something in me snapped. Life was so crazy and abnormal that I was desperate to do something to make things a little more normal and happy. I decided to go ahead and do the sonohysterogram, so that at least I would know if I was medically cleared to go ahead and do another infertility cycle. Thank G-d, the findings were that there was just a really tiny thinning of the uterine wall and it wouldn't be dangerous to have another child - via C-section, of course.<br />
Relieved, I scheduled an appointment with the doctor to plan out the cycle. It was pretty close to Pesach (Passover) already, so the plan was to do the cycle about two weeks after Pesach was over. The doctor was pleased with the results of the sonohysterogram. But during the visit I casually mentioned another small fallout of the birth which I thought was more of a nuisance than a medical issue. The doctor, however, was more alarmed, and she would not even discuss scheduling a cycle before I had that issue thoroughly checked out.<br />
I was thrown for a loop. I panicked. There wasn't enough time to still go see a specialist before Pesach so that I could still do the cycle right after Pesach. I started burning phone lines and driving people crazy, scheduling an appointment with the specialist literally several days before Pesach, trying to find childcare, driving people up a wall. It was insane. During the whole craziness I happened to talk to one of my sisters in law who had given birth a month earlier and asked her what it was like, how she managed to get Pesach done when she was still recovering from childbirth and had a small baby. She told me it was really hard. I confided in her that I was planning to do an infertility cycle after Pesach, which if it worked, would put my due date about a month before the coming Pesach. She said: "If you can help it, I don't advise giving birth so close to Pesach. It is very, very hard."<br />
I was dumbstruck as her words penetrated. I realized that this new obstacle towards having another baby was the greatest favor HaShem could have possible done for me at that point.<br />
Normally, in the ultra-Orthodox community, family planning isn't a given. Sure, if there are legitimate reasons to delay having more children - be it medical, emotional, financial, or what have you - people do what they need to. But regular, average parents don't have the luxury to sit with a calendar and plan out when the ideal time would be to have a baby. They deal with the timing as it comes up, no matter how inconvenient. Mothers have had babies before Yom Tov, during Yom Tov, before making a child's wedding, after a child's wedding, on Yom Kippur - whatever. However, since I need medical assistance to have children, at least I could try to plan it for a manageable time period instead of it happening in any random month. The calculations were painstaking and precise, because I had to take into account the month I was actually running back and forth to the doctor - I needed my husband to put the kids on the buses in the morning, so it couldn't be during his busiest seasons at work - and I also looked at the general time of year I'd give birth. The month leading up to Pesach, over Pesach, during Tishrei, etc. etc. - tend to be a more difficult and busy time of year, so if I could help it, I tried to avoid planning it that way. But this time I had chosen to brush aside the concern of giving birth a month before Pesach, telling myself that if everyone else can manage, so can I. Speaking to my sister-in-law, who was living the stress of recovering from childbirth while making Pesach at that moment, put a break on my runaway plan. I took a pause and let the facts sink in.<br />
The next day was a particularly trying day for me. The kids woke up very early and I had a very busy day. While making all the frantic phone calls trying to make my appointments line up, I found my stress building up to explosive levels. As I rushed out the door to pick up Dovi from his ABA sessions and take him to OT, then rushing home and dragging him up three flights of stairs, feeling my last vestiges of energy depleting with every second, I was struck by two epiphanies.<br />
1) <i>I should not be having another baby while living in this small apartment.</i><br />
We were living in a railroad-style apartment, with the boys' bedroom attached to ours. Chaim woke frequently from nightmares, screaming, and Dovi would remain awake for 2 hours after that. That left me sleep-deprived and bleary eyed most of the time. The three flights of stairs were a tremendous burden; Dovi would put up a big fuss going up and down the stairs. He also needed much more room to roam; he felt confined and often tried to leave the house or even climb over the porch railing to escape the house. I could not picture myself being highly pregnant and trying to coax Dovi up or down those stairs. We definitely needed to think about moving before we could think about having another child.<br />
(Boruch HaShem, we did move to an <a href="http://www.autism-parenting.com/2013/01/we-gotta-get-outta-here.html" target="_blank">amazing apartment</a> several months later.)<br />
2) <i>I am not doing <u>anyone</u> a favor by having another baby now. Not to my husband, not to my kids, not to myself, not even to the baby born into this chaos</i>. Again, had I gotten pregnant on my own, without medical intervention, I would have welcomed it as a blessing and dealt with all the issues and hardships that came along with it. But the fact that HaShem was clearly placing huge obstacles in my path was a message to consider. Our lives were so chaotic and insane at the moment, and adding the craziness of cycling, a high risk pregnancy, birth, postpartum, and all that on top of it, would not be beneficial to anyone. I was being simply selfish with my need to have something normal and happy to make me feel better. It was no one's benefit.<br />
Making the decision to put the brakes on my quest for a sibling for the boys was so liberating. A huge burden had been lifted. I knew that I would know when the right time would be. I figured I woudl wait until the following winter, when Dovi was 3 1/2 years old and going to the Center and things were a lot calmer.<br />
But the following winter, things had not yet calmed down at all. True, Dovi was out of the house every day from 9 to 3, but I still running myself very much ragged. Between taking him back and forth to the Center, managing him in the evenings, getting a handle on Chaim's behavior and issues, and trying to keep the house running, there was no space in my brain to consider the overwhelming spectre of going through an infertility cycle.<br />
I made the calculation that I was the best off doing it the <i>following</i> winter, when Dovi would be four years old. This way, I would be due in the summer while Dovi was in summer camp - sleepaway camp for special needs children starts at age five - and when he came back from camp and started school, he'd be gone for most of the day, from around 8 to 4. That would make it a lot easier to deal with a newborn baby, plus it would fill the long days with him out.<br />
It seemed perfect.<br />
And so, I spent the next year simply getting my life together and juggling a zillion balls in the air. I saw the doctor again in September of 2012 and we set up the financial and medical portions of the upcoming cycle. Then I left the rest in HaShem's hands.<br />
And boy, did He have some amazing stories prewritten for me.<br />
<i>To be continued....</i><br /><br />P.S. You hung on til here, now you deserve that promised pic of Happy Dovi at his new residence. Which you probably have already seen anyway . :)<br />
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<br />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com1tag:blogger.com,1999:blog-6690082237623994514.post-39614978051001759442017-02-18T22:22:00.000-08:002017-02-18T22:22:19.114-08:00Second ThoughtsWriting that last post took a lot out of me. It was like baring my soul to the world and admitting that<i> I failed. I can no longer handle my severely autistic child and had no choice but to place him in a residential facility</i>. In reality, there's MUCH more to discuss and dissect before such a statement can even be made. There's the years of build up and exhaustion and the toll a child like this takes on the family. And believe me, the decision was not made lightly, and not without a fight from me - a lot of fight. I did not feel ready to take this momentous step until a year ago when Dovi's level of aggression and the incredible strain his presence was having on every member of my family - my husband, me, and our other two boys - became unbearable. Even then, the amount of tears I shed, the number of nights I could not sleep, and the enormous amount of inner work I had to do to process oodles grief and guilt, would fill a book. I was hoping that once Dovi was settled in and I knew he was happy, I'd feel better too. But it took two weeks for the initial depression to pass. I felt like a limb had been amputated. I couldn't do anything those first two weeks. My family was blossoming, Dovi was doing great at his new place, but I was doing terribly. My heart was waging a war with my brain. Even though my brain knew that we had done the right thing for everyone involved, my heart just couldn't let go. Thankfully, I've gotten used to our new normal, and I will be visiting Dovi finally this week, so I'm feeling a lot better.<br />
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But then... the first nasty comment came in, on the previous blog entry. I was expecting some negativity, but this person's comment was a doozy. I didn't let it through, of course, and I won't even deign to address it. Because the person writing it wasn't only 100% in the wrong, but she has absolutely no idea what life has been like for the past six years, and how absolutely <i>urgent</i> this placement was. That the facility Dovi is in, is not a prison, or exile, or an institution. It is a wonderful school geared precisely to the severely autistic population; a place where Dovi will actually <i>learn</i> real life skills and be toilet trained, things that are not possible in a regular public or private school, plus a busy household. But the comment gave me pause, as I realized that there are going to be naysayers out there who will find something rude and insensitive to say to every post I will write. And I thought to myself, <i>what do I need this aggravation for? </i>I finally managed to move forward and put the past few difficult years behind me. Why relive it? Why dredge everything back up and revive this blog?</div>
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I am not writing this blog because I need to defend our family's decision, or to feel better about it. I am writing it for two reasons: One, because as time will move on and the memories will dim, I am afraid that Dovi's untold story will be forgotten. The further away I will go from the day-to-day crushing burden and stressors that were part and parcel of raising Dovi, I will be loathe to dig it up all up again and rehash it. Now is the time. I want to be able to relive those days, bit by bit, and find the beautiful parts and the unbearable parts. I want to be able to be a voice to those brave heroes who are struggling every day to keep their heads above the water and survive another day. And I want them to know that they are not alone. Two, because the mothers and fathers of high-needs special needs kids who had to come to the truly heartwrenching realization that the situation was harmful to the caregivers, siblings, and the child as well, and that they had to find a better living setup for their child, should also feel less alone. Early on in my placement journey I got to know Amy of <a href="https://winklett.com/" target="_blank">Normal is a Dryer Setting</a> and I read her entries, one by one. Now when I went through my own heartbreak when Dovi's placement became a reality, I read and reread her entries of the days following her son's placement, and I was able to identify with every word. Blog like hers are what kept me going. So you never know; this blog might be a balm to someone else's aching soul when they face the same gut-shattering dilemma.</div>
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It might be hard to understand where I come from and what the grueling struggle for survival is really like, if you're not a parent of a severely autistic child yourself. And ironically enough, some of the negativity I've faced - not here, but on other social media - did come from other special needs parents, who couldn't understand why I wasn't coping. Well, that's okay. Every child is different; every parent is different; family dynamics differ; community norms, social expectations, religious obligations, etc differ from person to person. I don't expect every reader to understand. But I do ask that the readers refrain from making rude and hurtful comments. They are not helpful.</div>
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So, I'm still having second thoughts whether it is worth it to put myself through the potential hurt that might result from continuing with the blog. I think the benefits will outweigh the risks. I hope so.</div>
Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com4tag:blogger.com,1999:blog-6690082237623994514.post-17589372476441232182017-02-05T09:20:00.000-08:002017-02-05T09:20:22.907-08:00Home Away from HomeI'll never forget the moment, as long as I live. It was smack in the middle of the <a href="http://www.autism-parenting.com/2013/04/summertime-and-livin-aint-easy-take-3.html" target="_blank">most difficult summer</a> ever. It was Thursday night, after a long, grueling week of managing both kids by myself. My husband finally arrived to the Catskills, and I breathed a sigh of relief, knowing he would take over and alleviate some of the burden over the weekend. Past midnight, in a blur of sheer exhaustion, I went to bed. I was about to drop off to sleep, when my husband dropped the most loaded question ever uttered in the history of mankind.<br />
"Say, what are we gonna do about finding a Home for Dovi?"<br />
Um... huh? Say what now?<br />
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I was in complete shock. Where on earth did this come from? Why now? When I was so exhausted and just wanted to sleep, and didn't have a clear head - he had to bring up such a loaded topic? It wasn't a secret that Dovi would one day probably go to live in a group home, but I didn't envision it happening before he was a teen, or older. What was this all about??<br />
My husband explained: "He's only gonna get harder, not easier. And the waiting list to get into the Homes is very long."<br />
That was a given. But why was he bringing it up at this bizarre hour???<br />
Turned out he had a companion in the car on the way up to the Catskills - a friend of his who had a 16 year old autistic daughter. Their house was destroyed. The walls were full of holes. They were physically and emotionally drained. "Don't wait until the toll on your family is irreversible," his friend warned.<br />
Well, that made sense. A 16 year old aggressive autistic person isn't the same as a little 4 year old. A four year old is a<i> baby. </i>And unless he is medically incapable, a baby belongs at home, with his parents.<br />
Of course, my husband did not want to send Dovi to a group home at age four. He was trying to tell me that I should start looking into it, because it could take years.<br />
But I would not <i>hear</i> of it. This was preposterous. Dovi still had a lot of potential. He was so young. Switching my mindset from helping him grow and achieve skills into the mindset of finding a placement for him, at age four, was beyond ridiculous. I told my husband that the subject was closed and I did not want to hear one more word about it.<br />
There was another heavy, painful reason why this discussion horrified me so. My husband has a close relative with severe physical disabilities who has been living in a wonderful group home since age six. This person has thrived beyond expectations and the placement was the best thing that could've happened to everyone involved. While I fully understood the reasoning for the placement, I knew good and well that no matter how well intentioned the extended family is about keeping contact, after a while it becomes too difficult to keep visiting and calling. Even I was guilty of using every evasive reason to keep in contact with his relative and aside from one brief yearly visit or family weddings, I didn't see his relative much. I was worried that if Dovi would go into placement at a very young age, he would be easily forgotten very quickly.<br />
I wasn't a total stranger to the topic of placement. When I went to the <a href="http://www.autism-parenting.com/2013/01/the-vital-importance-of-getting-support.html" target="_blank">support group</a> in my neighborhood, that was all the women would talk about. Their kids were way older than Dovi, and they were tired. I listened to their conversations with half an ear, but it didn't pertain to me that much, so I didn't absorb much. There was one group of women in particular for whom this topic was front and center. One was a mother of a 21-year-old high-functioning son; the others had sons pretty similar to Dovi in functionality and behavioral destruction. They were, at the time, 7.5, 10, and 12 years old. That made more sense to me - there comes a point where the child because stronger than the parents, perhaps even taller, and it takes a huge toll on the family. But at age four? No way.<br />
Still, the next year I listened more closely to everyone's conversations about placement. And the truth left me shocked and shaken.<br />
It turns out, contrary to popular opinion, that group homes are <i>not</i> waiting for our children with outstretched arms and a welcoming red carpet. The struggle to get into them is immense. And going on a waiting list at a young age does not really do much. It's such a matter of sheer luck (otherwise known as Divine Orchestration) to get into one of these places. I knew that my chances would not be very good. The locally run, Jewish, kosher group homes are not falling over themselves to accommodate behaviorally challenging children at all.<br />
My good friend Sylvia was the most active and determined in getting her son Zevi placed. You probably don't remember anymore - you might want to reread the <a href="http://www.autism-parenting.com/2013/01/the-vital-importance-of-getting-support.html" target="_blank">post</a> where I described how she was the first person I reached out to, and her son Zevi is pretty much very similar to Dovi (although they are different in many respects). She ended up really being my guide on how this process works.<br />
It took another year before I gave the topic another thought. By then I was nine months pregnant and Dovi had entered another dimension - the never-stopping, always-destroying something phase. And the struggle to find caregivers worsened. Respite programs were dropping us left and right.<br />
Then little Levi was born. I got scared to be home alone with the two of them. Dovi required 1:1 support <i>at all times</i>. I was constantly consumed with recruiting and hiring people. It was an endless drain.<br />
So I swallowed my misgivings and began doing my research. He was put on the waiting list of every group home possible.<br />
It took two more years of hoping, waiting, days when I knew that I <i>cannot do this much longer</i> and days of unexpected calms in the storm - when things suddenly took a turn south and Dovi's aggression ramped up to new levels. None of the waiting lists were budging. So I had to swallow even bigger misgivings and start pursing a different route: residential schools. The process is even more grueling than waiting for a slot at a group home. Ultimately, it is a better solution for children with severe autism. I will be writing a lot about this.<br />
It is now 4.5 years later from the day my husband brought up that dreaded word. I can wrote <i>books</i> on all that transpired since then. Dovi grew up. He grew taller. He grew stronger. He grew more strong-willed. He grew heavier. He grew more sensory, more needy, more dangerous. And he also grew more delicious. And eventually, we could no longer give him what he needs to grow into his full potential. This child is brilliant and adorable. He can do so much, given the right setting. Disciplining him became impossible. Juggling the needs of everyone in the house while maintaining our own sanity was just not doable anymore.<br />
And so the day came. Several days ago, Dovi left home. He went to live in an incredible facility. He is doing well there, so far. As for myself, I am still struggling to adjust. Caring for Dovi was my central focus, and now I'm left with arms flailing, trying to find myself again, looking for the shreds of the <i>me</i> that existed six years ago before this nightmare began.<br />
I successfully went through the five stages of grief after Dovi's diagnosis, and came out with healing and acceptance. Now, as we embark on this next stage of Dovi's life, I have to go through the five steps again. This is a new kind of loss, and it takes a lot of processing to feel okay and healed. Reopening the blog and reliving the events of the past 4 years is part of that process. While I feel no guilt whatsoever about this big step - we all know it will benefit Dovi <i>immensely</i>, in ways we can't even imagine, the crazy years building up to this point are so packed with insanity and beauty and incredible stories to share, that I want to untangle and examine them all before the memory begins to fade.<br />
And so, I am going to dial back to the time I started this blog. At that time, I mostly spoke about the past as well, about the events leading up to the point the blog started. Even if you've read it all, you've probably forgotten most of it - believe me, even I did!!! but a refresher course is not necessary. If you know me off the blog, or if you're an autism parent yourself, you can imagine what's going on at the point of having a super active 4 year old with non-verbal autism. And the point of the upcoming entries isn't going to be to justify or defend Dovi's placement. It's to make sense of all that happened and relive everything - as well as to be the voice and support for many others walking in these shoes. I will also be demystifying the knotty, murky process of finding residential placement for severely autistic kids. Who knows, this blog 2.0 might end up helping others - which is one of my primary goals.<br />
So buckle up your seat belts and get ready for a wild ride. The waters ahead are getting choppier and choppier. But we will also pass by some stunning vistas and beautiful islands. We will see some rainbows peeking out from behind clouds, and we'll see some silver linings behind other clouds. And you'll feel HaShem's presence in every blog entry.<br />
Bye bye my beautiful boy... as you set off on this next journey of your unique life, I will be right behind you, cheering you on. I can't wait to visit you soon and squeeze you tight.<br />
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<br />Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com4tag:blogger.com,1999:blog-6690082237623994514.post-83757307781652927132017-02-01T07:36:00.000-08:002017-02-01T07:36:56.835-08:00Take TwoHello, my old friends.<br />
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You're surely wondering why I woke up suddenly and am blogging again.<br />
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Let me tell you a little story.<br />
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Three years ago when this blog was at its height of popularity, it attracted all kind of readers. Some were other parents of severely autistic children, some were my friends via other online means, and some were random web surfers. The most surprising reader, delightfully, was the editor of a popular weekly magazine which I read faithfully and am a huge fan of (and have written for here and there). The editor was very moved by one of the blog entries and wanted to adapt it for the magazine. I declined, telling her that one day, down the line, I'll want to publish my story in one of the magazines, and I want to do it right - not in a hodgepodge smattering of random articles. Since then I was approached several times by different magazines, including the same one, about publishing a mini series about raising Dovi. But I had the same answer every time: The time is not yet right. There is no turning point in the story; no conclusion. Dovi hasn't had a miraculous 'cure' or anything. There's no point to writing a series of gut-wrenching articles about how difficult it is to raise a child like Dovi. I'm not going to sugarcoat it; I'm not one of those 'rainbows-and-unicorn' moms who love and embrace this brand of severe autism and go all goo-goo-gaga about how I wouldn't change anything. (Newsflash: I don't know ONE mom of a severely autistic child who thinks that way. The rainbows-and-unicorn crowd live with the high functioning population. But more on that later.) So what would be the point of writing about it? There had to be a huge conclusion, a turning point that will make a mini-series worth writing.<br />
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Well, it took a few years, and there has been a big change in Dovi's life story. Not the kind of change I would have envisioned four years ago when I started writing this blog. It's a bittersweet kind of turning point. If you know me in real life, or even in virtual life, you know what's going on right now. (If you don't know me anywhere off this blog, be assured that everyone is health and well, no need to worry. All will become clear very soon.) So now there is a reason to revive this blog, because finally, there is more story to tell, and there's a cohesive, sequential order to telling the story. I think the story is important, because there are scores of autism parents walking in my shoes, and I think it'll be beneficial to have have their voices heard through Dovi's story. It'll also be boundlessly therapeutic to explore and relive the past few insanely difficult years and put everything into perspective.<br />
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Last but not least, I can use the $$$, LOL :). With all the changes going on right now, some of my sources of pocket change will be diminished or gone entirely, so this is my foray back into the world of writing. But in order to make this blog remotely worth it - I'm not even talking lucrative - I'm gonna need your help. When you shop on amazon, consider using my link. Here it is: <a href="http://amzn.to/2kR3aZL." target="_blank">AMAZON.COM</a>. (or click on the ad below.)<br />
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Also, please take a minute every time you visit the blog, to check out the ads crowding the perimeter of this site, to see if any of those stores/sales interest you. I can't have google ads on the blog, which is usually the primary moneymaker of any blog, because they inexplicably closed my account a long time ago and are refusing to reopen it or give any kind of explanation. So at least try to see if any of the stores I'm an affilliate with, are things you can use. The blog will undergo a facelift in the next while so that it reflects the recent changes and is more pleasing to the eye.<br />
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And then very soon, I will resume the tale of Dovi's life. You'll have to hold on to your seat belts, because it's quite the wild ride.<br />
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Love you, my boy.<br />
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<iframe border="0" frameborder="0" height="90" marginwidth="0" scrolling="no" src="//rcm-na.amazon-adsystem.com/e/cm?o=1&p=20&l=ur1&category=amazonhomepage_2017&f=ifr&linkID=2a17013485cac9b3869c7867f6e51b19&t=autisparen-20&tracking_id=autisparen-20" style="border: none;" width="120"></iframe>Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com2tag:blogger.com,1999:blog-6690082237623994514.post-5262616201568871702016-11-10T20:14:00.000-08:002016-11-10T20:14:32.144-08:00MIracles do Happen!!!Well, Ladies and Gents, *SOMEONE* has been pulling strings for me, because I HAVE MY FACBOOK ACCOUNT BACK!!! I don't know HOW it happened; because this is the 20th time I tried once again to reinstate my account, and I was always met by a brick wall or by some bot that never replied to me. But B"H this time I did reach some real humans with compassion, and I am still speechless with shock that I am able to get my memories back. 20 precious months of memories t hat I thought I would never have access to again. I'm glad I never gave up, and I'm grateful to God and any human intervention that made it possible. Now the possibilities are exciting and infinite; I might just start sprucing up this blog again and think of resuming to write. It'll take a few weeks but exciting things are in plan. Stay tuned.Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com1tag:blogger.com,1999:blog-6690082237623994514.post-8386524749476453442016-11-09T08:53:00.000-08:002017-07-07T09:08:48.457-07:00CAN ANYONE HELP ME CONTACT A HUMAN BEING AT FACEBOOK TO HELP GET MY TIMELINE BACK??!!!Hello all.<br />
Life has been insane.<br />
There's so much to write.. so much to tell.. things have changed so much.<br />
I'm planning to start writing again, in a few months, once some things that have been going on are finalized and I can talk about it.<br />
I haven't logged into this blogger account in probably a year. I found about 20 comments awaiting moderation. While screening the comments, I accidentally deleted about six really good comments. Instead of hitting 'publish', I hit 'delete'. I apologize. So those comments didn't get published, but I did see them.<br />
Now, here's the part where I need your help - desperately.<br />
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For the better part of the past four years, I haven't updated this blog about our ongoing struggles to manage living with a deliciously adorable yet extremely behaviorally challenged growing autistic child. Those of you who know me in real life or elsewhere online, have probably gotten plenty of updates along the way and know where we're currently at. There are so many little incidents and backstories that would make for amazing blog entries. Unfortunately, they may be lost for all of eternity. Why? Because they have been swallowed up in the black hole called Facebook.<br />
For obvious reasons, I don't use my real name on Facebook. Very unfortunately for me, I chose an extremely convoluted name on the spur of the moment. After about a year, I guess someone reported me to FB and my account was suspended until I can prove that the gobbledygook name I was using was a real name. Of course there is no way to prove that. This happened in July of 2015. That account is still in limbo. I have tried to contact FB over and over to explain that there are legit reasons why I was using a fake name, but I acknowledget that I violated their terms of service and am willing to use my real name. I uploaded 3 genuine pieces of ID. The first couple of times I did it, I just kept getting canned answers from FB that the documents do not match my profile and they can't release the acct until I do so. Since then, every few months I try untangling this mystery again, but by now I don't even get the canned answers.<br />
Basically, 21 very interesting months of my life have vanished into thin air.<br />
I kicked myself 80,000 times why I didn't periodically download my wall, so that I don't lose my info. Now that info is swallowed into a black hole with no possibly entry. I have tried begging FB to do the humanitarian thing and just email me my timeline if they don't want to give me my acct back. But since it's all automated, my pleas go unheard.<br />
<b>IS THERE ANYONE OUT THERE WHO HAS ANY WAY FOR ME TO CONTACT A REAL BONA FIDE HUMAN BEING WHO WORKS AT FACEBOOK WHO CAN PLEAD MY CASE THAT I SHOULD GET MY WALL/TIMELINE SENT TO ME, OR MY ACCOUNT REINSTATED? I AM HITTING A BRICK WALL.</b><br />
I've almost gotten over the loss of my diary, and basically the record of my life, from Nov. 2013 - July 2015. I had to work long and hard on getting over it. But I cannot just lie down and roll over without a fight. I googled and googled and discovered that this happened to countless people and none of them were eventually successful in winning the fight. It devastates me to think that I'll never read those entries again. SO MUCH happened in those 2 years. So much. I'll have to recreate those memories from scratch, just from memory. It's gonna be hard.<br />
<b>SO I PLEAD AND BEG MY READERS, IF ANYONE KNOWS SOMEONE AT FACEBOOK I CAN TALK TO ABOUT GIVING ME ACCESS TO MY ACCOUNT, EVEN IF FOR JUST ONE HOUR, I WOULD BE ETERNALLY GRATEFUL. </b>And frankly so would you, because the stories that would come out of that will boggle your mind.<br />
Thanks so much.<br />
With G-d's help, I will be back.<br />
Stay Tuned.Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com0tag:blogger.com,1999:blog-6690082237623994514.post-50807984362647096782014-05-08T19:56:00.002-07:002014-05-08T19:56:34.560-07:00I've been published!I can't believe it's been a year since I had an actual, real update. It's been quite a year. Quite a year, what should I say. Many ups, many downs. One day I shall fill in the blanks.... One day.<br />
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For now, I just wanted to mention to those of you who read the local Jewish magazine, that I have a piece published in Family First (mishpacha). It's the first time I've written about Dovi, and it feels really good. I hope I get to connect to some other moms in the same shoes.<br />
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I am also toying seriously about writing a mini series on parenting a child like Dovi, based on some of the material on this blog. I will update here when this happens.<br />
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I haven't disappeared! I'm just way too busy, fortunately and unfortunately, to write at the moment.Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com2tag:blogger.com,1999:blog-6690082237623994514.post-12849417033295042412013-12-26T18:43:00.000-08:002017-07-07T09:07:37.059-07:00The Baby Gear PostTime for something a little different, methinks.<br />
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The Dovi saga is still unfolding, with many ups and downs, incredible incidents of Divine Providence, better days and harder days, but thank G-d, things are basically stable at the moment. Dovi is doing well in school, Little Levi is growing by leaps and bounds, and of course, I'm always busy, around the clock, seeing to Dovi's needs and resources and programs and such. Currently, I'm involved in a dozen different projects that revolve around Dovi; setting up a picture communication system, getting him the <a href="http://www.spioworks.com/" target="_blank">SPIO</a> vest, organizing <a href="http://www.ohelfamily.org/?q=bais_ezra/sibshops" target="_blank">SibShops</a> for Yiddish-speaking boys in my area, trying to find a transportation para for Dovi, since the new matron cannot handle him on the bus (we miss the old one :-( ), working along with the <a href="http://www.ohelfamily.org/?q=content/closer-look-today%E2%80%99s-top-best-%E2%80%9Ckept-secret%E2%80%9D-services-tomorrow%E2%80%99s-world" target="_blank">Behavior Therapist</a> that will come to our home twice a week for the next few months, and of course, every Sunday is a whole new chapter, lining up all of the people involved in Dovi's care on Sundays - the driver who brings him back from his respite program, the 2 community hab workers (who keep canceling on me) , and so on and so forth, ad infinitum. Being an unpaid Child Advocate for someone as severely behavioral as Dovi is a constant challenge. Keeps me on my toes, big time.<br />
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But in terms of Amazon products, I haven't bought much for him the past few months, aside from he usual repeats of the diapers, pullups, a dvd player, backpack harness, slinkies, light up toys, balloons, etc. On the other hand, with a new baby I've been pulling out baby related items from storage and buying more. So I am excited to share with you what products have been working for me. Perhaps someone googling "Baby Swing" or "Exersaucer" will chance along this post and click on a product and end up buying something and I'll have some more Amazon commission to then spend on Dovi's amazon products.... and so it goes in a circle :).<br />
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So if this post does not concern you, you can move right on past and continue waiting patiently for the day that my writer's block will lift and my ADD-induced fuzziness lifts, and the constant rollercoaster that is Dovi's resources and arrangements eases up a bit and I can finally fill in those blanks between last May and now, which I know you're patiently waiting for.<br />
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Someday.<br />
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But for now, here's my Baby Gear review.<br />
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First of all, Baby Levi's car seat is brand new; we opted for the Graco Snugride Car Seat. We rarely use it around the house - usually he's in the swing or Exersaucer - but it's perfect for car rides (not that he's in a car all that much....) I highly recommend it, it' affordable and serves the purpose.<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=autisparen-20&marketplace=amazon&region=US&placement=B01BGVLFUA&asins=B01BGVLFUA&linkId=450efe2a4739a52353bb00201b1c8783&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe><br />
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As for his stroller, contrary to the Brooklyn stereotype, I opted NOT to get the Bugabee. Instead I got the Mamas & Papas Urbo, which is a little cheaper than the Bugabee (I paid $489 I believe). It's sturdy, comfortable, easy to push, and compact. I love it. It's a lot stronger than the Bugabee too.<br />
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When Chaim was born, I received a Fisher Price Takealong swing as a gift. It was indispensable. When Dovi was born, I bought the updated and improved version. Today, they don't really make them anymore, and it's a pity because they are really good. So we ended up using BOTH, as they are both on their last legs in different ways and have different useful features... So I use the original swing for the accessibility of the animal toys and the Aquarium one for the music and lights. Levi is outgrowing them; he arches his back and tries to wiggle out of them if he's not strapped in... so they might both end up in the garbage very soon, as I think if I ever have another baby i'll splurge on a new bouncer or something like that.... (we never turn on the swing mechanism, I use it as an infant seat for the baby to lay around in.) Anyway here is a photo of the car seat and ready-for-the-garbage swings, with a link to the only similar item I found on Amazon, a space saver swing.<br />
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Next: B"H nursing is going surprisingly well (I had thought with Dovi around it would be impossible, but thanks to having our amazing aide around almost all the time that Dovi is home - except for mornings, but his bus comes pretty early) I am still going strong, at 5 months. My Brest Friend pillow is something I used even with Chaim (who was bottlefed) as well as with Dovi, and now I use it less, but it's still very useful if I'm not on the couch or bed and want to be somewhat handsfree.<br />
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Before Levi was born, I was very nervous how I would be able to take care of Dovi and Levi at the same time, especially if Levi needed to be held while Dovi needed to be watched over. So I researched baby carriers and after a lot of research decided on the Baby Ktan. Turns out, once again, that we have our incredible aide (I forgot what name I assigned to her - Charlene? Sheila? Something like that....), plus Levi is, bli ayin hora, a really well behaved baby and hardly ever needed to be held excessively even as an infant. Nevertheless the carrier came in pretty handy when Levi was an infant - it helped calm him, he fell asleep often in it, and it was great in the early days when I had to transport Dovi to his summer respite program and I didnt have a double stroller, or for a quick grocery dash when I wasn in the mood to shlep out the stroller for the baby. At this point, he spends a lot of time in the Jump n Bounce or Exersaucer, or on the floor with toys, plus he is quite the chunker (17 pounds at 5 months bli ayin hora!) so I don't wear him very often. But I totally recommend the Baby Ktan as the carrier of choice. It's insanely easy to put on, and it doesnt strain your back. The customer service I received from that company was incredible as well; help with sizing, returns, etc.<br />
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Now on to Baby Levi's "toys". I have to say the TinyLove company has the most incredible stuff. Most of these things I still have from Chaim and they are really durable and long lasting. (I did have to buy a new mobile for the crib, because Chaim kind of broke it - not as a baby, but now as an 8 year old :) ) We also have an arch of hanging toys for the crib (I dont see it in Amazon - probably discontinued - ) and a takelong musical mobile for the stroller ( dont see it on amazon either). I really like the crib mobile I have for him, and it's really cheap right now on Amazon. It lights up, sings soothing songs, and all that jazz.<br />
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Levi is old enough now to spend some time upright, and he has learned to LOVE to bounce on his feet! So he spends some time 'dangling' :) in the Jump n Go, and some time in the Exersaucer, when he's not in the crib or on the floor. Other times, he's in the Bumbo chair. Levi absolutely <i>adores</i> his big brother Chaim, and he waits for him to come home from school every day. Chaim's friends come over, and Levi loves to bounce up and down in the doorway watching them play, while they entertain him or sing to him. (He keeps trying to make eye contact with Dovi, and is puzzled that there is no reciprocation. Dovi has an interesting respect for him; thank G-d he does NOT hurt him, which is something parents of autistic kids worry about all the time; he doesnt climb into his crib or anything like that. If Levi is asleep in my bedroom, Dovi will go inside, and then leave - he will not wake him. I'm quite lucky in that regard BH.) Levi also enjoys watching our cleaner go from room to room and sing to him as well. When no one is in the area of the house where the bedroom are, Levi will bounce in the exersaucer and even look out the large picture window of the dining room, or be in the kitchen and watch me cook. I actually bought the exersaucer very cheaply at Walmart.com. The Jump n Go is very supportive, and I like the musical toy in the front. By 4 months old Levi was already playing with that toy, learning to pull at the handle and move the beads.<br />
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So here are baby Levi's favorite places to hang out:<br />
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And don't worry about his time spent upright hindering his development - he has a Gymini too - and he has just started rolling over! :)<br />
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Bath Seat: At first I would bathe Levi in the kitchen sink, but since he's B"h growing really quickly, he soon outgrew it. I saw this bath seat at my neighbor's house and I bought one too. It serves the purpose; I dont love bath seats because the water level needs to be really high for them to enjoy the water, but then their body isnt even immersed in the water. So I end up using the bath seat for the first few minutes, so I can bathe him, and then take him off, hold him in my arms for a few minutes while he splashes to his heart's content (all my kids LOVE being bathed!!!) and take him out....<br />
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My mother bought these cute rattles for Levi as a Chanukah gift. I'm surprised how this simple, cheap purchase is the biggest hit -- theyre easy to hold and a great teething ring too!<br />
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Finally, Levi has a great crib activity center which I originally bought as a tabletop toy for Dovi, but it ended up doubling as a crib toy for Levi as well. I dont remember the company name and don't want to bother sleeping Levi now, so I'll post the link to that another time.
If anyone wants further info on any of these baby items feel free to ask me!
Hope you're all having a great holiday week!
'til next time,
Dovi's Mom
(and Chaim's, and Levi's, too! BH)
Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com4tag:blogger.com,1999:blog-6690082237623994514.post-40776255327882387882013-11-02T20:29:00.000-07:002013-11-02T20:36:57.800-07:00PLEASE HELP DOVI GET HIS MCLAREN STROLLER!.....Dear Readers of the blog,<br />
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I feel bad to do this - but I have to pull out the DONATE button again.<br />
I am desperately in the need of a new stroller for Dovi. The Special Tomato stroller outlived its usefulness - it's too bulky to transport and the five-point harness was too flimsy to keep Dovi safe. He would climb out in the blink of an eye and lead his caregivers on a wild goose chase to catch him. Then the hood broke; we had to dispose of the stroller.<br />
So far we are using an old donated Mclaren Techno, but at 47" and 52 pounds he does not really fit into it anymore. And sometimes he puts his feet down on the ground to stop his caregivr from pushing him...<br />
Even with his backpack harness I am sometimes scared to be on the street with him without additional restraint. When we wait for the bus in the morning he starts dragging me to the corner impatiently and I can barely get him to walk back to the front of our house. I'm always scared that he'll try to run onto the street. We really need a stroller.<br />
So last June I began the process of getting the Mclaren Major Elite stroller funded through Medicaid (it costs over $500)... and thus began the next saga of Never A Dull Moment in our lives....<br />
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I called the same company who acquired the Pedicraft bed for me. Unfortunately, that sales rep no longer works there. I got a new rep, and he was very efficient and nice at first. Right before Dovi went to camp, someone came down to assess Dovi and discuss what we want and what would fit him best. We settld on the Mclaren Major Elite.<br />
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Dovi went to camp, and I had a baby, and we waited and waited. On August 9, a week before Dovi came home from camp I called to find out what was doing with the stroller? Oh, said the rep, we never got a Letter of Medical Necessity and it's holding up the whole thing.<br />
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I was shocked and upset - why had no one notified me for SEVEN WHOLE WEEKS? So at 2 weeks postpartum I was busy calling my doctor's office back and forth for two days to obtain the letter of medical necessity. It was faxed. They ddint receive it. I called back the next day. They didnt have the letter anymore. They printed it again. Faxed it to me. I faxed it to them. Still didn't get it. Finally, they got it.<br />
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And we sat back and waited.<br />
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One month. Two months. I kept calling the office only to be told. "We have to wait for a letter from Medicaid to let us know their decision." So I continue to wait, while Dovi kept growing, and his caregivers struggled to push the Maclaren Techno. Or opted to walk with him - he loves walking - but that means he literally drags his caregivers back home when he decides he doesn't want to go to the park.<br />
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On October 1 I decided I'd just about had it and i called the company again and spoke to the sales rep in charge of the whole thing. You won't believe his response:<br />
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<i>"We never got a letter of medical necessity from your doctor."</i><br />
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I wasn't sure if this was a nightmare or a hallucination!... I had been busy on August 9 and 10 over and over with this letter. And I had confirmation that they had received it! But we were back to Square One...<br />
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So there I went on October 1 begging my son's pediatrician to type the letter again (they no longer had it saved in the computer from August). I faxed it. They didnt get it. Faxed it again. Finally got it.<br />
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Now, a month later, the stroller request was denied by medicaid, for reasons I dont yet know.<br />
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The sales rep told me to call him on monday and he will explain, and I should try to make my case for medicaid.<br />
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But I can no longer wait. Dovi hsn't had a serviceable stroller since May, and I can't keep waiting and hoping and going through the wringer again.<br />
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So the Donate button is back out. It's not an outrageous amount that I need - we're not talking thousands of dollars here, but in the ballpark of $500 - and I hope that if everyone reading this will donate just $5 or so dollars, I can collect at least half or more of the amount I need and then just order such a stroller so that I can feel calmer and safer when transporting Dovi outdoors.<br />
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If you know of a place where I can get this stroller for cheaper, even secondhand, please do let me know.<br />
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Thank you readers! I hope to post some more interesting content in the future. Believe me, there is so much to say, so much to write. I'm grateful for everything I have, and I would love to share some of the incredible stories. The time will come...<br />
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DONATE! even if it's just $5! I will truly appreciate it, and so will Dovi!...<br />
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Dovi's Momhttp://www.blogger.com/profile/11832969333062206405noreply@blogger.com4