Summertime, and the Livin' Ain't Easy, Take 3

You may be wondering if I have a photographic memory, churning up these posts about past years and months down to the last detail. But in truth, I spend hours combing my Facebook archives for my old status updates in order to formulate the entries on this blog. Of course, I also remember these events in vivid detail, but I do need to reread my old posts to firm them up. Whenever I do this, I am stunned just at how much I managed to undertake, implement, execute, and survive. Where did I take strength to do all this? I marvel. I don't know. Seriously.

Reading just how much energy, effort, and sheer action I had to put in during the seven weeks we spent at "Kiamesha Hills" leaves me breathless and exhausted, and I'm sitting down while reading this. I honestly do not know how on earth I undertook such a daunting, strenuous, overwhelming task as this. And I am just as honestly admitting that I probably do not have what it takes to do it again. I'm afraid that by and large our 'country days' are probably over, unless Dovi ends up being able to go to summer camp, or staying with a respite family in the city for a couple of weeks. Doing what I did last summer - being there full time with Dovi without our usual roster of respite helpers - is not something I think I can do again.

It was that hard.

Hashem is Here, Hashem is there, HaShem is truly Everywhere

Continued from the previous entry:

The first phone call on that morning, a week after I had surrendered it all up to HaShem, was from Zehava. Back from Israel from her 2 week trip, she was fully on board to help me find therapists for Dovi for the summer. All was not yet lost. She would still speak to all the other branches of TABAC and try to figure something out for me. I breathed a bit easier. So all was not lost after all.

The second phone call was even more exciting. One of the phone calls I had gotten from my ad from the Hamodia had been an unremarkable, non descript, slightly nasal sounding  message with a local phone number. "My name is Rachel [garbled], I'm a SEIT, please call me at  _____." I returned her call and got an answering machine and promptely forgot about it, assuming it was someone who thought it was a city job. To my surprise, almost a week later, Rachel called me back. She lived in Israel and was planning to be in the Catskills in the summer. She had a bilingual masters degree and was employed with TABAC - she had worked in the main headquarters until she had moved to Israel. She had a lot of experience with low functioning, non verbal kids like Dovi. One of her older sisters also worked at the main headquarters and her other sister was almost getting her masters and would start working after the summer. Her younger sister did Res Hab and was available in the summer.

WHAT????

It sounded like a dream, too good to be true.

Summertime Livin' Take 3

I hope you're all having a wonderful Pesach.

Things worked out really nicely around here, Boruch HaShem. I had been extremely worried how I would manage to bring in Pesach, and how Dovi would behave during the seder. In the end, he wasnt feeling well for about a week, so he was well behaved enough for me to do all my Pesach prep and he slept through the sedarim. He's on the mend now, Boruch HaShem. I had a nervewracking few days when he was supposed to have been well already but was still very drowsy and sleeping for way too many hours. I finally figured out that the increase in his meds, which coincided with his week-long virus, was not good for him and with his doctor's instructions we scaled back until we will see him again after Yom Tov. Today we went to a farm where Dovi delighted in touching the sheep - and then tried to climb into the pen! We had to strap him back into the stroller, real quick....

Before I continue on to the next topic, which is another incredible Divine Providence story, I'd to close out the Home Health Aide series. The third aide sent by the agency, Leticia, turned out to be a good fit. She is extremely devoted to Dovi, who loves her back. Unfortunately, she doesn't really like doing housework, so we did lose our 'clean house' that we were used to during Danuta's time. She is also late a lot, and spends a lot of time on her Iphone. But on the plus side, she does a great job feeding Dovi and giving him baths and getting him into pajamas. While we sometimes have minor issues or arguments, we get along pretty well and she is really not a bother; our family can go about our business while she's here, and she doesn't ask for anything. It's great to have someone in the house during busy times like Yom Tov when there is no school. One of the best things that came out of Leticia's presence is that Chaim learned a perfect English around her. All in all, she's a lifesaver; we feel her absence keenly on Sundays (she only works Monday to Friday) and on the few legal holidays that she actually takes off, like Thanksgiving and Xmas. I am grateful every day for the existence of homecare for children with disabilities and that it's relatively simple to set up. If anyone reading this lives in New York and has a child with a  disability and a pediatrician that will gladly work with you to request homecare, message me for the phone number of the agency we use.

Anyway, moving on....

Special Needs Children Affect The Entire Family

I've been a blogger since I remember. I started keeping a diary at age 12 and basically never stopped. I had to delete some of my blogs between 2000 and 2005 due to stalking and other issues, and sadly miss those entries. I also lost a typed diary from 1997 to 1999 due to a floppy disk malfunction. other than that, my life is pretty much documented on livejournal and facebook. Sometimes, my candor has led me into trouble; other times, I got tremendous resources, support, and responses to my questions and issues. But the biggest value of blogging for me has been looking back at the archives. I am constantly rendered speechless by how difficult my life was. I am constantly grateful for the good in my life, for the help and respite resources in place to lift the burden somewhat - but of course, getting all these resources in place took a lot of research, hard work and takes constant maintenance.

In any event, looking back at winter of 2011/2012, things continued spiral downward. As the school year progressed, I found myself being squeezed and crushed beyond capacity, with the demands of the different therapists, combined with Dovi's relentless stimming, hyperactivity, escapes from his bed, and pressure from Chaim and my husband as the family struggled to cope with their lives revolving around Dovi's needs, limitations, and destructiveness.

Wintertime and the Livin' Ain't Easy Either

Every year for the past few years since Dovi's diagnosis, when Succos ends and the long winter sets in, I started getting anxious. Anxious for the winter to pass with the minimum of drama and heartache. For some reason, the winter months are full of drama and stress. If I think about it, so are the summer months. And the spring months. And the fall months. Bottom line, life with Dovi is stressful. Life as a special needs parent is stressful. One's entire life revolves around that one child. Whether it's the schooling, the respite, the medical needs, or just getting through the day / evening / weekend with the special needs child, while not neglecting the rest of the family - and oneself - is a juggling act that puts Ringling Brothers to shame. But unfortunately, most of the balls do get dropped. And inevitably some of the crash. And break.

Boruch HaShem, at this point in time, my family gets so much help that there is almost no help left to even offer us. I will, over the next few posts, talk about all the different kinds of help we are getting which makes life with a hyperactive, destructive, (DELICIOUS) autistic child livable.

But at the point we're at in the story - early winter of 2011 - I had very little help. Yes, we had Res Hab and we were extremely grateful. But that was basically all we had. We were on our own for Shabbos - Dovi wasn't yet registered for the Weekend Respite program*. Nor did we yet have our Shabbos volunteers*. On Sunday, he didn't attend the Sunday Respite program* yet. In the evenings after the Res Hab dropped him off, I had no help* for the rest of the evening; it was my husband and my job to keep him and the house together. The hardest of all though was the lack of transportation to and from therapy*.

* These are all amazing programs we are fortunate to be recipients of, all of which I will talk about in upcoming posts.

A New Year, A New Reality

It's become a struggle for me to keep up this blog. Google Adsense disabling my account for reasons I don't fathom was a big blow. Granted, I only made $50 a month, but at least I was getting paid somewhat. Oh well. Maybe if I'll start writing again and re-generate interest in the blog, donations to the Dovi Educational Fund will pick up again. If only I can stop playing Coasterville for long enough! I hate being addicted. ADHD stinks!

So, back to our  narrative. Where were we? Oh yeah. September 2011. We came home from the country. And all hell broke loose.

The same story repeats itself, year after year. We arrive home at night, exhausted, nauseous, with tons of boxes. We prepare the kids' beds, eat supper my mother so sweetly provides, put the kids to bed, and halfheartedly take a stab at a few boxes. The next morning, the house is a mess; we can't find anything. Finally, Chaim is dressed and ready for cheder. I shlep to cheder with both boys to register Chaim for the remaining week(s) of the summer. Then I shlep back home with Dovi and try to unpack.

And of course, I can't, for Dovi is everywhere and into everything. I can't begin to make heads or tails of the overwhelming job of unpacking the boxes and putting everything back into their places when I also have to keep an eye on Dovi, keep him occupied, and keep him out of trouble - and from destroying the house. By the time night falls, I'm in tears.

What a difference a year makes

Summer has always been a "big time" for me. I was born in the summer. I got married in the summer. Both kids were born in the summer. Some summers were amazing, and some were downright terrible - like the summer I had my first miscarriage. Or the summer my doctor gave up on me. (Foolish doctor.) Or the summer I was expecting Chaim and having panic attacks all summer (I was convinced it was another miscarriage waiting to happen.) Summer of 2010 was an extremely difficult one, with Dovi's new diagnosis and all the therapists camping out at my bungalow. By extreme contrast, Summer of 2011 will forever remain imprinted in my memory as the summer the wheel began to turn back upward.

We came home from that weekend in the country all refreshed and ready to tackle a very busy, very exciting summer. First came Dovi's move to a full-time program. FINALLY!!!! After suffering and struggling and tearing my hair out and enduring the grueling year of home-based E.I., Dovi was FINALLY going into TABAC. Yay!!!!! All those sweet, sweet promises, all those dreams of him progressing in leaps and bounds, all those hours of *freedom* - it was finally here.

The ongoing saga of the basement, center, etc.

Truthfully, I'm really sad today. A good friend of mine, who I know since my A T.I.M.E. days in the early 2000s, passed away suddenly this morning. We are all in shock; no one saw this coming, she wasn't particularly sick (aside from several long-term issues) and she apparently didn't wake up. She leaves behind a beautiful, long-awaited daughter, a devoted husband and hundreds of shattered, shocked friends. May Hashem comfort her family.

***

Nevertheless I do want to pick up the narrative of the Dovi story, being that tomorrow he'll probably be home (Jan 1st) and I have an appointment on Wednesday and before you know it, this blog will start stagnating. All the sensory solutions posts interrupted the flow of the blog and I want pick up the thread of the story where I last left off.

In the most recent entry where I tell Dovi's story,  Ellen his SEIT was reporting that he was crying a lot and was unhappy. In addition, Ellen herself was out for a large chunk of the day, coming back at 3 pm to work with him, which is not his optimal time to perform.  She also was urging me to look into placing him into an ABA Center, which is a better setup than working alone in a basement. It was a very confusing month for me.

Once Ellen was finally done with her medical situation and was back to working normally with Dovi, he settled down a bit - but not all the way. A new problem cropped up.

Mrs. White, the wonderful neighbor who was so graciously letting us use her basement every day for the ABA sessions, was getting very annoyed by the arrangement - because Dovi was crying. A LOT. Ellen was starting to feel her resentment and was extremely uncomfortable continuing the sessions there. Bessie didn't feel it as much as Ellen, but Ellen was getting adamant about not continuing to work in the basement.

What on earth was I supposed to do???

Winter Doldrums

Some of you reading this blog are probably getting dizzy reading how insanely busy I am on a daily basis just with Dovi's needs. Life is always crazy around here. If it isn't one thing, it's another. But looking back on my old journal posts from 2 years ago I'm amazed at how I survived that first year after Dovi's diagnosis. Frankly, next year I'll probably shake my head and wonder how I survived this year. I guess Hashem gives you strength to survive whatever is happening at the moment; later on you feel weak-kneed and wonder just how you coped.

The winter of 2011 was chock full of ups and downs. It started with the infamous blizzard of 2010. New York was paralyzed for a good week. Like everyone else, I had my kids home all week. Unlike everyone else, having Dovi home for a week is a frightening prospect. I was lucky that kind, devoted Ellen actually came by TRAIN to work with Dovi, despite the blizzard. Her dedication to Dovi's cause was just unbelievable.

Ellen had one major downside, though - she was overly involved. I spoke to her three times a week, every time she had Dovi, so every time Dovi had a hard day, I ended up worried and anxious. When Dovi wasn't making progress, I was beside myself with grief. Ellen felt that she was working very much on her own; Naomi was out on maternity leave and she was working with absolutely no supervision. Unlike Bessie, who finally came back from her three-week honeymoon vacation, Ellen took her job very seriously. Bessie came twice a week for her two hours and left her work at work. Ellen lived and breathed Dovi and cared for him as much as I did. But unlike her, I had myriad other obligation and worries and I couldn't focus solely on the ABA portion of Dovi's multiply complicated schedule.

The saga continues (plus: Uncle Moishy on Amazon!)

Once Dovi began getting ABA at the basement, my life changed for the better. It was incredible. I couldn't believe that I actually had the mornings available to do stuff. Sure, there were some downsides too; suddenly I had to have Dovi dressed, ready, and out the door at 9:30 a.m., and I had to have breakfast, lunch and snacks all packed up too - but I was able to live. There was no more screaming in the house, no more scrambling to get the place spotless for 2 fastidiously tidy therapists.  Best of all, I was able to run errands, take naps, and do housework in the mornings.

And Dovi loved the new setup too. Ellen, the new therapist, was amazing. The combination of her enthusiasm and love, the large empty space, and the lack of hovering mother around meant that for the first time in months, he was finally making progress.

Life was easier, but it was still incredibly hectic. After picking up Dovi from ABA at 12;30, he still had Speech and Occupational Therapy in my house,and I was always rushing, rushing, rushing somewhere. But it was definitely better than the disaster home ABA had been.

Dovi loved going to the basement. He literally ran. I liked to sit and watch Ellen in action sometimes; it was amazing to see the progress. She zeroed in rather quickly on his sensory issues and other quirks. Before long she had taught him to walk independently to the little table, do his work,and she rewarded him with big hugs, social praise, and swinging him in the air, after which time he was allowed to go over to his play corner for a few minutes of free play. It was amazing.

An angel named Rose and a community of Kindness

The wait is finally over, dear readers, and it's time to tell the tale of an angel named Rose..

Let me introduce you to my saving angel, Rose. She is so quiet and invisible that I often forget about her and I only remember her existence when things get really bad and I urgently need an advocate between myself and TABAC (which bh has not been necessary since June.)

Rose is actually the daughter of my community's Rebbe.  She's two years my junior and I know her well from summer camp and community events. A dignified, brilliant mother of a large family (KE"H), she is the quiet force behind the scenes for hundreds of parents in the community who deal with children with mild and major special needs. She's the go-to person between the schools, the therapy centers and the parents. Often a mother feels so overwhelmed and confused when first discovering that her child needs therapy intervention and doesn't communicate effectively with the principal or the therapy center. That's when she steps in. She listens, empathizes, and comes up with solutions.

When Chaim's preschool teacher had first told me to seek therapy for him, I was taken aback. I called up the main school office and was directed to a person-in-charge, who helped me compose a letter to the Board of Ed requesting an evaluation - and then she told me to call Rose so we could determine together what was wrong with Chaim and what he might need.  At the time I was a little put off by her, because she hinted that Chaim might be on the spectrum due to some of the symptoms I was describing. But she directed me to the behavior specialist at TABAC, who came down - as a favor - to observe Chaim at school, who told me his issues were really not that bad - and then the specialist promptly suggested that Chaim come to the ABA center to get all his therapy back-to-back.

No thanks.

IN WHICH I DRAW OUT THE SUSPENSE EVEN FURTHER

Oy. I'm so tired. It's been a nutso week. I'll discuss the Ritalin later, or another time, but things were better today. But anyway, I left you hanging for so long about that life changing phone call by that mysterious Rose so I'll just pick up the thread of the narrative and write until my stamina peters out, which is how I've been operating until now.

But I have to backtrack and fill you in on a few little details prior to Rose's phone call.

So Dovi wasn't doing very well with the therapy, and neither was I. He had six different therapists: Hannah, Bessie, Debbie, Vivian, Malia, and Lynn. There was no communication between them, no one to coordinate what the goals were. (So much for Naomi making a condition for switching over to her agency for Service Coordination; Becca was doing a good job being my "social worker", but there was no coordinator for Dovi's actual goals.) Additionally, they all had different ideas and approaches and requests. Vivian wanted me to try to get a swing, Debbie asked if I could get a little table and chair so she culd work with him better, Malia wanted me to buy bubbles, I forget what Lynn wanted. They were also a little lost on how to work with Dovi since he wasn't responding much to the therapy. So I bought a cute little notebook, pasted a picture of Dovi on the cover and wrote "Dovi's Progress", and the therapists began communicating... sort of.

HOME-BASED ABA IS WORSE THAN CHINESE WATER TORTURE

We last left you off in the latest installment of our serial story (which should be aptly titled "Never A Dull Moment") with our arrival back home from what can be loosely termed "summer vacation", although it had been anything but. I immediately fell onto an endless treadmill of stuff. My husband's second-to-youngest sister was getting married a week later and I did not yet have a dress to wear for the occasion.

So off we the very next morning, boxes still unpacked, to register Chaim for day camp for the one remaining week of the summer (we had come home early due to the selfsame wedding) and then to the underthings store and to the fancy dress store. Thankfully I snagged a pretty black suit - that's what the ladies wear nowadays to weddings around here - and the boxes got unpacked,the house got cleaned up,and I braced myself for the crazy schedule to come.

It didn't happen all at once. Within the first week Dovi slowly started 'related services' in the form of two new speech therapists, Malia and Debbie (Vivian would be coming home from the Catskills a week later) and Lynn the occupational therapist. Dovi cried with all of them. Debbie was "ABA trained" and tried to implement ABA-style methods, which Dovi, of course, hated. Malia, a sweet, 'regular' speech therapist, was at a total loss on how to reach Dovi. Fortunately she had some exciting toys with her, such as the gears toy Vivian used, and Dovi cried the least when she came, viewing it as play time. Lynn immediately zeroed in on Dovi's varied sensory issues and we devised techniques together to get him calm and cooperative. We created a swing out of bedsheets and swung him vigorously together before every session. She initiated a "brushing" program to give him deep sensory input on his skin, and she often created a tent out of  bedsheets and dining room chairs, creating a quiet, soothing, enclosed environment for him to work in. The first month he cried straight through his sessions, but gradually he got used to her techniques and found them soothing and began cooperating with her.

SUMMERTIME, AND THE LIVIN' AIN'T EASY.... or: WHAT THEY DON'T TELL YOU ABOUT ABA THERAPY

Do you remember a time when your really, really wanted something really badly, pinning all your hopes and dreams on it, awaiting that incredible something with massive anticipation, and when you finally got it, it was a major disappointment? Or worse yet, it was horrible, awful, terrible, and you just wished you could give it back but couldn't?

That is exactly what happened when Dovi finally started therapy.

The first therapist to show up was a Speech Therapist, named Vivian. She was gentle and kind and loving, but Dovi just cried and cried throughout the sessions. He refused to sit in one spot and felt overwhelmed by the simplest task, the slightest touch. He did not know what the therapist wanted from him and did not respond to any of her commands. He cried and cried.

And so did I.

It's really difficult to listen to your child cry and be unable to -- or not permitted to -- intervene and make it all go away. My brain knew that this was for Dovi's good and the crying did not mean he was in distress. But my heart was aching and I couldn't take it.

EIOD. IFSP. EEC VS TABAC. PDD-NOS. ABA. CAN I HAVE ANOTHER HELPING OF ALPHABET SOUP PLEASE?

Enough with the philosophical musings. Time to pick up the thread of the narrative. I left you all hanging, waiting for the meeting with the E.I. Officer.

Once Naomi decided that Dovi was a good fit for the ABA program, the next question became: How soon would they be able to start, once I got my IFSP (individualized Family Service Plan). It turned out to be way more complicated than I had expected.

Because it was so late in the school year, Naomi was extremely occupied with end-of-the-year paperwork and meetings and setting up the kids for the summer. She didnt have any therapists available for me until the start of summer sessions, which was July 1st. When she heard we were going up to the Catskills for the summer, she was dismayed. We would be away from June 16 - August 15; summer sessions were from July 2 until August 10. This meant that Dovi would only begin his ABA program in mid-September. This was way too long to wait!

She couldn't understand why I was contemplating going away for the summer when so much time was at stake. But I had already given a deposit on our bungalow, and I wasn't going to turn everyone's lives upside down more than it already was. This wasn't fair to Chaim, to my husband, to myself, and even to Dovi. Every year I looked forward all year to spending the summer upstate, away from the hot, concrete city. The kids thrived in nature, played with sand, and spent time in the swimming pool. Staying in the city was too depressing to consider. But here I was being made to feel guilty by the very people who were supposed to help me!

BOOKS NOT TO READ ON AUTISM; (Alternate Title: IS ANYONE OUT THERE???)

There we go, with dual titles. I don't really like it. But this will be my very first post testing my Amazon Affiliate program, and hey, I do want someone googling "Books on autism" to maybe find me on page 20 of their search results. Ha.

So where were we? Oh yeah. After my initial interview with Naomi Whyne, I came home elated, excited, and raring to go. She had warned me that ABA was brutal at the beginning and there is a lot of crying and resistance from the child, but they have seen so many incredible success stories with children as locked-in-their-world as Dovi, and she felt he would do well in the program. All we had to do was wait for the meeting with Early Intervention.

Madame Service Coordinator, too, was impressed with what she had seen and thought it would be a good fit for Dovi. Before I made a decision, though, she had a book she wanted me to read. The title of the book was The Boy Who Loved Windows. Eager to get some clarity to shed light on what was happening to Dovi, I bought a copy on Amazon.

SO WHERE YOU WHEN YOU HEARD THE NEWS? ME, I WAS IN... SHOCK

Most - if not all - autism moms can pinpoint the exact moment they knew that life the way they knew it was essentially over. They can clearly remember where they were sitting, perhaps what they were wearing, and what the atmosphere was like in the room when they heard the news.  And they would do anything - ANYTHING - to freeze that moment, to grab it by the horns, pull out a magic Time Turner and turn back the time so that they never, ever, ever experience that moment again. That horrible freefall, that moment when the floor underneath them simply pulverized into nothingness and they found themselves falling, falling through the air into an endless chasm below, flailing and gasping and scrabbling in the emptiness, hoping to find something - anything - any remote sliver of hope to hold on to.

Unfortunately, that moment is immortalized forever in a report sitting neatly in a yellow folder in my dining room bureau drawer.