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.
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.
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 this 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...
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.
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.
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.
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.
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."
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.
The end result of all that soul searching and turmoil and valiant effort at fighting my case was a very simple set of statements:
Caring for Dovi was hard. 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 at all until Dovi was six. He was not going anywhere at age five. Not that anyone would take him that young -- and I was certainly not going to send him to Higashi of Boston, regardless of what Ted's parents had done. End of.
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.
June 13, 2013 was not completely 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 Pedicraft bed and how to get it. 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. How on earth had I never heard of this program????
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.
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!
A big unanswered question that remained with me until the day Dovi left home, was: How did my Medicaid Services Coordinator not know about this option? 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.
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.
I was ecstatic that there was actually some hope for Sundays!
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.
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.
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.
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 fan club? 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. It was shocking, exhilarating, and filled me with hope.
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.
The photos they took at that wedding are the best shots I have of Dovi during all of 2013, literally.
This was only the beginning. Later that summer and early next fall, two different incredible 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.
But that will come later.
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 DO 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.
To be continued.
Beautiful! I hope you are doing well! I have aspergers myself, nice to meet you! I have facebook as well, take care!ReplyDelete