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Wednesday, December 12, 2012

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.

Sometime in the middle of January, Ellen began reporting that Dovi was extremely unhappy. He was crying a lot and we couldn't figure out why. I was helpless; I had no idea what sensory stuff was going through his mind, and obviously, he wasn't telling me. So every single day when Ellen dropped Dovi back off to me after his session, I would hear that he was unhappy and cried and was unhappy and cried. I was frustrated and wringing my hands and had no one to guide me what to do.

Then Ellen began hinting that perhaps I should look into one of the preschools that specializes in autism for Dovi. I was completely taken aback. First of all, I was still completely convinced that Dovi would be mainstreamed by the time he was 3 and a half or so. Secondly, weren't we all struggling and plodding along with the ridiculousness of home ABA with the goal of placing Dovi in the ABA center by April, or July the latest? Why was Ellen messing with my head?

Ellen explained to me that she had two concerns. For one, Dovi was doing terribly with the home-based program, he really, really needed an ABA center, promto. She didn't think he would last too much longer just in the basement. She was extremely frustrated working as a lone individual with little oversight or supervision. Knowing Dovi, and knowing how amazing TABAC was, she was desperate for him to join a real center. Also, she worried that when he turned five we would stay stuck without a really good school for him to attend; he had a better chance of having an appropriate placement if we started him in an autism-geared school at age 3.

I felt sick to my stomach. No way was I ready to sit and contemplate Dovi's long term future. I couldn't think past age 5; I couldn't envision Dovi still being so impaired that he couldn't attend a more mainstream educational setting in Pre 1-A. Ellen's suggestion, while it made logical sense, just didn't sit right with me.

When Ellen saw my terrible distress, she backed down a bit and asked me to at least speak to the school she had in mind so that I had an application filled out years ahead of time so Dovi wouldn't be stuck without a school when he turned five. I obliged her and filled out an application for the 2013 school year.

Can you believe how time flies??? This was 2 years ago. I couldn't have imagined time flitting by so quickly to find myself now, in late 2012, indeed busy applying Dovi to schools for 2013. In the end, despite having an application handed in to that school, I have not followed up with them and am instead pursuing a different school, a school which I had not heard about 2 years ago.

But boy was that a jolting wake up call. Ellen was skeptical and quiet at my dreams of having Dovi mainstreamed. She knew, just by seeing with how much difficulty Dovi made the slightest progress, that it's just a pipe dream....

Ironically, School A does not work on mainstreaming at all, but School B, the one we're working with, has it as a big priority....

Things started getting even dicier with Ellen as the winter progressed. She had some sort of mysterious health issue which was sending her on a four-week medical hiatus. She ditched all of her cases at the actual ABA Center, but she made a special effort to accomodate Dovi. After an entire grueling day of medical treatment for whatever she was going through, she came to the basement at 3 pm to work with Dovi. But the setup was disastrous; it meant that twice a week Dovi was home in the morning instead of having his usual therapy schedule and that I didn't have my mornings for my errands and housework - and after 3 pm, he really wasn't interested in working with Ellen. There was a lot of crying and tantrumming and they hardly got any work done. It was extremely nervewracking for me as well. The entire winter was one long chain of unpredictability. First, Bessie was out because of her hurt back. Then, Hannah left and Ellen replaced her. Then Bessie got married and was out for three weeks, then Ellen was out for four weeks. When Ellen finally came back, Bessie took a month-long vacation to Israel with her husband. In short, i barely ever had a full week of predictable scheduling and was always on the phone rearranging my schedule and figuring out the next day. Dovi did not like all this upheaval; autistic children thrive on routine and predictability and all this upheaval was not working to his advantage. Admittedly, we hardly made any progress that first year. At most, the ABA helped arrest the autism in its tracks so he didn't regress further. But the craziness of his scheduling exacted a huge toll on me, my family, and my ability to cope.

Things weren't entirely terrible that first winter. There were some nice moments too. I finally set up a rotation of volunteers to take Dovi to the E.E.C. therapy gym on Tuesdays so that I had one day a week to stay home and accomplish stuff like organizing closets and making arrangements and just relaxing and being human. There is an amazing organization in my neighborhood that sets up things like that, and I took advantage of it, which helped me tremendously. Then, I took Dovi to an Ear Nose & Throat specialist with my piles of failed hearing tests to discuss what to do about our inability to really test Dovi's hearing and discuss whether an ABR test was really necessary. The ENT looked at the test results and finally confirmed once and for all that he can hear. Closed Subject. Whew. That was a relief.

Also, I took Dovi to see the pediatrician for some ailment or another that winter. During the long wait to see the doctor he was climbing the walls, taking food away from other kids, spilling water, running in and out of rooms, entering and exiting the elevator, taking phones off the hook.... in other words, being Dovi. The pediatrician, who hadn't seen him in a year - I usually saw one of his partners - asked me quizzically what had happened to him - he had never seen him being this rambunctious. I blurted out that Dovi is autistic, don't you know? The pediatrician was shocked beyond words. His eyes filled with tears. Knowing what I had suffered to bring this child and his older brother into the world, he could not believe that I was going through yet another major life challenge. I felt a little bad for causing him such pain; but it turned out to be a blessing, because the doctor has been so cooperative and helpful since that day in procuring and signing the many letters I keep needing for different agencies and things.

Also, that winter I went to see a woman in my community who is trained in Dr. Stanley Greenspan's Floor Time. She was going to teach it to me and show me how it's done with Dovi. It turned out to be the best thing for us, as I was finally convinced that this would never work for Dovi, nor was it possible for me to sit and interact with Dovi for so many hours a day. It's not the panacea it's made out to be, and it finally reinforced the reality that ABA is the one and only thing that would really work to penetrate Dovi's stubbornness and self-directedness so he could actually learn some skills. Floor Time is a great way for caregivers to interact with an autistic child, as is Son-Rise, but as an overall modality to teach them skills, I cannot see it working.

The most incredible event of that winter, however, is the upcoming post I will write about dealing with Stage 2 of mourning: Grief. I had a groundbreaking moment in the midst of all the grief which finally opened my thick armor a crack and started my road to healing. I cannot wait to write that post, Im Yirtzeh HaShem.

To be continued...

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