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Wednesday, January 23, 2013

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.

Hanna Andersson

The change to having the entire day to myself was absolutely mind-blowing. I could just not wrap my head around it. No more running, running, running to meet therapists, dragging up and down 3 flights of stairs. Those first two weeks until we moved to the new apartment my good friend Carrie came every morning at 9:15 to pick him up and take him to the ABA Center, and picked him up at 3:30. Twice a week Teri the amazing Res Hab girl picked him up from Carrie's at 4:15 and kept him til 5:30. The other two days, Carrie actually kept him til 6 pm, so that I could pack for the big move uninterrupted. I couldn't believe that I could actually leave the house whenever I wanted, take care of my errands, come back home, and eat an uninterrupted meal. It was heaven. All of the grueling, strenuous, wrenching work of the past year was over. Dovi was where he belonged. And I had my day - and my life -back.

Dovi took to the ABA Center like a fish to water. He loved it. The place was basically empty, as many children were away for the summer. He could roam the big hallways. He could spend a lot of time in the big, wonderful OT gym. Only the Director of Speech and Director of OT actually worked for the related services, so he got top-notch therapy. As for his ABA therapists, he had five new therapists... none of them being Bessie or Ellen. I wasn't sad about Bessie, but devastated about Ellen. I was so sure she would be around, be his lead therapist, and take the lion's share of his therapy sessions. She chose  that summer to work at the main Headquarters of TABAC as it was closer to her home. I tried to reach her all summer to no avail; at the end of the summer I discovered that she hadn't worked at all in the summer. Apparently her health issues had flared up again and she had taken the summer off to address them. Dovi would have probably made more progress under Ellen's tutelage, but he did pretty well even with his new therapists, whom I'll call Alice, Beth, Gail, Dina and Pearl.

Dovi is understandably in love with the ABA Center's huge, amazing OT room / sensory gym. The ball pit remains his favorite. Unfortunately, every morning when I arrived to drop him off, he made a beeline for the ball pit. Wrestling him away from the OT room was almost impossible. The Director of Speech didn't have the energy for him.

Boy did he live it up in that ball pit.

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Dovi arrived home from 'school' every day very happy and very tired. He practically raced up the stairs to the house, thrilled to be home - instead of trying to escape the way he had during his year with E.I. Naomi Whyne was thrilled with Dovi's progress. They were loving working with him. Within three weeks, he mastered his first sign: "Give me". It was incredible - and hilariously cute. It was such a help! Instead of him whining and whining and rummaging through drawers and shelves while I tried helplessly to guess what he was after, he would take me by the hand, thump his chest twice, and I knew that he wanted something - whether it was food, or drink, etc. If he encountered a child in the park, he didnt grab his drink or ice pop away like he did in the past; he stood there politely thumping his chest, expecting the child to give away his drink/ices. It was pretty funny. And exciting.

The therapists' notes in the communication book were way more heartening than the dismal ones the E.I. therapists had written about a year earlier.

What upset me greatly though was Naomi's continued refusal to take Dovi to the park. He needed to get out daily for fresh air, and he needed to run in the sprinkler and on the playground equipment! She still didn't "want to take the risk" - she was so liability conscious. That was a huge disappointment. Also, Pearl was about nine months pregnant and took off on Fridays here and there, plus it was really hard for her to diaper Dovi and sometimes asked me to do it when I picked him up. Oh well. The hardest part - which is still really difficult for me - is sending along lunches, drinks, snacks etc every day. It's not something that's routinely done in my neighborhood - the schools provide hot lunches and even breakfast - so coming up with ideas of things that Dovi liked was challenging. I often send five things and he would want none of them. So much food goes to waste. It's part of the package, I guess... Additionally, pick up and drop off twice a day became very tedious. The first two weeks my friend Carrie took care of that, but just about when the big move happened, she went away to the country for the next four weeks and the responsibility was mine. In the morning I was always so rushed; Chaim's bus came at 8:50, and after that I would come back upstairs, get Dovi's food together, dress him, and then put on my own wig and shoes and make sure my outfit was presentable and then rush off with him to school. Fortunately, our new apartment is two blocks away from the ABA Center, which makes it all much, much easier. Afternoon pickup was even harder; I had to drop whatever I was doing, get all dressed up again, and run to pick him up on time. I know that those of you who do carpool on a regular basis probably think I'm crazy; but remember, I did this on foot, not in a car, and twice a day every day - and it's something no one else in my neighborhood has to do, as everyone goes on school buses. So it made me feel different and stand out among the other mothers on the block.

The second life-changing event that happened that summer was the BIG MOVE.  The preparations were exhausting and seemed endless; interviewing painters, floor guys, movers, hiring them all, and the huuuuuge undertaking of packing. I couldn't believe I could actually pull it off. But we did; on a bright Monday morning we left our old, dilapidated, outlived hovel and moved into the spacious, airy, new place.

And our lives changed forever.

Dovi loved it. He ran up and down the big, wide, long hallway. The kids actually slept through the night - and so did we. They didn't wake each other up, and they didn't wake us up. We were able to bathe them both at the same time in their separate baths. My days of shlepping Dovi up and down numerous flights of stairs was over; we had an elevator now, and just one flight of stairs for Shabbos. And best of all - I had NEIGHBORS! My next door neighbor is just a year older than me and a wonderful person. Downstairs on the first floor live 2 old friends , a couple of years older than me, that I get along with wonderfully and spend a lot of time with. Chaim had an entire backyard full of children to play with after cheder. Dovi, too, loved running around in the big courtyard; we no longer had to shlep to the park every day, especially on Shabbos mornings. I now had a big beautiful kitchen to enjoy cooking in ,plenty of closets to store our stuff, and I was only two blocks away from the ABA center.

Life was incredible.

I didn't have Internet access the first three weeks - only on my cell phone - thus I was able to really dedicate my full attention to unpacking and setting up the new place. Through a stroke of Divine Providence I found a temporary res hab girl for those 3 weeks - who turned out to my the daughter of my 7th grade teacher! - an incredible girl who worked at EEC and really knew how to manage Dovi. I was amazed at how different and wonderful this summer was compared to the previous summer.

I was also blown away by the fact that just one month earlier I was so worried about spending the whole summer confined to my horrible walkup railroad apartment. Salvation from Heaven had come in the blink of an eye.

All too quickly the summer passed, and TABAC was closed for four whole weeks, as most summer schools are... We did some research for a bungalow in the Catskills to go to for two or three weeks. We found something in Ellenville that was reasonably priced, with food served on premises. (I wouldn't have time to prepare meals if I was solely in charge of Dovi.) I was worried about how 'cut off' it was from the center of the Catskills, and I knew I was going to be working very hard, but I resolved to spend those three weeks rekindling my relationship with Dovi and focusing on him and Chaim all the way. Then I found out something startling: The family who had the bungalow for the first half of the summer had a special needs child as well, and she had a girl come from a bungalow colony down the road every day for a few hours to take her child out. She gave me her name and phone number and I decided to call her once we got there; it would be a huge help.

On a super rainy Sunday we headed out for Ellenville. I had no idea just how incredibly draining the next three weeks would be, and how much Dovi would change. More to come.

Forgive me for doing this, but from this point on, I will be posting the Donate button in every post. Please, if you can, make a small donation to Dovi's Educational Fund. At this point we are barely at the quarter mark for his lawyer's retainer - nevermind the actual costs of his tuition. We need tens of thousands of dollars!!!

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