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Saturday, February 2, 2013

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.

In 2011, we had stayed until the very end of the country season, so Chaim was actually able to resume his fall cheder session and go by bus, thus sparing me the job of registering and transporting him myself. But I simply couldn't get my act together. Dovi was chafing at being locked into the house; all he wanted to do was run, run, run. He stood by the door, bleating and panting. He tried to get out the back door to the backyard. He just couldn't get used to being indoors. Like any toddler, after coming home from summer vacation.

I simply couldn't unpack.

To complicate matters even more, due to an unfortunate snafu, we arrived home to find our gas turned off. The tenant who had lived in our apartment until June had kept her name on the utilities for an extra months until she was officially registered at her new residence. During our three-week stint in the country, she had done the legwork to remove her name from the utilities while I made the phone calls to the gas and electric companies to change it over to my name. For some reason, the gas company had come to shut off the gas supply and had not turned it back on after my phone call. The earliest they could come was four days later. So we had no hot water, no ability to cook, and no ability to wash and dry laundry!!!

It was a nightmare.

After a few hours of trying to unpack and losing my mind in frustration I finally admitted defeat. It was time to call in some help. Having spent three whole weeks being Dovi's sole caretaker most of the time, I just couldn't do it anymore.

I picked up the phone and called the always-helpful, faithful sweetheart Rebecca, the niece of my best friend Esther, who had so wonderfully volunteered all of the year before. I had made up with her mother that her older sister Judy would be Dovi's res hab counselor after she came home from camp. But they weren't quite ready for full-fledged work yet. Rebecca kindly took out Dovi to the park for about two hours and I crammed as much unpacking as I could in those two hours.

That night I got another fateful phone call. This time it was my former classmate Elaine. My good friend Carrie, who had taken Dovi a lot the year before, was close friends with Elaine. Elaine and I had gotten married a week apart. She had six children. We weren't particularly close; I hadn't talked to her in years. Carrie explained to me that Elaine was a one-woman chesed operation; she visited patients in the hospital, transported kids to therapy, cooked food for the sick - you name it. She had not been aware of my situation, and when Carrie had made her aware, Elaine was absolutely horrified. She immediately sprang into action. She called up every single one of my former classmates, trying to find those who had smaller families or teenagers who could help out. Before long, she had assembled a rotation of volunteer families who would take Dovi off my hands the next few days, until TABAC would resume sessions on the following Monday.

It was a relief, but also very humiliating. I had all but shunned my former classmates during my long battle with infertility. I hadn't repaired my relationships with most of them; and now they were going to be helping me out. But I had no choice.

For the next few days, about six different families took turns watching Dovi. They kept calling me telling me how adorable and fun he was and how much he was enjoying them. I crammed in all the unpacking, reorganizing, and cleanup that I could. I had to start thinking of preparations for the High Holidays coming up; cooking, baking, clothes shopping. I also had a ton of paperwork to take care of and needed peace and quiet to fill it all out and drop it off in the mailbox.

I also had to tackle the daunting task of finding a new roster of Res Hab counselors for Dovi. Judy would take him every Tuesday and Thursday and every second Sunday. Now I had to find a second girl to take him every Monday, Wednesday, and every other Sunday. Enter Marilynn my Res Hab Coordinator; she floated a name to me, and I talked to the new candidate. She sounded okay, but she had two major disadvantages; she lived plum on the opposite side of town, and on Sundays she was only available after 4;30. Since Dovi had no respite program to go to on Sundays, I really needed him out during the day. But I had no choice, so I agreed to interview her. She didn't really "click" with Dovi.  It didn't seem to me like a good fit. She herself admitted it a little later; the job was way too hard for her. but she had a friend who was interested, and that friend would call me.

Before her friend woudl call me, Marilynn paired me up with a different girl, Heidi. Heidi was a 12th grader and had done res hab before. She did click with Dovi and gladly agreed to do the other 2 1/2 days a week. She did a wonderful job; she was punctual, Dovi liked her, but she was a little off-putting. She didn't talk much to me; she woudl drop off Dovi, tell me he behaved very well, and run off. I enjoy talking to my res hab girls and didn't like that she ran off like that. On the first day she started, the other girl's friend called me. She was incredible. She listened to Dovi's entire history, and sounded genuinely interested in the whole thing. It was a missed opportunity; I told the new girl, Nina, that I would keep her in mind in case Heidi didn't work out or I needed an additional girl.

Little did I know just how Nina and her family would impact my life. It's an incredible tale to tell. Next time.

When we had moved into the new apartment in July, the majority of the families in the complex were away for the summer. Dovi loved the backyard and the few kids who stayed home. Now when we were home from the country, an entire new reality awaited me. Chaim basically lived in the backyard from 4 pm onward; he and his cronies always forgot to close the porch door as well as the safety gate leading downstairs to the courtyard. I found myself looking for Dovi all the time, and finding him, of course in the back yard.

I had not had a chance to introduce myself to many of the families in the complex, which consists of six buildings housing fourteen families each, and share one big backyard. Many of them were not even aware that I had moved in and were pleasantly shocked. They did not know about Dovi's autism, and neither did their children. And kids can be mean. They didn't know what autism was. All they knew was that there was a meshugenneh little boy running a helter skelter on their turf; a boy whose yarmulke kept falling off and who was not responding to their overtures and scolding.

For some reason, I kind of expected the kids to instinctively understand that Dovi was different and he had to be treated nicely. How naiive of me. I hadn't been around the rough-and-tumble life of the typical adolescent boy in decades and forgot just how brash they are. So after two days of getting yelled at - the boys would actually climb the stairs to my second floor apartment and scream through the back door that my child was running amok downstairs, and I even heard them saying, "She's not a normal mother! She's letting her kid run around in a pamper and undershirt!" I finally took matters into my own hands. I went down the stairs and approached the kids and nicely explained to them that Dovi had special needs; he didn't understand anything and could not speak, and he needed to be treated nicely. "Maybe if you will talk to him nicely, he will learn some new words. Instead of yelling at him and scaring him, how bout befriending him?"

It was a brilliant move. Within a day, the backyard bullies were transformed into his protectors. They followed Dovi around en masse, both fascinated by this interesting, different creatures, and proud of their responsibility. The kids took turns watching him, informing me of his every move and wheeling him around in a toy wagon. Dovi was a little bewildered by all the attention, and since he doesn't like children to begin with, he shied away from them. But I had a new gang of helpers; between 4 and 6 pm, when the Res Hab girls weren't working yet, a bunch of different girls and boys fought over the privilege of watching Dovi. The fact that I have a DVD player with Uncle Moishy DVDs is also a big draw...

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So Dovi's Res Hab girls were settled. Rosh Hashana menu all written up. The house was basically back to normal. Now it was time to tackle Dovi's return to TABAC.

I had heard rumors all summer that Naomi Whyne was leaving our local branch of TABAC to take over the other, new branch, where Dovi had almost transferred to the previous winter. But I had no idea who would take over her job. Finally, the name of the new director reached my ears. And I nearly fainted. The new director, Zehava, is my first cousin by marriage. She's about seven years younger than me. She's brilliant, dedicated, wonderful - everything you want in a director. The only problem? She and I had a major falling out six years before and we had not spoken to each other since.

And now, she was going to be the director of Dovi's education. I felt like someone had slapped me across my face. It was so humiliating. I was going to come into her turf, tail between my legs, with a disabled child, and throwing myself under her rules. She was going to sit on her high-and-mighty throne and laugh her head off at my misfortune. It was almost like a comeuppance to her. I couldn't believe it.

As it turns out, I couldn't have been more wrong. All it took was one phone call to clear the air. Zehava held no ill will towards me for our big fight; she barely remembered that we had once had one. She told me how shocked she was when she learned of Dovi's identity during the summer when she was training. Dovi Blogowitz (name changed of course) is very much a family name, and her antenna had perked up right away. She was quite devastated for me. There was no arrogance, no schadenfreude involved at all. She was completely and professionally committed to her job.

Zehava replacing Naomi was the best thing that could have happened to me. I suddenly had an open ear. I had someone to talk to. Unlike the previous year, when I gnashed my teeth in frustration at the inability to reach Naomi and talk to her and get to understandings, Zehava was all ears, almost always available, and full of compassion. TABAC has thrived under her dedication. The parents get along amazingly with her, and she has wonderful ideas and innovations that Naomi didn't have the time to implement in her limited weekly hours at TABAC.

Zehava is not the actual educational director; she is more of the administrative director. The educational aspects are managed by Sarah, who was one of the therapists at TABAC but also had a managerial role even as a therapist. She is absolutely amazing. Brilliant, compassionate, and cutting edge, Dovi and the rest of the TABAC clientele have made tremendous strides under her tutelage.

Ellen was back - YAY!!! and would take the lion's share of Dovi's hours. She was back to being his lead therapist, and had him every day from 12-3 p.m. Dovi had many, many other therapists; I don't even remember their names right now, because they kept changing for the first few months until his schedule was tweaked.

Dovi's beginning of the 2011-2012 school year was an absolute disaster. With all the schoolkids back from their summer breaks, the place was full to capacity. The sensory gym was off limits aside from his scheduled OT sessions. He felt claustrophobic in his little room. He cried and cried almost the entire day and refused to do any work. With the new management struggling to get the school year off the ground and running, the wasn't much time to address Dovi's specific needs and figure out why he was so unhappy and fix it. Ellen was frustrated at how much of her hard work was lost with Dovi having had different therapists in the summer. She had to rebuild his programs from scratch and re-teach a lot of skills that Dovi had already mastered the year before but lost over the summer. With Dovi crying and carrying on and trying to bolt from the room all the time, it was almost Mission Impossible.

The first few weeks of the school year were spent mostly calming Dovi down, and teaching him how to walk in the hallways without bolting and taking off for the sensory gym all the time. They also - MERCIFULLY - took him to the park every day, sometimes twice a day, just to release him from the imprisonment of his windowless room.

We were facing a tough, upward battle. Dovi was 3 years and 2 months old, but for all intents and purposes, he was still very much a 2 year old. A tough, headstrong, hyperactive, stubborn 2 year old.

The battle was so daunting, it's a good thing I was too busy to sit and ruminate just how tough it would still get.

To be continued...

Please donate to Dovi's fund... I haven't even reached the halfway mark for the legal fees, nevermind the tuition. Thanks so much...

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