Thursday, February 14, 2013

And the Second Angel was Disguised As A Teenager

Continued from the previous post....

The second angel that breezed into my life is someone we're already acquainted with - Estelle, who had inquired about the first Res Hab position but ultimately couldn't take it. I didn't hear from her since then - until she suddenly called me six months later. She heard so much about Dovi and was dying to work with him. However, she worked all day -til 5:30 - and wished she could figure out how to make it work.

I was curious how she heard about Dovi recently. To my surprise, she told me she had heard regards from him through Heidi. The two of them worked on Sundays at the Sunday Respite Program, and Heidi had been raving how cute he was. Thus I reestablished communication with Estelle. She was amazing to talk to. We talked a lot about various therapies, coping with special needs kids, and more. Her family constantly hosted difficult autistic kids and she was very experienced. It was fascinating to talk to her.

At the first support group event, I discovered many resources I had not known about before. The other mothers there told me about the Respite House, run by one of the amazing special needs organizations, where kids can stay overnight and over the weekends. It didn't remotely occur to me to send Dovi there; he was, after all, just a baby. I filed the information in the back of my mind and I hoped I wouldn't need it. The other juicy tidbit I noshed was that there was also a Sunday Respite Program specifically for autistic kids. I had tried to get Dovi into the Clinic's Sunday Respite Program, but it only starts at age 5. The Autism Sunday Respite Program apparently starts at age 3. At the time I did not yet have Res Hab and was losing my mind trying to figure out what to do with Dovi on Sundays. So I called the main office of the agency running the Sunday Program.






 I was given the phone number of the director. I explained Dovi's situation and asked her to describe what they do at the program. They do arts and crafts, puppet shows, and go on trips. It didn't sound like the kind of thing Dovi would be able to participate in; he didn't have the attention span for any of that, and I was way too nervous to contemplate him going on day trips. I shelved the idea and put it in the back of my mind.

After the summer, before my darling friend Elaine started arranging for my classmates to take Dovi out on Sundays, I called up the Sunday Respite Program again. I was desperate. I felt at this point that Dovi could handle sitting in groups and playing. But the director was very noncommital. She would think about it. And she never got back to me.

After the stress of Columbus Day, Veterans Day and Thanksgiving, and with Xmas, New Years, MLK Day and Presidents Day looming ahead, my desperation mounted and I wanted to call the director again. Especially once I had spoken to Estelle again, who told me how amazing and fun the Sunday program was, I was determined to try again.

I called up the director again and made my plea. I was desperate. Dovi was autistic, and eligible for that program. Was there any way they would take him?

The director was reluctant. It was clear from my descriptions of Dovi that he was truly a one-on-one child and their ratio was 3:1. I told her that Heidi and Estelle were ready to take on Dovi. That got her listening. She told me that she would need my cooperation; if she felt Dovi needed to be medicated, I would need to do that. I wasn't happy to hear that, but I assured her I would work with her.

The next Sunday I brought Dovi over for a trial run. He met Estelle who was immediately smitted by him, as were the rest of the counselors. Dovi behaved quite nicely. There was a ball pit, a sandbox, and a computer room with Uncle Moishy DVDs. I left really hopeful; he made a great impression and I was sure he would be accepted. To my surprise, the director told me that after talking it over with her boss, they decided that he could only be accepted if he was on medication, since he was very active.

To this day my blood boils in anger at this. Seriously??? This was a program specifically geared for autistic children. Who was she to tell me to medicate my 3 and a half year old? And what did she think - that medication was miraculous and instantaneous? It meant finding a good doctor, trying one thing, failing, trying another thing - it didnt happen overnight. And I really needed the Sunday respite - immediately. I was heartbroken.

What eventually happened with the Sunday respite program? We'll talk about that later - but first, back to Estelle.

Estelle was also very upset at this turn of events, but she wouldn't let it faze her. She wanted to work with Dovi anyway. She took him on January 1st, as she was off from work, and she loved it. She told me that Dovi was not any worse behaved than some of the most difficult kids in the program, and she would put in a good word for me to the director to get her to accept him.

It was then that I found out that this program does not even run on legal holidays. There is an affiliate branch in another part of Brooklyn that runs respite programs on legal holidays, and sometimes the kids - whose counselors are working that day - go to the other branch. Estelle usually didn't. So aside from getting the benefit of the Sunday program, I would still be up a creek when it came to legal holidays. which reminds me that President's Day is on Monday and I can't imagine how I'll do anything for Purim or Pesach with Dovi home, although he's been much better behaved on the Risperdal, BH.

Estelle swooped into my life that day like an angel. She started taking Dovi every Shabbos afternoon for several hours. It's a lifesaver. Sandi started sending me her daughter as well, so before you knew it, I had help with Dovi on Friday night, Shabbos morning, and Shabbos afternoon. Shabbos became more manageable. Estelle would bring back Dovi after Shabbos was over, often bathed and pajama'ed. Her entire family has been a lifesaver to ours; they took him overnight when my sister got married (no, Ellen was not back yet....), when my husband's sister got married, and during Chaim's hospitalization they were my lifeline. They have taken Dovi during many emergencies, such as Hurricane Sandy when there was no school for a few days.

Unfortunately, most good things must eventually come to an end, and after a year of being accustomed  - and spoiled - to Estelle's family always being there for ours, it became too difficult for them. Estelle has gotten very busy and can't take Dovi for now. So it's been a scramble in the past two months to find a replacement - and there simply isn't anyone as amazing as her and her family! But that day a year ago when things were falling to pieces around here, she walked into my life like an angel. I am hoping that things will calm down a little she will resume taking him on Shabbos afternoons, especially when the weather gets better and the day gets longer.

People like Estelle and her family keep the world going round, and keep special needs families from falling apart. We need more people like that. And there are no words in the dictionary to thank them for their devoted kindness.

Next up: The Third Angel...

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