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Saturday, February 9, 2013

Autism and Ipads, Assistive Technology, Augmentative Communication, and all that jazz

Just recently I wrote a post about the silliest impulse purchase in recent history. You'd think I'd learned my lesson - but no.  A scant two months later I was once again filled with excitement over the next major breakthrough that would surely turn Dovi's life around.

Shortly after the late Steve Jobs passed away, I was flooded with emails and PMs telling me that I just had to watch this clip. I watched... and bawled. I cried til my head hurt. For I saw Dovi in every one of those 7 and 10 year olds. The tantrums, the inability to express themselves, the frustration... My heart broke. Even my husband, who is not touched by these things, was clearing his throat as he watched behind me. To this day I can't watch this clip without crying intensely. It's 13 minutes long. I'll be surprised if you won't find yourself crying at some point.

Friday, February 8, 2013

Wintertime and the Livin' Ain't Easy Either

Every year for the past few years since Dovi's diagnosis, when Succos ends and the long winter sets in, I started getting anxious. Anxious for the winter to pass with the minimum of drama and heartache. For some reason, the winter months are full of drama and stress. If I think about it, so are the summer months. And the spring months. And the fall months. Bottom line, life with Dovi is stressful. Life as a special needs parent is stressful. One's entire life revolves around that one child. Whether it's the schooling, the respite, the medical needs, or just getting through the day / evening / weekend with the special needs child, while not neglecting the rest of the family - and oneself - is a juggling act that puts Ringling Brothers to shame. But unfortunately, most of the balls do get dropped. And inevitably some of the crash. And break.

Boruch HaShem, at this point in time, my family gets so much help that there is almost no help left to even offer us. I will, over the next few posts, talk about all the different kinds of help we are getting which makes life with a hyperactive, destructive, (DELICIOUS) autistic child livable.

But at the point we're at in the story - early winter of 2011 - I had very little help. Yes, we had Res Hab and we were extremely grateful. But that was basically all we had. We were on our own for Shabbos - Dovi wasn't yet registered for the Weekend Respite program*. Nor did we yet have our Shabbos volunteers*. On Sunday, he didn't attend the Sunday Respite program* yet. In the evenings after the Res Hab dropped him off, I had no help* for the rest of the evening; it was my husband and my job to keep him and the house together. The hardest of all though was the lack of transportation to and from therapy*.

* These are all amazing programs we are fortunate to be recipients of, all of which I will talk about in upcoming posts.

Wednesday, February 6, 2013

Time to beg for donations again

We had a conference tonight about kids 'aging out' of the system this year and about the process of applying for new schools or requesting pendency.

Frankly, every time the subject comes up, my stomach starts turning. Although we have a great school to look forward to next year, I can't even begin to think how we'll pay  the nearly six-figure tuition. Plus the attorney's fees.

I don't know what I've let myself into. Seriously. But when I look at the other schools out there, my heart starts breaking at the thought of the last 3 years of bitter hard work going down the drain. Of all the kids in my support group, the ones that went to the free schools made absolutely no progress. THe kids who went to the private schools are the only ones that are making any sort of progress. Dovi really, really deserves a chance. He has so much potential. He is such a cutie pie. He is finally starting to match pictures, really respond to commands, and interact with people. He has so much to learn, so much potential. I can't let it all get lost because I can't manage to fund his education. So far, I've managed to raise... well, about a thousand dollars. Which I appreciate tremendously. But it's like a microscopic drop in the ocean.  I really hoped the blog would help me raise money, but it's not, especially since Google Adsense disabled my account. I'm not earning anything from Amazon nor all the other affiliates because they arent making any sales from the blog. I'll still keep writing, because there is so much tale to tell, but I really need your help to make it worth my while....

If you haven't yet donated to the fund, and you have the means to - even if it's five dollars, please, please do. Dovi will thank you. And so will I. As a bonus, I send a five minute video clip I compiled of Dovi to all donors, so you can see whose life you will be affecting with your kindness.

Thank you so much.

Tuesday, February 5, 2013

Divine Providence Chronicles, Chapter 2: The Res Hab Counselor from Heaven (literally)

Pop the popcorn, my friends, for it's time for another astonishing story. Believe me, I've been savoring this one for a while. We're back to one of my simultaneously favorite and least favorite topics: RES HAB.

As I wrote in a recent post, we went through a Res Hab overhaul after we came back from the country. We had settled for Heidi and Judy. But things fell apart really quickly. Judy, who had started 12th grade, became head of student G.O. at her school and apologetically informed me that she could no longer be Dovi's Res Hab. I panicked, but her sister Rebecca eagerly filled her shoes. Great.

Heidi, who as I wrote was a little aloof but a good match for Dovi, decided after 2 weeks of working with him that she wanted to give it up. I was shocked but not suprised. Her reasoning, apparently, was that she wanted to work with a child who was more responsive, that she could actually make a difference. Shrug... She was good, but we would survive without her. The only question was - who would replace her?

Enter Nina, the girl who had called two weeks before. She was delighted to do it. She came to meet Dovi the first time and it was an absolute instant click. On her very first day she seemed to instinctively know what he wanted, was communicating with his signs - she was absolutely in love with him.

Monday, February 4, 2013

Ignore your teeth, they'll go away

Here's another confession. I have terrible teeth. Terrible. It wasn't like that until about 8 years ago. I would visit the dentist about once a year for a cleaning and few fillings and that was it. Until one fine day when a deep cavity turned out to need a root canal. I hadn't seen a dentist in 3 years because I didn't have dental coverage. By the time I finally had dental coverage and saw a dentist to address said root canal, I needed no less than six root canals. Fortunately, three of those could be saved, and I ended up with "only" three root canals and four fillings. Those three root canals + the posts and crowns + the other four fillings ended up being a months-long affair; I was at the dentist once a week for five or six months, finishing the very last crown mere weeks before Chaim was born.

Then, things were kind of quiet on the dental front until right before Dovi was born, when I had a toothache and discovered several more cavities. Since Dovi was born, I've been living at the dentist off-and-on, especially in the past two years. At this point, I have many broken teeth, several more crowns, and I'm still waiting on coverage for a root canal on another tooth. Tooth #28 to be exact.

Sunday, February 3, 2013

Jump, Jump, Jump Real High, Jump Real High Together

I am going to 'fess up now and admit to a deep weakness that I have. I'm very impulsive. I also have little self control and a constant need for instant gratification. That's ADHD for you. It translates into every are of my life, and it also greatly affects how I deal with Dovi. On one hand, I'm driven and ambitious and constantly researching, networking, burning the wires finding out about new advances, resources, innovations, products, and such. The downside, though, is that when I find out that Dovi likes something, I immediately try to figure out how to get one for home use. Most of the time, these gizmos and gadget end up being dust collectors and money not well spent. Sometimes, I do hit the jackpot and our lives change drastically for the better - such as with the harness, or the bed tent, for example. One major instance of a road paved with good intentions but an ultimate waste of time and money was the Trampoline Craze.

As I mentioned, Dovi simply couldn't get enough of the trampoline in the bungalow colony. He was on it day and night. His social horizons expanded as well; he began to mimic what the other children were doing. It also taught him how to jump up with both feet. When we came home from the country and his vestibular needs could no longer be met with the wide open spaces, I began considering getting a trampoline for the house.

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