Evaluations, evaluations

Guess what, Akiva is retarded. Perhaps this sounds a bit baldfaced but we've had to go through a couple of evaluations with him since we arrived. The first one was for Bituach L'eumi - Nat'l Soc'l Security programs. The good news is that he received the full 100% disabled designation. This means he receives a monthly stipend from the gov't. Sort of like the program that he was enrolled in back in the US - Medicaid Waiver. We always say that Akiva knows what to ace and what not to ace. Actually, that eval was a simple one. We didn't know that in advance of course, and came armed with bro-in-law, Michael, whom we felt would be the right advocate. He's nice, he's smart, he used to work in the spec'l needs world (you may not have known that) and he speaks Hebrew. Unfortunately, he shlepped for nothing as they wouldn't let him into the room. So, while he cooled his heels outside, ready to jump in and help us, we managed the exam nicely with the lovely doctor who asked different questions and asked Akiva various things. Akiva had one nice moment where he got up and washed his hands with soap - all by himself. We were pleased. Interestingly enough, as a person with Down Syndrome, he gets 50% automatically, unless he proves to need more.

Eval #2 was for Social Services through the local municipality - for lack of a better way to describe it. First there was the visit and intake at the local office, followed by a home visit by a lovely social worker and then, this scheduled eval at their offices - mercifully, right next to Akiva's school. We arrived and waited and availed ourselves of the often available instant coffee and hot choc and tea. You have to live here to have an appreciation for instant coffee, despite the ever avail coffee hafuch, Israelis lived on instant coffee for years in the early period of the state. We waited and let Akiva climb up to see the cars outside - we were alongside a main drag and Akiva is currently wild for viewing cars, in particular off of the pedestrian bridge on Derech Hevron near our house. We saw the doctor. We talked about epilepsy. He said, "did Akiva ever have an MRI or CT for his diagnosis of epilepsy as an infant?" We said, "no, don't think so." He said, "impossible." We said, "He was in a special epilepsy wing and was carefully monitored but don't think he had that done." He begged to differ. Ira said later that he would have remembered because we paid the bills and would have noticed it and it was in the years before Akiva had Medicaid covereage. But really, who remembers. We finished with Dr. #1 and waited for #2. Looked at cars again. #2 was an evaluator. Again, any of you who are familiar with Akiva's testing history know that he's no slamn dunk when it comes to being tested. Of course, now, time has passed. It's almost 10 and it's time for "aruchat esser"/the 10:00 meal, or what they call in Britain "elevenses," except they get up so early around here that one needs another snack by 10. Akiva is hungry. We feed him pretzels, 1/2 a sandwich and he tries to answer what she's asking but as would be with all testing situations, he's not comfortable (she's across the desk), no chair that fits him well and that has his feet touching the bottom, he's been there since 8:45am and he doesn't see why he should draw a circle with a too big pencil and stack boxes, etc. Meanwhile, the cars call and we take a break to look at the cars outside while standing on a window. We all decide to take him across the way to his class - it was great. We walked into the main meeting area - big kids to the right and little to the left. Akiva is greeted by the big kids - Hey, Akiva. Music is playing, children are dancing in that great, spastic way of the retarded. (this is said lovingly.) I especially love the big kids, the teens and young adults, chatting with each other or not, jumping up and down or not and being kids and nobody cares that they're different. I should add here that Akiva is being asked for a playdate by another boy from horseback riding, Nuriel, who I must say has the most beautiful smile I've ever seen. When he smiles, the whole world is happy. He just loves Akiva, talks about Akiva (we're told) and it's tough to understand him (he's got serious speech issues) but he comes over to Akiva, hand outstretched, smile stretched across his face and life is good. Anyway, I'm willing to try a playdate - maybe the park, with cookies (as the father suggested, a lovely Argentinian named Jorge), and we'll wait for some sun which will be shining more and more over the next month or so. I digress. We leave Akiva in class for an hour, awaiting the final appt, with the psychiatrist as they've decided that Akiva needs another diagnosis. We've known this for a while having already analyzed Akiva's autistic tendancies with his geneticist in New York. We now talk with the Soc'l Worker. I must add that Ira and I are starved and tired. I know he's retarded, the evaluator knows he's retarded, the doctor knows he's retarded, we need coffee, lunch and a shot of scotch. I don't need another diagnosis but I'm told it's good for receiving services. Far be it for me to turn down services at this point - no knowing really what they might be as we're told that budgets aren't what they use to be (are they ever?)

The Pysch is ready. Ira walks back across to pick up Akiva, who's not happy to return. We sit in the Psych's office and he ignores most of her questions but does enjoy working on a puzzle for a while. We answer some questions and we all agree that we can call him PDD/Pervasive Dev Delay, in addition to the Down Syndrome. Just for info sake, kids with DS can have autism but Akiva's issues probably stem from his seizure history - or, as the neuro said years ago, the underlying brain abnormality that led to the seizures, or the poisonous medicine that he took for 6 weeks (since even she admits that nobody understands how it works), or the seizures themselves that essentially fried brain cells for 4 mos. That's the bare facts of the matter but hey, Akiva beat the nasty diagnoses that could have really ruined his life and stopped having seizures and really came back to the world that he had left behind when they started. Not bad for 10 mos old.

What might we get? Special therapies, altho we're told there's not much money around for that. But still, that means sensory therapy which would be great for him. We could be eligible for tza'ha'ron/afternoon programs, which would be great as there's a good place in the area that has great special services and therapies and could be a great place to be a few days a week, esp if it means feeling like he's part of a community. The last thing he could be eligible for is nofshon, which I would translate to respite services, potentially 15-20 days that might include overnight stays at nice places in the area that accomodate people with special needs. We could try 1 night, and then maybe 2 nights. This could mean a chance for Ira and I to have a weekend or a few days on our own, and the boys could have a break too, and Akiva could be checked on by Jess or others and it could be ok. We'll see.

The eval team meets and then we get called in, unfortunately with Akiva, to hear the final sum up of what he'll receive. Let's hope they don't evaluate too often. I can't stand these things and no matter how nice everyone is, always feel it's just grueling for the parents, the child and that it never really sees things as they are. As always, it never sees the child for what he really can do in his own environment - that's not entirely true, as their whole purpose, these guys that is, do want to see what they can do to facilitate proper placement and offer support to the family. It's just that I'm so tired of these things. It was good day for our Hebrew though, we both did well altho I confess that I did alot of the talking but Ira also added his parts when he wished.