So, here is where I tell you all that it wasn’t that bad, everything was fine and I made myself anxious over nothing. And you can all roll your eyes and think that I totally overreact to everything, God! I’ll grin sheepishly at you and mentally make a note to do better next time. I won’t do better next time, you should know that by now, but at least I am aware that I should, right? Do I at least get credit for that? **begin school flashback** Do you offer extra credits? I make awesome custom roller shades ((At least one of my HS peeps will remember this brilliant idea.)). **end school flashback**
Uh, what was I talking about? Right, the home visit. So it wasn’t that bad, it was actually rather funny. The psychologist is a lot of fun. She has had some contact with Monkey and knows of his “quirks,” she thinks he’s funny and she really, really likes him. Anyone that really, really likes my kid and sees him and not his Fragile X symptoms is awesome.
The Vineland questionnaire is tedious and it takes forever but it can also be rather funny when you’re scoring a 6 year old. Some of the behaviors, which would not be funny at ALL if he were older and exhibiting them, are amusing now. We actually had to answer yes to some of the “maladaptive” behaviors and we still thought it was funny.
For instance, swearing. That’s a yes. But he does it only at home and he uses them appropriately so we don’t make a big deal out of it. Besides, he doesn’t use the biggies…I don’t even really consider “crap” to be a swear but apparently, it is. Justify, justify, justify. In our defense, she was even cracking up when we were telling her the stories.
By the time we hit the end of the survey she was reading all of the questions just because it was funny. We may have all been a little punchy by then too but there are not a lot of laughs in IEP related meetings so we’ll take what we can get.
Obviously, we don’t have any results yet but Monkey did score above his age range in certain daily living areas. She told us that she’d never even gotten to ask some of those questions before. He also scored below average in some areas, fine motor skills still give him grief and probably always will. I think what we’ll see in his scores is exactly what you’d see with any kid with Fragile X…uneven skill development with some areas of particular weaknesses and others which will be more advanced.
She also showed us a couple of questionnaires she wanted to have his teacher complete. At the last full team IEP meeting I brought up the fact that there were certain tests I didn’t want done. Essentially standard format IQ tests. He won’t do well, it won’t show his strengths and weaknesses and the number that comes out will not give you a complete picture of who Monkey is and what he’s capable of. Most reasonable people understand that but there are some who latch onto the number and can’t see anything else. So, I’ve clarified my position, I don’t want to micromanage the evaluations. Questionnaires are fine. I trust the reports of his teachers and therapists.
While I was explaining my issues with IQ tests I brought up the fact that Monkey had been given one and that one person (I didn’t even hint at who this person was because it’s one of her colleagues and I don’t do that to people. I didn’t even tell her it was someone at the school, I totally get extra credits there!) had latched onto a number and challenged everything we’ve worked so hard to get for Monkey educationally…just out of ignorance? stubbornness? a pure hatred for being challenged in any way?? Probably some of each.
It turns out that I didn’t need to be so circumspect in my explanation. I had totally forgotten this but she was at that meeting. Ha! Her comment on that whole exchange was “I couldn’t believe that was happening! It was awful!” We didn’t imagine it. We were being attacked. Yay, I guess? It’s nice to have someone confirm that we weren’t being over protective and overly defensive. So.
One last thing and I’ll stop because my fingers are tired. When we talked about “The Number,” she told us that it clearly doesn’t apply to Monkey’s abilities. And all this drama aside, The Number isn’t even that bad. It put him in the “mild” category. It was just killer for us to hear “mental retardation” applied to our baby. Even though we knew it was coming…the first time was devastating.
In fact, I don’t really care about that label anymore except for the ways kids will use it to hurt him. The things I care about, his happiness, his fulfillment, his ability to be as independent as he wants to be…can’t be quantified. No one can perform a test and tell us what the future will bring. We have to assume he will do and be everything he wants to do and be and then do whatever it takes to give him the opportunity. Even when it means swimming upstream against the doubters.
Trains are not a new obsession for Monkey. He loves them, he’s always loved them and, I suspect, he always will. A couple weeks ago, while we were at Children’s Hospital, we saw an ad for a new train related cartoon on Playhouse Disney called Chuggington. We may be way behind the curve on this one since we only watch shows that we DVR and we have a program that automatically skips commercials but it was the first I’d heard of it. I suggested to Duhdee that he set that show up to record, just to see.
