Thursday, May 6, 2010

Apparently I wasn't as okay as I said I was

Last week, over on my personal blog, I wrote a post about assessments. About how I'm not going to let it get to me this time. About how I know that assessments only matter to the ones who are doing them, and that I'm going to be all zen, and barely even look at the results. They are a necessary part of getting access to services and that I know what my son is capable of, no matter what some standardized test says. Heck - I should want him test even further behind so we'll qualify for more! Okay, I didn't actually say that last part, but I'm pretty sure I was thinking it when I wrote that post. Then Friday happened.

Moe is aging out of our Early Start services, so he's been having exit assessments from the Regional Center and entrance assessments by the school district who will take over. On Friday, one of the psychologists from the RC came to observe him during one of his therapy sessions. Our ABA program director accompanied her. So the poor kid is going about his business with four adults staring at him. And of course he doesn't want to do much of anything. At one point, the psychologist - we'll call her Jennifer because that was her name - looks at me and says "Does he have any words?" Like she's never seen an autistic kid before. So she watches for a few more minutes, makes some comment along the lines of "Well, I've seen enough" and leaves. I felt like he, and I, had just failed some test.

Then, our program director pulls me aside and wants to warn me before our upcoming exit meeting that Moe's scores on the social/cognitive part of his assessment have gone down. I probably could have handled that, except I had just heard the same thing from his speech therapist the day before. We had our explanations: we started with a different baseline, understand more of where he really is right now, blah blah blah. But what I was really thinking was, "So what have we been doing the last year?" What has all the struggling and crying (mostly me), hiding in the closet (mostly Moe), 6 hours a day of people in and out of my house, putting my dog on Prozac, and me never getting out of the house been for? According to the tests, nothing. Less than nothing.

After lunch, I brought Moe to his school district entrance assessment. They had already met with my husband and I and asked us all the same questions we've answered 17 times but I still never really know the answers to. (Does he understand it is dangerous to run in the street? I don't know, I've never let him try. It this is a trick question?) This time, I just dropped him off for an hour. When I picked him up the school psychologist told me that they couldn't get through the whole thing and that I would have to bring him back again this week. And I'm not sure why, but that was the last straw. I lost it. Not right there in front of the school secretary and the six year old looking for a band-aid, but later, once the kids were finally in bed and I could get in the shower and safely hide from anyone who might suggest I need an assessment myself.

Jen also writes at her personal blog, Anybody Want a Peanut, and at the Silicon Valley Moms Blog.

5 comments:

  1. Jennie, with one of the J-man's assessments, the doctor who was part of the team told us it was OUR FAULT that the J-man was delayed (he didn't use "delayed" - he said "behind") because we obviously weren't challenging him enough and were letting him play with toys made for kids younger than he was. After they left, I sobbed.

    Yeah, I'm sorry. I know how it feels. As someone who always was a 99th percentile tester, I want to be a 99th percentile parent. Tonight as I wrestled the J-man down, forced his reflux pill into his mouth then scraped it around his teeth so it would dissolve, I felt like I was a negative percentile parent.

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  2. Jen: we all have those days. I lose it more than I would like to admit. It is just so defeating, I understand. You are not alone. There are times I wish it wasn't this way, but it is what it is, right?

    Hang in there!

    Tina, Ed.

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  3. Never ever forget that only you know your son. Only you. And your's is the only person's opinion that he cares about. Only you. If all that external 'work' didn't do anything, then you and he are not the issue. They and their methods failed. You tried, gave it 100% and it didn't work for you guys. 'If at first you don't succeed'...try something else.

    I wouldn't say much either if 4 people were staring at me, except maybe "Whadya starin' at??!!"

    Give him a big smile for me. He's trying as hard as he can.

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  4. You guys are awesome. I'm so greatful to have started blogging and found such a supportive community. This week has been better - though we're off to the next (hopefully last) assessment this afternoon.

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  5. I feel like apologizing for all psychologists out there! Speaking as someone who was a parenting consultant before and after becoming a parent, sometimes we don't know the damage we are doing with our words. I wince when I think of some of the recommendations I made as a 25 year old trainee. Clueless. And sometimes maybe thoughtless.

    This is tough, Jen. There are so many people who love you and Moe - of course you know this.

    You are doing everything you can, and doing it with much grace and incredibly admirable effort, and Moe is going to go at the pace that he is going to go. He is a sweet and special guy, and we can now look forward to a new environment for all of you that I hope will be helpful and less stressful for you.

    Many hugs from your nerdy spectrum friends.

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