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Thursday, November 29, 2012

Intellectual Disability...Finding out what I already knew

Tony and I had a meeting yesterday with the developmental pediatrician that tested Janey a few weeks ago.  She, like many people before, hedged on giving us anything like an IQ score, but she told us that on the tests she did (which were actually for kids younger than Janey, as tests for her age would probably be totally unusable)  Janey tested as low as she could, beneath the 1st percentile.  She said at this point Janey could be diagnosed as having, in addition to autism, an "intellectual disability".  Which means, to use the older phrase, retardation.  She said that can't be diagnosed before age 7, which is part of why it wasn't diagnosed before.

So...well.  I already knew that, of course.  But hearing it still wasn't a great deal of fun.  I know Janey has skills the test can't test, but overall, I know it's correct.  The doctor said Janey can't be expected to ever read for meaning, to do much of anything ever academic, and that spending much time on academics is a bit of a waste of time for her.  She thinks Janey needs a different school placement.  I don't agree there, for now.  Janey will stay where she is at least until after 5th grade.  But I do appreciate getting a longer term view of what can be expected.  Which, frankly, is not a lot of progress.

I don't mean to sound like I'm giving up on Janey.  I know what the movie or book or dramatic response should be.  I should say "I'll prove you wrong!" and go on to work tirelessly with Janey every second, right up until the day she graduates from medical school.  But that's fantasyland.  I will never give up on Janey, but I live in realityland.  I can see it's extremely hard for Janey to learn.  I am devoted to her---to giving her the best life I possibly can within her limitations.  I don't think it serves her to try to make her be what she isn't.  I want to work to her strengths, and she does have strengths.

For some reason, all this has been making me think about religion, and how I wish sometimes I could be more of a believer.  This is partly because when I read other blogs, it seems like it's such a help to many parents of autistic kids.  I keep thinking about the phrases "God only gives you what you can handle" and "God has a plan"  I know those aren't Bible quotes, but they are said a lot by people that are believers.  I feel like whoever doles out challenges, God or fate or whatever, has given me a lot more than I can handle, or maybe I should say handle well.  You handle what you get, because what choice do you have?  But no-one gets my best.  I can't be the parent I want to be to any of my three kids.  I can't be the wife I want to be, or the friend I want to be, or the community member I want to be.  And if God has a plan, in some ways that makes me less likely to be a believer.  It seems like it would be a mean kind of God who would make plans that involve making a little girl autistic and intellectually disabled.  I know it's supposed to be part of a bigger picture thing.  But I don't think that's the God I would choose to worship.  I hope I am not insulting anyone saying this.  I have the hugest respect for people that believe.  I truly wish I did.  I can't make myself.  I wish I could.  All I can think of to keep a possibility of faith alive is that maybe it is part of God's plan that I don't believe right now.  And it's a little convoluted!

So, we go on.  Nothing has changed.  I heard what I already knew.  Janey is who she is.  I love her, as Mr. Rogers taught me to say, just the way she is.


Sophie's Trains said...

I am so sorry :( You know, myself (and I know Sophie is much younger), I just don't believe she isn't SMART. Sure, put her next to a toddler who knows shapes and abc's and head and shoulders... She doesn't. But she knows "stuff". She can draw conclusions and that is a measure of intelligence too! What you wrote about Janey getting the answer wrong just so she can hear the phrase she likes- that's a pretty complex thought process, I'd say! Not only she had to figure out the right answer but then remember to check off the other one. I might get confused on that myself!
My point is, our girls might not be "school smart" but I think they are not completely clueless either. Like you said its a matter of finding how to motivate them, because they only try when they feel like it... Oh but they are smart, they are. I will go to my grave believing that. And I'm not a believer either

mknecht24 said...

I disagree with the doctor in some respect. Janey shows A LOT of intelligence in my opinion. Can they measure it? Who cares. Tests are useless here. Lindsey is the same as Janey. Too smart. They are very good at getting what they want. That shows intelligence. I don't think you've given up on Janey...I think you are letting her evolve at her own pace. These girls will do what they need to do when they are ready. I keep telling myself that this isn't a race and there are no winners.
On that note, I'm not a big fan of religion right now for many reasons. I do not think God gave me this "gift" nor do I think I am being punished. It just is, and sometimes it is too much.

Suzanne said...

Thanks so much to both of you. I think sometimes without my friends I've met through here, I would not make it. And you are both right, I think. Our girls are a lot smarter than tests can show. I kept thinking about the tests, and what a hugely narrow little segment of skills they test. And all the ways Janey (and Lindsey and Sophie) are able to get what they need from the people around them, to use their strengths instinctively. It's so good to hear my thoughts backed up by people who really, truly KNOW WHAT IT IS LIKE!

suenestnature said...

I read your blog from time to time and this entry prompted me to respond. I am an adult who suffered a traumatic brain injury on March 20 of this year, and as a result, I ended up in the hands of a "behavioural optometrist". He did a study about children with learning disabilities and found that many, many children with learning disabilities have eyes that don't work together as they should, just as my eyes no longer work together as they may once have. Nothing is going to make your precious daughter into something she is not, but I thought I might toss that information, that it may be worth getting her seen by an optometrist such as Dr. Patrick Quaid of Iris in Guelph, Ontario. If eye therapy might help, then it would be a shame no one mentioned it.

Aside from that, I would also like to say that your blog is touching and insightful and shows such a huge level of acceptance of your daughter for the special person she is; you don't need the crutch of something that works for someone else when you show such inner strength and beauty in your writing about your relationship with your daughter. Thank you for sharing this special piece of yourself. The future can only hold love for you and your family, because you throw only love out there to meet the challenges you face.

sara said...

I just really like all these comments. That's mostly what I want to say. And I have a daughter who falls in to the intellectual disability category, and while not Autistic, is definitely in the hard-to-test category since she is sort of a non-participator...just not motivated to do what people ask her to do even if she can do it, especially in an unfamiliar env. like a doctor's office. Not that I think she is not intellectually disabled, but I think her strengths are overlooked in standardized testing. And why does that matter to me? Not for my own ego, but simply because standardized testing reflects standardized teaching - and I need people to think outside the box to teach my daughter.