Wednesday, 30 January 2013

Coming to Grips with the "Number"...

70 is the number.  An IQ of under 70 is the score that historically has been used to define “mental retardation” or what we now refer to as “mentally handicapped” and is the number (plus or minus 3-5 points) currently used to determine eligibility for certain adult services where we live. There has been much controversy around the issue of determining services based solely on this number. I admit I am not up on all the issues as I tend to operate on a need-to-know basis when I get freaked out. It is a strategy that works for me.


When Riley was first diagnosed with autism back in 1999 just before his 5th birthday, I went through the whole gamut of emotions. Reading all the assessment reports was overwhelming. Back then we did not have a number although the words “mildly mentally handicapped” were mentioned a LOT along with “significantly below average performance” and “a severe delay in the development of comprehension skills”. Fourteen years later seeing those words is not any easier. Back then I chose to focus on the positive comments like “teachable little boy” or “displayed a developing sense of humour” and in his most recent assessment “delightful young man who is eager and works hard”.


It is a number which although describes Riley’s cognitive/academic abilities does not describe what he can do or who he is. Some individuals with extremely high IQ’s may be unable to function on a daily basis due to a variety of limitations in other areas of major life activities. Conversely some individuals with lower IQ’s, with proper supports, are able to function and live independently. So what does the number mean for us?

In the DSM-IV (page 43; paragraph 318.0) Moderate Intellectual Disabilities is described, in part, as follows:

"Most of the individuals with this level of Mental Retardation acquire communication skills during early childhood years. They profit from vocational training and, with moderate supervision, can attend to their personal care. They can also benefit from training in social and occupational skills but are unlikely to progress beyond the second-grade level in academic subjects. They may learn to travel independently in familiar places. During adolescence, their difficulties in recognizing social conventions may interfere in peer relationships. In their adult years, the majority are able to perform unskilled or semi-skilled work under supervision in sheltered workshops or in the general workforce. They adapt well to life in the community, usually in supervised settings."

Yup...I would say that is a fairly accurate description in R's case. In Riley’s latest assessment report (September 2012) it was written:  “He has well developed rote skills and is able to read words and spell within the low end of the average range.” and “…so much potential and sparks (good rote skills).” Low end of the average range. That statement?  Music to my ears. There is so much more to these assessments than just a “score”. There are so many other factors that I do not have the knowledge or expertise to explain so I won’t even try. 

So where does that leave us? For some individuals like Riley the number is not a concrete number. His wide range of abilities make it difficult to assign a single number as his IQ. Overall his number is somewhere between 45-53. While this number was a little disheartening to hear, I needed to keep reminding myself that it was indeed only a number. The number does not define who Riley is or where he will be in the future. So we will keep plugging away as we enter this next stage of Riley World. 

In the meantime I will file away Riley’s latest report with all the others and only bring it out when I need to. For now the waters are calm and we are getting ready to celebrate Riley's graduation from high school in June. Pretty sure I will be in the fetal position cowering under the bed by the end of July. 




33 comments:

  1. You go, mama! This post made me want to give you a standing ovation.

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    1. Just to clarify...did you actually stand or did you just think about it?!?! ;P

      Thanks Bec!

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    2. Well since the actual standing would have required me to move the snacks off my lap and get off the couch... but in my MIND? You got the best ovation ever!

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    3. Oh good heavens....I didn't realize there were snacks involved! Gasp. :D

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  2. I'm with Bec. I am proud to know you and am learning everyday from you.

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    1. Ahhh...thanks Alysia! I am so impressed by all you have done.

      Everybody...be sure to check out SenseAbility Gym! SO cool...wish we had one here.
      http://www.senseabilitygym.com/index.html

      D

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  3. the number is hard for me to think about.

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    1. It still is hard for me to think about even after 14 years. I admire how your family is such a tight unit...both your girls are gonna soar!

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  4. I'm with you -- numbers are just numbers -- the brain is so amazing. I choose to focus on how much of our brains must remain untapped. Everyone needs to find out what works best for him or her. Congratulations on graduation.

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    1. Thanks Jamie! I agree...the brain is amazing. If I could only tap into more of my brain cells maybe I would remember what I went downstairs for for the umpteenth time. Oish.

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  5. *Applause* and a standing O!

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    1. *blushing* Awwww...shuuuuucks! :D

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  6. You inspire and amaze me. You teach me things I didn't know I needed to learn. And you do it with such grace, eloquence, and even humor. I'm so glad I know you.

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  7. Yay for graduation! I am sure you feel quite a bit of gratification for all the hard work you put into helping R get to this point, and you should!!

    I hope I handle my girls' maturing and ever-changing needs as well as you handle you son's, Di. xoxox

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    1. I am more relieved that Ri is having a good school year to finish off 14 years thanks to a great SEA. Phew!

      If by handling ever-changing needs you are referring to white or red wine then yes...I guess I handle them alright. ;P

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  8. Wonderful wonderful. I dread the day they do an IQ test on Moe, but when they do, I will be sure to come back here and read this again.

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    1. One of the hangups I always had about testing R was how can he be tested accurately when he doesn't know what to do?!?!? I know that's part of it but...*sigh*

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  9. Yeah, those reports are something else. Sorry you're just going through it. We've had it done a few times. Each time he kinda scores lower because of his behaviors.

    They've worked so hard to get where they are now. Those numbers are just numbers. Our guys are more than any paper could EVER tell anyone. This June, both our boys graduate!! I'm so damn excited. It can't get over with soon enough!!! lol Then again, he's been home torturing me nonstop for over a year now.. so, see? The torture isn't THAT bad!! Look at ME! hahahaa Well, maybe you shouldn't lol :D

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    1. Haaahaaa...yes our boys have done it!!! Wooo-hoooo!!! Ummmm...then what??? :D

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    2. ummm... well? lol I'm still working through that one. O_O

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    3. Haahaa! Glad I have you to commiserate I...I mean "work through" things with. Ya work through. ;P

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    4. When life gets hard... i just open Words with Friends lol

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  10. I hate reading reports about my kiddo. You have written some very wise words here. Our kids aren't reports, they're not numbers, they are beautiful souls that bring so much light to the world. Thank you for putting this post into the world.

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    1. Gee...gosh golly thanks Jean! Really appreciate your comments! D

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  11. labels and numbers. I hate them. This was beautifully written. Sending you a hug and a margarita your way!

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    1. Could you make that a double of both please? :D

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  12. The number seems so meaningless! Sounds like he is doing great!

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    1. It is a hard pill to swallow sometimes Stacie but something that needs to be done in order to be able to apply for services. For the most part I read it once and then file it away for my sanity. He is having a great year so far thanks to a great SEA. :)

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  13. This made me teary. I don't know why exactly. There's something really beautiful about this post. Your son's wonderful nature shines through in those reports. x

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    1. Thanks "ME"! ;P

      His wonderful nature has saved his hide...I mean is a blessing. :)

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  14. Just stumbled upon your blog and this is the first post I've read...and I think I just fell in love with you a little. I'm currently trying to come to grips with the fact that I've got 2 kids on the spectrum that are very brilliant in their own rights, but they test VERY differently. Trying not to get bogged down in comparing numbers and taking it all too much to heart. Thank you for these wise words!

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    1. For me...the "standardized" testing just didn't paint an accurate picture of Riley's full range of capabilities as well as challenges. True the testing was required in order to obtain certain services and that's what I had to keep reminding myself. Easier said than done though right???

      Glad you stumbled by. :)

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