Wednesday, January 18, 2012

Modified

In Special Needs world there is a big difference between an accommodation and a modification. Webster might find them synonymous; high schools, do not. One sends you to college; one does not. One allows you join the Navy and Air Force; one does not. My son receives modifications, and modifications to the modifications. He is the exception to the exception. He is consistently inconsistent and predictably unpredictable. He stands out in any crowd: a crowd of typicals, a crowd of others with different abilities, a “crowd” of two.

Over the weekend his service plan was mailed to me, I’d read and approved an earlier draft; this one was for signing purposes only. It was all I could do to read it when it was e-mailed, and I must confess, I only gently skimmed it before signing it this time. I didn’t even show it to my husband. He can’t take it. There are things I can’t take, and he handles, and things he can’t take, and I handle. Isn’t that what marriage is? We’ve been at this long enough to know what needs to be discussed, what requires a plan, and what the other can graciously and compassionately, simply make go away.

I made the service plan go away. I signed it, returned it, and hope not to have to look at it again for months. It’s not that I don’t appreciate the hours and hours of testing, evaluations and effort that went into making the plan. It’s not that I don’t appreciate the careful thought that went into forming reasonable goals and a timeline for which to achieve them. It’s not that I don’t appreciate the earnestness and dedication of the teachers creating the plan. I do. I really do. In particular I appreciate the social goals of turn taking in a conversation, using an appropriate tone of voice, remaining polite, staying on a topic of mutual interest, all of that. God only knows how hard we’ve tried on all those fronts, all efforts by experts is appreciated and welcome. So, too, is the goal to read and comprehend at a level that will make him as independent as possible. Real life math skills? Yes, please. I don’t have a problem with anything ON the plan, what I have a problem with, is that nowhere on the plan does it highlight his strengths. His cognitive weaknesses, difficulty focusing and remaining on task, working independently and at anything approaching grade level, that’s all there spelled out in excruciating detail. Nowhere is his kindness, his spirit, his compassion, his joy, his soul. No where does it reflect his ability to meet someone and never forget their name, track their age forever, hold on to every little tidbit about that person that makes them special and unique.

If the rest of us had to have our weaknesses documented ad nauseam and ad infinitum, that body of information trail us for years and years, possibly our whole lives, how would that be? If we needed whole teams of people to determine if we’re meeting our goals 80% of the time, how would we handle that? Everyone signing their names and moving the goal forward until it is either reached or stricken when it becomes painfully evident it will never be a reality? Can you even imagine?

I don’t even pretend that I can change the IEP process, even if I wanted to, even if it was possible, I no longer have the strength. All I can do is remind myself that my son is more than the sum of the parts of the IEP, he is not what that he is on paper – not by a long shot. The thing for me to do is modify the weight I put on it; accommodate my own need as his mother to see him fully. The gifts he has and the gift he is. His exceptional, unpredictable, inconsistent, perfectly imperfect and whole self.

 

 

9 comments:

  1. My son is diagnosed with aspergers and I see the IEP as a guideline. It may illustrate in hard black letters what he has not mastered or what he won't but he's mine and I love him even if he can't do everything else that other typical kids can. My son does not like recess and he is forced to go and stand in the chaos he finds so unnerving. Is this really necessary? Let him get on the computer and do something he likes ... he may not be an athlete or as active as other kids but he's not fat and does not sit around eating all day long. We all can't be the same ... it's not possible and some of the best minds in the world struggled to be accepted i.e. Einstein - kicked out of several schools until he found what he was destined to be.

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  2. So beautifully expressed. Thank you.

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  3. This really speaks to me today. Well-done. And so beautifully written.

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  4. So beautifully said. The very model of deficit-remediation versus building on strengths and attributes chafes me raw each and every time we go through the IEP process.

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  5. Gosh, Carrie, thanks for sharing this. I thought I was the only one that could not bring myself to read the whole thing either- like there was something wrong with me.. And you're right. The spirit and beauty of the soul that is being picked apart and distilled on paper is always absent. I believe though that this will be the part of the new world that is forming, that we will celebrate differences and finally not try to push individuals into being a standard of "normal." It will take time. And regarding the various necessary papers or meetings, my husband and I do that for each other too, though it is unspoken. There are some things that are just too painful that I can cope with a little better than he can and vice versa. I just love your writing. It is so clear, and you always give a voice to what I want to express!! XO.

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  6. Well, this post basically summed things up for me and the IEP process. I know I should look at it in detail, discuss it with my husband, analyze it, etc. But I cannot and do not look at it, ever. I think it is a waste of time. It is a document with words that are put on paper because legally it is required. "The Team" is always sunshine and rainbows reviewing it and creating new goals. I tune them out. That document does not even scratch the surface of the issues my daughter faces. I do not care if she gets to her 2 times tables with 80% accuracy by May. I want her to feel comfortable going to school. I want her to have friends. Similar to the comment left above, my daughter loathes recess. No one talks to her or plays with her. The other children point at her, whisper, and laugh. "The Team" responds to this issue with "she needs more socialization, she needs a social skills class, etc..." This makes her sound like a dog. We have tried all of those things numerous times. They do not help. There is more to this child. Things are much more complicated than that...I could go on. Thank you for your post. - Jeanine

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  7. Beautiful.
    I also love - Isn’t that what marriage is? We’ve been at this long enough to know what needs to be discussed, what requires a plan, and what the other can graciously and compassionately, simply make go away.

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  8. This is so much more eloquent than the rant bout IEPs I posted last time. I am going to take your words to heart so i don't go off the deep end next time around. Thank you :-)

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  9. Wow...that was great! What a nice redirection of our own thoughts...change the weight we put to it. I will be thinking of this as we head into IEP season. That will help tremendously...thanks!!!!!

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