Thursday, January 13, 2011

32 IEP Meetings and Counting

I had it all planned out that today I would write about my son's IEP meeting yesterday ... except it snowed, and the meeting got rescheduled for tomorrow, and now here I sit without a topic. This will be my next to last IEP meeting, close to the end of 15+ years of advocating for my daughter and son. Of all the bittersweet transitions that come with your last child graduating high school, IEP meetings are one thing I will. not. miss. I'm relieved that my son looks ready now to continue on to college rather than remain at the high-school for all his extra IDEA-promised years, because friends, I need to get off the IEP train. I'm done. I'm fried.

I haven't even really had a terrible time of IEPs. There was one very unpleasant meeting when I wanted to push my daughter from self-contained into inclusion, and the team yelled and I cried and though I finally got my way things were never cordial again with that group. There were a few meetings where a case manager made it really clear that I needed to be "handled," and I "handled" her right back. There have been years when I've gotten along great with the team and sort of took over, which is certainly better than being steamrolled, but short of the sort of professional "Let's all bring our best resources to the table and share all our good ideas" that's ideal but elusive. 

In high school, the meetings have been generally agreeable but super-quick; the case manager holds them in her smallish office, with people popping in and leaving and the clock ticking throughout. I've taken to talking with anyone I want to hear from and strategize with in advance so I can present a consensus without having to actually discuss things onsite. It works, but it's work.

Even the best meetings are stressful, yet it's the stress that leads up to them that really gets me. Will something unpleasant get dropped on the table? Are they plotting some big change? Is there something somebody's not telling me? Has there been a policy shift that will affect my child? Are the good grades my child has been getting just a polite smokescreen hiding lack of progress? I interpret every letter, every phone call, every e-mail, every nuance of speech with school personnel; I have angry impassioned conversations in my head about issues that never, never come up in real life. My blood pressure is skyrocketing before I even set foot in an office, and even if the meeting is anticlimactic, I'm exhausted.

I don't know if parents of typical kids can ever understand what it's like to maneuver a kid through a successful program of special education. For most parents, getting your kid through school is like rolling a marble from one end of a room to another -- you can put some spin on it, it can get there faster or slower, it might hit an uneven patch of floor and veer a little off course, but basically, once you start it rolling, it's a straight shot to its destination. Getting a kid with special needs through school is like manipulating a marble through one of those mazes where you have to keep tilting the surface one way or another, madly turning the knobs, steering away from holes, backtracking from dead-ends, never able to rest lest your marble roll back to the starting point. I'm getting near the end of that maze, my wrists are shot, my eyes are crossed, I'm seeing holes everywhere, just gotta get that marble ... a ... little ... further. So close.

9 comments:

  1. I am much closer to the other end. I have gone from the state to the county and just barely 15 months into that. The anticipation has been the same and the sleepless nights of planning what is next. So far, I have had excellent teams and leadership. We are in a typical environment now. Bless you as you enter the next phase.

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  2. Wow, you must be so thrilled and relieved that your son will be able to go on to college. Not that that's not going to be its own unique set of challenges, but still... NO MORE IEPs! You should really throw yourself a party.
    I'm still somewhere in the the middle of the first half of the maze (8 year-old), can't even think of looking up to the end yet. But thanks for glimpses of the future.

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  3. I don't know you. But through your experiences: I love you. To teary and tired to write more. Blessings.

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  4. Terri,
    You expound beautifully on the exact nature of our child(ren)'s educational experience.
    Well said and congratulations on making to the 'finish line.'
    Jmg

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  5. Terri,
    I remember your son from our old spin off Frua group...we met at the pool of one of the members in Jersey. Your husband had to hold your son's hands with his arms in the air to keep him in control. The next meeting, a couple of years later, he wanted my keys and wanted to visit my car.
    When I read today this was his last year of high school, he was soon off to college, I cried. What a life he's led and what a fantastic family. I'm so happy for all of you!
    Best of luck and thanks for this bright spot in my day!
    Roxanne

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  6. I love your marble analogy, especially since lately I feel like I have been loosing mine! After reading your post and marveling at your accomplishment, I couldn't help but feel like...there should be more of a reward for you. And I know that seeing your child succeed is an incredible reward in and of itself. But wouldn't it be nice if we were all awarded for our efforts? An honorary plaque perhaps? A ribbon for bravery, something? But since I don't have either readily available...congratulations Terri I am in awe of your accomplishment.

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  7. As someone who has only been through 1 IEP and 1 IEP revision (my daughter is 3 years old), I was hoping it would get easier! I spend sleepless nights, countless hours preparing, and lots of time talking with other parents before the IEP. So far, so good. But, I have to say that I'm not looking forward to an entire schooling of IEPs which are sure to come given that my child is non-verbal and non-ambulatory. Congrats on navigating the systems successfully and with a bit of humor left over!

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  8. Thanks so much for all the nice comments! We had the meeting on Friday as rescheduled, and I went in all loaded and prepared to argue that yes, he really can go to college, and nobody should try to hold him back. And I was surprised by a proposal that I think maybe pushes him forward too quickly. Another dip of the maze. Something new to worry about. Sheesh.
    Roxanne! I sure do remember you and that offshoot group. And those days when we had to hold my son's hands over his head. He's actually just a junior in high school now, one more year and meeting after this before college. But he would still really like to see your keys. How are things going with you and your family? If you have a chance, e-mail me at specialchildren.guide@about.com and let's catch up.
    Lisa, I LOVE the idea of awards for parents who make it through this process. I'm going to design some certificates and put them up for downloading on my about.com site. There are days when I think we should get a medal just for getting through a meeting without tears or tantrums.
    For those of you just starting out in this process, best of luck. I have a sneaky feeling that getting a challenging kid through college and young adult life is going to make me look back to where you are with nostalgia. But not yet. :)

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  9. It is so nice to hear from parents who have made it -- and lived to tell the tale. I have two in middle school on IEPs and my youngest, who is 5, will most likely be on one some day.
    It is so exhausting, even under the best of circumstances. And I find its just the beginning. Getting the schools to follow the IEP is another subject altogether!

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