Tuesday, February 9, 2010

IEP's and Tongue Twisters


How Much Wood Could A Wood Chuck Chuck, if a Wood Chuck Could Chuck Wood?

Good Question...I honestly don't really care. But sitting in the the small group, at Braden's IEP meeting yesterday, I began to wonder how bright our supposed "leaders" really are.

Do people really ponder questions like a wood chuck chucking wood, then make up a funny rhyme about it?

Anyways....Sometimes at these IEP meetings I have no choice, but to 'zone out', because they can get overwhelmingly exhausting.

As we were discussing the modifications of behavior and social skills part of the IEP, Neurofibromatosis came up in the discussion.

We had talked about our 'condition' at the beginning of the year and I even gave each of the teachers a wonderful print-out provided by The Children's Tumor Foundation, that explained the 'NF child' in a very descriptive, beautiful way. (thank you CTF for this) But it seems this print-out got lost, and the teacher just wanted to ask ME, the mom, some personal questions about how NF impacts Braden's life. (I was thinking "hmm this meeting is supposed to be 45 minutes...The ins and outs of my son and the way NF is a part of that would never be explained in 45 minutes! Like a spider's web....delicate and complex").

The teacher's began to joke about Neuro-Fibro-ma-tosis, in a light hearted, very unoffensive way. In fact, I kind laughed inside of myself at their ignorance. "Wow, that's such a long word and hard to say." One teacher said. Another said, "Yeah, kinda like a tongue twister, try saying it 3-times fast!" "Neurofibromatosis----Neuro--fibro--moy....ohhh DARN.....That's sooo hard to say!!!", the teacher said. And me, being me, finally gets to say the response I have been waiting for ....since I began blogging (and Thriving)........ "Think it's hard to say? Try Living with it!"

The room feel silent. The playfulness was over. How does NEUROFIBROMATOSIS impact Braden's Life ? Let me sum it up for you. It makes him stronger (not weaker), He learns different than other children, so help teach him, he loves different than other children, but still needs the same encouragement, he is soft spoken, so listen better, he may need to be told over and over to do something...but eventually--He'll get it, so praise him!

NF impacts our lives in so many ways, but only negatively, if we allow it. We have chosen, as a family to keep as much bad out....and to seal in as much good as we can. We focus on the good times, the happy times, because we know, there will be plenty of bad.

We are constantly "turning it around"...and finding something good....Because in life that's what you need to do. If you focus on the bad---that's all you will get.


  1. Those teachers are gross. my stomach churned when I read that. even if you don't know what it means... how dare they.

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  3. I agree---and I was better than my Hubby would have been. He would have thrown the biggest fit, when those teachers started to do that.
    When I said "I wonder How bright leaders really are" If they acted bright...they would be treated as such---am I right here?