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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Saturday, June 13, 2009

Timmy's IEP

The other day I FINALLY received the final copy of Timmy's IEP. We had the IEP meeting on April 1st, to set goals for Timmy's kindergarten school year, which starts July 21st. There was some info that had to be obtained before the final copy could be prepared. We had to get the school system a copy of Timmy's most recent audiological report. We had an appointment on April 7th with Timmy's audiologist (Pat Rouche) at UNC in Chapel Hill, N.C., at which time we discussed the use of a FM Trainer System for Timmy during instructional learning at school. The Mrs. Rouche agreed that being we had seen more spoken words from Timmy when he was wearing his hearing aid that a FM Trainer COULD be tried to see what if any results Timmy would gain from the use of the FM Trainer System. The Mrs. Rouche also suggested that we stop having Timmy to wear his hearing aid, because he tested "normal" hearing in his left ear and by him continuing to wear the hearing aid, we would be over amphifying his hearing, which in turn could cause damage to his ear.

Well, when the school's audiologist contacted Mrs. Rouche, she acted as though we had NEVER had the discussion about the FM Trainer System. She also stated to the school's audiologist that she felt that Timmy would not gain anything with the use of a FM Trainer System.

Why is it as parents, we have to put up a FIGHT to get services for our children? Why is it that teachers, audiologists, doctors, therapists etc... question our knowledge about what we KNOW to be in our child's best interest and WILL work best for our child?

After over 30 minutes of TRYING to get my point of view across as to WHY I feel that a FM Trainer WILL benefit Timmy, I'm happy to say, that we all were able to come to an agreement. A trial period will take place 4 weeks after school starts. The first 4 weeks, is to give Timmy time to get use to the new school setting and for the teacher to get to know Timmy a bit. When the trial starts data will be collected. The first part of the trial will be without the use of the FM Trainer System. The second part of the trial will be with the FM Trainer System. Each trial period will last for 4 weeks. At which time, once the trial period is over, we all will sit down and go over the results. If this trial doesn't work, we will consult with Mrs. Rouoche once again to see if she has any suggestions.

I'm just afraid that being Timmy will be in a special needs class with children of all ages (K-5th grade) and varying degrees of disabilities, that Timmy will not be always be able to hear the teacher, especially when she is teaching the class as a group. I have met with and spoken with Timmy's kindergarten teacher. She estimates that she will have a class size of at least 10 students this year. So there is absolutely no way that she will always be able to be facing Timmy and speaking to him within 4 feet. And there is no way she will be able to always work with him one-on-one. I REFUSE to let Timmy be a stastic, placed in a corner and left there to entertain himself, just because he has a severe learning disability! Timmy IS and HAS Potential! Given the opportunity, correct teaching strategies and materials, Timmy CAN and WILL go far!

This poem fits this situation perfectly.... Oh the stress, headache and fight needed to get the IEP FINALLY right!


I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.
Would you, could you
Like the form?
I do not like the form I see
Not page 1, not 2, not 3
Another change
A brand new box
I think we all
Have lost our rocks.
Could you all meet here or there?
We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.
Would you, could you meet again?
I cannot meet again next week
No lunch no prep
Please hear me speak.
No, not at dusk. No, not at dawn
At 4 pm I should be gone.
Could you hear while all speak out?
Would you write the words they spout?
I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).
You do not like them
So you say
Try again! Try again!
And you may.
If you will let me be,
I will try again
You will see.
I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You got it right!"

1 comment:

Michelle said...

I think you're right to wait to start the FM trainer. It will take them a few weeks to get to know him and see how he reacts to the room level noises and voices before starting it. As far as putting him in a corner.... they won't as long as you show up often.
Just my $.02 worth.
Michelle in WA

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