Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Postby 3kidssane » Fri Apr 08, 2011 7:35 am

DOes anyone have an IEP set up for their child regauding Chiari, ar Syringo?
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
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Joined: Tue Dec 29, 2009 12:56 am


Postby hagiefamily » Fri Apr 08, 2011 9:14 am

There are several different avenues to look into when dealing with your childs needs at school I work for a district in Iowa and all districts have to pretty much follow the same state guidlines when it comes to plans for your children's educational needs, but some tend to go about them differently. Here are a few things you might want to look into for your child: Section 504, IHP and a n IEP. Please don't let the school bully you on your decisions and make sure you have you drs behind you. You are entitled to accomidations for your child when needed.

Mom in Iowa
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Joined: Wed Feb 09, 2011 12:20 pm


Postby lttutrow » Fri Apr 08, 2011 6:54 pm

I've met some people that have IEP's and some with 504's. My kids have had 504's so far, but the guidance counselor for high school suggested we set up an IEP in the fall.
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Postby memom » Mon Apr 11, 2011 10:16 pm

Yes, we have a IEP for our daughter who is in the third grade. We had a 504 first, but "accomadations" were not enough. Our regular ped doc signed off on the medical form nec. for the IEP. In our case, physically going to school each day was too demanding for MaryEmma. Trying to stay on a schedule proved to be to much. Things are much better now that the pressure of trying to keep up with everyone else has been removed. MaryEmma has a teacher that comes to the house up to five hours a week. I supplement her education the rest of the week. She is able to keep up and do well with this schedule. Her teacher sends me a lesson plan each week to follow.

We make sure that we have friends involved in her life as much as possible. There are several girls in her class that we keep up with. MaryEmma participates in art class once a week and a cooking class once every two weeks. It is not perfect but it works for us. She is happy and passing third grade with good grades. It takes awhile to get use to this...but it can work. Please let me know if you have any other questions.

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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