Hi does anyone have this on their child’s IEP if so what are the services?
Hi Melanie. My son has an IEP & it reflects everything. He gets extra time for tests, rest periods at Nurse when needed, 1 on 1 learning with special Ed teacher/tutor. Chiari definitely affects learning. You have to be your childs advocate & request meeting to implement a plan. Nothing comes easy with Chiari & the school. Good luck:)
I am no stranger to fighting for what’s needed in an IEP my older son has autism/bipolar so I can definitely fight for him I was just unsure about this illness and .the different thing it requires I was also hoping maybe something that would allow him whatever absences he needed. He missed a lot of days last year for mysterious pain and exhaustion now that I realize those are chiari issues the chiari is affecting his breathing especially creating central sleep apnea
Hi Melanie, did you see this article in the Chairi Information section: Hints for Parents
No I hadn’t Jules that was a really great article thank you. Is there by chance one you could send me to also to tell me what other specialists he should see and should his doctors be writing up letters to the school. With them previously I had neuropsych testing to back me up not sure what I use for this or who all should he see for the various symptoms ie audiology eat doctor etc?
Glad that is helpful Melanie. I'm sorry but I don't know the answer to your other questions but I would imagine that at this early stage in your sons diagnosis your family doctor would be the person to advise you until you have seen the neurosurgeon and know what is an appropriate treatment/management plan for you son. Maybe the neurosurgeons office could also help as I'm sure this is something that comes up with many children.
For U.S. pediatric neurosurgery: The American Board of Pediatric Neurological Surgery http://www.abpns.org/ (the list of board certified neurosurgeons guarantees they did a fellowship, have a practice that is at least 75% pediatric and meet at least minimum requirements).
I have been a special education teacher for 22 years and have Chiari myself, so I understand the cognitive affects.
With Chiari being a neurological disorder, your son could qualify in the category of Other Health Impairment (OHI), if you can show Chiari is impeding his progress in the school setting in at least one of the following areas: academically, behaviorally, and/or socially-emotionally.
The more documentation from doctors the better, but as long as you have a statement from his primary care doctor with his diagnosis and how it affects his learning and/or any one of the aforementioned areas, that is all you need. In the letter you would also have the doctor state that your son will miss several days at a time when he has a flareup, which often happens unexpectedly.
If your son begins to miss too much school, you may want to look into home-bound tutoring, which they may even end up suggesting if they see he is out too much. Good Luck!