hi can anyone tell me what a child with chiari 1 should avoid doing and what to tell school when starting thankyou ,,,,,,,,
Here's our basic "hint sheet" http://www.chiarisupport.org/page/hints-for-parents
I would not start my children in school without a 504 plan. Input from your doc, pt, early headstart etc. Chances are excellent they will try to blow smoke with a "252 Plan" (I've actually heard this) What they do here is meet with you say they don't want to label your child an throw more psycho-babble and educationalese at you in a 20 minute period than you thought possible. They will even say on occasion that an informal plan developed by teachers school parents etc will be more responsive. Its not. It means they can shirk responsibility. Its all with good intentions. Review the links in the above document. Every community has a parents advocate group funded in part by the state and dept of education. A great place to start is: http://www.familyvoices.org/ They can get you in touch with your local organization giver you a wealth of materials and get you an experienced mentor to go through the process with you. They will even attend meetings with you.
I am passionate about childrens advocacy pleas don't hesitate to ask anything on this thread or start another. We can help our kids by helping each other.
I would suggest that a more conservative answer would be to check with your MD.
Again, this is the area in which the science of medicine melds into the art of medicine.
With close to 100 kids in my practice with Chiari malformations, the vast majority are not singled out and have no special precautions.
As the father of 7 children, my goal is to have the child lead a normal life(which the vast majority of Chiari patients do, without requiring singling out, being removed from PE or recess, etc.)
That being said, you will know your child better than any other person ever will. Should you have concerns, you absolutely want to travel down the pathway of getting help(and a 504 is a good way to do that).
It varies from state to state(and even more so country to country) but, if there are specific educational concerns, this is where I refer to neuropsychology, who can test the child, look at brain function, and assess optimal means to help with teaching.
If you need to travel down that pathway, I absolutely agree with TJ1 that you want someone with experience to help you with it(medical professional, family who has already gone through it, parent advocate).
Hope those thoughts have been of some assistance!
Good point Doctor T
Most kiddos don't need any special treatment. We have 9 (adopted with special needs) The most difficult task we have had (we are down to one) over the years pushing the kids past their "special needs" to the next level (thats tough to balance when parenting anyway) Kids aren't necessarily self motivated. They like adults have to work through and past some things including pain. Its tough when you know they hurt and your heart is breaking to tell them to finish clearing the table, do homework etc. and even sometimes holding them accountable for behavior and especially "attitude"