School districts and getting the services you need, what to do?

• By dragonfly1980
• Posted July 2, 2009 at 10:42 pm
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Well I live in Maryland, Our school system is GREAT. I have never had any trouble with anything for getting help with my kids. I have two kids with medical conditions. 1 of them has NF and another has something eles. All I had to do was go talk to the Princapil and everything was o.k from there. We would have IEP meetings on a regualr basics. My kids school is great. If I have any questions or concerns all I have to do is contact the school . The teachers are really good also. I never had any problems. I hope you will have the same luck. Just talk to your school and explain what is going on. You will have to explain about NF it helps if you can print stuff out for them to read. I usually print something out for the teacher the princaipl and the nurses. I hope this helps.

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• By Hope2BMD
• Posted July 3, 2009 at 8:09 am
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First off, don't get too discouraged about his speech. Our almost five year old hardly spoke until he was three and you wouldn't know it now. As my mother said to me "Do you know many 10 year olds that can't speak?" And speech delay and disorder runs in our family. Even the most severe case - my nephew who is now 8 and is finally understandable - finally outgrew it even without decent therapy.

Of course that does not mean you shouldn't seek therapy. But our situation here is similar to yours - after age 3 it's hard to get services because it moves from public health to the schools. In fact, because we chose to enrol our son in a private Christian school for JK we were told he wouldn't receive any services if he needs them because he wasn't in the public school system.

I know there are other people on this board from California, maybe even near you - I'd suggest posting a discussion thats titled "anyone in California?" They'll notice that. Also call the Children's Tumor Foundation - you in the US are so lucky to have that resource, here in Canada there really isn't a national foundation that operates the same way. They can certainly give you advice and maybe even direct you to professionals in your area or other families in your area.

Do you have private health insurance? If so, speech therapy services ae probably covered. I'm not sure what it's called in the US, but I know there's something similar to the disability tax credit we have here in Canada - with that you get a doctor to declare your child is significantly behind in certan key functional areas and has experienced delay for a year or more and you could recieve tax credits as well as possibly extra funds to help pay for private therapy.

If none of this works out and you can't get the therapy you need - think about how hard you want to fight for it. If he's already been receiving speech therapy and you can get the therapist to give you some advice on how to continue at home that might be better for you than engaging in a frustrating battle for services that you might end up receiving just as your child is outgrowing the need for it. I don't know how bad his delay is so that's just advice based on my own experience.

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• By Cara_B
• Posted July 3, 2009 at 10:22 pm
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If your son has already been identified as having special needs (which I am assuming since he is receiving PT, perhaps through regional center?), you need to request a speech screening and an initial IEP. There you will discuss with school staff what needs your son has that the district will fund. You have every right to what you think your son needs. Bring lots of documentation (your evaluations and such). I would also recommend you bring an advocate to the meeting. This can be anyone to help you during hte meeting, but I would suggest finding someone who knows about Special Education. You can contact TASK (team of advocates for special kids), taskca.org for assistance. In light of our economy, the school districts are going to be pretty strict in their qualifying conditions and limited in the services available. Fight for what you really believe he needs. Good luck.

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• By dana123
• Posted July 3, 2009 at 10:26 pm
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Hi beautifulkana,
I live in Southern California. My 6 year old daughter has NF. When my daughter, Jade, turned 3, I called my school district. I answered their questions regarding my daughters speech delay. They had someone from the SELPA call me. I took her to the school site where they offer speach therapy and had her assessed. The speech pathologist said she qualified for Speech therapy and we started our first IEP. That was the easy part. Jade's Neurologist had the school test her in 1st grade for learning dissabilites and OT. She has a visual and auditory processing disorder. The most difficulty thing is getting the school to use a curriculum in the RSP room that is appropriate for her learning style. Are you going to Huntington Beach on July 18th? NF California is planning a special event for families to get together.

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