Brainstem Implant

[jag]

Silas see ENT at Nemours Children's Clinic and for the ear infection that destroyed his ears we had to go to Mayo Clinic. I am hoping either his surgeon or the Mayo will be able to do this even if it means when he gets older.

Do you see Dr. Beatty at Mayo? Great dr. Great surgeon, did my CI. and an co workers bone conduction HA thing. He also sees my daughter (down syndrome) and jsut started following my grandchild.

If you see him I would think you would get an answer about what would work well with your son. He really does want to help if he can.

good luck. (cute kid )

 

[jag]

We have Florida School for the Deaf and Blind and after talking with them the reason they are hesitant on taking Silas is all his doctor needs right now. He would go down sunday evening and not be home until friday evening. If we lived closer the would go everyday and be home at night. St Augustine is just too far for my husband to drive to work everyday.

My daughter commuted everyday, 1hr each way when we first put her in MSAD (minnesota). during that school year we started letting her stay one night in the dorm and gradually increased it. She now goes up on monday morning (most kids arrive sunday evening) and everyone is dismissed and sent home at 1 pm on friday.

If the school for the deaf is the best place to educate him then they to are supposed to provide the staffing and support that he needs. The biggest thing you need to do is really research the school. I know of a family who researched schools and moved to minnesota from a southern state because the results of the education at this school were better then others they'd looked at. (this is just what the mom said, i really don't know how my daughters school ranks nationally, but I do know they have always been positive about what my daughter can learn, while she may learn slowly they don't say that she can't)

Oh and don't listen to drs and other 'professionals' who are nay sayers about what your son will do. Best to move on to a more positive school if possible. There are good sped teachers and then there are alot of crappy sped teachers to. If possible move to a more positive school while he's still young enough to benefit.

 

[jag]

He sounds more severe.....I mean he understands signs without intensive therapy?!?! That's GOOD!!!!!!!!!!! And you said he does say some words? Again that's an awesome sign!!!! Maybe if you get hooked up with an augmentive communicative specialist you could find that your son isn't as affected....and maybe growth hormone could really help him!

She could start here. www.pacer.org.

I believe she's in FL so on the national map at pacer website shes in region 3, her contact information is:

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Family Network on Disabilities of Florida, Inc.
2735 Whitney Road
Clearwater, FL 33760-1610
727-523-1130
727-523-8687 FAX
1-800-825-5736 FL only
E-mail: pen@fndfl.org
Website: http://www.fndfl.org/PEN/
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Florida (CPRC)
Parent to Parent of Miami, Inc.
7990 SW 117th Ave, Suite 201
Miami, FL 33183
305-271-9797
305-271-6628 FAX
1-800-527-9552
E-mail: info@ptopmiami.org
Website: www.ptopmiami.org
Miami Dade and Monroe County.

The pacer center I've used is in MN. I haven't looked at the website much lately but I believe it originates in MN. but there is alot of information on the site. plus the links to various agencies that do the same thing in other states. I've been known to take forms from other states (like prior written notice) and print them out if I think I'll have a problem with the IEP team rejecting a request. I figure at least I'll have a sample of what I want and they have to give me PWN in the correct way. so by all means look at what other states have if only to get ideas.