any advice would be wonderful!

One of my kids would actually stop, look at, and feel everything. Like a wall made out of pebbles. He's just the kind of kid who notices every detail. Maybe that's what this child is doing? Hands are interesting.
 
nope, its not that..you would have to see it..its very odd looking and very repetitive. luckily, his new therapist saw it last week because of course when we were at the doctors last month, he didnt do it. unfortunately, the head thing is getting worse..it looks like his neck is broken! maybe ill get one of those cone collar things they put on dogs for him! :lol:
 
Hope that the therapists help with that. A little boy's gotta move.
 
frankiesmom said:
nope, its not that..you would have to see it..its very odd looking and very repetitive. luckily, his new therapist saw it last week because of course when we were at the doctors last month, he didnt do it. unfortunately, the head thing is getting worse..it looks like his neck is broken! maybe ill get one of those cone collar things they put on dogs for him! :lol:
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These are all signs of problems with the cranial nerves. The sixth cranial nerve is involved with the crossed eyes and the head tilt also.

Then the cochlear vestibular nerve is involved with the deafness and when he just falls over.
 
will an mri pick that up? he has one next week..at 5 IN THE MORNING. oh that is going to be fun, im telling you!
 
frankiesmom said:
will an mri pick that up? he has one next week..at 5 IN THE MORNING. oh that is going to be fun, im telling you!
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I don't think so unless there was a tumor, and it seems more like a birth defect.

But I am not a Dr. and am not certain.
 
jillio said:
Absolutely, that is too short a trial period.
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Eeeek, that is scary. Six months yeah....But three months....that's assuming that the kid has access to a REALLY talented pediatric audi. I mean yeah....intervention is important...But you can always have the kid learn ASL to help fill in the gaps. God what next? Implanting at BIRTH?!?!
 
frankiesmom said:
we decided against the implant anyways..i feel *for us anyways* that the time we would spend having him recover from surgery, and all the other stuff that goes with the implants could be better spent learning sign language and just being a kid! i dont care if he talks or not..as long as he can express himself, we are happy! yes, it would be great if his hearing was restored 100 percent and everything went back to "normal" but its not going to happen, and we need to adapt to his sense of normalcy.
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That is AWESOME!!!!!! Chances are good that he will get benifit from hearing aids.....and hopefully he'll be able to learn both sign and speech.
I think that is what a lot of oralists miss. Opting for oral only is basicly saying that you want your kid to be in an eternal speech therapy session, and not let him be just a kid, without worrying about how to say a sound or to pitch your voice correctly ( I can't tell you how many times I've been yelled at librarians or other people b/c my voice has been too loud)
 
exactly! i cant imagine anything more frustrating!
if we can overcome these over baffling delays, i think he will be just fine.
 
Do he see the physcial therapist? the way you describes to me that sounds similiar as cerebral palsy. I know that I am not a doctor.

My two close friends who have cerebral palsy and they both are deaf.
 
he will be seeing one as soon as the referral goes through..i know early intervention in my town is absolutely worthless..they tried to tell me they didnt have the funding or contract for the deaf preschool today...RIGHT. i looked it up on their own website but no, they said they didnt and we would have to do something else. until i called the area director. i think we have that problem solved!
 
Frisky Feline said:
Do he see the physcial therapist? the way you describes to me that sounds similiar as cerebral palsy. I know that I am not a doctor.

My two close friends who have cerebral palsy and they both are deaf.
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frankiesmom, good point. I think it might be a little hard to tell at this point the diffy between severe phyiscal and significent mental disabilties.
I could have sworn that I read somewhere they can't give a concrete label on delays until they're a toddler....Hopefully his delays will be more mild.....but I do think that unless he is severely or profoundly delayed, he can be served in Deaf Ed. It's pretty much a wait and see game....but it's AWESOME you're giving him all the tools already!
 
i hope so! if the school will accommodate his eating and other issues, we should be ok. i just cant believe that early intervention tried to get out of helping me get him into the school by saying they didnt have any money..wow.
 
frankiesmom said:
he will be seeing one as soon as the referral goes through..i know early intervention in my town is absolutely worthless..they tried to tell me they didnt have the funding or contract for the deaf preschool today...RIGHT. i looked it up on their own website but no, they said they didnt and we would have to do something else. until i called the area director. i think we have that problem solved!
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I think that EI and public schools tend to try to weasel out of paying for special schools b/c a lot of them don't understand that dhh kids do better at specialized schools... they like using kids with low incidence disabilties as cash cows b/c they know that they can legally get away with giving kids with low incidence disabilties minimal accomondations.
 
I had an MRI done before when I was little frankiesmom :)
they found a scarring grey matter in my brain.
 
frankiesmom said:
i hope so! if the school will accommodate his eating and other issues, we should be ok. i just cant believe that early intervention tried to get out of helping me get him into the school by saying they didnt have any money..wow.
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Oh and frankiesmom, I would also look into seeing if organizations like United Cerebal Palsy can help with his other issues. Is the school sizable? Like does it have a special needs class? I know it's kinda early right now (to see how affected he is) but I also wonder if UCP might be able to help you with feeding therapy and other stuff like that.
 
frankiesmom said:
he will be seeing one as soon as the referral goes through..i know early intervention in my town is absolutely worthless..they tried to tell me they didnt have the funding or contract for the deaf preschool today...RIGHT. i looked it up on their own website but no, they said they didnt and we would have to do something else. until i called the area director. i think we have that problem solved!
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Good for you. Never take no for an answer when it comes to your child.
 
frankiesmom said:
i hope so! if the school will accommodate his eating and other issues, we should be ok. i just cant believe that early intervention tried to get out of helping me get him into the school by saying they didnt have any money..wow.
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This is just the beginning. You will hear some excuses that make you go, WHAT? I can't believe some of the things I have heard over the years, lol. It helps to keep a sense of humor.
 
oh i know it..his speech therapist was out yesterday and she suggested not telling the deaf school about his eating difficulties..to "let them figure it out and work with him".
yeah, right!! lets just let them choke him because i didnt tell him he doesnt know how to eat..smart idea.
 
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