kat05

Dear all,
My 17-month old baby boy is deaf and also facing difficulties in his motor skills. He was a little late in all his milestones, he does not yet walk unaided and is having physiotherapy for his trunk hypotonia.
We have put him to loads of tests, thank God everything coming back normal. I read somewhere that maybe a delay in motor skills could be attributed to deafness (labyrinth?) and would like to know if any of you parents of deaf babies have such experience as I am really anxious about it.

Deafness

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Sarfarigirl2011

hey, I had some hypertonia as a baby and I am also HOH too so welcome to AD!
if U look at my avvie, my hearing aid rocks.

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

posts from hell

My kid and myself were fine.. Hope you get this straightened out.

kat05

Safari girl, would you mind giving me some more info about what you experienced? did you have physiotherapy? Our therapist says that my son's mobile issues will get better by practice but I am anxious about their origin.

Sarfarigirl2011

yeah I had some physiotherapy! it's kinda like that but it's more occupational therapy.
I also experienced low muscle tone right on the upper trunk though

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

kat05

Did you have a diagnosis about all this?

Sarfarigirl2011

well I may have the same snydrome as deafdyke here so U may see her running around in the forums!
another interesting fact: I also have a lump (chest shield) right where the sternum is and my father also has that 2.

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

frankiesmom

my son has horrible fine motor skills, and is unable to eat solid food..but they said his deafness is in addition to these issues. my little guy has hypotonia as well. we have had every test known to man, all normal..and he falls more and more behind with every month!

deafdyke

I have mild hypotonia too! It's not something to really worry about. From your desciption, it sounds like he's Deaf with mild CP. (cerebal palsy)
I didn't walk until I was two, and had issues with fine motor (trouble handwriting) I'm pretty much OK now, although my handwriting looks like a little kid's, and my "grip" (way I hold things) looks VERY CP-ish.
If you haven't already done so, I would contact your country's CP association, and see what they can offer. It's a REALLY good idea to push Sign with dhh kids with hypotonia, b/c a lot of times we have significent speech/spoken language issues. Sign can overcome that.

kat05

His speech therapist has started signing and I am also trying at home. He has started to use 3-4 signs already. It's strange, my son has good fine motor skills (eating on his own, "writing" with crayons etc) but his gross motor skills seem to be the problem... Is there a test we could run to see whether this is CP? We have seen 3 neurologists all denying this diagnosis.

kat05

Also, another question: his brain MRI is normal. Does that mean something?
Unfortunately, the doctors cannot give us answers they say that we "wait and see" so I have started searching the web. For the hearing part, my baby has started wearing HAs (he throws them every 30 secs) and we will apply for a CI in January.

frankiesmom

frankies was normal too,but if he is picking up on signs and feeding himself..i wouldnt worry at all..my little guy cant do any of that but he can walk, climb, and run on his tiptoes..how odd!
about the CI..im no expert here but i would say to see how the hearing aids work out..frank has had his for several months and it is AMAZING how much he can hear now! we originally thought about the implant but they told us it could kill what hearing he does have and it might not work with his delays.

Sarfarigirl2011

if your guys throws them down, try putting a hat on him or the ear gear (look up ear gears on google)

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

blondon704

Ear gear never worked for us :-( It took him taking his ha's out 900 times and me putting them back in 901. Now he doesn't even notice them, unless we go shopping.

kat05

Thanks for your answers. I thought about the little hat but I was told that it affects the sound he hears through his HAs and I should better avoid it. How long should we wait for the HAs to make a difference? HE has been wearing them since the first days of November (not full time) and I think that there is NO difference at all.

kat05

Could maybe a DNA test shed light on our issues? Any experience from any of you?

kat05

Frankiesmom, that is exactly our thought, whether the CI is an answer since we have no diagnosis about his other issues. His ear doctor says that the deafness is independent and that we should go on with the implant, the neurologists say that he is a little late in his motor skills because he cannot hear and say yes to the implant. NOthing of these seems too convincing...

frankiesmom

i would definitely hold off. and that is what we were told too, that his hearing loss is totally unrelated to everything else going on..but if hes able to learn sign language and stuff, that is great! my little boy has absolutely no idea about anything, although he has learned what no means recently! we are going back for more dna testing, but i doubt they will find a thing..it looks like that our francis is just "one of those things". if anything though, you can wait until hes a little older and see if he wants the implant..that is what we were originally going to do with frankie, but since it looks like he might not ever be able to have that discussion with him, we are just going to work with what we have, so to speak. i have to say that it is very interesting to hear of another child with hearing loss and motor skills delay like ours!

kat05

He does use a few signs (food, sleep for example) after a lot of work. Do you visit a neurologist in America? What stresses me is that no doctor gives us a specific answer, everyone says "go on with the implant" without taking into consideration the rest ..

Sarfarigirl2011

yea and I was like, no way in a million years that I would wear that LOL!! (that's why I prefer tiny hearing aids like mine)
I had some genetic testing when I was little but I think it came out negative, might try again when my butt's outta of school after I graduate

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

Frisky Feline

Interesting they did not think about your kid's motor skills. why all of a sudden they focus on your kids hearing issue.

deafdyke

There's no real test for CP...it seems to be a generic term for brain damage...Like hypotonia can mimic CP.

deafdyke

Again, if its mild it's not really anything to worry about. I know parents are all " what caused it? Why did it happen?" But in a lot of cases the answer is that they just don't know. It is possible he may have a very mild syndrome. I think the only thing you should be prepared for is the very real possibilty of a spoken language delay. Spoken language delays are VERY common with kids with hypotonia.

kat05

Deafdyke, I do hope so. My son has physical therapy and his therapist told me that even if he could hear, he would have a delay in the speaking compartment. So I guess that, given additionally his hearing, things with speaking will be a little tough. Should I expect him to acquire signs quickly? He seems to use only the signs he wants for things he enjoys. Is that common? Should I make him sign to me before I give him something he wants?

deafdyke

Oh so, they're already aware that he may have spoken language issues? AWESOME! I'm very impressed. Continue with any spoken language therapies, yes. Maybe take him for an evalution at a school or a program that may be familair with kids with spoken language issues. And yes, he will aquire signs very quickly. I think he'll have signs as his first language, and continue with any spoken language or augmentive/alternative communcation methods.

kat05

Given his hypotonia additionally to the ear issue, should I expect that he will acquire signing more slowly? I have no such experience in my family and do not know which pace is "normal" for a toddler to learn using new signs. Any clues?

deafdyke

You did say that his fine motor is OK.....I'm not 100% sure, but I would assume that means that he'll be able to aquire signed language skills normally. Is he getting speech therapy too?

kat05

Yes deafdyke, his fine motor seems OK. He is getting speech therapy, for both spoken language and signing. I just do not know how quickly he should start using his signs.

KristinaB

I would think he should start using them as he learns them, but then again, I am just learning myself.

My daughter has motor skills problems ans is unable to do a lot of the signs. Also, my husband also has motor skill issues that I never really paid attention to, and he is unable to form a lot of signs.

I get confused as to which motor skills are which, but daughter was born with delays in both fine motor and gross motor. She has problems with some things, but she can do beading. I find that a little odd, but then again, maybe I am wrong.

As for your son, I hope all goes well and he begins to pick up his signs quickly.

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Taking life one day at a time.

Sarfarigirl2011

and for me, I'm half blind due to myopia (fancy way for saying I'm nearsighted) but I wear cute lil purple glasses

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s