Please give your advice.

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polly1418

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Hello all,
I am new to the form but have read several threads. After searching the web for answers I feel this is the best place to get some advice.
My son is almost 3 and has APD possible Auditory Neuropathy. Since we will not implant our son we do not feel an immediate need do the test.
Currently he understands no words and says no words and that is ok. He does not tantrum because he has found an effective way to tell me what he wants. Climbs the high chair he is hungry, puts my hands under his arms he wants up, leads me to the fridge he wants milk, so on so on. I blame myself for not starting ASL sooner but we are starting now. I think he knows 2 signs but not 100% sure yet.
Anyway I guess what I am asking is about how long will it take for him to start learning and using signs. He has had basically language for the first 2.5 years of his life just noise and music. He loves music. He loves for me to sign itsy bitsy spider and puts my hand together if I stop and only sing the song.
Please ask any questions about my boy I am more than happy to answer
 
At three, he can start learning right away. Fluency is you actual question? Depends on how much input he gets.

Don't you have early intervention services if he has APD?

I wasn't even aware you could get that diagnosis at that age, and I have a daughter who actually has it.
 
We do have early intervention and I will be taking him to therapy soon. We do not have a formal dx. In order to get a formal dx we need to do a brain stem test to rule out auditory neuropathy. If his brain stem is functional then it is APD. My son has zero auditory language comprehension. The concern the Audiologist and I have is that he may never acquire enough spoken language to ever take the tests.
We are hesitant to give him a brain stem test because it will not change our therapy outcome, teaching him ASL, we have no intentions of implanting our son.
Even if he acquires some spoken language why should he always struggle we want him to have a solid language not a broken one.
So even thought the dx is not formal, aside from the brain stem test the Audiologist says this is what he has and to proceed accordingly.
 
Did a quick reply. Don't think that is what I meant to do.In order for him to get a formal dx he has to get a brain stem test. I don't think we are going to do that. If we do and he should pass, because he can pick out music he enjoys, the audiologist said APD is what would be next.
The audiologist said he might not ever understand enough spoken language to formally take the ADP tests but that is more then likely what is going on. He can't say 100% because we have to do the brain stem test first.
I am lucky to have a good dr's for my boy.
We do have early intervention but for the first half of it they were trying to get him to understand verbal commands. I have made a personal change and they are not longer trying to "fix" my son but teach my son. Things are going well had he is more compliant doing his lessons.
 
Wirelessly posted (Blackberry Bold )

I have APD (not CAPD) - and it's basically impossible to "test" for. Diagnosis can be AIDED by things like ABRs and EEG etc, but really at the end of the day it's a matter of symptom assessment.
By an Audiologist who specilises in APD, communication disorders and neurological hearing issues etc.

All that being said - for me ASL has made a massive possible difference in my life (as have assistive listening and signalling devices).

I'd suggest looking at Early Invervention, contacting the Disabilty services Hoh & Deaf dept to find out about ASL day programs and also ASL socialization events for kids and families. All these things will be a huge help.

Alos look into the Signing Time videos - they're a good video series that may help in a fun way.
 
ok I think I need to rephrase this. Kids have milestones. Mine of course has missed his speech milestones he has also missed ASL milestones for kids who had signing in their life from birth.
He is in all the therapy I can get right now and just found out about the deaf/hoh preschool he can go to but he can't go till 3 if they give him the option. I know they want to put him in a autism only class right now even thought he is not autistic. Lack of spoken language does not make you autistic. I will fight and he will get the proper HOH placement.
I guess what I am looking for is milestones. I know he is progressing but is it at an appropriate pace.
His audiologist talked about FM systems and hearing aids but that will only make the language louder, he still will not process it. So we ruled them out for now.
He is not into tv. Only mickey mouse club house and wipeout.
sorry I am not trying to be difficult.
 
polly1418 said:
ok I think I need to rephrase this. Kids have milestones. Mine of course has missed his speech milestones he has also missed ASL milestones for kids who had signing in their life from birth.
He is in all the therapy I can get right now and just found out about the deaf/hoh preschool he can go to but he can't go till 3 if they give him the option. I know they want to put him in a autism only class right now even thought he is not autistic. Lack of spoken language does not make you autistic. I will fight and he will get the proper HOH placement.
I guess what I am looking for is milestones. I know he is progressing but is it at an appropriate pace.
His audiologist talked about FM systems and hearing aids but that will only make the language louder, he still will not process it. So we ruled them out for now.
He is not into tv. Only mickey mouse club house and wipeout.
sorry I am not trying to be difficult.
Click to expand...

Yes, he needs a Deaf ed placement. He's basicly like a voice off Deaf kid right? I can't believe they're pushing for an autistic placement?!?!? WTF?!?! He's got a severe auditory processing problem. It's rare yes but it's not unknown.
He does need Deaf ed....there are kids who are hearing but use ASL as a first language .
I thought that FM devices sometimes helped with AN? It might be worth it, to experiment to see if it works...Full toolbox of options and all......but yeah.....AN kids ARE considered Deaf, even thou they may not have a traditional dhh loss.
 
The way it was explained to me is that an FM system will amplify the speaker. The audiologist said making it louder and clear isn't going to help if he can't process it, same with hearing aid so we ruled them out. If he starts to show any receptive language we might try one.
We are iffy on the brain stem test because even if his AN does not work right we have no intentions of implanting our son so we don't see the point. Why should he have to take a test that requires drugging anyway?
I kind of feel like even if he does acquire some hearing I should not force him to live with only partial language. I want him to have a fluent language, I don't want him to feel like he has nowhere to fit in. Not being able to do ASL fluently and not really being able to hear or speak fluently that would suck. I want him to get into the Deaf ed class and will fight to get him in.
Did I just mommy ramble or does this make sense?
 
You can try to get him into a deaf school, but it's important for his language development for him to have complete access to language at home as well. School is only for a few hours each day, the test of the time has a tremendous impact as well. I'd get going more with learning how to sign, and use it consistently. Your EI provider should be able to teach you guys, and I'd also recommend getting in formal ASL classes.

Edit to add: Getting him into a school for the deaf will be a challenge if he isn't profoundly deaf and doesn't use ASL as his primary mode of communication. I'm not saying its impossible or not worth the effort, but I'm just giving you a heads up.
 
polly1418 said:
The way it was explained to me is that an FM system will amplify the speaker. The audiologist said making it louder and clear isn't going to help if he can't process it, same with hearing aid so we ruled them out. If he starts to show any receptive language we might try one.
We are iffy on the brain stem test because even if his AN does not work right we have no intentions of implanting our son so we don't see the point. Why should he have to take a test that requires drugging anyway?
I kind of feel like even if he does acquire some hearing I should not force him to live with only partial language. I want him to have a fluent language, I don't want him to feel like he has nowhere to fit in. Not being able to do ASL fluently and not really being able to hear or speak fluently that would suck. I want him to get into the Deaf ed class and will fight to get him in.
Did I just mommy ramble or does this make sense?
Click to expand...

Does your school district have a DHH placement?
 
Just found out that our school system does not have DHH preschool placement. I am feeling a little desperate and a little nauseous.
He has no verbal communication right now just gestural.
I took one ASL course many years ago in college but that is not nearly enough. At the moment I plan for him to learn ASL as his primary language. I am signing words and phrases to him and I just learned the ABC song. My fingers do trip up but I am getting better. (P, Q, R just messes me up)
I need to move.
 
polly1418 said:
Just found out that our school system does not have DHH preschool placement. I am feeling a little desperate and a little nauseous.
He has no verbal communication right now just gestural.
I took one ASL course many years ago in college but that is not nearly enough. At the moment I plan for him to learn ASL as his primary language. I am signing words and phrases to him and I just learned the ABC song. My fingers do trip up but I am getting better. (P, Q, R just messes me up)
I need to move.
Click to expand...

What is his category of eligibility?
 
Where do you live? There are lots of orgs that might be able to help, but what's available varies hugely depending on where you are...
 
Polly1418:

I read you post and it was like I was writing it to some degree. I am a mother of 3 year old little boy who can not speak at all. He can make sounds but nothing more. He is completely on target for everything except communication. We are in the middle of doing all the testing and trying to figure out what I already know. My son is either deaf/HOH. Our son hasn't learned how to control his frustration when he thinks we don't understand or he can't seem to tell us he screams (and I mean SCREAMS!) and cries. He is FINALLY though learning how to communicate on some level. Like handing me his cup when he wants milk. We keep a dish out so he can grab it and bring it to us to let us know when he is hungry or wants a snack. And if it's something else that he can't explain he has started taking us by the hand and showing us. And sometimes he just puts his hand to his head with his palm out as a way of expressing something he wants and just screams. We are struggling but learning. It's so hard at times. I myself am deaf/HOH. I'm deaf in my right ear and have on around 40% in my left ear on a good day, it's more like 25% - 30%. So I know how hard life his for him...actually I use to be completely deaf but with the aid of surgeries I have what I have now. I'm finding it so hard to find help for our son. We are not getting anywhere it seems. Our school district will not help us because our son can't do any of the test and new surrounding are very hard for him. Because he doesn't know what is going on and it's hard to reassure a child that something is okay when it seems to scary to him and communication is an issue. I know EXACTLY what he is going through, like I said I use to be him. We don't know where to turn at this point, the state won't help us, the school districts are not helping us. They do have a deaf/HOH school here but it's an 1 hour away and it's only part time. And it's not cheap by any means. Have you found any other resources? We are working on ASL with him...he has learned the sign for cup, juggle, car, eat, home, and I LOVE YOU...and to have him say I LOVE YOU the first time (3 mos again) I just broke down and cried. It was beautiful...finally my son understood and told me he loved me. You wait for that moment as a parent. He hasn't learned much else as far as ASL and we have been working with him for months, I'm just not sure if he is not interested or what. We have a very hard and long road ahead of us. Sorry for the long post...

EDIT: Deafdyke told me that the deaf/HOH school in our area while expensive actually comes out of the public school system/state pocket. That was the biggest relief and the best news. I had no clue about that, I thought it was something we would have to fork out. Also Polly have you thought about a private tutor? My husband and I have been thinking about it and wonder if we shouldn't do that. I really want our son to go to the deaf/HOH school though, he NEEDS to be around children like himself. It's important. Our son won't play with hearing children as they can't understand him and he can't understand them either. It's so awful to watch a vibrant child hold back from playing with their peer due to lack of communication. I am my sons best friend but I want him to have so much more. I hope we can get him a spot at the deaf/HOH, I am willing to drive to the moon and back for him to give him a life and a life with normalcy.
 
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I think I might take him to CSD to get tested. He has an AN test scheduled for oct 24 but I think that will come out fine. I think he will end up being diagnosed with CAPD but who knows.
I want him in the DHH class but he will be the only 3 year old all the others are 5 and up. ASL is going ok. He is not doing much expressively but that is ok for now.
I'm not sure what to do right now. Lots of hand over hand sign.
 
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