Trying to get accurate diagnosis for my son

sallylou said:
LAmom, I understand how frustrating the doctors are. Doctors don't react well when they cannot immediately diagnose something very common. I get the words "rare" and "complicated" then shuffled between specialists. I don't have a solution for you. Only virtual tea and sympathy.

The hearing loss with a sensory intergration disorder can look vaguely like autism. My kid had sensory issues and this created a lot of anxiety. Now that he's an adult, he's doing well. He has more control over his environment and better coping skills.

Try not to worry too much about a diagnosis and just keep trying to meet your kid's needs. You're the mom and you're the one who knows what he needs. Mostly, he needs your love. That's true for anyone.
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I think you'd be in a position to know given your and your kids medical history.
 
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You would think so. I have a hunch what it is. Testing is around $900 and will not affect treatment. Most doctors don't want to deal with it. I've heard that it's hard for Ehlers-Danlos syndrome patients to find doctors who will treat them, too. Unfortunately, it's all about $$$ in the U.S. Doctors want to see l a lot of patients in the smallest time intervals possible. A GP told me that it doesn't matter because I can't do anything about it, and this is a person that I know socially.
 
It IS very discouraging how the medical community acts when you have a child that needs special attention, but a very small wallet. You hear all the claims that the US has the best health care - but what good does it do if you can't afford it? I'm not even sure that claim is true - but that's another soapbox!
 
LAmomof4 said:
It IS very discouraging how the medical community acts when you have a child that needs special attention, but a very small wallet. You hear all the claims that the US has the best health care - but what good does it do if you can't afford it? I'm not even sure that claim is true - but that's another soapbox!
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*nods* Yes. Yes indeedy......I really do think that the results from the sucessful oralists are partly due to kids whose parents have really good health insurance. I wonder actually if that's a big reason that private oral schools have declined.....a big part of their cost is really good speech therapy. When not a lot of insurances are super generous, you get public programs set up.
 
Hi there,
I suggest that you get a second opinion. When my son was 16 months old, I suspected that my son had a hearing loss. His doctor told me that he was fine. I told him no and did not take no for an answer. I finally got my referral to a specialist and yes my son was noted to be profoundly deaf in both ears. You just have to keep fighting for him. If your son is diagnose HOH a hearing aid may make a differences for him and yes he will be entitle for some assistance. Good Luck!
 
Yeah, I was looking around today at schools around the country, assuming they will come to a conclusion that it is his hearing and that deaf education would be the right path. (I'm already convinced, but I can't get him in without a medical person saying he needs it.) I've heard the ones in the DC/Maryland area are good, and Colorado and Florida. Are there any that accept applications from long distance?
 
LAmomof4 said:
Yeah, I was looking around today at schools around the country, assuming they will come to a conclusion that it is his hearing and that deaf education would be the right path. (I'm already convinced, but I can't get him in without a medical person saying he needs it.) I've heard the ones in the DC/Maryland area are good, and Colorado and Florida. Are there any that accept applications from long distance?
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YIPPPPPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!
The Maryland ones are VERY good! Oregon School for the Deaf is very good, same with Texas School for the Deaf, Western PA School for the Deaf is VERY good. Kansas School for the Deaf (my friend sent her HOH kid there) St. Rita's etc. One good thing about schools for the deaf is that they tend to have a significent percentage of academic kids. Trying to think......deafbajagirl and shel, can you give any reccomendations for a HOH kid? There are also some good regional dhh programs too.....but I'm SO excited that you're open to ASL and Deaf Ed.....and quite frankly IMHO, a lot of the deaf schools have gotten extremely HOH friendly. One really good aspect to sending your HOH kid to a deaf school is the fact that they'll have teachers who are very experianced in teaching dhh kids, as well as speech therapists who are familiar with working with dhh kids too! The mainstream does not have the greatest resources sadly.
 
I had actually contacted St. Rita's back in June. My husband was about to get transferred to Cincinnati in August (unfortunately, they laid him off in July and we are still stuck in Louisiana). Even back then, I knew what my son needed. I just wish I could get a professional to sign off on it so I can get him started. I love the idea of him being in deaf ed around people that would understand how to teach him what he needs to know. I think ASL is beautiful, and hope he gets the chance to be immersed in a learning environment that will get him up to speed in it.
 
LAmomof4 said:
I had actually contacted St. Rita's back in June. My husband was about to get transferred to Cincinnati in August (unfortunately, they laid him off in July and we are still stuck in Louisiana). Even back then, I knew what my son needed. I just wish I could get a professional to sign off on it so I can get him started. I love the idea of him being in deaf ed around people that would understand how to teach him what he needs to know. I think ASL is beautiful, and hope he gets the chance to be immersed in a learning environment that will get him up to speed in it.
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Hopefully you can get out of LA, and towards a good Deaf School. And also amazing that you're reconizing the benifits of a specialized education! I really wonder if we may have a bunch of parents whose parents dealt with the public school system,and reconize how crappy and frustrating it is dealing with them, who will opt to send their kids to specialized schools/programs.
And yes......that is one of the best advantages of Deaf Schools....parents are happier b/c they're not fruitlessly fighting with clueless public schools, and they are also not screaming at their kids, b/c their kids aren't acheiving in public schools. I'm already jealous of your son!
 
Austin is very nice and there's a great Deaf community there. Check out Texas School for the Deaf.
 
sallylou said:
Austin is very nice and there's a great Deaf community there. Check out Texas School for the Deaf.
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I am thinking that Texas would be the best, since it is right "next door" to us. Also, Texas is good because they have a state program that is really easy for people with BA degrees in other fields (mine is English Lit)to get teaching certificates. I have a long range plan of getting serious with learning ASL to the point of being able to be certified, then hopefully one day being able to work at the school my son goes to in either the capacity of teacher or interpreter. Not only would that be great to be near him during the day, but would also give me an opportunity to do something worthwhile with my education (which hasn't been worth the paper it's printed on up until now!). Anybody have good ideas on online classes that lead to certification?
 
Well, my son had his eval today, and I count it as a possible victory. I won't hear the official report until 2/27, but the SLP told me she was going to say that she saw no signs of autism, and that he was exhibiting signs of having a more severe hearing loss than previously suspected, and that is the reason for the speech delay. If her report actually comes out saying that - YIPPEEE!
She claimed to have a son that was HOH and that he was 12 and mainstreamed, and she was already pushing me toward the local school district's special ed classes. I'm not rocking the boat at this point, but if I can get him designated as HOH, then we're on our way to the best deaf ed school we can find.
 
A progress to say the least!

Now you know where to go at this point after the report has been completed.

I had been to Austin, and drove around the Texas school for the Deaf. My gosh, it's a huge school! Lots of deaf people live around the school.

Something to keep in mind, your son would be entitled to free college education in Texas, if you all live there.
 
Miss-Delectable said:
A progress to say the least!

Now you know where to go at this point after the report has been completed.

I had been to Austin, and drove around the Texas school for the Deaf. My gosh, it's a huge school! Lots of deaf people live around the school.

Something to keep in mind, your son would be entitled to free college education in Texas, if you all live there.
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Good to know! What program is that?
 
LAmomof4 said:
Well, my son had his eval today, and I count it as a possible victory. I won't hear the official report until 2/27, but the SLP told me she was going to say that she saw no signs of autism, and that he was exhibiting signs of having a more severe hearing loss than previously suspected, and that is the reason for the speech delay. If her report actually comes out saying that - YIPPEEE!
She claimed to have a son that was HOH and that he was 12 and mainstreamed, and she was already pushing me toward the local school district's special ed classes. I'm not rocking the boat at this point, but if I can get him designated as HOH, then we're on our way to the best deaf ed school we can find.
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YAY!!!!!!!!!!!!!!!! And you KNOW that mainstreaming in LA is bad when a SLP is pointing you towards special ed. This is a step in the right direction! Too bad you couldn't fly all around and check out the various and sundry deaf schools! Also good she thinks that there's no signs of autism!
 
deafdyke said:
YAY!!!!!!!!!!!!!!!! And you KNOW that mainstreaming in LA is bad when a SLP is pointing you towards special ed. This is a step in the right direction! Too bad you couldn't fly all around and check out the various and sundry deaf schools! Also good she thinks that there's no signs of autism!
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Yeah, no way the public schools are getting hold of him! My plan is to continue our at home ASL classes until we can get to a deaf school. That is, of course, if his new hearing tests show what I think they will show. The SLP wants to send me to the same Dr. that did the original ABR that I have questions about. NO WAY! I have been in touch with someone at the LA School of the Deaf throughout this whole saga, and yesterday she referred me to what looks like a great Dr down in Baton Rouge that can do a complete hearing workup. We'll see what comes of that.
 
LAmomof4 said:
Yeah, no way the public schools are getting hold of him! My plan is to continue our at home ASL classes until we can get to a deaf school. That is, of course, if his new hearing tests show what I think they will show. The SLP wants to send me to the same Dr. that did the original ABR that I have questions about. NO WAY! I have been in touch with someone at the LA School of the Deaf throughout this whole saga, and yesterday she referred me to what looks like a great Dr down in Baton Rouge that can do a complete hearing workup. We'll see what comes of that.
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YEAH! That is AWESOME!!!!! Do we have any posters in LA that could serve as a Deaf mentor to this mom? And I'm SO excited that you're open minded about deaf schools! Hopefully it will work out that he is deaf and you can get him into deaf school! That would be so cool!!!!! Even if it turns out he just has a severe speech delay, you can continue the ASL. There are kids with apraxia, trachestomies, CP, and other disabilties that use ASL as a first language even though they have perfect hearing.
 
deafdyke said:
YEAH! That is AWESOME!!!!! Do we have any posters in LA that could serve as a Deaf mentor to this mom? And I'm SO excited that you're open minded about deaf schools! Hopefully it will work out that he is deaf and you can get him into deaf school! That would be so cool!!!!! Even if it turns out he just has a severe speech delay, you can continue the ASL. There are kids with apraxia, trachestomies, CP, and other disabilties that use ASL as a first language even though they have perfect hearing.
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My thoughts exactly. Whatever the cause of the speech delay, the ASL is working, so I'm sticking with that. Right now, my goal is getting where he can communicate his needs, wants, etc. to the world. This forum is really great support. With the "professional" world pushing at me in all the wrong directions, it's great to have everyone here helping me. Thanks!
 
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