Update - no more Mrs. Nice Girl!

ryancher

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So... where to start...

Tyler had an evaluation this morning with an awesome AVT. She has major concerns about his lack of speech (obviously) and wants to help. The problem is she is private (no IHP) so we will have to figure how to afford her ???

Secondly, I contacted the manager of IHP at our hospital and demanded to get some answers. I am tired of Tyler being pushed along. He is severely behind and as his mother I have to advocate for him. I told her I wanted Tyler tested for Neuropathy, Processing Disorders, and Impedance... if needed to complete any of these a sedated ABR would be fine also (Tyler can be a difficult one to test sometimes). She told me some "not so nice" or "professional" things which pissed me off even more... but only gives me more of a push for Tyler.

I also emailed Sick Kids Cochlear (I faxed them the questionnaire last evening). I explained in the email the urgency and the co-ordinator emailed me back and asked me to fax them every document I have from SLP, audiologists, etc... and they are going to discuss Tyler in their team meeting tomorrow.

I am a nervous wreck... the only thing that has been on my mind is Tyler and all of this. I know it's not healthy and very stressful but I need answers.
 
It really goes back to our older son, Nathan. When Nathan was 3 (and Tyler was just born and dignosed with his hearing loss) he was non verbal also. He didn't say a word - he only grunted. His SLP told us that she believed Nathan was autistic. You can imagine the devistation we went through having just found out our baby was hoh and then being told our oldest was believed to be autistic. Anyways... we never got him tested as I didn't want him labelled at such a young age... but we believed her and the autistic suggestion. Then when Nathan was 4 years old, his preschool resource teacher came to us and told us she didn't believe Nathan was autistic - she suggested we look into cerebral palsy. Sure enough a few weeks later, Nathan was diagnosed with mild cp. Prior to starting kindergarten, we had a psychological assessment done on Nathan which confirmed he was NOT autistic. His delay in speech was probably due to muscle control - or maybe he was just a late talker. Regardless he is a perfect 5 year old now - talking up a storm and only a very mild toe walk.

So... today the manager of IHP, told me the SLP suggested that Tyler was autistic - although she NEVER told me this herself. The manager said that is why they suggested PECS. I was pissed! How dare she tell me that, especially in the way she did! I think it was completely unprofessional. I called asking for help and more answers and she throws that at me. I told her Tyler is NOT autistic - nor was Nathan. I asked if her any of the SLP were even educated with Deaf/HOH children? Because the AVT I saw this morning (who is deaf herself) didn't see any signs of autism (nor do I). He is a very loving boy (frustrated, yes) but loving! He wants to communicate... he's trying.

I was just pissed... and I think the way she handled herself was very rude and mean. She said they are having a team meeting tomorrow to discuss Tyler - I can only imagine what is going to be said about us behind closed doors!

Granted I'm not naive... there may be other issues (neuropathy, auditory processing) and I want that checked. But it could also be a ha programming error, or maybe a need for a cochlear... I don't know! But autism... NO! Whenever a child doesn't speak on target - autism is suggested and it annoys me! Tyler is hoh and has no language. He wants to hear and he wants to communicate!

Now I just want to throw all his PECS in the garbage and concentrate even more on signs!
 
I would say that ALL this goes back to hearing. It is unlikely that he has other issues, every single thing that is going on with him (behavior and all) are DIRECTLY related to his hearing.

Auditory processing can not be tested in deaf children. It will always come out "off" because of the hearing loss. Plus, the definition of a processing disorder is processing issues with NORMAL hearing, therefore, a person with a hearing loss can not have it.
 
Your husband doesn't seem to be at your side in all this....that's really unfortunate.
 
I would say that ALL this goes back to hearing. It is unlikely that he has other issues, every single thing that is going on with him (behavior and all) are DIRECTLY related to his hearing.

Auditory processing can not be tested in deaf children. It will always come out "off" because of the hearing loss. Plus, the definition of a processing disorder is processing issues with NORMAL hearing, therefore, a person with a hearing loss can not have it.

You think so... all going back to his hearing? That is my gut feeling too! Which is why I put in the request to Sick Kids Cochlear - atleast if he's not a candidate maybe they can answer some of my questions.

I didn't know Auditory Processing cannot be tested in deaf children? So are you saying an auditory processing disorder for Tyler is impossible? I was under the assumption it was possible hoh or not.
 
You think so... all going back to his hearing? That is my gut feeling too! Which is why I put in the request to Sick Kids Cochlear - atleast if he's not a candidate maybe they can answer some of my questions.

I didn't know Auditory Processing cannot be tested in deaf children? So are you saying an auditory processing disorder for Tyler is impossible? I was under the assumption it was possible hoh or not.

Auditory processing disorder is defined as having difficulty understanding speech in spite of normal hearing- therefore if you do not have normal hearing, you can't have it. If he doesn't understand speech, it is because of his hearing loss.

Yes, everything you have ever talked about can be directly traced back to his hearing and language delay.

Auditory Processing:
Auditory Processing Disorder (APD), also known as (Central) Auditory Processing Disorder ((CAPD) is an umbrella term for a variety of disorders that affect the way the brain processes auditory information. It is not a sensory (inner ear) hearing impairment; individuals with APD have normal peripheral hearing ability. However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech
 
Your husband doesn't seem to be at your side in all this....that's really unfortunate.

No... he really doesn't come or get involved in any of it. It's all left up to me... but to be quite honest if he's not into it 100% I'd prefer to do it myself. I'm a control freak and I'm the one who does all of the researching. Not to mention, I know Tyler the best. The two of us have an incredible bond. Whenever he's frustrated and no one knows what he wants... he comes to me and I understand instantly.

It's unfortunate for my husband because I think he's missing out... but that's his choice.
 
Auditory processing disorder is defined as having difficulty understanding speech in spite of normal hearing- therefore if you do not have normal hearing, you can't have it. If he doesn't understand speech, it is because of his hearing loss.

Yes, everything you have ever talked about can be directly traced back to his hearing and language delay.

Wow, I had no idea... thank you for sharing! Maybe my gut is on to something! :giggle:
 
I'm just happy the Cochlear Unit is going to be reviewing Tyler's info tomorrow. I explained to them his age, lack of speech/language, and urgency for help. Let's hope they are willing to see him again.
 
Unlikely. He would have had a profound loss on his ABR but then his booth test would show a different loss. He would have had a loss but "present OEA's"

Oh really? Didn't know that either...
His loss has stayed consistent since the beginning ABR dignosis... moderate/severe in his left, and severe in his right.
 
I'm just happy the Cochlear Unit is going to be reviewing Tyler's info tomorrow. I explained to them his age, lack of speech/language, and urgency for help. Let's hope they are willing to see him again.

Ok, but you know that even with a CI, since he is so old, it is unlikely that he will become oral only. He is really old and really far behind. The most important thing is to get LANGUAGE into him, and since he isn't hearing well, and understanding, that needs to be signed language. If a child doesn't have fluent language by age 5, they will have long term cognitive and linguistic problems.
 
Ok, but you know that even with a CI, since he is so old, it is unlikely that he will become oral only. He is really old and really far behind. The most important thing is to get LANGUAGE into him, and since he isn't hearing well, and understanding, that needs to be signed language. If a child doesn't have fluent language by age 5, they will have long term cognitive and linguistic problems.

Tyler just turned 3... I know he's missed a lot... but I am hopeful with the amount of work I will put in, he will be okay.

I don't care if he signs and speaks... that's ultimately his choice! I want oral to be available to him though. What he does with it, is his choice! I'm not giving up signs... he's showing huge progress with them in the last month. I think it's important for Tyler to be able to access and use both signs/oral.
 
Do you think I am on the right path?

Is there anything else I should be doing or demanding for Tyler?

You guys have been my knowledge in all of this!
 
Oh here's another thing the manager of IHP suggested... along with autism...
dyspraxia

I can see how they may think dyspraxia... because he does have some of these tendancies... but I agree with Faire_Jour... I think ultimately it comes down to his hearing loss.
 
Rock on, girl, you are getting there.... Sometimes you have to "throw toys out of pram" to get what you/Tyler NEEDS. Keep up at it you will get somewhere.
 
For what it's worth ...

After YEARS of me (starting as a young grade school age child, until about 18years old) getting into heated discussions about my hearing and what I could or couldn't hear, verses could or couldn't UNDERSTAND with my various audies.
Basically, my audiograms have always indicated that I should be able to understand and react to sounds/speech at one level, but my "real life reactions" (including listening comfort levels, understanding speech etc) indicated that I either somehow had more hearing loss than my audiogram showed, or there was something else going on...what that was - they didn't initially know.
Eventually my Audies concluded that in addition to HL (profound +120db right, mild/mod flux left) I also must have APD (at least a mild form).
The problem is that, as others have mentioned CAPD/APD is effectively un-testable in those with hearing loss ... instead it's diagnosed by observation and once the person is old enough by the individual explaining what the world sounds like to them.


It wasn't until I actually got my first HA at 25ish years old (for the mild/mod side) that they were really 100% sure that I must have APD - in order for me to UNDERSTAND I have to be over-amplified.
Even though I can detect pure-tones (ie my AGram levels) at lower levels, in order to understand what is being said I need things about 10-15db minimum more amplified than my AGram indicates I "should".

In addition to this - while all Hoh/d/Deaf struggle to understand speech/sounds when there is background noise ... most of the time, I end up what I call "functionally deaf" in anything other than minimal background noise - especially if the voice I'm trying to un-scramble isn't one that I'm intimately familiar with (mu, dad, sister, etc).

I also have in interesting thing happen some times if there's a lot of noise, if I'm tired (especially when falling asleep) etc ... when listening to things, if my brain gets too overwhelmed instead of "focusing" on the sounds, it's almost like my brain locks the sounds out - I either only hear a "shhhhhh" like white noise, or it's like a loose connection - everything goes silent (the silent "loose connection" thing happens ALL the time when I'm starting to drift off to sleep).

In my case (and many others with APD/CAPD who I know) we are very visual learners - making learning and using ASL etc in ADDITION to English a HUGE advantage.

Although I was raised without the benefit of ASL as soon as I started learning it - I realized that it made FAR more sense to me - my brain naturally "got it" was able to understand it and learn THROUGH it in a way that I'd never been able to with English (or other spoken language). In fact once I was able to hold even a basic ASL conversation with my ASL teacher I started asking for help sorting out some of my English mis-understandings including how to properly use "than" verses" then etc ... things that my English teachers had tried to explain over and over again - but for some reason it wasn't until I SAW it in ASL that the rules of use made sense.

Learning ASL was a KEY to be being able to completely understand a number of factors regarding English (which I'm sure sounds odd ... but it's true!).

While I fully understand that you want Tyler to be able to function both orally and using sign ... my personal suggestion (as someone with HL & APD) would be for the moment surrounding him with as much visual language as possible, ie ASL (or SEE I/II if that's your choice) and then once he's got a good gripe on how language works expressively and receptively (ie is using ASL to express his needs, wants and understands what is being signed to him) then I would add back the English focus. continue to voice as much as you want just make sure that he's surrounded in signs for everything... you may be surprised at how quickly he jumps forward in language!

The reason for my suggestion is that he's at a critical age when that language centre in his brain is forming - when he's acquiring a "language base/foundation" that will allow all future language to make sense ... if he's struggling with English/spoken language but is absorbing Sign...then for the moment Sign (ASL) will be the most reliable way to ensure he has a solid language base forming. Once he's thriving using Signs and understands the POWER of language ... then English will "make sense" in a way that it may not right now for him. Once he understands that forming signs together creates the ability to communicate ideas - then the same "connection" can be made with English and communication :)

Of course as Tyler's parent - communication options are YOUR choice ... my intent isn't to do anything other than explain "from the inside out" (ie from someone with hearing loss & ASD) what my experiences have been & how acquiring language made "sense" for me.

The scary thing is that while there are a number of really GOOD "professionals" out there ... there are also a lot of BAD ones! My parents where given information that effectively bullied them into a single communication strategy (oral only) even though I ASKED to learn sign as well - however the "professionals" scared my parents (and many others) into believing that if children with HL learned sign we'd all stop talking ... which of course is completely untrue (in fact in many cases including my own ASL helped with English understanding, comprehension, grammar etc)


There's no way to reliably test for APD/CAPD especially in those with hearing loss ... however if you are able to track down a GOOD paediatric audiologist who specializes in speech and processing issues they may be able to help.
 
Great attitude to have!
I had to do the same sort of for myself when my mom didn't think there was really a huge concern with my hearing loss but I knew and felt otherwise. I've gone through 3 audis my 3rd being the one who knew what she was doing! She advocates for me writes letters to school when my teachers or school needs it or I feel they need it. I've had audis tell me that there is no way that my hearing loss seems as bad as it is because of my speech and an inconsistency with my OAE's which I've heard happens ALOT with OAE's but whatever. I had my 2nd audi not prescribe me a 2nd ha when I clearly needed it and my first audi never gave me ha's at all saying I could "get by" and to also ignore my severe/profound tinnitus ...ya..ok..

Anyway keep fighting because doctors (until I found mine) rarely will fight for YOU unless you push for a diagnosis or explanation of things. Not only did my current audi fight for me she's upgraded my hearing aids twice because she wants me to be in the best aids possible since my loss is progressive. She also is fighting with the cochlear team somewhat here as they denied me based on some personal issues with the head audi at my centre and his prior work with the cochlear team here...SO all in all...I say good for you for fighting for your son..with or without your husband..like I said a bond with a son is different than that of what your husband has with him. I hope you get to the bottom of things as well! :)
 
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