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Thread: DS was dx with hearing loss and APD (m)

  1. #1
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    Default DS was dx with hearing loss and APD (m)

    I've posted very little here...sorry...but have mentioned ds in the past. He is finishing 2nd grade and recently turned 8. A complex eval at age nearly 5 (while in pre-k) turned up mild generalized hypotonia (he had issues with fine and gross motor skills), some attentional issues but negative for ADD (he had lots of paying attention issues) and he tested gifted with his IQ score (not something we sought or expected, though he fits many of the intense personality quirks to a "t" and we did realize how differently he thinks about everything...and now it's definitely clear to us).

    Anyway, K and 1st grade were fine except for some issues with getting his seated work done and not staying on task. This year has been a very different story with lots of issues with active listening, following oral instructions, etc. Teacher was having him flip his behavior card to "yellow" when he didn't follow instructions or failed to put his name on his paper. DS was very upset and stopped wanting to go to school. He compensates because he's bright. We have since had him tested for ADD twice more and it keeps coming back negative. In the meanwhile I keep having to go to bat for ds so he doesn't get penalized for things...this even before we knew what was wrong for sure. He spends a lot of energy that could be otherwise channelled differently and not to mention that his giftedness has been completely ignored by the school which has no TAG programming anyway...

    So finally we get a complete audiology exam and it showed mild conductive hearing loss and APD with some areas labelled as "severe" processing issues. Now on to the school for what we need from them, but now there is only a few days left so we will have to focus on next year. Most of what I am doing is trying to research everything and just accept that ds will have an area of struggle for the rest of his life but also focus on what we need to do to assist him. I feel a lot of anxiety since the track record so far hasn't been that great with the school constantly overwhelmed and me constantly asking asking and asking some more....guess what things just got more tricky so now it will be official and they can't just placate us. I am angry at the teacher for penalizing ds instead of trying to find out what's wrong. I am mostly sad for ds that he doesn't even know what it's like to hear normally and he's had to struggle over the years and we didn't realize it. My heart breaks for him but all we can do is try to continue to be his advocate.

    Oh and to add that apparantly the fact that he has the hearing loss is what is driving things, not the APD. If it had been "only " the APD it sounds like we would have been an issue. But I know that you can have hearing loss and APD but they are saying no...which isn't true since it doesn't matter if you amplify things he's still not always going to process it right. I have a lot to learn and it's only just begun.

    Thanks for listening,
    Karen

  2. #2
    betjet Guest

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    Hi Karen - first (BIG HUGS) from me to you and your DS. Sounds like he has been through a lot this year. Hopefully having this information will pave the wave for next year.

    Will he be getting hearing aids? My son was diagnosed with permanent hearing loss February 2009 (discovered initially through hearing test at school and then we had full work up done with audiologist). He got his hearing aids more than a year ago and there has been no looking back since!

    Does your son currently have an IEP in place? We just built the modifications for the hearing issues into my DS's current one. The school purchased an FM system (per audiologists written instructions) which is also incorporated into the IEP. The teacher wears a little microphone and DS has the little receivers on his hearing aids. Other modifications also include classroom seating and instructions for the teacher (i.e. looking at DS when speaking to him, etc)

    One thing the audiologist said to me that really hit home was this "Your son is focusing so much on listening that he is not using that energy for learning like the other children." While we still do have some focus issues the change has been HUGE this year.

    Hope this helps and good luck,
    Bettina

  3. #3
    chris s is offline INCIIDer - A Community Creator
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    Default ((But, it sounds like you are on the right track.))

    Hopefully, this will make a huge difference and you will be able to sort it out over the summer.
    Chris

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    NancyR is offline INCIIDer - A Community Creator
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    Default Bettina has some excellent advice in her post..

    Also, I recently went to this interesting workshop for kids with special needs. I met a lady who volunteers at our state's Parent to Parent program. (Interestingly her son has a similar condition as yours and Bet's, he's now an adult lives in Colorado, has a great job and is getting married!).

    They try to connect parents who have "been there done that" as mentors for parents who are just learning of their child's differences. It's a very cool concept, and it may give you some ideas, tons of hope!, and also a great set of networks for advocates, navigating the schools districts, etc... in your state. They have an organization in many states.

    Certainly something to look into, and it's free!!! It's also really, really nice to have another parent completely 100% understand what you are experiencing.

    Here's a link to the parent to parent of NYS, to give you an idea of the organization. Maybe you can google to find one in your state, or call the NYS one and see if they have a referral for you!!

    HUGS! Nancy

    http://www.parenttoparentnys.org/

    PS Found the profile of the woman who I met at the weekend workshop... maybe she can point you in the right direction. At the very least, as you can tell from her profile, she's a real character and a fiercely determined parent! I really enjoyed her!

    http://www.parenttoparentnys.org/Staff/ellenmchugh.htm
    Last edited by NancyR; 06-15-2010 at 12:41 PM.

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    Thanks so much for your support ladies...I really appreciate it!! I do often feel that no one understands, especially at the school. Since ds does well at school (compensates well), everyone thinks we should just chill out. But, as Bettina mentioned ds is using so much energy to just listen that I know he isn't able to focus on the things that excite his mind and tap his potential.

    I will def look into the links you sent Nancy...I so appreciate it!!

  6. #6
    trek is offline INCIIDer - A Community Creator
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    totally missed this yesterday sorry.

    Find out if anyone else in the school system has similar dx as your son. That will be a huge help. Maybe ask the school counselor if she can put that family or families in contact with you.

  7. #7
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    Karen,

    My DS (now an incoming 6th grader) was dx with APD by the school in K and then the dx was confirmed by an audiologist in 3rd grade. With the report in hand, I asked the school for a 504 plan. They agreed and the classroom accomindations and a field FM system have helped.

    If you haven't already, read the book, When the Brain Can't Hear by Teri Bellis.

    Also, if you want a copy of my draft 504 plan, let me know and I'll be happy to post it or email it to you.

    -Robin

  8. #8
    betjet Guest

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    Thank you Robin for the book suggestion...just put it on hold at my library.

  9. #9
    BriNJ is offline INCIIDer - A Community Creator
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    Karen,
    Im glad you have some answers for your son- Im a firm believer that information like that gives you a place to start. Maybe not where to go but at least how to start. Its def. a way to make sure he's not penalized for what he cannot control. And hopefully konwing that there is a problem, his teachers next year will step up and handle him better.

    As for gifted programming, well, we've had that discussion before. I dont expect that schools will get better at it...

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