Thursday, February 23

Anyone have experience with this?

We're running in to some more closed doors as far as finding out if/what is going on with our oldest and newest child, Aleksa.  There are tons of cues throughout EVERY day that suggest that she isn't hearing well.  She won't respond when in a different room, even just 10 feet away from us, unless it is said VERY LOUDLY to her... and then we're still not sure she's hearing WHAT we're saying, just is taking a cue that us yelling to her with her name attached (she does respond well to her name) means that she should do something.  She also can look at us while we tell her something that we know she understands, like "take your shoes off" and sometimes will do it (generally this is when it's inside of her realm of a routine), but just as often will sit and look at us with a confused look on her face.  We can say it over and over, but until we LOOK at her shoes, sign "shoes off" or point to her shoes, something that physically signals what we're asking, she doesn't appear to hear what we're saying.

It's strange, because some days she may do exceptionally well with minimal amounts of physical signing, pointing, and direct hands-on prompting necessary.  Other days, it seems she doesn't hear anything all day long.  It's also difficult because she has VERY GOOD adaptive behavior.  Imagine this scenario: You're 5 years old and someone drives you to a new "place to live" and drops you off with 80 other children all of whom are older than you (you used to be the oldest in your small group of kids you lived with) and many are as old as your previous caretakers.  You quickly find that someone will physically punish you for not following "the crowd" and doing what everyone else is doing.  So you figure out pretty quickly that when you see everyone going to do something that you, too, should go do it.  You learn that when someone gives you a direction, even one you don't understand at all, that you look around and try to figure out what they're referring to, and if you can do something-- anything-- you try it.  This was Aleksa's reality in the institution.  You conform, figure out the routines, and if someone directs something at you, you try to figure out what they meant.

In new situations, though Aleksa will also frequently try to get away with whatever she can... she tends to try to figure out what wo't get her in trouble.  She WANTS to understand.  She LIKES to help.  She will, when in a mood to do it, TRY to please at all cost.  However she will also look at us and be obviously searching to try to figure out what we're saying... and be unable to even when it is a very simple direction that she knows how to do and was able to do a day or two prior...

So... everything points to hearing.  Problem being, She has had an OAE that she failed.  Then she failed the Tympanogram in an "unusual pattern" and the ENT asked if we wanted to try tubes in her ears.  We said YES, if that could be the issue, let's take care of it by all means.  She got tubes.  Nothing has improved (and that was a month ago...).  She also had an ABR done while she was sedated.  The ABR showed "normal to low-normal hearing with her left being a little worse than her right".  The doctor said that's fine, shouldn't be any big deal, and come back again in 6 weeks for another OAE and exam.  We saw him this morning.

I asked his opinion of what he thinks her response, or lack of response more appropriately, was due to.  I will share his answer, then I'll share what he appeared to be saying :).  He said that it's probably just auditory processing and they can't test that in a nonverbal child, so there's nothing else we can do.  What he's implied in the past and appeared to be saying this time as well was this: Your child is mentally retarded and can't process words because of it.  She's not going to learn to, so why are you wasting your time?

I understand auditory processing.  One of my siblings has issues with it and has had to overcome a lot to be able to do well in some areas, but as he went through school with this "learning disability" as it's termed, he also was in the gifted student program.  Auditory processing has little to do with cognition or ability to think.  It is a real and diagnosed processing difficulty that occurs in people of ALL levels of intelligence.

I'm not trying to pretend that Aleksa isn't severely delayed.  I'll be the first to tell you that she is very delayed, and that she had no one really talk TO her or have expectations of her on any regular basis for 8 years of her life.  She has not only a lot of baggage from past hurts and neglect, etc, but she also has a true lack of exposure.  Could that be the reasoning?

Here's where we're struggling right now... we KNOW that Aleksa is very physically capable. She can dress and undress, toilet independently, eat with different utensils (maybe not super clean, but still...) and can "follow the crowd" really well when she's being properly motivated and understands that there is an authority person there.  She knows how to play appropriately with some toys and does great with routines such as putting her clothes and night time diaper away in the trash and hamper in the morning, or coming to the table and waiting to pray, helping other kids to do simple tasks like  putting toys away or going up or down a step (even though she herself isn't very stable most of the time...).  We know that there are physical limitations that are just from a lack of exposure for so long, and cognitive and "higher order thinking" that are affected both by Ds and by her past.  There shouldn't be significant language limitations at this point (14 months home) however we still use very BASIC terms with her when making requests so that we're sure that we are using words and terms that she understands, and very short sentences, etc.

We don't want to "pass this off" as just a behavior, an attention thing (sometimes it may be, but sometimes she is distraught at not getting it and really is TRYING to understand), or a lack of ability to comprehend unless we have looked at all the other possible causes that it could be.  As far as auditory processing goes, she would have to have SEVERE issues with auditory processing to be having as much difficulty as she is with all of this!  APD generally has ways to 'train' the brain to understand, and is often a first and last thing dropped, that sort of thing, not two or three words that someone simply cannot hear/understand/something...

Since it all is acting just like she can't hear... but her hearing tests appear to say that she CAN... what else could the problem be?  She's so frustrated.  As are we!  She only mimics sounds/2 syllable rhythms (mama, bah bah (for bye bye), etc) when she has SEEN our face, or knows the social appropriateness since we've taught her (say "hi", say "bye" while having her look at our mouth and try to make the words).  SOMETIMES she will mimic a 'random' sound.  Not often.

There's so much more... but that's all for now.  Would be very interested to hear what others have experienced in a similar matter... Thanks!

17 comments:

  1. Have you used PECS with her?

    Kara

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  2. Processing gap, Meredith, and apraxia. That's my diagnosis.

    Good luck, I know it is frustrating.

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  3. Is it a tone that she reacts to? Lera acts as though you are speaking a different language if you don't sound smiley. She will keep repeating what you say as if she has no clue what you asking for. She has been home almost 4 years and if I sound stern or exasperated or even tired, she sometimes turns into my little parrot. She looks extremely stressed when she does this.

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  4. I never thought of auditory processing disorder... and I don't know anything about it.

    Lucas is much like this. When he hears just fine, follows the directions, etc one day; then the next he has no clue. His hearing is good, had tubes put in, very dirty ears. He also seems to really like to be naughty sometimes (which I'm hoping is the age thing); but he also really likes to help with things too. How much is hearing, how much is age? He is good with routines and signs, but not so much with just words. He's been home 8 months now, so half the time Aleksa has been. They thought he was deaf, so he was never really talked to or made to follow directions either (at a much younger age, and a totally different setting). From what I see, I think it's him just not wanting to focus because he never had to. He has a hard time focusing on any task; getting better, but struggles.

    I guess I would see if you could get into another audiologist for her. Since she tested low on the ABR, are they willing to do hearing aides for her, at least on the left? Lucas tested in the normal range with the ABR. With the booth testing also in the normal range, definitely favoring the right side. They said, if he shows definite signs continually to have less than normal hearing on the left, they will try him with a hearing aide. Sorry, I'm not much help; it's just what we have/are experiencing.

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  5. Did she have an ABR BEFORE the tubes were placed? Do the tubes immediately correct a fluid issue, so if the ABR was done after the tubes were placed her ABR would be better than immediatly before? I know fluid can come and go, so that is possible for why hearing appears better sometimes than others. But, if her hearing was poorer than "normal to low normal" all these months before getting tubes, and especially for years and years before in her native country, her brain has really only had one month to acclimate to better hearing. When Charlie was a baby he was moderately hearing impaired. He wore hearing aids from age 5 months to 15 months when it was determined his hearing had become normal. One explanation was his auditory system needed more time to develop, so I guess sometimes brains need time to get with the program. Maybe it will take time. But honestly, since I am no expert and you already know a thing or more about auditory processing, I would say you need to find an audiologist who does not have prejudice against developmentally delayed people. And just so you know, if case you would ever want them, we still have Charlie's old hearing aids in a drawer... I'd mail them to you today if they could help (they are very fancy digital ones for people with mild to moderate hearing loss). Oh wait... have you talked with Leah Spring, Angela's mom? She has been helpful to us, and many others, in this area.
    Kim

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  6. How about Receptive Language Disorder? My son was diagnosed with it in Dec.He is nine and has been home eight years. He has trouble understanding what we are saying to him when not in routine or if it's something new to him. He can only process one or two chucks of info at a time. His hearing also tested fine.He was test twice by a speech and language teacher at school(once in preschool and again this school year) and it wasn't found. We took him to a children's hospital for testing and that's were he was diagnosed. He now has launguage therapy. Lisa S

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  7. I am going to throw out the possiblity of some type of apraxia. I am somewhat familiar, but really haven't worked with kiddos as a teacher in a couple of years, but my gut is just wondering...

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  8. What are your options for educating her as if she was hard of hearing/deaf?

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  9. Do you notice a difference in her ability to follow directions when in a quiet environment versus extra background noise? We have an issue with Emily--who does not have hearing loss, does have tubes, and has a cleft palate--that she cannot process information when there is a lot of background noise. It is NOT auditory processing disorder. It has to do with her trying to pay attention to too many things at once! When there is little to no background noise, she has no trouble hearing and following directions. As the background level increases or there are more distractions, she has a hard time "listening" to what is being directed at her, even if she is looking at me when I am talking! Audiology was able to verify this by decreasing the signal-to-noise ratio when they did her last hearing test. With little background noise, she can hear just fine. But with increased background noise with the same signals at the same level, she starts trying to listen to everything and starts missing the actual information (signal) being conveyed. I think this is because of the lack of auditory stimulation she received early on in life, and I think she just wants to know what is going on everywhere. I wonder if Aleksa has a similar issue since she learned she had to pay attention to what was going on or get in trouble, so now she tries to listen to everything happening at once.

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  10. My son was a premie, spent 8 yrs in the orphanage, but doesn't have Ds. He has language processing issues. Not exactly CAPD;its both expressive and receptive issues. Sometimes he seems perfectly normal. Others you can see the confusion as his brain just spins trying to makes sense of what was said. He zones out sometimes, I think from exhaustion of working so hard to keep up. He still prefers to watch cartoons (lots of physical humor) to other TV shows because it is too hard to follow the dialogue. He now takes medication for ADD and it helps a lot! I think it speeds up his brain enough so he can process better and helps with focus.

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  11. I have an auditory processing disorder, and while I have perfect hearing per se (I have had it tested) I can't tell you how often I have to have someone repeat themselves (sometimes multiple times) because my brain cannot process what the person has said. Sometimes my brain will figure out what the person was saying (often 30-60 seconds later) but by that point I will have missed the next several sentences that they said. It is much worse if there is any background noise. I also often subconsciously end up tuning out all the noise (talking) around me because it takes a lot of work and focus for me to actually make my brain figure out and follow what people are saying. I too use a lot of non-verbal cues to figure out what people are saying. It seems like Aleksa may be having some of these same problems, which makes me think processing disorder. Does Aleksa have any visual processing difficulties? Often people with an auditory processing disorder will have difficulties with visual processing as well (and vice versa).

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  12. I have an auditory processing disorder. My mom told me that when I was little, I would not always respond to my name. One thing that made my processing worse was my diet, I went gluten free and that helped a lot.

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  13. My son has auditory processing disorder, and it actually has nothing to do with cognitive ability. He has numerous other issues as well, but by far, the most limiting one is the auditory processing problem. If he is calm and in a calm or very familiar environment, he can usually understand what is said (as long as it is familiar)and respond appropriately with only a little extra time needed. however, if there is any (and I mean ANY) distraction (the wond blowing hard outside, the cat meowing, a car pulling into the driveway, the presence of another person in the house, etc...) he can not process anything without at least 5-6 repetitions and usually needs a visual cue before he gets even half of what I am saying. "Put your coat on, its time to go" can be an impossible thing for him to comprehend some days, and he will know that he is being asked to do something, but he might run in his room and grab a pair of socks instead of putting his coat on. Or he will pick up a toy and go put it away, or he will put his mittens on and start heading out the door...literally. His brain just can not catch what it was supposed to do, so it kind of scrambles, and he tries so hard to figure out what he is supposed to be doing. He will be 9 years old next month, and he has been my son for 6 years through adoption. I have two kids with a variety of special needs, and I think by far the most frustrating for him and for me is the auditory processing disorder. I don't know of any treatment that can help. I do know that extreme patience, and finding what visual and auditory cues work is important. As he is getting older, he is learnign to train himself to listen for buzz words like ...coat... so that at least he has a general idea. though if I ask him to hang his coat up, he may just process "coat"and he might put it on and go outside. Short sentences (less than 5 words if posible) and only one step of a process at a time seem to be the best way for us to approach it with my son. Luckily he is a very strong reader, and I can write things down for him, which reduced stress considerably. Oh, and often he appears to have not heard things. We have had him tested extensively, and his physical hearing is fine. but in essence, depending on what is going on in his thoughts or around him, he is for all intents and purposes deaf because his brain can not process what it hears. I suppose it is like the equivalent of corticol blindness, where the phsyical eyes are fine, but the brain can not process visual stimuli (or only sometimes can). I know this does not help in what you can do for her, but I wanted to let you know you are not alone, and that this is a very frustrating problem to be dealing with. Find what buzz words work for her, and use them as often as possible so that her brain can train itself to process them. I pray for patience for you and for Aleska.

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  14. Have you considered Attention Deficit Disorder? I have no experience with DS, but both a sibling and myself (even as an adult) have ADD. Neither of us have the 'hyperactive' part, so it was not diagnosed for a long time. A child with ADD can literally just zone out, particularly when they are engaged in something else. You could be talking right to their face and they would not even process that there was sound at all. The blank stares make sense as well. I will sometimes have to ask someone to repeat something they said, even though I was looking at them and knew they were speaking to me, because I was not fully engaged. Hope that helps!

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  15. I know this sounds crazy, but can she see? When my son (adopted at age 1 with a variety of health issues, not DS) didn't start talking until after age 2 we took him to get his hearing tested. They said his hearing was normal but suggested we start speech therapy. After our therapy evaluation but before starting therapy we found out that he had terrible astigmatism. We got him glasses and within days he started speaking and his hearing seemed to improve. It was almost like he couldn't understand how to speak without being able to see how people's mouths moved when they spoke. We noticed that he seemed to hear better when he wore his glasses as well.

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  16. This is a really late response but i've just started getting back to your blog *blush* hopefully you can update how Aleksa is doing? If you haven't found a solution yet, i would reiterate a couple of things that Kim and Courtney said above. First, when my son went for his ABR it said he had low hearing on the left, but then we were told that the results were probably innacurate since 90% of the kids who get the test have tubes and my son didn't (which led to okay, why the heck did we waste the time/money for this?!)... anyway so Option 1 would be repeat ABR now that she has tubes.
    My son also has general sensory integration disorder so I find all of those sensory techniques are crucial to get him to focus. We have since found he has normal hearing, but he can't seem to hear/respond to a noise in the midst of other noises. He also loves or ignores loud noises that would bother other kids, such as a dog barking, lawnmower, etc. He has always had little reaction to regular sounds like me shouting his name, or he won't turn at the sound of a bell etc... that said, if i open a bag of potato chips from across the room where he can't see me, he will whip his head around in half a second :P (I'm really not kidding)... so you could try the potato chip test with her. It sounds a lot more accurate and less expensive than an ABR.

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