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!