Thursday, October 15, 2009

So, is it always guesswork?

Or are we just special like that? Last week Jaymes had yet another hearing test. For those of you who have not followed the never ending saga that is Jaymes' possible loss of hearing, I will give you a quick rundown. Hearing test, hearing test, hearing test, hearing test. None conclusive, because well, he's autistic! Big shocker there! More hearing tests, hearing tests, hearing tests. Sedated ABR test. Behaviors can't screw those up, because they're asleep. Results showed mild to moderate hearing loss. Didn't seem to match up to everyone's "real life" experiences with the little man. Another hearing test in the booth. Bad behavior. And finally, one more booth test. Sucess! Candy, bribery, and medication got us a good test. According to the fine ladies at the hospital, Mr. Jaymes has moderate hearing loss where high frequency sounds are concerned. But they weren't quite sure. But pretty sure. Or something like that. Mommy? Not sure. Speech therapist? Not sure. OT? Not sure. Nobody has a clue, except Jaymes, and he isn't going to spill it.

So Jaymes will be wearing hearing aids. Green ones, to be exact. He chose his colors. Always green, everything has to be green. Jaymes loves green. Maybe it makes him feel one with nature. You never know.

And now, my question to my fellow mommies, is this: Is it always a "maybe, maybe not?" where hearing is concerned? I guess I just cannot decide if we're doing this hearing aid thing because everyone is grasping at straws, trying to look like they're managing things, or if we're just adding another expensive electronic device that won't do a damn thing. Or worse, make things worse. I just don't know. The hearing thing is something I have never had to deal with, so letting me make decisions about it is worse than the blind leading the blind.

Do any of you have kids with autism and hearing aids? Or just hearing aids? How do you know if your little one needs them? How do you know if they're set too loud, or not loud enough? How do you keep them ON the kid?

I just have this little nagging feeling that this is a result of looking way too deeply into Jaymes ignorning of things that aren't interesting, and that I look like a moron for going along with it. Do I think Jaymes needs hearing aids? I don't know. He seems to hear me, but then everyone who talks to him does so loudly. So he DOES have functional hearing. However, what if the hearing aids can make that hearing which is just functional, into something that really develops his speech and helps him communicate more clearly? It's so hard. I guess I'm just wondering why it's always guesswork, and never an exact. I want to hear "Jaymes has hearing loss. This is how it is. We know for sure." or "Jaymes does not have hearing loss. We know this for sure." I'm sick of maybe, possibly, we're not sure. I want to make the right decisions for Jaymes, but I can't do that without understanding the nature of the problem.

That said, Jaymes is doing pretty well. He got off the bus yesterday in a great mood, just talking up a storm. Long, loud, very serious streams of language. "Mommy, mommy, like hot fire at the fair. Popcorn shrimp, chicken, lobster. Chicken tenders. Smash. Pepsi." Because he saw a blacksmith exhibit at the fair, and because we took him to Red Lobster with us last week for our anniversary dinner.

I have a really cool kid. The boy understands just how important the words "popcorn shrimp" truly are.


Karen said...

I'm a mom of three kiddos with hearing aids and I can tell you that I did the "are they or aren't they" dance when they were younger. My oldest had a profound hearing loss but you'd never know it because he was visual and responded all the time.

Autism makes it much tougher to separate the hearing loss from the spectrum since they can mimic each other.

Because you've had a sedated ABR-- that's a pretty valuable piece of info to have. You can also contact Gallaudet University Clerc Center-- they have info on kids with autism and hearing loss in their recent Odyssey mag. Also helpful to connect with other parents via Hands & Voices, AGBell and ASDC organizations to find families like yours.

Unfortunately, one of the only ways to know if hearing aids will make a difference is to try them. Some kids with autism and hearing loss can't handle hearing aids or implants because of sensitivity issues and for others it helps. Over time, as you learn more and experience more, your Mommy instincts will guide you.

Amber DBTD said...

Thanks for the info, Karen! Now, my question, on the sedated ABR, is this: could the ABR results be wrong because he had ear tubes in that were out of place and had to be pulled? He also had some fluid in one ear at the time of the test.That addded a whole other level of "is he?" to it! It's crazy! Jaymes Speech Therapist kind of looks at me like I'm insane when I mention the hearing aids, which leads me to think maybe he does not need them and I'm being a whackaloon.

Adelaide Dupont said...

I have had a hearing loss all my life, and my Papa and Grandmere have been getting them in later life. Papa, especially in the high frequency tones.

Fluid in the ears is no good, and neither is otitis media: some common causes and contributing factors to hearing loss.

This August past I checked out a good site:

Deaf Autism: about us

A lot of kids with sensory issues don't get the autism diagnosed until a later age, even as adults.

leah said...

These little kiddos with moderate losses are hard to figure out sometimes. Our little guy responds without his aids most of the time, and answers questions, etc. We do know that he misses the details of speech, though. Missing plurals, hearing a /d/ for a /g/ ("go" and "goat" come out as "doh" and "doat"). Trust that ABR- it isn't subjective and you have booth results and brainstem results to rely on.

There are several parents who have experience with both autism and hearing loss- one mom has a blog at She is also active on the learn2hear yahoo group, so she might have some advice for dealing with both situations (the yahoo group at is also wonderful).

I can tell you, we've had some variable results in the testing booth! Our little guy started off with a mild/moderate loss rising to normal (40dB going up to 20dB) and now has a moderately severe loss rising to mild (60dB rising to 35dB) in his better ear. Despite the results changing slightly from test to test, we do know that he needs hearing aids no matter what. We've also struggled with fluid issues, which can add significantly to Nolan's hearing loss. We have gotten several testing results with him in a nice and dry state, though, so we know his hearing loss is permanent.

Another way to check on his hearing status is to obtain OAE's (otoacoustic emissions)- absent OAE's mean that the cochlear hairs are damaged (permanent hearing loss). There is a nice little screening tool which can be used to detect OAE's, but he has to be fluid-free for that tool to work. Our audiologist ran ABR's and DPOAE's at the same time, so we were certain that the hearing loss was not from any fluid. Plus, bone conduction testing can also verify whether the loss is conductive or sensorineural (this is done during the behavioral booth test).

Goodness, sorry this got so long! I hope he adjusts to the hearing aids easily. Our little boy is two and it has been a challenge. We've tried the Hanna Andersson pilot caps (better for babies and young toddlers) to keep them in his ears, and have ear gear and critter clips to keep them from getting lost when he does pull them out.

Sending lots of electronic support!!

Amber DBTD said...

Thank you Leah! I guess the reason I've felt so iffy about is the way Jaymes' Speech and occupational therapists responded to the news that we'd be trying hearing aids. His school too. They kind of look at me like I'm an idiot. He does answer and seem to understand, but if it can be better... Then why not? I guess I just have great respect for the Speech and OT and hate feeling like they disagree, because I do feel I should trust them over some audiologists who we've met twice. Meh.

I'll check out those links, thanks so much!

leah said...

Amber, I will say that hearing loss is greatly misunderstood by many people- remember that the speech therapist and the occupational therapists are experts in their fields, but NOT in hearing loss. Kids with mild/moderate losses are tricky because they "seem to hear" and it makes it harder for others to realize what children are missing.

Hearing loss is such an invisible thing, and people can't really imagine what it is like. If you want to imagine blindness, you just have to close your eyes. But you can't turn off your ears- even when you plug your ears, you're only giving yourself about a 20dB loss. Which is still in the normal range!

Once your little guy gets set up with his hearing aids, you might want to explore adding a teacher of the deaf to his roster of "helpers." These teachers monitor the language development (not just speech, but LANGUAGE, which is entirely different) of hard of hearing or deaf children. HOH kids can have trouble with abstract concepts, social skills, etc (actually, many hoh kids share symptoms with autism and ADHD). His OT and SLP could coordinate with the TOD and make sure that he is getting the maximum benefit out of his hearing aids and therapies.

Right now, we only have a SLP for Nolan, but when he enters the school district we'll ask for a TOD to monitor his progress in school.

Christina said...

just a quick comment....i dont know if my daughter is autistic or not....she has a brain disorder and some other problems...but we did the hearing loss dance seems a lot of people have ! anyways the brain stem test is almost pretty accurate...i was told that it actually measures the brains response to certain noises and not the ears response....but again we went through the maybe, maybe not too....and we went with hearing aids and two years later she is talking up a storm !!! it was very hard at first to get her to wear them...also in the beginning i think they are set on one volume so you dont have to worry about that...but im not sure if thats the way it is for all kids...check with the audiologist!