Monday, March 22, 2010

Hearing / Implant Update

(I know this is blurry, be he never stops moving!)

There's no shortage of material regarding Ethan's world lately, but it has been hard to speak or write in clear sentences with the lack of sleep that continues to plague this house. We're back on clonidine, if that tells you anything. As tired as I feel, I want to provide an update on the hearing issues we've been through.

Regarding Ethan’s implants: We still have questions, but the great news is that he is again hearing and does not need to have surgery.

He’s not up to previous levels on the troublesome side (right side, first side to be implanted) and we still don’t have a complete picture of what is going on with that implant. This is because he is totally unpredictable at mapping sessions and has been fully cooperative only once out of 4 visits. We had to actually sedate him to learn that the ball joint (a ground electrode in the array) on the right side is not working. This is not uncommon and many people function well with one of these electrodes (there are 2 ground electrodes) missing, but we’re wondering if this is what is causing the strange reading they got on 5 other electrodes on the array. Ethan has had trouble in the past with this implant and had to have a few electrodes turned off even though the device passed the integrity test. After a few weeks of shorting out, those same electrodes mysteriously began working without fail. Maybe this problem will right itself with time as well.

Ethan spent about 2 months in total silence. It was pretty interesting to see how he changed in deafness, then see his response to hearing again. One would expect a child who has been hearing 3 out of their 4 years on the planet to be very disturbed by plunging into deafness for 8 weeks, but not Ethan. He really seemed not to notice or care. His behavior at school improved noticeably when he was totally deaf. He stopped hitting the kids in his class and was generally much more mellow but withdrawn. He also stopped verbalizing and dancing and wasn’t using sign language in nearly the frequency we expected or hoped. We know he has an enormous capacity for understanding sign language and the memory and ability to actually sign hundreds of words, but his hands were as quiet as his voice. I think this is autism. It impacts a child’s ability to express themselves in ANY language.

Once he began hearing again it was as if we saw a little bounce in his step. He became more engaged in his surroundings and immediately took to listening to his favorite music while singing (in his own way) along. He started trying to speak again and the signing has increased (marginally) as well. But so has the hitting at school.

It’s hard to find information on how deafness and autism interact since it’s such a rare dual diagnosis. Some of the research I’ve found suggests that this population is better off left in deafness, meaning no hearing aids, implants, or amplification of any sort. It makes sense when you think about the difficulties that some autistic people experience with sensory input - sound in particular. Luckily for Ethan he can take his processors off and live in silence if that is more comfortable. Right now that’s not happening, he’s happy to have his ears on. The fact that he’ll have some control over auditory input might turn out to be an advantage, so no regrets here.

If I regret anything, it’s the amount of time that I spend (especially as of late) worrying about him and stressing out over his diagnosis. It’s still sinking in and probably will be for years to come.


Kel said...

Glad to hear an update, Heather! I think often of you and Ethan, and am so relieved he doesn't need another surgery.

Aliki2006 said...

Glad for the update. I can understand how being in a deaf state could be safer and more comfortable for a child with autism--at least for now. But I think you're right--he has the choice to remove his devices, and absorb a silent state for some time, and this could help in the future. As kids with autism get older, they do (thank goodness) seem to develop techniques for getting along int he world. I used to despair about L. ever coping on his own with the things that upset him, but at nine years old he is able to make choices about how to "filter out" the world and how to control his responses to overload. These are critical skills to learn.

Hang in there...

Kyla said...

Whew! Sounds like there is a lot going on for you guys. We're just now diving back into therapy, these kids are always keeping us busy!

I think it is good that Ethan has both options and I'm glad that restoring his hearing has re-engaged him.

Kyla said...

PS: He just keeps getting cuter!

Kristina said...

You have been going through so much and it's good to see that even without sleep you are managing to keep it all in perspective. I tend to get better perspective when I get lots of sleep so I'd be in a tizzy if I was you right now :-)

I was thinking about this and was wondering if Ethan has the behavior issues if he is only wearing the known good CI (i.e., using only unilateral CI vs. bilateral) ? I wonder if any of it could be tied to the suspect side? Just a thought.

leah said...

The combination of autism and deafness is definitely territory that most people haven't tread. I did read an article somewhere that the incidence of autism is higher in deaf children... something like 1/50 rather than the 1/150 for the general population. I wish I could find that article again!

I am so glad you fought for his placement at his school- it is perfect for him, regardless of hearing status (if his CI breaks, he can still have access to his peers/education. You are such a good mom!

Mama Deb said...

Wow. Fascinating stuff to hear about how different his behaviors were when he was unable to hear. Mixed blessings, I'm sure.
I am thinking of your family as you continue to seek out answers. Hopefully both of our families will find a little relief for all and a comfort zone to ride out for at least a little while!!

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Here It Comes said...

You know, Emmi's behavior was at it's worst when the left implant was shorting out. I noted a change in her behavior (aggression was a BIG part of it) during that time. Have you done some experimenting to see how he is with just the one side on? Also, we notice that Emmi signs more with her processors on! Seems counter productive!

Now, on another note. My oldest, Jill, has Sensory Integration Disorder, possible ADHD, sleep disturbances, etc. We had her on clonidine for a while. She started on Strattera for some of the ADHD symptoms (which I debate is actually ADHD, but that is another story!), and she suddenly started sleeping again. We stopped the clonodine, and she is sleeping better than she ever did on the clonodine. I can't say the Strattera has done much of anything else other than regulate sleep, but I am sleeping for the first time in years thanks to her sleeping!!

Mom to Toes said...

Hi, Heather! I was thinking of you today, so I popped in.

Ethan is such a gorgeous boy. I am so glad he doesn't need the surgery.

You guys will be in my thoughts!