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 He stopped hitting the kids in his class and was generally much more mellow but withdrawn.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.