Tuesday, October 12, 2010

Silent Gut Treatment

I’ve been having a tough time handling my kid lately. He handles me instead.

My little guy is 5 years old and was born profoundly deaf. He had cochlear implant surgery at ages 1 (right ear) and 2 (left ear) and has been doing really well with his hearing the past few years. He discovered the Wiggles and quickly became obsessed with performing their songs and dances. He was happy and so were we. He loved his hearing.

In June he quit wearing the Ci’s. Putting them on him turned into a battle of the wills that ended in trauma for all involved. We decided we really couldn’t (and shouldn’t) force the issue, so we have been waiting patiently for him to come around. Since he also has an autism diagnosis, we’re very sensitive to his sensory issues and have added those considerations to the pile of potential reasons why he is refusing to hear.

Now I’m faced with a dilemma that feels debilitating. Do we follow his lead because that is what feels like the only acceptable thing to do, knowing that he could end up never hearing again for the rest of his life? (The auditory nerve will atrophy over time and the process is well underway.) Or do we get tough and somehow force the issue, if it’s even possible? Most of the time I have no trouble following my gut on this type of stuff, but for once my gut has absolutely nothing to say.

We’re on a waiting list at our Children’s Hospital to work with behavioral experts, but so far no one can even tell me how long the waiting list is or when we might expect an appointment. It could be next month or it could be next year.

The good news is that he is doing really well in his new school and is using an interpreter like he’s been doing it all his life. (Luckily we have signed with him since birth) We’re absolutely blown away by the quality of this district’s programming and the dedication of the staff in his school. He is in a social communication classroom and they are totally equipped to deal with his communication challenges.

The question is:  Am I?

 

10 comments:

  1. What a terrifying dilemma you are facing. Thinking about the future, I know I'd try my hardest to get that CI in, but in the present, seeing my child miserable would make me do whatever it took to get him calm, including turning off the world. I bet a lot of autistic kids would love to have that power! We face so many challenges, and it is incredibly frustrating when no one is there to help. Is there another place you can get behavior therapy sooner? This seems like an urgent issue. Good luck to you.

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  2. Oh, Heather, I hear ya on the silent gut. I have had that on and off for the past few years. I've also had the wrong way gut on occasion so that leaves me thoroughly confused on what to do about my gut. I've found that when my gut goes silent and I don't know what to do that sometimes a conversation with Chris really helps me make a decision (he usually leaves these decisions up to me). And, sometimes I think a silent gut means that maybe the time isn't right to make a decision. Perhaps in a short period of time the decision will become clear? I sure hope so and will say a few prayers for your gut to start taking charge again!

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  3. What a beautifully clear piece about a topic that is not clear, at this time. Both of the previous commenters said what I would say. I want to add how grateful I am that your son has you as his parents - you who obviously care so much about his needs AND desires. Caring enough to listen to him, to your gut (silent or not) and to outside help, is love in action. I believe that you will find the way, though it may be revealed one day at a time. Blessings to you!

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  4. I loved your post and am so imoressed with your compassion and consideration
    No answers here either

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  5. What is most painful in Heather's situation is the fact that there seems to be excruciating pain when the CIs are turned on for Heather's child. No one can possibly know what he's feeling or hearing or experiencing in his little head. All the tests, doctors and technicians in the world can only make educated guesses. Maybe what your gut is telling you at this point is that you're doing the only thing you can: nothing. You can search for answers or fixes, but at this point there's nothing more you can do. Have faith or be tough or something. The fact that he's thriving as he is just now is actually something of a miracle.

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  6. What an excruciating mystery: as to why he'd want to stop hearing after an apparently pleasant beginning. I can't see forcing the issue, even at such a terrible loss. One thing I have always felt strongly about is that children need to have some autonomy from a young age to develope independence.... maybe mom and dad don't always know best maybe Ethan needs silence to cope with the world as he's experiencing it now. Oh, Heather, your gut may be silent right now- because for some reason he needs silence now. I'm pulling for you.

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  7. As caregiver to a child who is not capable of understanding the ramifications of his decisions at this moment it is your job, no matter how tough it is, to make this life changing decision for him. Would you let him cross a busy street alone because he insisted it was the acceptable thing to do? You need to address this immediately....I assure you he will not thank you when he is deaf at 16.

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  8. Um...I wonder if there is something between the all or nothing approach? I know little about Ci's. I think I've heard that even in adults they need to be tuned/adjusted, but I'm sure this is something you've considered. My experience comes more from the autism side, as that is my daughter's overall challenge. When we face circumstances like these where she is refusing something that we think she should be doing, we take baby steps. I'm not sure what this would look like for your son: perhaps wearing the Ci's for a small portion of the day, for some highly valued activity, like watching the Wiggles if he is still into that and/or with a small reward at the end of the time if he's worn them appropriately and with good behavior/regulation. Perhaps the time could be expanded gradually. Maybe it would help if it is always the same time of the day that he puts them on and takes them off - perhaps even using a visual timer or schedule so he knows when he should expect to have them on and when he can take them off. I think I'd be looking for ways to reincorporate the Ci's into his routine in a way that is positive and gives him some control, since that is usually the root of these power struggles.
    I do empathize with the silent gut issue. There is nothing worse than facing a crossroads as a parent and not being entirely sure which way to take your child by the hand and walk along. Rest assured that whatever choices you make in this situation you will be doing so in what you feel are his best interests, and that's really all we can ask of ourselves.

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  9. Hey "Autism Too", you might not want to walk out in front of traffic either, particularly if anyone I know is behind the wheel. Just sayin'.....

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  10. I have a CI myself. I faced this problem too... just one day, pretty out of the blue, things were too loud. It was disturbing and I wouldnt wear my CI, which made me sad because I do like hearing things, so possibly your son needs a quieter map. Make them turn the CIs maps DOWN. Way down. Then have him put them on. The anticipation of a sudden rush of sound can be pretty bad & it psyches me out sometimes so, I can definitely see why it'd freak your son out.

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