Tuesday, May 17, 2011

How do I make it better for her?

I thought I would have years ahead of me to plan the right words, think it through and come up with a plan but my baby girl had her first breakdown Sunday night.  Sure I have seen the signs over the past few months and I have dealt with them little by little.  She would take her hearing aids out and say they "hurt" her, tell me she could hear ok without them in, ask me how long she will have to wear them for and not want to go to school.  Sunday night she let it all out.  Saying how much she hated her hearing aids, how difficult it is to hear from far away and how she doesn't like being different. 

During her IEP I had her evaluated for Anxiety due to her stomach issues and wanting to take her aids out.  I can't tell if the stomach issues are a concern or stress.  I've had new earmold impressions to make sure they are not the issue.  She goes in regularly for her audiological appointments.  I talk to her all the time about her aids and how important they are.  She uses her Phonak FM System and does really well with it during class but her hearing loss will ALWAYS be there.  It will always be a factor in her life.  I simply don't know how to make it better for her.

What. Do. I. Do?

3 comments:

  1. Valerie, there may be a psychological issue with Cait; and there can also be a physical problem with the hearing aid fitting, which would not surprise me one bit.

    Let's start with teasing and/or bullying -- It is very common -- Almost universal -- among hearing impaired kiddies & teenagers, as their peers can be very cruel. In fact, it needs to be aggressively addressed now and henceforth, as kids will sometimes stop wearing their hearing aids due to this, especially in junior high & high school. In a couple extreme cases, two girls I know attempted suicide in high school because of the teasing & bullying; and another friend was bullied by her peers in her Audiology Doctorate program.

    Sometimes, the teasing & bullying is due to the ear hardware we wear: Being up front about it with decorations (like with the Tube Riders I gave Cait at the Walk for Hearing); but then also, she may do better to go "stealth" with clear, lightly matte earmolds & neutral hearing aids.

    Another cause of the teasing is because her speech is not flawless: She needs to be not just hitting the marks, but exceeding them so that her speech is at least as good as her peers, if not better. Yes, it's painstaking, and little kids regard it as torture; but she will be grateful to you when she's older for pushing her.

    My suggestion would be to have her see a psychologist who specializes in dealing with HI kids: Check with Clarke &/or Gally for a couple referrals.

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    Also, if you remember when Conor was born, I said to make SURE his stapedial reflex thresholds were measured; and the hearing aid Maximum Power Output (MPO) was set below these levels. The DSL-5 ("Desired Stimulation Level") fitting "prescriptions" she used don't take this into account; and this could explain why it hurts her ears, as it may be too damn loud.

    Another issue may be that of earmold venting and design: Kids almost invariably get a shell or skeleton silicone earmold with no venting, or at most a pressure relief vent, even for a moderate hearing loss -- Earmolds no hearing aid dispenser would fit to an adult, as an adult would reject it.

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    Are you coming to the HLAA Convention 2011 in DC June 16-19? We have lots of families that come; and if you don't attend any workshops the admission to the Expo hall is free. Come on down for the day on Saturday the 18th -- It's at the Hyatt Crystal City, across the street from Reagan National & down the block from the Pentagon.

    Dan Schwartz
    Editor, The Hearing Blog

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  2. I think you're already doing the right things to support her emotionally. She needs to wear them even if she hates them, and it is okay to hate it and have a breakdown sometimes. I am sorry that its causing her so much anxiety. Sofie gets that way about her food allergies, feeling different and hating that she is somehow abnormal. Hugs for you both.

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  3. I'm sorry Cait is having a hard time. I wish there was something I could do to make her feel better too. It's rare that I even remember that she is hearing impaired.

    When she came to our daisy meeting she sat between two girls who asked about her hearing aids. They were very curious and I thought it was sweet that the conversation was lighthearted and friendly. The other girls were not teasing, they thought the hearing aids was neat. However, I can see how Cait would grow tired of talking about them.

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