When I started this blog, I promised myself I would be honest about both the good and the bad times. This blog is about some of the bad times. I would appreciate support rather criticism.
So, where we last left off, Miss Kat has had her second CI activated and she HATES it, and doesn't want to have anything to do with it.
So, Thursday morning we wake up and start getting Miss Kat ready for school. We've explained to her that the longer she wears her implant, the better it will get. Also, her Nana promised her that if she wore her CI, she would take her to the mall to "Build A Bear" and let her pick out some clothes for her Zhu-Zhu pet. So, she wore it all day, and let us turn it up a tiny bit. But, after her shower, she AGAIN, flatly refused to put it back on. We fought, and eventually, she put it back on, but cried the entire rest of the night. Thursday night, she fell asleep with it on. (Which we liked, because then she is getting stimulation but not having to listen to the "beep beep")
When Miss Kat woke up Friday morning, she was MAD that her implant had come off during the night. (She had slept in our bed, so it stayed on for around two hours, but when she started rolling around too much, we just took it off.) She cried and told us that she had left it on so that when she woke up she wouldn't have to have that "reconnecting" moment in the morning. We felt terrible for her. Poor baby, she is trying so hard to get it to work for her...
So, Friday morning we all get up and start getting for school and work...and everything fell about. Miss Kat starting screaming again. She wouldn't put her CI, she was crying and shaking and SCREAMING at the top of her lungs. We tried reasoning, tried bribing, tried yelling, even tried forcing...it all fell apart.Miss Kat missed her bus, we all just lost it. We all cried and hugged and talked and hugged more.
We kept Miss Kat home from school Friday. She stayed home with Daddy and did a little of her summer work and just concentrated on being ok. We were extra gentle with her and let her just relax. She was even willing to watch a movie with just the second side on. I think she just needed a rest.
So, that brings us to the week-end. She has been feeling a lot better. She still struggles a little first thing in the morning, but it isn't really bad. (She was uncomfortable for the first two weeks or so with the first implant too.) We bought her a Hello Kitty backpack to bribe her into "putting it on in the morning without a fight" for two weeks.
Things are looking better, but for a few days things were very dark. We experienced a very trying time, and were very frustrated and scared. We are all still recovering and we have high hopes that things will continue to get better.
20 comments:
For support, you can reach out to the other parents. Who is speaking for your child? Many of us do know what it feels like to be forced to wear something that's painful and/or uncomfortable. For some, the memories never left them and they became resentful. Trust your child. She cried all night. If she is crying, something is very wrong. Don't respond to her crying by trying to force it against her will.
Since you want to hear support and nothing else from Deaf people who have been there long before Miss Kat, I won't be coming back. This is too distressful for me. Frankly I'm surprised. I expected that from certain mothers, but you, I wasn't expecting that. Best of luck to Miss Kat.
Oh dear. Are the maps too loud? Maybe they need to be turned down until she adjusts. Or is it just the adjustment and the beeps that she doesn't like no matter how soft it is?
My understanding from kids that I know who have CIs when they are first activated the mapping is set at a low level and the microphone only picks up sound from about an arms width. Gradually the volume is increased and the mapping is adjusted so that the microphone picks up more sound. Is that what they are doing for Kat now?
Could you try have quieter times of the day for her to wear and adjust to it and then gradually increase those times and diversify the activities that she's doing? ie: quiet time with books and soft music, then read-alouds or quiet games, etc.
I don't have tons of personal expertise with CIs. I hope things improve soon.
Meant to add - I do agree that forcing a child to wear an implant or a hearing aid is stressful and probably counterproductive. However, if she enjoyed the first CI and wanted the second CI you may want to explore if there is a root cause (such as the volume being set too loud). And for her to wear it, I suggest that you build it up slowly and allow her to tell you when she's had enough.
"She already has one CI, it works great, and she has been using a hearing aid in that ear nearly her entire life! How different must the signals be to her!"
Just a thot here-- are you saying before her second ear was implanted that she was using a hearing aid in it previously? If that was the case, it may be a prob of adaptation to sounds "sounding different"?
Or has she never worn a HA in the second ear that was recently implanted, even though her other ear was implanted? That's a different set of circumstances.
Can you clarify?
Thanks,
Ann_C
When I had my second CI turned on, I noticed that together everything sounded louder, so she might need both of them turned lower.
Rich
Sleeping with the CI on is beneficial?
As someone who has a CI (which has actually been broken for 5 years--the processor, not the implant itself), I know sometimes I really felt uncomfortable wearing it. I'd feel actual pain. I'm not saying that's the case here, just wondering if there's some discomfort.
Hope thing get better!
J. Parrish Lewis
jparrishlewis.com
I speak for my child Mishkazena. I know her and I love her.
Ann,
She wore a hearing aid in the ear that was just implant, right up until surgery day. She is just adjusting to the new signal. It is SO different from the hearing aid, so it takes time.
J. Parrish Louis,
She is fine once the CI is on. It is just the inital stimulation that bothers her. That is why we don't think that it is too loud or anything is wrong. Once it is on, she is fine.
She need another mapping. I don't care if it is too early. A mapping that would sound more like her hearing aids than a CI and go from there.
My CI processor broke twice. The first time it did, 4 years passed before I had it repaired. When I put it on, I felt a sharp pain moving through my head, and the processor wasn't even on. I'm sure you're right about it. I'm no expert on the need for mapping and all that.
Good luck!
I don't have a CI and never will, but it's clear to me that your daughter's CI needs some adjustment from the audiologist.
I need to be a bit blunt here - this blog will disturb many Deaf people. It certainly disturbs me a bit. The reason why it disturbs me and most likely many others is because if a child wears glasses, or a leg brace, or any other assistive device, and the child continuously throws a tantrum about it, complaining it hurts/is uncomfortable, then what do the parents do? They take the child to the doctor as soon as possible for adjustments or a replacement.
But this doesn't happen with children who have CIs. Why is that? You're coming here asking for support from *us* when really it's the doctors who can fix this situation? I honestly don't understand this logic. Can you please explain this to me?
With medical stuff, a good deal of preparation for the child and especially a sensitive audiologist can work things through.
The important thing is the child's trust. Don't let her get the idea that hearing is more important than her relationship with you or her sense of personal ownership over herself.
Backing off and having periods of rest was a good idea. Sometimes things have to be paced slower than usual in order not to accidentally create a mindset that will be difficult to change.
The beeping and wearing it all night were surprising to me. Why is this? The suggestion that the combined devices may come across as louder than usual makes sense. Also to be considered is why putting the new CI on is so objectionable. Pain should never be her experience.
Since CI's are still a new field, not everything the medical experts say will be the best advice. Listen to Miss Kat and be guided by her experience. Forcing anything that is painful or uncomfortable is not conductive to hearing or learning.
Be ready if in time Miss Kat decides to discard one or both CIs. It won't be the end of her potential, and all around are Deaf people who have succeeded without them or with only a little aiding.
Most importantly, you will still have the confidence and trust that you both have built up in the meantime. That goes a lot further.
Hi, it bugs me that you're receiving so much criticism and I was hoping I could shed some light being a late-implanted (after hearing use) CI user myself.
It is not uncommon (as I'm sure you know) that people have completely different initial activation experiences with each ear. Mine were completely different, and sometimes going bilateral can be more frustrating because it takes longer to reap the benefits (she won't be discovering nearly as many new sounds, but after she gets used to it and is hearing better, her hearing in noise will probably increase dramatically.) Going bilateral just requires more patience, period! The increase in sound you can hear can also be quite overwhelming, and I got very stressed out in the beginning.
As far as initially turning it on in the morning- yes, it can be painful. The things that help me are turning down the volume and sensitivity a bit prior to putting it on (although, I'm not sure if hers is already turned all the way down?) and then gradually increasing it, turning the processor on *before* attaching to my head so I can make these adjustments, and having complete quiet for the first couple of minutes after putting them on. Also, a lot of people prefer putting their first CI on first, since it masks the sound of the 2nd CI, which isn't yet so great. I just put mine on in whichever order I happen to pick them up in, since now they're pretty much equal in hearing performance.
It will get better!
Thank you so much Pinklam! Those are exactly the things we have seen and we are followiing all those tips!
She is frustrated because she assumed everything would sound great, like it does with the old one. It was a hard couple of days, but things are getting better.
Dianrez,
If she choose to throw away one or both CI's we are fine with that, but NOT a week after activation. She needs time to get used to it.
But, in reality, 90% of implnted people use their CI's whereas with hearing aids it is more like 40%. It is actually much less likely with a CI.
Jeeze .. I am always amazed at the number of non-CI, non-bi-lateral posting folks... (i.e. "I never had a CI and never will" ... yup, that's an even remark if I ever heard one).
When my 2nd CI was turned on, I was not nearly as happy with it as the first CI. That's because I had the 2nd CI a good 8 months after the first one, and I had already adjusted to it quite well. Even though I knew the 2nd one would take time to come up to speed, it's hard to ignore the reality of what you hear at first... it's a terrible mismatch between ears. And I can fully understand how Miss Kat, as a very young person, might react.
And, there is a "jolt" to just slapping on two CIs and powering up from zero sound to full sound. It's easier in a quite place, maybe in a closed bedroom, but even after nearly 1 year of being bi-lateral, I still get that jolt if I turn them on in a noisy place.
And I agree with PinkLAM .. it will get better. No doubt.
Thanks for your clarification that Miss Kat wore a hearing aid in that second ear right up before it was implanted. CI and HA have different 'sounds' to each mode, it will require some adaptation for Miss Kat's brain to resolve over time. However, because she did wear a HA in that ear before implantation, she will recognize sounds far better and more quickly with her CI than for someone who never wore HA's before implantation. Plus, her other ear is already implanted and doing the work of at least one ear able to make out what sounds are which.
I remember going from loop system sound to a hearing aid for the first time as a four-year old. The first emphasized speech or voices over any background noise. Didn't know things like air conditioning systems and air breezes even had noise. The HA included everything, both speech and background noise. It was a little overwhelming at first, but I came to love hearing the sound of rustling leaves from the trees outside my bedroom window as much as hearing my dad's voice.
It will take time and patience, but I do think Miss Kat will soon enjoy the benefit of "surround sound". Hang in there.
Ann_C
Sending *hugs*! The elementary school panel at JTC had a little guy who talked about the "first five minutes" thing- where sometimes everything is just too loud. He now has a timer that is set for five minutes, and if it is still too loud after the five minutes, he can take it off and try again in an hour. He said that having that visual timer ticking down makes waiting through that first five minutes of "loud" bearable. I thought I'd pass that along, since it stuck in my mind for some reason!
Sending all my positive thoughts in your direction, and I hope that the amazing Miss Kat is able to adjust to the bilateral implants very quickly!
I'm also very glad you're being honest- one day we might be in the same situation and it will be good to have a "heads-up" on various situations that might occur.
Hi A Deaf Pundit ! It's been a long time and hope you are well.
I did want to mention one thing, in response to your question "You're coming here asking for support from *us* when really it's the doctors who can fix this situation? I honestly don't understand this logic. Can you please explain this to me?"
Miss Kat's Parents are journaling their daughter's CI experiences on their blog, not coming to anyone asking for support. We don't necessarily know what the mapping schedule is (I know my daughter's was activation, wait a week, adjustment, wait 3 weeks, new map, etc. -- a very tight schedule of gradual adjustments at the start). And I think it's very brave to recount not just "it was a rocky adjustment at first, but now she LOVES it" but how they got there. And if it makes someone decide not to get a CI, that's good, because people need to know that even though we don't all experience this, the risks and the fact that it's possible to have days like those described i the very beginning.
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