Please help.. without insults... please.

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This is a daycare child I have asked about several times before.

I am not willing to terminate care over this.. so please don't suggest that. It's not a money issue either. They pay for only one of their kids, the other one is free. They can't afford anything more.

The almost two year old is deaf. She has cochlear implants. She hates them.

She SCREAMS. ALL. THE. TIME. I have been doing daycare since the early 80s, and this is not the normal toddler scream. It HAS to be louder than is healthy for others to have to hear constantly. I wish I had a decible thing to see just how loud it is.

The audiologist thinks it's a discipline problem. I think it's both discipline, AND the ears. Imagine listening to an ipod all day, and it's playing the most irritating music you have ever heard, but you have to keep listening to it. SO.. you'd probably be irritable.

But. Discipline is an issue too. She's (according to them) MUCH worse at home. So, they lock her in her bedroom. (tempting)

The deaf preschool sends her home early. (to me) because they genuinely think she's upset about preschool. But, she loves preschool... she just screams all the time.

She also will claw at anything she can get her hands on. A child, a picture, a painting hanging on the wall. She will take her arm and clear the entire table of art supplies.. then scream.

She is either VERY happy.. or VERY angry. There is no inbetween.

I NEED helpful ideas that I can work on over the summer. I have fewer kids this summer, and we are going to try to work on this together. (the kids and I)

All I really want right now is a way to stop the screaming. Mostly just the angry screaming. The happy screams, I will tackle later.. I don't really care about that.

But, not anything that's punishing... just something to help her deal with this without screaming. Her parents are using a squirt bottle of water. (can't do that here LOL) It's not working.

Please... ANY idea. No matter how weird you think it sounds. (except squirt bottles)

ETA.. She was NOTHING like this a year ago before her surgery. This has all been since September.

[mommy2abigail]

A few suggestions...don't know if you've tried this or if they will even be feasible...


Could she be in pain?
Does she talk/communicate in any other way? Signs?
Is it an option to just take the implants out? If she has only been doing this since her surgery, and still hasn't adjusted, maybe it would be better to simply take them out for now? Try again in a few years?
How much can YOU (and her parents) communicate with her? Does she understand stuff? At what age level?
What have you tried so far?


I'm thinking, when my dd was almost two, if she got loud, I'd say "Ow that hurts my ears, please talk softer" and model that voice for her. If she continued to scream, I'd ask her to do it in her room/garage/outside/ect. That could be her 'screaming place'. Would something like this work? It would take a TON of work on your part, and with having other kids there it may not be possible, but every. single. time. she screams, take her to her spot. It could be a comfy corner idea...pillow or beanbag, some soft toys or books, ect. This may help when she is frustrated with something...

Um, yeah, Who gave her parents the water squirter idea?!?! That is terribly demeaning to a child!

[philomom]

I would insist she go back to the doctors. No child should be doing this the whole time they are awake.

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Originally Posted by mommy2abigail

Could she be in pain?
Does she talk/communicate in any other way? Signs?
Is it an option to just take the implants out? If she has only been doing this since her surgery, and still hasn't adjusted, maybe it would be better to simply take them out for now? Try again in a few years?
How much can YOU (and her parents) communicate with her? Does she understand stuff? At what age level?
What have you tried so far?

Thanks.

She communicates very well. No signing, but she can let us know what she wants, and can understand most simple things. Like "Throw that in the trash" or "Get your blankie". But, not things like "that hurts my ears". But perhaps if we all cover our ears while we say that she would understand better.

They can't be taken out. But, the external "ears" can be taken or left off for a while. She is supposed to wear them as much as possible though. I don't think they cause her pain.. but, I think the noise bothers her... I even wonder if what WE think she's hearing isn't at all what she's hearing. SHe may be hearing something really annoying. Like feedback.. I have no idea.

She tested at 24 months age level when she was 18 months. So, she's ahead of the game a little.

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Originally Posted by philomom

I would insist she go back to the doctors. No child should be doing this the whole time they are awake.

she has regular visits. Twice a month. The doctors think it's just a discipline problem. (or a habit)

[Evan&Anna's_Mom]

Wow. I'm not sure I could take that. Hats of to you for even being willing to try.

I guess my first question is -- are the parents at all open to a second medical opinion? It seems like the audiologist dismissing it as a "discipline issue" is a major cop-out. I would really want to get a seond opinion on that one.

Next, would it be possible to form a "team" approach with you, the parents and the preschool. I assume that you aren't an expert on deafness issues and that the preschool might have a better idea of what can be done given that it seems like an issue involving the implants.

Just brainstorming here because this is really outside of anything I've every had to deal with, but some thoughts that might trigger actually do-able ideas for you or others with more experience.

Are there things that trigger this? You said it was all the time, but if you watch closely, are there triggers? I would think that finding a way to prevent this would be ideal, and maybe IDing the trigger would make that possible. Or at least would let you know when you needed to be "ready" to deal with the issue.

Can you make the overall noise level in your home quieter? Lots of soft surfaces, no TV/music, lots of emphasis for everyone on quiet voices? Two advantages here -- maybe she is reacting to overall volume in her environment and maybe if the rest of the world were quieter it would be easier to deal with her noise. And, of course, its always nice to be able to address everyone for quiet rather than always singling out this child.

Maybe she just needs to make noise? Maybe singing or music-making or some other type of "controlled" noise time would be helpful in reducing the random screaming?

My child has learned a song about inside and outside voices at K this year -- I think they sing it frequently as a way to "practice" each type of voice. Can you start something similar -- where you have her scream on cue and then practice talking as well?

If you must react rather than eliminate it proactively, I would think the only idea would be to remove her from the group for everyone's sake. Given that you can't split yourself in two, do you have an assistant would can take her into another room when she starts to scream? A nice sound-proofed one? If you don't have an assistant, would the parents be able to supply an aid? Oh wait, you said there were financial constraints, right? OK, are they eligible for any time of home health care or something that could provide someone to work more intently with her?

For that matter, can they get some other type of therapy for her through some sort of program?

If its anger related, could you teach her to (silently) punch a pillow instead?

Like I said, I'm not sure if any of these will help and it seems a real problem that the medical side of this group isn't stepping up to the plate to help.

[LynnS6]

I would do several things:

1. INSIST that the parents take her back to the audiologist to test the implant with the amplification. Is the audiologist part of the 2x monthly visits? I would also INSIST that she have an eval by a developmental pediatrician. It's possible that there's more going on here. Calling it a 'behavior' problem doesn't really address why she's doing it. Is early intervention involved? Can they suggest something?

2. Is she working with a speech language pathologist? If not she should be. If so, what does the SLP say? It sounds like she needs another way to communicate, and I'd strongly consider sign.

3. Incorporate an intense sensory diet over the summer. The books "Sensational Kids" and "The Out of Sync Child Has Fun" would be where I start. She most likely has vestibular issues from the underlying issue, the surgery and the recovery.

4. Provide her with a small, enclosed space (like a small play tent) where she can go when things get overwhelming.

5. As someone else suggested, provide her with a 'screaming spot' (a padded room ?) and direct her there when she starts.

[Kristin0105]

I just have a second for a quick response but is it an issue that she does not have a better way to express her frustration, anger whatever and she needs help learning to express herself?

If the implant is really bothering her is there a way to have it adjusted down? So there is less background noise. Is it possible for you to get written permission to talk with her audiologist? Disconnect it during the day and see if it helps? Okay, that might not be acceptable but sure would be tempting.

Can you use the squirt bottle on the parents? I'm sorry but that's horrid. I can't beleive a parent would think that was a good idea and I would suggest to them that it will only contribute to the problem. Good luck. Poor child I really feel sorry for her.

[tbone_kneegrabber]

Take off her CI's.


I have worked with deaf children and adults both with and without CI's and many of the adults and older children will tell you how much they HATE them. The "sound" they hear is not like the sound we hear. It takes years to figure out the right setting to make the noises bearable and sensical. Many people who had CI's as children do not wear them once they have choice in the matter.

Try giving her set time everyday where she doesn't have to wear them, to give her brain a break. See if it helps. If is does help, then the preschool, her slp, her audiologist etc need to know that she doesn't do as much screaming without her ci's.

also, i dunno the family's feeling about sign language (a lot of hearing parents of deaf children are told incredible lies about sign language from medical professionals) but she probably has no way to communicate with you in an easy way. She can't tell you, "my head hurts from this sound" or "i like screaming it makes me feel in control of the sound." etc

working with deaf children who did not have access to sign language in their homes I have seen some things that people consider major "behavioral" or "discipline" problems that are really the result of not having the language to communicate with people. knowing what you want or need and having no one who understands you.

i dunno if that helps at all.

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Originally Posted by LynnS6

3. Incorporate an intense sensory diet over the summer. The books "Sensational Kids" and "The Out of Sync Child Has Fun" would be where I start. She most likely has vestibular issues from the underlying issue, the surgery and the recovery.

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I just ordered those two books off of Amazon. Thank you for the reccomendations. I'm looking forward to reading them.

Originally Posted by tbone_kneegrabber

Take off her CI's.


I have worked with deaf children and adults both with and without CI's and many of the adults and older children will tell you how much they HATE them. The "sound" they hear is not like the sound we hear. It takes years to figure out the right setting to make the noises bearable and sensical. Many people who had CI's as children do not wear them once they have choice in the matter.

Try giving her set time everyday where she doesn't have to wear them, to give her brain a break. See if it helps. If is does help, then the preschool, her slp, her audiologist etc need to know that she doesn't do as much screaming without her ci's.

also, i dunno the family's feeling about sign language (a lot of hearing parents of deaf children are told incredible lies about sign language from medical professionals) but she probably has no way to communicate with you in an easy way. She can't tell you, "my head hurts from this sound" or "i like screaming it makes me feel in control of the sound." etc

working with deaf children who did not have access to sign language in their homes I have seen some things that people consider major "behavioral" or "discipline" problems that are really the result of not having the language to communicate with people. knowing what you want or need and having no one who understands you.

i dunno if that helps at all.

Bless you! That's what I was hoping to hear. I just really think she hates them. SHe was the happiest baby until the surgery.

We started teaching her sign language, but the parents and the audiologists decided to have her use only spoken language. So, the only signs she remembers are "sit down and eat" (she LOVES to eat) and "no". The rest have been forgotten. Too bad too, because the kids and I all learned sign language.

[raelize]

i thinkyou should also see about getting the CI turned off/taken out. that story just breaks my heart.

[BellinghamCrunchie]

I agree with LynnS6 (as usual )

I like the idea of some vestibular/sensory regulation issues that might have come up as a result of messing around with her auditory system (or that she might just have regardless).

A doorway swing system might help her, something like ten minutes every hour as part of her routine (not contingent on screaming or not screaming). Also, it might help to have a sensory station set up (e.g. big tank of dried beans, water, or dry oats, playdoh, goop, etc) that you can direct her to when the screaming starts and see if she can refocus on the sensory activity.

It might be helpful to have a special "scream time" where that's what she does, with one-on-one support from you or another adult. Maybe have a tape recorder and she can make screams, then play them back... having fun with making loud screams and quiet screams and long screams and short screams. Anything that helps her gets some feedback on modulating the screaming as well as allowing a time for her to scream (maybe she needs to scream, for whatever unknown reason).

Her parents prefer verbal language over sign but you could still post pictures of daily activities, moods, wants, and needs in a location she can access easily, and use the pictures when talking to her (e.g. pointing to "mad" face when she seems mad) in hopes of giving her some other language tools.

In a school setting where you are unable to control the parents' behavior and the parents' values (e.g. diet modification, alternate language, complementary language, giving her a break from the CI's, etc.) you might consider resorting to positive behavioral techniques. I'm thinking that a DRO might be effective if you have the means of implementing it (Differential Reinforcement of Other behavior). A DRO is basically when you reinforce ANY behavior other than screaming. So, for example, if she screams 59 minutes out of 60, you would start by giving her one small tidbit of something she likes every 60 consecutive seconds she goes without screaming. Most of us are inherently opposed to edible reinforcers but if it comes down to having exhausted all other options, it might be better than continuing in a miserable situation (and using positive reinforcers are definitely preferable to punitive ones like spraying water). DROs are very intensive to start and require a lot of your constant attention, but they can be remarkably effective, and get easier as the time period without screaming increases. Some edibles could be: a piece of plain popcorn, a cheerio, a raisin, M&Ms, a mixture. Extend the length of the required time in which she is not screaming as she gets better at it. DROs are probably the best non-punitive behavioral tool for high-frequency behaviors. Their downside is that they don't teach the child what to do instead of the problematic behavior; they just seek to eliminate the behavior. But combined with a sensory program and opportunities to complement language skills, she might do very well.

[NatureMommy]

Originally Posted by nextcommercial

SHe was the happiest baby until the surgery.

So, the screaming started when she got the implants? I have a few questions: Were both ears implanted? How long has she had the implants? How long have the implants been turned on?

It has been many years since I worked with deaf children. When I left the field the procedure was to implant only one side at a time. Wait 2 - 4 months before even activating the implant and then build up the stimulation intensity over an entire year.

I wonder if she is over-whelmed and over-stimulated. How is her behavior with out the transmitter turned on?

I think a team meeting needs to be held involving all professional and para-professionals involved in this child's care: preschool, audiologist, speech pathologist, pediatrician, psychologist, parents and child care providers.

[BMG580]

I thought cochlear implants could be switched on and off? Have they even tried giving her a break or seeing if there is something audibly wrong with her implants? Surely there is a way to test that.

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Originally Posted by NatureMommy

So, the screaming started when she got the implants? I have a few questions: Were both ears implanted? How long has she had the implants? How long have the implants been turned on?

.

She had them both done at the same time. The surgery was in July, they weren't turned on until The end of August. The screaming started after they were turned on. She was still almost her old self before they were turned on, but had severe stranger anxiety for about six months. (understandably)

They turn them up a little every few months. I don't remember what level she is at right now. Ironically, right after they turn them up, the screaming stops for about a week, then goes back to screaming.

She came in late today without her ears on, and I didn't put them on.. I gave her some lunch, and she's pretty happy right now. (I'm not holding my breath or anything.) She also had a power nap in the car, so she may just be feeling pretty perky.

[Laggie]

They LOCK HER IN HER ROOM? And squirt her with water...

Wow. I would scream too. Although, I wonder if the doctors are calling it a "discipline problem" because the child's parents don't seem to have any parenting skills? Maybe that's too harsh, but how is a deaf child supposed to learn to communicate when she is locked in her room or being squirted with water?

I'm sorry that I don't have anything constructive to say but your story is very disturbing. I hope things get better over the summer. You are obviously a very patient and loving mama and I'm glad this little one has you to help her.

[The4OfUs]

I've read your other posts, and I have to be hoenst, I just feel so badly for this little girl (not because of anything you're doing). I think you've gotten good advice, and I hope hope hope that the parents will agree with just trying turning off the amplifiers to see if it makes a difference in her behavior. Maybe you could present it in a "let's try it for a couple weeks" type of deal; things probably can't get a lot worse than they are right now (well, I mean, sure they COULD), but if they get a lot better in a few weeks with them off her, my God they HAVE to realize that it's a problem for her.

I hope you can find a way to work with the parents and doctors.

[phathui5]

Is she getting early intervention services other than the doctors? Here the Infants and Toddlers program will do a full evalutation with different kinds of therapists for free and then set a child up for services if they need them. The therapists can even come see her at daycare if they need to.

[Whistler]

Oh, this absolutely breaks my heart. The fact that they aren't teaching her ASL, that her implants seem to be bothering her.... all of it. I hope some things change soon for this little girl.

[Treasuremapper]

I applaud you for caring for this little girl. It seems you are on the right track, that the implants are bothering her. If they do not do something about it, then you need to do something about it. It sounds like you are the only person willing to help, so I suggest you require that you have access to the childs medical records as a condition of your care for the child, and that you then act as the childs advocate by seeing what is going on with the implants. I think she is in pain, and there is nothing you are going to be able to do from a GD standpoint until the underlying problem causing the disturbance is healed.