A new path

[drewellwood]

Hello All

 

Well my 4 year old daughter has just lost her hearing.  On July 1st she came down with meningitis wihich put in the hospital for 10 days and caused profound hearing loss in both ears.  We are now at the point where we are waiting to for her to have an MIR to check the condition of the nerves.  Needless to say we are in new waters.  Our daughter can speak and tell us what she wants, however we are finding it difficult expalining things to her.  So my question is we asume her nerves are in good shape and she will recieve her implants, but can anyone suggest how we communicate to her over the next 3 months?  We are trying to sign with her but are having mixed results.  She can read and write some basic words but not enough.  The suggestion to use pictures was given to us by our social worker but this is not effective.  Any other suggestions would be welcomed.

[Adam]

Drew,

First I want to welcome you to hearpeers. I have 2 implants which I recieved 2 years ago. I am 45 now and grew up hearing.

Our second son was very late in developing speech. His hearing is fine he had some other issues.

We actually went the route of sign language at first and it worked very well. It was quite aggrivating at first in trying to teach him becuase he was so young but he finally got it. You can keep trying with the sign language or use social stories. the pictures to let them know whats coming up. There are many out there so I am sure you can find some that are descriptive enough so your child will understand. My son now 15 does not go to the speech thereapist anymore but I can ask her for some options if youd like. Also my audiologist does pediatric as well. I will touch base with her to see what she can come up with.

Any ideas when the MRI is going to happen? We look forward to getting to know you and please feel free to ask as many questions as you can think of.

 

Adam

[drewellwood]

Thanks for the reply Adam.  It's all very new to us and we are trying our best to keep our daughter comfortable.  The bacterial meningitis really hit her hard.  She can walk but is very unsteady.  We are waiting on the MRI so it could happen anytime.  She has been given urgent status.  As for the sign language it's problematic due to the fact that the school year and summer holidays are affecting support for learning sign in a proper setting.  Our daughter sees me as her play pal and doesn't want to watch the videos with us.  She will need the stucture of a class room and a proper teacher for her to start getting the idea.  We will keep trying.  The waiting is the hardest part of all.

[Adam]

Drew,

Getting our son to sit still for more than 30 seconds was a chore. We used flash cards as well. this really helped when we had somebody watch him. we laminated about 30 of the important ones and kept them together.

communication right now is a big issue mainly getting her attention if she is not in arms reach. go to the nearest light switch and turn it on an off once or twice. This will get her attention and she will look around. I you are not near a light switch give one or two hard stomps on the floor. again she will feel the vibrations and look.

If she is a music lover, one way to let her still enjoy it to an extent is to use a balloon. turn the music up in the room, blow up a balloon and let her hold it. you will be able to feel the vibrations through the balloon. it is very sensitive so if she knows the song, she will recognize it pretty quickly. If you have speakers you can actually lay one of the speakers face down on the floor. she will get the same effect.

 

All of this has got to be scary for you. I had borderline severe loss in one ear so with hearing aids I did well. the other ear I could get no sound from. over the course of about a month it all went away. I'm sure it goes without saying it has rocked your world. try to take some comfort in the fact that there are options out there.

[Eagle]

Hi Drew, Welcome to the forum.

 

I am on my lunch break, so I will write this quick. I had meningitis when I was 1 year old. I lost my hearing in both my ear, except the left ear was able to hear with a hearing aid. 29 years later I had a CI implant, due to a sudden hearing loss. I started out in deaf school early at about age 3 for about 4 years then went to hearing school after that. So just wondering if you had contacted the Canadian hearing society (CHS) in London. They have a lot of information that they could help you with. Sorry to hear about your daughter and try using hand signal, like pointing at things and a lot of face gesture.

[hadron]

Drew,

 

There is a Yahoo Groups listserv for parents with children who are getting or have received cochlear implants.

URL is: http://groups.yahoo.com/group/cicircle

 

Below is a brief description.

The CI Circle is a discussion forum originally intended for parents of children with cochlear implants and for parents looking for information about cochlear implants. Over the years, others have joined the list from around the world. Besides parents, members include adults who are deaf/hoh, extended family members, professionals,cochlear implant manufacturers. The forum is primarily for parents of children with implants or looking at getting an implant. Example discussion threads are educational placements, candidacy/insurance issues for children and parenting issues with a focus on children with cochlear implants.

 

Once you join it, you will interact with parents of children with cochlear implants. Hopefully they can tell you how they communicated with their children before they received their cochlear implants.

 

Good Luck.