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Mary Beth

Parent of young CI user asking for help

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I received this private mail message and am posting it as requested. @Hafiz

 

Hi Dear Mary Beth,

I wanted to post this message to the forum of parents of children with hearing loss but I could not fine the option how to post so I'm sending this message to you it would be great if you could kindly post this on the fourm.

Hi to everyone, I’m glad to join this forum. My name is Hafiz, I’m form Afghanistan probably all of you might know about Afghanistan.
I have a 4 years old son he had severe hearing loss; it has been 10 months that we have implanted a cochlear in his right Ear in Turkey. Now he can hear when we call his name and hear the sound of Door’s bell and phones but in- terms of learning words we do not see progress on him. As you might know the situation in Afghanistan, our country is in war, we do not have such kind of especial center or school for such kind of children; we just trying with him at home but he is not welling to say something. He is the only son which we have. we are very worry about him and his future. I just wanted to share this story with you people and seek your advice it would be great if you could kindly advise me what to do with him and how to proceed with him?

Many many thanks and best regards

Hafiz

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Thank you so much Dear Mary Beth for posting my message here, I'm looking forward to hearing form the member of forum.

 

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Hi @Hafiz

I posted your message above.

Congratulations on your son’s cochlear implant.  It is much more difficult when you live in an area that does not have services for young children with CIs.  But it is possible to do the necessary listening training at home.  We will help you the best we can as we are all wishing the very best for your son.

First though, since you had to go to Turkey for his implant is that where you must go for all of his MAPping appts?  It is very, very important that his CI is programmed correctly and in the beginning months that requires several appointments.  I met a child who had a CI for several years and was not making any listening progress.  It turned out that the child was not consistently wearing the CI and had not been back to the audiologist for a MAPping adjustment in quite awhile.  When the family returned to the audiologist for a MAPping, it was clear why the child was not developing listening and speaking skills.  The child could not hear speech correctly with the settings on the CI.  After that was adjusted, and listening training started things improved.

I hope you don’t mind me mentioning this.  It is important to make sure the CI settings are still correct for your son.  If they are not, the listening training will not be successful.

 

If your son is wearing his CI all waking hours and has had a recent MAPping appointment to ensure he has auditory access to all speech frequencies.....then you are all set to begin listening training at home.

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I will tag a few parents so they see your post too @Hafiz

@Colleen Powell

@Heather B

@suzcohen

 

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@MED-EL Moderator

Does Med-El have support teams in place that cover Afghanistan to help this family?

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Thank you very much, after implementation only once we visited for check up after three months of implementation, since Turkey is very faraway from Afghanistan and it cost a lot we could not revisit again. now adays we are planing to go for revisit.  

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No unfortunately MED-EL does not have services in Afghanistan It's why we have to go to Turkey.

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@Hafiz

I admire all the things you are doing to give your son the chance to hear.  I am sorry it is so far away and expensive to get to the audiologist.  I hope you can go soon because it is very important that the settings on your son’s CI are set correctly and in the early months this requires adjustments.  

Does your son have 1 CI?  Which processor is he using?  Does he hear anything at all in his other ear?  Does that ear have a hearing aid?

 

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He has only on CI in his right Ear, i do not know actually about it's processor. No he does not hear in his left Ear and he is not using hearing aid aswel

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Since your son is responding to his name being called and doorbells/phones ringing, he has awareness of sound.  That is step 1.  So that is great!

Now it is time to help him learn to listen to the differences in speech sounds.  We focus on listening.  And then give children the chance to copy what we say, which starts their speech journey.

I will explain the next step we take in English and you can adjust it as needed.

We would gather a few objects/toys and sit down with your son so that we are next to his implant side.  At first we work with only 2 toys that differ in how many parts they have in their name.  Ball (1 part) Choo-choo-train (3 parts).  We introduce each toy by holding it up and saying it’s name.  Your son can copy the names the best he can.  The two toys are set down in front of the child.  Then we say one of the names and the child indicates which one by picking up the toy, pointing to the toy, etc.  When the child is successful with 2 toys which differ by how many parts are in their names, we increase it to 3 toys that differ by how many parts are in their names.  Ball (1 part), airplane (2 parts), Choo-choo-train (3 parts).

You can expand this to any topic you wish.  At this level of listening it is important that the items differ in how many parts are in their names.

You can use food, colors, family members names, animals.......just be sure that the set of items you are working with at the time are all different by the number of parts in their names.

We want to keep things fun and successful.  Repeated success is what trains our brains to listen with CIs.  Short sessions.  Many times a day.

Also go on listening walks around your home and neighborhood if you can.  Listen to sounds and point out what is making the sound.

This is how you start teaching your son to listen with his CI.

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Some Med-El CI processor names are

Rondo 2

Sonnet

Rondo 

OPUS 2

TEMPO

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Many thanks.
I will do that practice 

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I second all the advice that Mary Beth has given you.  That's wonderful that you will be making another visit to Turkey to check on your son's speech processor's MAP.  As she mentioned, it often takes several sessions to ensure that your child can hear all the speech sounds.  I also like the targeted auditory practice that Mary Beth suggested.  Here is another idea for you as you go about your daily activities:  "Narrate the news."  Our auditory-verbal therapist suggested we "narrate the news," all day, every day.  What she meant by that was pointing out and commenting on everything in our child's world.  For example, as I carried him as a toddler around in my arms, I pointed out pictures on the wall, commenting on who and what was in the pictures, the colors in the pictures, the colors of the walls, the appliances in our kitchen, the furniture in the house, the items we saw when we traveled.  She explained that deaf children need to hear everything many more times than hearing children to associate meaning to them and to learn to hear them.  At first, I was really pointing out one word at a time.  Baby.  See the baby in the photo.  Blue.  Look at the blue shirt on the baby.  Baby.  

This "narrate the news" strategy can be used to explain to your child what you're doing as well.  I'm picking you up.  Up, up, UP!  I'm picking out a blue shirt for you to wear.  Let's put it on, over your head.  Let's put each arm into the sleeve....etc...   Or to let your child know what's happening next.  We're going to go buy food for dinner.  We will need to get our shopping bag.  Now, we need to find our shoes and put them.   And eventually to help them start planning and exploring Theory of Mind-what other people think.  We will be hungry tonight.  What food should we buy for dinner.  What food do you think mommy would like?  I think she might be hungry for X because it's her favorite food.  Shall we pick up some X for her?  Do you think that will make her happy?  

It can seem exhausting at first, but you get used to saying everything you are noticing, doing and thinking, but it's a great way for your son to learn vocabulary and eventually Theory of Mind.

I'm excited to hear that you will revisit your audiologist in Turkey and wish the best for you and your son on his listening journey!  Take Care,  Suzanne (mom to 16-year Max, bilateral CI recipient)

 

 

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@suzcohen

Thank you Suzanne!  Yup lots and lots of talking, exactly like Suzanne described.  Fast forward a bit and your child will be doing all of that talking!

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