Tuesday, October 7, 2008

Siblings of Deaf/HOH Children

We are always very open with our two older hearing children in discussing their little bro's deaf world; always sitting down with them to discuss what it means to be deaf, how they can help Aiden, and how they are feeling.

I'll never forget the day we told them about Aiden being deaf. We ordered pizza. After dinner, we asked them if they knew what it meant to be deaf. Ryan, at age 11, knew it meant you couldn't hear, but didn't realize how hard it was to learn to speak as well. Kailyn, at age 7, had no clue. So we explained it, as simple as we could.

And the conversations, at different times, went on into teaching them how a deaf child can learn to hear and speak, cochlear implants, hearing aids, therapy, etc. We have always been very open with our kids about their brother. In fact, as soon as we started therapy, we got them involved, we wanted them to feel a part of it all, as if they were helping him just as much as we were. Yet, at the same time, we did not want to overwhelm them with Aiden, Aiden, Aiden.

I noticed, when Aiden was about 3 months old, that I was working with him and not spending as much time with my other two. I noticed, I was CONSTANTLY researching and reading everything I could about being deaf. I had to know it all NOW. I had to take a step back though and remember, my two older "hearing" kids needed me too. This was just as new to them as it was to me. We were all living in a new kinda world.

Soon after this defining moment, Ryan asked us some questions about Aiden.

"How much will Aiden's hearing aids cost?"
"How much are ALL OF THESE APPOINTMENTS Aiden has to go to?"
"How much are Aiden's CIs going to cost?"

All of these questions about money, and when he asked, he acted like it was a "no big deal, just a little curious" type of thing. But, I'm his mom. I knew better.

ONE, I did not want my oldest son to have any remorse towards his younger brother; and TWO, I learned when my dad was dying, that preteens often worry whether or not they are going to be taken care; especially when there is a big change in their life. Which, this was. To us all. We constantly reassure both of our kids that they will be taken care of, that we will never let anything happen to them, that we will do everything in our power to make sure they will be okay!

Then there's Kailyn. She's recently turned 8 and is just in love with her brother. What I found with her is to get her involved as much as possible! During the summer I brought her to therapy with me (I'd try to get Ryan to go, to no avail, but did not want to "make" him). Kailyn loves learning how to work with Aiden - it makes her feel important - and she does a wonderful job with him!

At one point, Mike was doing a (non-learning to listen) airplane sound, and Kailyn stopped and scolded him, "Dad, that is not the sound for the airplane! The airplane sound is ahhhhhh, ahhhhh."


Jodi, an absolutely amazing mom, is helping Hands & Voices complete a study on siblings of deaf/hoh kids. I asked Ryan & Kailyn these questions she's asking of you, and here are their responses:

Question 1 - What do you tell your friends about Aiden's deafness?
Ryan - "I don't. I don't think it's a big deal to announce it because it's just who he is."
Kailyn - "This is my baby brother, his name is Aiden and he has "earing" aids so he can hear. He keeps getting new ear molds and he has two hats so he can't grab his "earing" aids out."

Question 2 - What's the weirdest question you've ever been asked about Aiden being deaf?
Ryan - "My friends will ask if he's deaf, I tell them yep and that he's getting cochlear implants, which will help him hear, and they don't really say anything else."
Kailyn - "Friends ask me if he can hear with those things in his ears."

Question 3 - If you could change one think about your brother, or his deafness, what would it be?
Ryan - "His chubbiness." (I told him babies are supposed to be chubby) "Not like that fat little man." (I asked him if he'd change him being deaf) - "Yeah, I guess. I wish he could hear, but I know he will with cochlear implants. It doesn't bother me he's deaf."
Kailyn - "I like him the way he is, but not getting "earing" aids. They bug me with all that noise and I just don't want him to have them anymore. I wish he could hear without his "earing" aids."

I also asked them if there is anything about his deafness that bothers them:
Ryan - "It's just an inconvenience" (I got a little worried at this point and asked why) "because it's harder to mess with him and tell him I love him." (not so worried anymore) ; )
Kailyn was done at this point ...

If you'd like to help Jodi out with this survey, visit her here to learn details, or respond to these question in my comments, and I'll get them to her. Again, balance between hearing siblings and a deaf/hoh sibling is SO IMPORTANT!

Oh, and the last thing I wanted to mention was the recent sem
inar we went to. A local parent support group, along with the Dallas Callier Center, supported a seminar for hearing kids and their deaf/hoh siblings. Our kids got to meet other kids who had cochlear implants, simulate deafness, simulate different tests their deaf/hoh sibling experience, and most importantly, realize their deaf/hoh brother/sister was going to do GREAT!!

A 6 year old girl who had bilateral CI's came up to my husband (as he was holding Aiden) and asked him if Aiden was deaf. Mike said yes, and the little girl asked, "Well, where are his ears then?" which Mike explained since Aiden was sleeping, he didn't have them on. She proceeded to talk to him and we were both AMAZED! My kids were AMAZED! This was all of our first day, of many yet to come, around many kids with CI's, and their siblings. I'm still taken aback!

My kids ABSOLUTELY LOVED this experience! If you have any questions about this simulation, let me know!


Val said...

Love that she scolded dad!! You're hearing kids may end up being the best listeners in their class also from all this training!!

Ambulance Mommy said...

so interesting! What great questions Jodi put together. They are open, and yet direct at the same time! They made me think a lot too!

Laurie said...

Your kids are going to be Aiden's greatest teachers! A wonderful post. Enjoyed reading it!

Jodi Cutler Del Dottore said...

Tammy, incredible post! Please note...I am the messenger, this is all Hands & Voices. Thanks for your kind words and for going more in depth with the issues...really important to keep the hearing kids involved. Hugs, Jodi