Friday, October 3, 2008

Six Month Old CI Baby and his Hearing Siblings

Aiden's Mom Tammy writes a blog that chronicles her journey with six month old Aiden:
OUR JOURNEY
Our precious baby boy, Aiden, was diagnosed with profound hearing loss in both ears; he was born deaf. This site is to help me journal my feelings, keep family and friends updated on our son's journey, but more than anything, I hope our story can help ease another family's worries as so many other families have eased mine. Another chapter in our life opens ... this is our journey to and beyond cochlear implants ... our journey to let Aiden hear.

This was her letter to me regarding hearing siblings of deaf children:

Jodi:
Okay ... I sat down with my munchkins, and here's their answers to the questions (Ryan is my very laid back 12 y.o. & Kailyn is my "oh so dramatic" 8 y.o.):

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 (we talk about all this often):

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 ...

I have to share too, the one thing Ryan was constantly worried about in the beginning was our finances. How much are the HAs, how much are the CIs, how much are all of his appts? This is part of what I'm going to talk about in my write up on my blog, because I learned that preteens worry if they're going to be taken care of. At first we thought Ryan was just curious, but after talking more and more about it, found out he was actually scared we were going to run out of money!

And now...
*Meet Aiden!!*

20 comments:

Naomi said...

great post and how gorgeous is Aiden - he has the most beautiful eyes!

Anonymous said...

I am deaf myself. I do not need cochlear implants. You son is a beautiful baby. He was born Deaf. Why dont you let him be Deaf. What he needs from you is American Sign Language. The world has lot to offer to him not just sounds. What he needs is viusal language. It is not about you. It is about Aiden. I am sadden to hear that he got CI just to hear sounds for all that risk and not letting him be himself as a Deaf baby. Thus, he got it, I would like you to communicate with him in his "sounds" which is visual language. I understand your choice of CI however, I kinda felt that he has no choice to have it or not. I think it'll be best for you to communicate with him in sign language and I will guarantee you that you and your child Aiden will be happy. If you force him to listen and speak, he could be frustrated and unhappy. You have two worlds now, hearing and Deaf accept it! Like you'll have to accept the fact that he is Deaf and will always be DEAF! I am Deaf and proud of it. I am a teacher for the Deaf. I received my BA in Biology and Secondary Education and Masters of Art in Teaching ASL/English Bilingual Deaf education. I am Deaf and still functional without any "sounds" that the world has to offer me. Please think for your son not for yourself. :)

Anonymous said...

You're lucky to have such a very beautiful and HEALTHY baby.

However, you looked at deafness as a tragedy, and you were praying for a miracle, that is, a CI.

I respect your decision for getting him a CI, but really, Aidan himself is a MIRACLE. Don't take anything else for granted.

- Jen

Naomi said...

Jen, in Tammy's piece she said exactly that, she was praying for a miracle and then realised she already had her miracle - Aiden.

Not to Jen but the other anonymous, you say you are Deaf and proud of it which is great, but why the posting as anonymous, why not put a name to your post as Jen did? "If you force him to listen and speak, he could be frustrated and unhappy." yeah or he could be really happy and love to listen as many children who are born deaf do. Equally there are some children who don't learn sign language as readily as people think they should and equally are frustrated and unhappy. Every child is different, there is no one size fits all approach.

Val said...

Aiden is just a little butterball! And hey, my son was born w/a Syndrome that unfortunately leaves him w/few adult teeth under his babies. He has a loose tooth and as he ages, the others will soon follow. I have no intentions of leaving him as is. There is technology that can provide him with a mouth full of teeth, just like his family so I intend on using that technology, just as I did when he was born w/out sound. I want him to enjoy apples, I want him to enjoy his cheesburgers, so yes, he likely will have a surgery to correct his many jaw/teeth issues. Thanks for sharing this slideshow, he's beautiful.

Abbie said...

I had to sit here and chuckle at the dialog because Ryan at 12 years old, is responding in such a typical male way. :)

It is a great thing she was able to sit down with her hearing children and talk to them about it.

Anonymous said...

Naomi, I wish to say I am anonymous and that is up to me. As you said, "he could be really happy and love to listen as many children who are born deaf do. Equally there are some children who don't learn sign language as readily as people think they should and equally are frustrated and unhappy. Every child is different, there is no one size fits all approach."

Let me ask an quesiton, how do you know, you are not Aiden after all, you cannot speak for Aiden. He will decide for himself whether he is happy as he gets older and make choices for himself.

And I totally agree with Jen, "I respect your decision for getting him a CI, but really, Aidan himself is a MIRACLE. Don't take anything else for granted".

-ANONYMOUS!

Jodi Cutler Del Dottore said...

HI All! Abbie, welcome back, I missed you *smile*
Anon:
This...I understand your choice of CI however, I kinda felt that he has no choice to have it or not. I think it'll be best for you to communicate with him in sign language and I will guarantee you that you and your child Aiden will be happy.
And Jen, this:I respect your decision for getting him a CI,
...overwhelms me.
Does anyone realize how much progress we've made in changing attitudes vs. cis?
Such comprehension was unthinkable at the beginning.
I'm so pleased, lol, Hugs to all, Jodi

Naomi said...

Anonymous, no-one can speak on Aiden's behalf, however parents make decisions on their child's behalf every day. Other individuals or other parents may not agree with those choices.

Anonymous said...

Dear Anonymous, I agree with Namoi... it's called "parenting" and making decisions for their young children is what parents do. Not even with all your education will you truly appreciate that until you become a parent yourself. Regardless of a parents’ choice, it's the parents' attitudes and family bonding that determines the happiness of the children, not the actual choice. How old is Aiden now? Why not hold your discrimination until after he grows up - who know what the family has planned. ASL and CIs can coexist; in fact, ASL and Oral communication can and does coexist!
- Barbara

tammy said...

WOW! I'm a little taken aback, as Aiden's mom, right now. Let me first say, thank you to everyone for sharing their opinion - isn't it great to live in a democracy where this is allowed? Where freedom of choice is allowed? I try very hard to not place judgement, it's not my job.

Anon. - I think it's wonderful you don't have cochlear implants, if that's what you've chosen! I respect that decision and would love to hear your stories on what it's like to be Deaf. I can only imagine and would love to walk in Aiden's shoes EVERYDAY, just to KNOW, just to have some clue. I can never take away Aiden's deafness, he is who he is, and I wouldn't change him for the life of me. But I do have the opportunity to provide my baby to hear, and as his parents, it's what we choose to do; he can't make this choice, he's six months old! I provide my daughter glasses to help her see and my son medication to help him breathe. I am so very thankful for the great minds who invented such wonderful technologies to help us along in the world today! You are right, Aiden does not have that choice RIGHT NOW whether he gets a CI or not, but neither does my daughter to wear glasses. It is my right, as his parent, to choose this for him. Aiden can choose once he's older, to not wear his CI. But think of the opposite. Think of me not providing him that choice for later on in life. Think of him being mad at me for letting that opportune time pass for him not to have the chance to learn to hear and speak. At least the day will come where he does have a choice.

Jen - You are so right - I am one lucky person to have such a beautiful and HEALTHY little boy. I've said that myself, since day one. Especially after we confirmed him being deaf. In fact, I always felt guilty grieving for his hearing loss, which, grieving for this, by the way, is very natural. Aiden has two hearing parents with no experience WHAT-SO-EVER to the Deaf world. How could we not be upset?! We were terrified when we found out about Aiden's deafness. Who isn't scared of the unknown? I never looked at it as a TRAGEDY though, never thought my world was crumbling down. Hell, what you don't know is I had just buried my 55 yr old father 3 mths earlier after taking care of him for 2 years with dementia ... so for you to say I take things for granted?!?! You don't know me or my life, or what I've been through, so this struck me hard, very hard. I had a healthy beautiful boy with a lot of spunk, and no matter what, I felt blessed! Did I pray for a miracle -you bet. I prayed everyday that he could hear, that the dr's were wrong. But when they weren't, we were ready. I read and I researched and I still learn something new about the deaf world everyday! In fact, 6mths later, I am helping other families with this. I am starting a support group, to let other moms know, IT'S OKAY, everything is going to be okay, no matter what route you take! I take nothing in my life for granted. NOTHING! I live day by day and thank God EVERYDAY for all that I have!!

Val, Jodi & Naomi, Thank you for your continued support. It is mom's like you who have helped me in a way I hope to help others one day.

Abbie - You are right ... Ryan is your typical male, at 12! I have to say though, as much as he tries not to be, he's still such a mama's boy and I eat it up every chance I get!!!

Jodi Cutler Del Dottore said...

Tammy...beautiful. Love, Jodi

Anonymous said...

Tammy,

I deeply apologize for what I said in the previous message about not taking anything for granted. Please accept my apology.

Aiden is a very beautiful baby... he's the luckiest boy in the world to have you as his mother because of your incredible support and love for Aiden!! :-)

- Jen

Anonymous said...

Hello, you may see "anonyous said" but I do not want to sign up on google/blogger, rarely use those google/blogger so that why I send anonyous, am silentredwolf, profoundly Deaf, wear two hearing aid, not CI, no point to use that for several reasons. Your son is beautiful baby. Ya know God created your son and and he happen to be Deaf for a reason. Then you turn against God and put him device in his head. He will still be deaf and wont understand anyone say unless readlip and listen then he may pick up approx 75 percent. He will never understand without read lip while listen with CI. I feel bad for your son he may have to have several more surgeries as he grow up. Hearing aid are much cheaper and lots of freedom, no need attend doctor office often or therapy. Anyway, hope your son will have the best care. Remember God has a reason for your son being Deaf. Think about that.
I have twins boy and girl, often school kids ask them if daddy is Deaf? My kids said "yes and it is so cool and we have three languages but you have two." Go figure. Am proud of my twin kids.

Rachel @ Cochlear Implant Online said...

Silentredwolf,

I personally think you have no right to judge how well a CI user can hear as you don't have a CI, unless you can back up your facts by providing the sources.

As a CI user, I do not need to lipread at all to understand people. I can have conversations with people on the telephone, hear and understand the radio, and I can even have conversations with people who are in different rooms. I personally know several other CI users who perform just as well as I do.

Anonymous said...

There is no reason to be prejudice especially since you acknowledge the Godhead. (After all, a more Christ-like example would be to accept everyone regardless of his or her choices; to love one another.) Prejudice and blind hatred are prime examples of someone’s unwilling to face their own fears and educate themselves. Jenny

Anonymous said...

Rachel, I understand perfectly and it is my rights. It is ok for me that you are CI user, That's ok with me if CI work well with you, that's great, mostly don't and that is fact. You hearing loss not serious, maybe hard of hearing, the CI will be good, profoundly Deaf, small chance to hear completed. But that beautiful baby have high chance to hear normal but I doubt it since he have profoundly Deaf. So just wait for 10 year and find out. Good luck. I don't hate you, I respect you.
Sincerly yours,
Silentredwolf

Amy said...

Silentred wolf-- Actually, most CIs DO work EXTREMELY well.

My two sons listen to long stories, chapter books, movies, phone calls and so on without ever reading lips. In fact, their lip reading skills aren't all that great-- because they are rarely used.

We parents know that the truth about CIs is that they ARE working. Deafness isn't something sent from God. What kind of cruel God sends disabilities on purpose to one child and not another?!? My God-- the one whose son healed people from various diseases and disabilities-- loves humans and wants them to be fully functioning and healthy. I rarely bring up religion when discussing CIs but the comment that deafness comes from God has been bothering me for, oh, about 7 years.

Pax,

Amy

Anonymous said...

Interesting tidbit that most people (including deaf people) don't know... you can't qualify for a cochlear implant unless that ear is profoundly deaf or severely hard of hearing. Those two terms mean the same... only if your hearing doesn't register on the audiogram can you qualify for a CI. So to claim "profoundly Deaf, small chance to hear completed" is an oxymoron to a CI user.

In addition, a claim that a CI didn’t work means that person wasn’t committed to the extensive therapy needed to understand sound or they couldn’t handle the new sensory of sound. CIs are tested for functionality when implanted – if they didn’t function according to specifications then the surgeon tries a second device. If that device also fails during time of surgery, then the CI is not left in the persons’ head.

-Barbara

Rachel @ Cochlear Implant Online said...

Silentredwolf,

My sister and I are both PROFOUNDLY deaf, and CIs DO work incredibly well.

In fact, many people who are hard of hearing do not qualify for a CI. CI is specifically for people who are SEVERELY to PROFOUNDLY deaf because hearing aids will absolutely NOT work for them. I even personally tried wearing hearing aids, but I received absolutely no benefits.

I'd suggest you do your research before presenting your information. Your information that you are spreading is incredibly incorrect, unless you can provide me some sources.