Joey McIntyre shares story of his son’s hearing loss

Riley waits for her snack after the softball game. See her blue and pink CIs?

Joey McIntyre of New Kids on the Block and Dancing with the Stars fame share his family’s story of hearing loss in the latest issue of People magazine. His youngest son, 3-month-old Rhys, has been diagnosed with a severe loss and is wearing hearing aids. According to the article, the family is working with an auditory-verbal therapist and might consider cochlear implants.

Many of the comments on the article are insulting, rude, and just plain ignorant. While I have no problem with a family wanting to immerse their hearing-impaired child in Deaf culture, I do have a problem with those same people spreading lies and accusing other families of abuse because they made a different choice.

I’m going to address 20 things posted in the article’s comments and clear up a few misconceptions about cochlear implants. Feel free to ask questions in the comments section or share this post with others.

1. Cochlear implants DO NOT require additional surgeries as a child grows. The only reason additional surgery would be needed is if the device failed. CIs have a 1% failure rate.

2. Cochlear implants ARE NOT implanted into the brain. It IS NOT brain surgery.

3. If parents want their child to use spoken language, they CANNOT WAIT until the child is old enough to “make the decision for himself.” Most language learning occurs before the age of 3, so waiting would put the child at a terrible disadvantage.

4. Sign language is great, if a family wants to learn it. My family, for instance, is HUGE. I didn’t expect all 100 of them to learn ASL. Even if they wanted to, it would be nearly impossible, and Riley would’ve had no way to communicate with cousins, great aunts, and I didn’t want that.

5. My daughter knows a few signs, for those times when she doesn’t wear her CI processors, but she doesn’t “rely on” ASL and doesn’t need to.

6. Speech is available at birth. How do you think typically hearing children learn language? It seems that Rhys is benefiting from his hearing aids, so using spoken language is appropriate.

7. The implant is NOT DRILLED into the skull, like a screw is drilled into a piece of wood. A pocket for the implant is carved into the skull and a small hole is drilled into the mastoid bone so that the electrode array can be inserted into the cochlea. Read more on cochlear implant surgery at Tampa Bay Hearing and Balance Center.

Riley got hearing aids when she was 19 months old.

8. Cochlear implants don’t “fix” hearing and don’t claim to. They offer users access to sound. Just like you have to learn to speak, you also have to learn to hear.

9. AG Bell is a proponent of listening and spoken language, but that doesn’t mean the organization is against sign language. It’s not either/or.

10. Auditory-Verbal Therapy focuses on teaching a child to use her hearing and learn to speak. It DOES NOT “forbid” all gestures; in fact, a hand cue is used during therapy. It signals the child to listen.

11. If deafness is not a disability, why do so many Deaf people use hearing aids? What are you trying to “fix”?

12. Riley’s CIs don’t hurt when she puts them on.

13. Riley is a special-needs child. Any child who has an IEP or who has special accommodations at school is a special-needs child. It is not a bad thing.

14. Riley’s CIs help her hear, but she is and will always be deaf.

15 A deaf child DOES NOT belong to the Deaf culture. She belongs to her parents.

16. Riley’s hearing aids and cochlear implants and speech therapy ARE COVERED by insurance.

17. You CAN have X-rays if you have CIs. Riley has had them done at the dentist.

Jumping from the high dive into 15 feet of water was not a problem for her implants.

18. You CAN swim if you have CIs (you just take off the processors.) No, you can’t do deepwater diving, but how many people do you know who are deepwater divers?

19. Children with cochlear implants have a quality of life equal to that of hearing peers.

20. I respect Deaf families wanting to immerse their child in the Deaf culture. Why can’t they respect my wanting to immerse my child in the hearing culture?

15 comments

  1. jennifer · March 28, 2010

    thanks, tiffani. i have been following this too. i saw your reponse on there. yikes, i am so glad i have never encountered any of these folks anywhere other than online. they are mean!

    your response is beautifully-put, and i am going to post it on my FB page.

  2. Pingback: Tweets that mention Joey McIntyre shares story of his son’s hearing loss | Sound Check Mama -- Topsy.com
  3. Sound Check Mama · March 28, 2010

    Thanks, Jennifer. I’m so tired of the misinformation and outright lies of some groups. Raising a hearing-impaired child is hard enough without others questioning your decisions.

    I appreciate your sharing the link!

  4. This Belle Rocks · March 31, 2010

    I think it’s really sad that this is even a controversy at all. I didn’t read the article in question, but it sounds as if these people are spending way too much time spreading misinformation and not enough enjoying their children.

  5. Insulted Reader · April 27, 2010

    “11. If deafness is not a disability, why do so many Deaf people use hearing aids? What are you trying to “fix”?”

    Seriously?
    –> because the rest of the world expects them to be able to hear to function in “our” world. It is unfair and just as dangerous as racism. A Deaf person is NOT disabled. If our culture was more understanding of the needs of Deaf people, there would be no expectation to wear those horrible devices. You do with your child what you think is right for your family, but I guarantee that when your child grows up she will take that thing off and learn how to speak the language her mind was originally wired to speak.
    You may not realize it, but by denying your child the means of conveying thought back and forth in her natural way will stagnant her intellectual ability. SO many deaf kids get to college and realize how much their intellectual ability expands after learning ASL.

    Read a book by a deaf person. Try to put yourself in their position- and actually know EVERY SIDE OF THE ARGUMENT- before jumping down such a defensive and rude road.

    Also, I would like to add that a child BELONGS to no one. That child has his or her own thoughts feelings and needs. The only person any child ever belongs to is his or her self. The first few years require love, compassion and guidance, but beyond that the parents’ roles fade into how understanding and ACCEPTING (meaning not wanting them to change to suit other’s wants…!) they were of their child.
    Think about it.

  6. Sound Check Mama · April 27, 2010

    Thanks for commenting on my blog.

    You ask me to see every side of the argument and No. 20 in my post does that: “I respect Deaf families wanting to immerse their child in the Deaf culture. … ”

    Why don’t you offer me the same courtesy?

    And, yes, my child does belong to me.

  7. Deaf258 · June 6, 2010

    Wow.. Your attitude about your child’s deafness is not in the right place. I wouldn’t want to be in your shoes in 15 years when your Deaf child starts to realize a lot of things. Kids start to recognize and realize more and more at an earlier age.

    I was raised as an “oral, mainstreamed, hearing-impaired, special needs” child. And look at me now, I don’t get along with my family and I’m not successful. I give my thanks to IEP meetings, ignorant audiologists & school administrators. Most of all, I thank my parents for being lazy! Instead of learning American Sign Language and building stronger family bonds with me, they rather want me to to all the communicating work by hearing and speaking like them. It was and still is a wonderful life!

    Yes, I am bitter. Did Deaf culture teach or influenced me to be bitter? No. The life experiences I had lived by living immersed in the Hearing world has taught me how to be a one angry asshole.

    Want your child to have a better attitude & outlook in life than mine? Please think of applying the bilingual & bicultural approach!

    Best of luck with raising your Deaf child!

    Tsk.

    • Sound Check Mama · June 7, 2010

      Thanks for reading and commenting. I’m sorry you have a bad relationship with your family. And I guess success depends on how you define it.

  8. the one and only ridor · June 7, 2010

    You claim that CI is successful with 1% fail — I nearly laughed out loud. That is one of many lies perpetuated by pro-CI industry trying to make $ off from Deaf people and/or insurance companies.

    If it is so successful, please, at least, TELL me why I met SO many borgized Deaf people stopping and/or removing their implants after turning 21?

    Don’t believe me? Visit Gallaudet, NTID/RIT, ASU & CSUN to see for yourself.

    You’re being delusional in assuming that it is successful mainly because YOU wanted it to be. Actually, you’re correct that your child belongs to you – you’re selfish parent mainly because you did not want to meet a child’s needs, you borgized your own child to meet YOUR needs at your own convenience.

    To me, that is absolutely selfish and I’m glad that you’re not my parent.

    R-

  9. Val · June 7, 2010

    Hey Tiffani, I simply laugh out loud myself at some of the comments and misconceptions printed by a few of your readers. I couldn’t think of anything less selfish than a parent devoting years of hard work, appointments, therapy, financial strain, and more than to help their child and give them opportunities.

  10. Zoot · June 7, 2010

    This was a great entry and it taught me a lot. Thank you for sharing and I think judgemental parents are everywhere. If Riley had been born with perfect hearing these same parents would find something else to criticize you for. On the other hand? The rest of us? (The kind and normal ones…) think you’re doing a great job of parenting and informing those of us clueless to the world of cochlear implants. GREAT WORK!

  11. Cindy Hylton · June 7, 2010

    Parenting is a truly difficult role, job, gift, task, however one wishes to define it. I am the mother of two “normal” children, but have friends that are parents of children who have autism, chromosome-6 ring disorder, deafness, severly impaired vision, and heart defects. I applaud every one of those parents who do EVERYTHING within their power to make life as comfortable for that child as possible. Whether that be ABA therapy for autism, multiple surgeries to manage the heart defect, cochlear implants, learning sign language, and numerous medications. Who am I to judge what one parent does vs. another? What I am impressed with is a parent who gives as much love as possible and does everything within their means of making life enjoyable for their child. The child cannot make these decisions and it is the job of a parent to do so.
    I commend you Tiffani and Ryan for making these tough decisions for Riley. No matter what she decides to do on her own in the future.

  12. Nicole Hill · June 7, 2010

    HI Tiffani,
    I am so sorry your are being attacked by these closed minded people that seem to only want to see their point of view. I commend you for seeing both sides of the spectrum and for whole heartedly standing by your choice for Riley. Your a wonderful, loving mother that only wants the best for her in life. If implants will help make her path in life easier than BRAVO for stepping up and making that decision. As a parent who knows the outcome of the choices we make for a child on a daily basis. We just do our best and try to always do it with love. Some of the comments about being bitter with their families and having bad relationships with their families have issues that probably have nothing to do with being deaf. I enjoy your blog and following all of Riley’s progress. Keep up the good work. I had no idea people felt the way they do about this topic. At least you expressed your opinions in a respectful way. Not by making personal attacks and name calling. I know you have helped many families by voicing your opinions and experiences with Riley!! Riley does belong to you and no one will ever love her as much as you do!!

  13. Ri · June 7, 2010

    Tiffani, I don’t know as much as I should about deafness, or CI.

    What I DO know is that you are intelligent, thorough and fairminded. You are kind; you devote your time and energy to volunteering, educating and learning everything you can about Riley’s condition. You are a wonderful, caring, loving mother. You and Ryan are the kind of parents who work as a team and whose main focus in life is the safety, health and happiness of your daughter. And Riley? Riley is a vibrant, beautiful, joyful, talented, smart-as-a-whip, truly happy and healthy child.

    Differing points of view are fine – they make the world go ’round, which you understand because you respect others’ opinions. It’s sad that some of your commenters can’t do you the same courtesy…but remember that their negative projection doesn’t affect your reality.😉

  14. Sound Check Mama · June 7, 2010

    Thanks, everyone, for reading and responding! I appreciate it!

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