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Raising deaf and hard of hearing children.

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Caring Without Coddling.

Parents Chris and Leslie believe their son capable of remarkable things, hearing loss or no hearing loss.

Meet the Butchkos...

Chris and Leslie Butchko parent their son Johnny, who has severe-to-profound hearing loss, using the same approach that they take with his older brother: High expectations, clear guidance, and support in all the right places. As parents, riding the fine line between doing too much and demanding too much is never an easy one – especially when your child has hearing loss.

Discussion

There are 10 comments.

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srenne says: Posted on Apr 04, 2012
Thanks for sharing I think this is great for parents with young children to hear... I basically did the same with my daughter, Carissa (now 23)... I am glad she has an older brother, Jason... when she was young I held her up to the same expectations I had for him - especially with behavior and she met those expectations...
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Rbelle27 says: Posted on Apr 05, 2012
Thank you very much for sharing! I cried the whole time watching this video because it hits SO close to home. My son is 4 years old and was diagnosed a little less than a year and a half ago with hearing loss. The road was a tough one...and yes I grieved for days if not months. But everyday is a challenge and every word I hear is truly a blessing! I went through the Distance Learning for Parents through John Tracy and was fortunate that our son was able to attend an Auditory-Verbal School here in San Diego. It was with the help of the parents that I met at the school, the support of our care providers, and guidance of a great school district that I found ways to help my child "Help himself." Yes I truly believe that children with Special Needs need to be cuddled and NOT coddled...because it is what helps them realize and achieve their true potential. Long story short...my son went from a Speech and Language ability of 22 months (barely 1-2 word utterances) when first aided at the age of 3 to 42-48 months in a years time (He is a regular chatterbox with over 9-10 word utterances!). We have decided to mainstream for Kindergarten. We have been going through our doubts, wondering if we are pushing him too hard or setting him up for failure. It was as if your story was what I needed to hear...words of encouragement from parents who have been there and done that...Thank you again!
What we choose to give to the world speaks more than words...give kindly, give generously...and most especially give from the heart
member
alexlildemo says: Posted on May 06, 2012
Thanks for sharing. You have a strong family and an awesome outlook on life.
2 Ears are Better than 1
member
Kristen says: Posted on May 07, 2012
Hey! I know you guys! What a great story! Hope to see you this summer! Kristen
contributor
leslie says: Posted on May 10, 2012
It pleases us to hear that sharing our story is helping others. In many ways, Johnny's deafness has been a positive experience as we have met so many wonderful friends and have worked with top professionals. Kirsten: I hope that all is well, and there is a good chance that we will see you this summer.
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suzanne says: Posted on Sep 05, 2012
my son has severe to profound loss in both ears. I believe his audiogram reads 80db and 90db. we have him aided he is 5 months old. We aided him right before he turned 2 months old. I know he is getting something but I dont know what to consider.....implant or just aids. I really want to stay with the hearing aids. Implants can fail the body can reject it and they lose any residual hearing they have. But then I have seen them do amazing things. any advice would help me. thanks
my son is severe to profoundly deaf looking for success stories with the use of hearing aids on this severity
member
suzanne says: Posted on Oct 05, 2012
@ Leslie- I was trying to get some idea of what it is like to have severe to profound hearing loss. Someone told me who is late deafend loss at 90db that they compare it too "hearing underwater" now listening to Johnny speak it doesnt sound like he hears underwater his speech is understandable. But every loss is different audiograms are not always the same either. As above in another post I have noted my son's loss 80 db and 90 db sensorial hearing loss. I have some questions if you do not mind me asking ...if you do not want to answer that is ok with me I understand. I am just searching for advice or stories from others who have this severity of loss. Did your audiologist ever say he may need implants when he was a small child? When did you start speech therapy? Did he do Auditory Verbel Therapy? When was he aided? our audiologist has mentioned implants, she does not pressure at all. But with his loss he may need them or maybe he wont that is why I am searching for others who has success with hearing aids. I would love to hear more of Johnny's story if you would like to share it with me. I have 2 kids with hearing loss my oldest loss isnt so severe. hearing aids work for her. Sorry, if you or anyone here feels like I asked too many questions....Johnny story is a success. I have searched on the internet and through parent contacts for advice and they seem to go with implants. So that is why I am FULL of questions.
my son is severe to profoundly deaf looking for success stories with the use of hearing aids on this severity
contributor
leslie says: Posted on Oct 12, 2012
Suzanne: I am happy to answer your questions. Cochlear Implant: Johnny got his first pair of hearing aids when he was 16 months old and currently wears the Phonak Naida S III UP hearing aids (which have transposition technology to move high frequency sounds to a lower frequency which is more accessible to Johnny). When Johnny was young, his audiologist did not recommend a cochlear implant. During the past few years, Johnny's auditory discrimination has declined significantly (although his thresholds have remained constant) and his audiologist now feels that Johnny would benefit from a cochlear implant. We have felt pressured to get Johnny an implant and it has been a very difficult decision process. Given that Johnny is 13 years old, we decided that he must have a say in the decision. Johnny feels very strongly that he does not want an implant at this time and we have decided to honor his decision. He told his audiologist: (1) that he is afraid of the surgery, (2) he is getting straight A's and has lots of friends, (3) although everyone tells him how hard he is working, it does not bother him because he is used to it, and (4) no one can guarantee that the operation will be a success or that he will perform better with an implant than with hearing aids. Although many of our experts believe that Johnny would benefit from a cochlear implant, all of them understand and respect our decision to let Johnny decide. Auditory-verbal therapy: When Johnny was 8 months old, we suspected that he had a hearing loss but his doctors disagreed. When Johnny was 15 months old, The House Ear Institute diagnosed Johnny with a severe to profound hearing loss and referred us to the John Tracy Clinic where Johnny participated in the infant and preschool programs. At age 3, Johnny transitioned to the private preschool in which his older brother was enrolled. At that time, he started auditory verbal therapy with Sylvia Rotfleisch. Sylvia not only taught him how to speak clearly, she also taught him how to interpret a degraded signal so that he can use any phone and play computer games that give oral commands and instructions. Johnny made amazing progress and he still sees Sylvia from time to time when his speech declines. Hearing Under Water: You may want to look at websites that simulate what it is like to have a hearing loss. We agree that Johnny's story is a success because he is a happy teenager who is thriving socially and academically in middle school. This year, Johnny was re-elected to the school's student council and is active in sports. I hope that this is helpful. Whether you decide on hearing aids or a cochlear implant, you shouldn't think of deafness as if it was a broken leg- just put a cast on it and it'll get better. Helping your children grow through deafness is a huge commitment of time and energy; you have to keep pestering them to acquire language and to do it well. A cochlear implant might make it easier, but it won't make it automatic.
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suzanne says: Posted on Oct 14, 2012
@ Leslie- Thank you for getting back to me! I understand about a CI I am leaning towards hearing aids. It is a hard decision. Some people love their CI's and others dont. I have talked to people on both sides of that. Your son is such a amazing success his story gives parents hope. Congrats to Johnny for being re-elected for student council!! You and your husband are great parents and your children are so lucky. I am trying to get my son started in AVT but it is with a speech therapist and she is not really familiar with AVT but I have made calls and found AVT that are willing to help us and we are starting skype sessions with a DHH school aswell. We live very far from any AVT we only have Speech therapist. I do know and agree with you about deafness it is a long journey. I am a stay at home mom. I have been since our daughter was born almost 7 years ago once we learned she was deaf we knew someone had to be here 24-7. I dont regret it at all she is mainstreamed and in first grade doing very well. If you have any more info or advice that you think would be helpful please let me know. Anything would be great. Right now we are looking for a FM system for home. We would use it when we are in a noisy enviorment. You cant get his attention when its noisy plus for the future I think it would be helpful. I am going to ask my contacts about - how to interpret a degraded signal. never heard of that and I am interested. So many things I am unfamiliar with and I want to make sure I get all my bases covered for my son. Thank you so much I cant thank you enough for getting back to me.
my son is severe to profoundly deaf looking for success stories with the use of hearing aids on this severity
member
pure78 says: Posted on Jul 10, 2013
That is great every parent should think the best is in their child no matter what problem he or she is facing
Denise Shaw

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