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Raising deaf and hard of hearing children.

< Raising

A Parent’s Journey.

Hearing Like Me member Hillary Whittington lives in San Diego with her firefighting husband, Jeff, and her 4-year-old daughter, Ryland who absolutely never stops talking.

My husband and I are blessed. We have a funny, outgoing, charming 4-year-old that is absolutely full of life. She loves to smile, play, and sing, and will nearly talk your ears off. The unique thing about her is that by all clinical and medical definitions, Ryland is deaf.

Many may ask how we could ever consider that a blessing, but it’s because of the deafness that Ryland is who she is today. Ryland has cochlear implants, which she received when she was 19 months old, but her time without sound truly shaped her into an amazing and vivacious child. She developed a language of facial expressions at a very young age that she has never lost. To this day, she can contort her face in such a way to not only express what she’s feeling, but have you rolling in laughter at the same time.

Getting Ryland her cochlear implants has been a long journey and we now recognize that there were many signs we overlooked leading up to that life-changing diagnosis. I will never forget the phone call that started us down our path. My husband, Jeff, was working a 24-hour shift at the fire station and I was home alone with Ryland. My in-laws had called and shared with me their concerns that Ryland wasn't startling or turning to certain sounds.

Though it was so hard to hear, this was the final sign I needed to confirm the fears that I, myself, had already been feeling. In fact, Jeff and I had initiated several attempts to address our concern, but talked ourselves out of any follow through due to our inability to accept that something could be wrong with our perfect little baby. We already recognized that we tapped Ryland’s shoulder to get her attention, purchased visual toys because she preferred them, and that she wouldn't calm to our voices unless she saw us enter a room. We knew what we were likely facing, but we needed that final push to force us to address the issue.

I called the pediatrician, who saw us the same day that my in-laws called. Surprisingly, he told me "not to lose any sleep over it" but he would go ahead and order a hearing test. I will freely admit that we lost a lot of sleep over it!

The next day was much like a funeral. Even without an official diagnosis, we began grieving what we knew deep down to be true. My husband returned home and we began to do our own ridiculous informal testing. We banged pots and pans above Ryland’s head, screamed her name as she lay napping, and tried to walk up and scare her from behind. We received no reaction! We were confirming our fears and coming to the realization that our daughter may not lead the life we had always dreamed.

The next few weeks seemed like a blur as we attended countless appointments and began networking in our community.

I sobbed, thinking about Ryland leading a difficult, solitary life in a predominantly hearing world. We were completely overwhelmed and constantly searched the Internet for curable reasons to explain her lack of hearing. It was so disheartening, but it did lead us to the discovery of cochlear implants. We sat in amazement as we watched YouTube videos of small children hearing sound for the first time. That was when we first began to feel a sense of hope. Ryland, we thought, may just be able to hear live the life we had hoped for her, after all.

The next few weeks seemed like a blur as we attended countless appointments and began networking in our community. Ryland received an official diagnosis as profoundly deaf at 13 months, which was soon followed by the news that she had the necessary anatomy to be a cochlear implant candidate. The clock was now ticking. We knew that the sooner we could get sound to Ryland’s brain, the better chance she would have for success. We were warned, "not all children learn to speak with cochlear implants," since there are so many factors that play into a child's success, yet we remained hopeful and confident. We continued to push forward.

Hillary’s daughter, Ryland, was born profoundly deaf. Thanks to her cochlear implants, Ryland not only talks, but sings a mean rendition of the ABC's, too!

Our next challenge came in deciphering between and deciding which cochlear implant was the right one for Ryland. Unlike most implanted medical devices, the patient is given a choice of brands. It certainly didn’t help that we were dealing with a short window of time to make a decision, but we believed it was important to research what was available, and make the most educated decision possible. Thankfully, we were warmly welcomed to a group of San Diego BEA (Bionic Ear Association) members where we found it easy to gather information and make an informed decision.

Ryland went into surgery when she was just 19 months old. Activation would follow shortly after that. Our decision to have Ryland implanted was easy; we were thankful for an option that would give our daughter a door into the hearing and speaking world. In fact, the surgery was actually the easiest part for us. The true work has come after activation.

There are speech therapy appointments, audiology visits, mappings (programming of the implants), schools to evaluate and attend, and time needed for Ryland to just play and be a kid. I must hand it to her; she has been an incredible sport and an extremely hard worker. In fact, as I write this I am happy to report that she has completed her first day at a mainstreamed preschool and had an awesome day! This journey has been full of a lot of twists and turns, too many to detail in this article, but it has been worth every moment. Ryland is an incredible child, and it’s largely in part to her deafness. We are blessed!

Hillary Whittington

Discussion

There are 16 comments.

member
LanieShae says: Posted on Mar 29, 2012
Out of curiosity, was ASL ever discussed as an option before the implant was put in?
contributor
H Whittington says: Posted on Mar 30, 2012
Yes, Ryland knew over 250 signs before she was implanted. Ryland was in a baby sign language class before we knew she was Deaf and I enrolled in ASL at the community college as soon as we got the diagnosis so we could teach her more. While we focus on spoken language now, we continue to sign with her today and she has retained all of her ASL. She still signs while at the pool, taking a bath, at the beach, and in the mornings before she puts her "ears" on. We also want her to be able to communicate with other Deaf people who weren't able to gain access to cochlear implants. We feel fortunate that Ryland was able to take advantage of this medical miracle.
member
Harryrh says: Posted on Jul 07, 2012
I am deaf and have a masters degree in deaf ed. and a masters in counseling deaf children. Sounds like you and your husband made some good choices.....
member
ThePalmers says: Posted on Jul 09, 2012
My husband and I are just beginning our journey with our son whom was just diagnosed with severe to profound sensorineural hearing loss. It is indeed overwhelming but we know that there is so much to look forward to with our little guy. Thank you so much for sharing your story.
contributor
H Whittington says: Posted on Jul 11, 2012
We truly appreciate your responses and glad you enjoyed our story. It is a never ending worry to make sure you make the right decisions for your children...but this experience was particularly difficult because you need to educate yourself, act quickly and work diligently throughout the process. It can be truly exhausting! We would love to offer our support in anyway we can. We wish you the best on your journey and please let me know if we can help you in anyway we can! :)
member
Rbelle27 says: Posted on Aug 04, 2012
Hi Hillary! Thank you for sharing your story! :-) Our son Michael was diagnosed as Hard of Hearing at the age of 3 1/2. When all the kids were talking and engaging in conversations I watched my child play alone or in the comforts of his family and siblings. It was a tough road from diagnosis to "recovery". He is now 5 and just graduated from an Auditory Oral School and entering mainstream Kindergaten in 3 weeks. Although I am excited for this next step, as a parent you always worry whether you are making the right decisions for your child. Again, thank you for sharing this part of your lives with other families in similar situations...it inspires me to keep going and always looking forward!
What we choose to give to the world speaks more than words...give kindly, give generously...and most especially give from the heart
member
Lynnrousseau says: Posted on Aug 20, 2012
Hillary, Proud of you and your husband working together to seek the best solution for your daughter. Just watching her sing the ABC's with a proud smile shows you made the right choice! There will be many more challenges as she starts school even as she is mainstreamed in classes. But know you can argue on her behalf to be part of the regular classroom. My mother went through the same thing with me, found a talent I was good at (dancing) and it provided a great outlet for me socially . As an adult, I can go anywhere, do anything I set my heart on:) Lynn Lynn
Lynn Rousseau Past President of Hearing Loss Association of Florida Member,Accessible Travel Advisory Board Citizens Disabilty Advisory Board
member
Geri480 says: Posted on Nov 17, 2012
Thank you for sharing your story. I am the grandmother of an adorable 10 week old baby boy who has failed numerous hearing tests. The first ones were done in the nursery when he was born. The first one scheduled after he had been home was done and the parents were told he could hear 50 Dcb (?) in one ear and 60 in the other. They always mentioned fluid behind the ear drum. A month later a different person said no fluid.. that he could only hear 90. He is being referred to a children's hospital for further testing, and the possiblity of cochlear implants was discussed. We really don't have a definite diagnosis yet. This is all new to all of us and we know we have so much to learn. The strange thing is.. sometimes it seems like he cannot hear, other times it seems like he can hear. A few days ago I was talking to his mommy on the phone and she put the phone near his ear. After I talked to him and then stopped talking, he was chattering to me like he was answering me, then she said he started looking around like he was trying to see where I was.. where my voice was coming from. There are so many things I just don't understand about this.. how it seems like he hears at times and other times not. I don't know if he is hearing certain pitches or what is going on. I do hope we get some definitive information soon. It was very encouraging to hear you story. Thanks so much for sharing.
member
michdonov says: Posted on Dec 04, 2012
Thanks for sharing your story - yours is very similar to mine and my husband's with our 4 year old daughter. She was born with a moderate-severe loss in both ears and had worn hearing aids since 8 weeks old. In the past year, we noticed the hearing aids weren’t doing the trick but figured it was more fluid in her ears from her many ear infections. It wasn’t; turns out her right ear got progressively worse and she was now profoundly deaf in that ear. She was just implanted in August and we’re about to finish up mapping in a few weeks. Although it’s taken some time (since our daughter was implanted later) we already notice a difference in her speech.
contributor
DeafMom says: Posted on Apr 10, 2013
I had the pleasure of meeting you all out in LA and talking with Ryland-- what a cutie! You are blessed, indeed. :)
Karen Putz www.karenputz.com "Life is too short to sit on the sidelines. Jump in!"
member
Sandra676 says: Posted on Apr 13, 2013
I think that if parents had a device that translated ASL into text it would be a helpful learning tool to teach them how to sign. Also it could help when friends come over or other family members... what do you guys think?
member
glen18 says: Posted on Sep 11, 2013
I remember when son was that age he was easier then. Now things are so much harder because he feels like he does not fit in.
member
abc7305 says: Posted on Sep 15, 2013
Thank you for sharing your story. My daughter was diagnosed with hearing loss, which we recently learned is progressive, and I do find it hard to find people who understand what we are going through. It is great to hear another's story, and to know I am not alone. This site, and this post have been a huge help in our journey. Thanks again!
ABC
member
mommyof2 says: Posted on Sep 24, 2013
I'm a mother of child that was diagnose with severe hearing loss.Its definitely hasn't been easy.He is now 7 an still learning how to read an write..his teachers says he a awesome hard worker an loves school..I'm proud of him cause he tries so hard. .I think sense he been school its helped a lot..He knows about 250 words in sign. I just signed up for Asl classes which I'm very happy I did. .thanks for sharing your story..very inspiring
Mother of two wonderful boys
member
Ayalapm says: Posted on Apr 25, 2014
Thank you for sharing your story. I am a mother to a 5 month old baby boy who was diagnosed with ANSD. He hasn't yet received hearing aids but we have been told that hearing aids and cochlear implants would most likely not work with his condition. I am having a really hard time with this but am grateful I was able to read your story.
member
JanelleFleming says: Posted on Jul 11, 2014
Reading this, made me feel much better about my concerns about my daughter and her upcoming appointment; the encouraging words are helpful.

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