«

»

Neal’s Story

April 5th, 2009 by | Tags: , , , , | 7 Comments »

While in California for Cochlear Celebration, I had the pleasure of having lunch with several members of CICirlce, and incredible group all about pediatric cochlear implants.  While enjoying a delicious lunch, I managed to catch up with Neal, an adorable nine (and a half!) year old bilateral cochlear implant user.  He (and his parents) were kind enough to share their story with me, and have given me permission to share it with all of you.  Enjoy!

 

NEAL’S STORY

 

(Elizabeth’s Note:  I’d just like y’all to take a second to notice what a DIFFICULT listening environment this is — we were outside on a patio at a crowded restaurant, with a large table full of chatting adult CI users nearby, traffic whizzing by on the street, and music playing over the restaurant’s sound system.  Didn’t Neal do an absolutely fantastic job of listening in noise?  Way to go, Neal!)


Neal’s Mom writes:

 

Neal’s hearing loss was not identified until he was 18 months old.  There was no newborn hearing screening in place when he was born.  Neal was seen by various specialists, including a neurologist, since he was 2 months old because he has an eye condition called nystagmus.  Still, no one ever suspected a hearing loss.  At 18 months of age, when Neal hadn’t developed language yet, his neurologist suggested a hearing test, “Just to rule that out.”  No one thought at first that there would be any loss.  However, over the weeks it took to get the appointment for the ABR test, we started doing various home testing (pots being banged behind Neal’s head and other such technologically advanced methods).  We began to see that a hearing loss was not out of the question.  We still weren’t entirely convinced though.  Neal was very good at noticing subtle changes with his other senses that could make it seem that he heard things.  Finally, when he had the official hearing test done, it was found that Neal not only had trouble hearing, he had no hearing at all as far as their tests could check (up to 120 db).

From that point on, our journey into a whole new world began.  We were suddenly confronted with choices we never knew existed.  We knew a child could be deaf, but we didn’t know that if your child was deaf, you then had to decide what kind of deaf child he would be.  Would you buy hearing aids? Would you consider a cochlear implant? (A what?) Would you start learning sign language?  Were you going to be an oral family or a TC family?  Umm…”  I compare the feeling I had to how you might feel if you woke up one day and were suddenly standing at the doors to a college and being asked to pick a major that you would need to stick with forever.  One minute before then, you didn’t even know you were going to college and now you had to make a life decision about what you were going to study there?  We had new worries for our child that we hadn’t planned on as well.  We suddenly didn’t know if he would be able to communicate for himself in everyday life.  We didn’t know where he would go to school.  Could a child who is deaf attend a “regular” school or did they have to attend a “special” school? Would he be made fun of if he had hearing aids or this cochlear implant thing? Would he have any of the life we had imagined for him before getting this diagnosis?

In the end, we went with hearing aids and sort of stumbled our way to an auditory-oral approach to Neal’s deafness.  The hearing aids never helped him, although he ended up trying them for about a year because it took that long to get insurance approval for his first cochlear implant surgery.  We did teach him some sign language during that time.  When we realized he had never heard the things we had been saying to him for the first year and a half of his life, we felt horrible and wanted him to get some language as fast as possible.  He took to signing very quickly and it became clear that language was something he craved and was good at learning.  Soon after Neal’s implant was activated in June of 2002, he started attending an auditory-oral preschool where sign language was not used at all.  We still signed with him some at home, but as he quickly progressed with his expressive and receptive auditory language skills, that was dropped.  Neal transitioned easily to spoken language and never seemed frustrated by the experience.  After three years of preschool, he began mainstream Kindergarten.  He was still a little behind in speech and language skills, but not outside the spectrum into which most Kindergarteners fall.

Neal is now in third grade.  He is bilaterally implanted.  He had his second surgery while in first grade. He is still in a regular education classroom.  He reads well above his grade level, and has always been in the highest ability groups assigned for both reading and math in his classes.  The worries we had as parents when we first found out that Neal was deaf have subsided immensely.  We now know he can talk to anyone and everyone he wants to.  We know that he can attend the same schools his hearing sister attends.  We know that other people don’t really care that he wears processors behind his ears. Most of all, we know that he is “ok.” 

Neal himself is quite content with his life.  He likes his cochlear implants.  The only thing he would point out about himself that is slightly different from other kids is that he much prefers to have closed captioning on when watching TV.   Not the worst difference I could have thought of for him to notice about himself when we first found out he was deaf!  And really, any kid who can keep up with those closed captions as they fly by on the screen, and fill in the blanks when they start looking like a foreign language, is a superstar in my books.

 

…and I would certainly agree!  Neal’s Mom signs her emails with “Hard does not mean impossible” and it is clear that she and her son have taken this to heart.  

Written by

Elizabeth Rosenzweig MS CCC-SLP LSLS Cert. AVT is a Listening and Spoken Language Specialist Certified Auditory Verbal Therapist. She provides auditory verbal therapy, aural rehabilitation, IEP advocacy, consultation, and LSLS mentoring for clients around the world via teletherapy. You can learn more about Elizabeth's services on her Website or Facebook.

7 Comments

April 5, 2009 at 5:10 am

Thank you so much for sharing Neal’s story (and his mom’s). Our four-year-old son just received a diagnosis of mild to moderate bilateral hearing loss last summer. He compensated so well for his loss that, though his speech was delayed, he still functioned quite well. As they were fitting his earmolds for his hearing aids, he was still able to carry on a conversation in spite of his hearing loss and the putty filling his ears. Eight months later, his speech and vocabulary are improving at an amazing pace. Hearing Neal’s story further reassured me that, while he may be racing to catch up now, in the end he will be just fine. Thank you again for sharing this story. Blessings to Neal and his family!

Rhi

April 5, 2009 at 8:08 pm

Haha, Elizabeth! This video was cracking me up! I don’t think kids watch the kids shows that much nowadays…everything has become so mature! :)

Denice Solgat

April 8, 2009 at 1:37 am

You ROCK Neal…and, yup, you too Rachel! These are just a kick…wonderful to listen to…

(((cyber hugs)))

April 18, 2009 at 3:21 am

Very inspiring! Tayten was diagnosed around a year and a half and implanted at two. Although we definitely lack CI resources in our area, I am hoping that our super parenting :o) and utilizing the resources we do have will bring as much success as I’ve seen here with Neal! Thanks for posting ladies and thanks to Neal and his family for sharing!

Rhonda

April 28, 2009 at 12:01 pm

Hi. This is Neal’s mom. I wanted to let anyone watching this video and reading our story to know that you can feel free to contact us if you have other questions. I’m not into debating oral vs signing, but other than that, I would love to offer any input that might be of help to others. You can email me at mom2savages@msn.com.

Navin

June 9, 2009 at 7:29 am

Very glad to see the way Neal carried the conversation. Arnav was implanted 5 months ago when he was 2years 9 months old. Doing good with 3 AVT sessions a week. Very excited to see this video and look forward that Arnav reaches the same level.

Cristina

April 4, 2012 at 8:17 pm

Thanks a lot for sharing your story, my daughter will be implanted in 3 weeks and she’s 2 and half years old.
Can you pls. spend some time and advice what were the best things that you can remember helped him the most for the speech devolopment when he was just implanted.
Thanks in advance