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Deena and Her Family’s Journey

May 2nd, 2012 by | Tags: | 1 Comment »

Deena is a five year-old bilateral cochlear implant recipient who is being raised by deaf parents and has a deaf sister who is also a bilateral cochlear implant recipient. She shares a little information about herself in a video interview.

Deena’s mother, Malky, took the time to share her story about the journey to getting her daughters’ cochlear implants: 

Deena

Our older daughter Deena was born deaf.  She didn’t pass the hearing test in the hospital.  We followed up with the Audiologist. Through ABR testing, she had a diagnosis; severe to profound hearing loss. My mind started racing and flooding with questions and more questions. I also came up with a lot of awesome solutions, assuming since we the parents are also deaf, our daughter would be alright with just hearing aids and lots of speech help.  Well, we were naïve! Our audiologist brought me to her office, and with sensitivity asked us if we ever heard of a cochlear implant. I decided to keep my ears open and listen to what she had to say. At first, I thought she was exaggerating by saying “amazing” or was it amazing enough for hearing people that a deaf kid with implant can hear phone ringing ( I also can hear it ), their speech was clear ( my daughter was gonna have a lot of support/help I’ve heard of other kids without implants who speak well ) then she said a kid with a cochlear implant has clear speech like hearing person that others won’t know this kid is deaf !! and they easily converse in groups without asking for repetition. I remembered that part during my childhood – classroom and group conversations were the worst times. She showed me the diagram of the ear and exactly where the surgery is done. I was SHOCKED. After years of being told by deaf people how the operation works by going IN TO THE BRAIN like splitting into half or cutting out a portion !  She also mentioned kids with implants don’t require time consuming and tiring or frustrating speech sessions (another painful part of my childhood past ) I started filling with hope.  On the way out of the office, she simply said “just keep an open mind”. I promised I’d do and met with a lot of people.  Therapies, experts, other parents of deaf kids and deaf kids with implants themselves.  We asked many questions and everyone was happy to help with anything, directing me to websites, referring another friend with a cochlear implant child, etc. …At around 3 months, Deena was fitted with hearing aids. She began her first speech session at 7 months.  The speech therapist did some AVT work with a lot of focus on listening to sound and the localization of the sound.  He had a lot of experiences working with all kinds of deaf kids, with and without cochlear implants.  I was able to ask him many questions and he was very supportive and answered everything that I had to hear. I asked more questions at every checkup with the audiologist. I asked those typical questions, ex. What if something better comes out, what if one day they come out with a non-invasive procedure, etc.  She was very patient and understanding.  She reminded me that the sooner I do it the better success rate I can expect from my daughter. I was getting closer to the decision while my husband wasn’t ready yet. I didn’t want to have conflicts. I felt it was important to give support to my husband and for him to support me as well! Meanwhile pressure was mounting from family and friends…Then I told my husband how about we visit Strivright Auditory Oral School where they have all types of kids, with/without implants, hard of hearing, and hearing kids.  He said ok, we went down there and he saw with his own eyes a big difference between kids with implants and just hearing aids – if severe to profound.  We couldn’t stop looking at those kids with cochlear implants. They had it so easy.  Their conversations flowed so smoothly and fast without having to stop to look to understand or repeat.  We almost forgot those kids were actually deaf! My husband thought this was a great opportunity for my daughter and her future.

Shifra

My father offered to pay for our first consultation with Dr. Roland with no obligation to go forward. My husband, my daughter and I went to see the dr. He patiently answered any question we had. We felt confident and trusted this dr. to possibly help our daughter.  We took home all the paperwork and other info.  to discuss them and  think thoroughly and filled out the processing papers.  A few weeks later, we both made the decision to go ahead and scheduled the surgery date with Roland. Deena was 15 months old when she had the operation. It was a success with one ear (saved the other ear for later date ). We were emotional and relieved.  We counted down the days to Activation day in NYU. We saw success right away.  She’d turn around immediately whenever she was called and from another room! Every time we only put on the hearing aid, it was harder for her to hear or only turn around after several times calling her and only close to her.  That’s when we knew we did something right for our daughter.  We kept seeing success after success, week by week, year by year. Her therapists were all very pleased with such quick progress. My husband is super happy and so impressed with this new technology that does a lot more than just helping a deaf kid speak.  He went from anti to all the way pro implant! When I had my next deaf daughter, Shifra, my husband immediately reminded me to contact the same dr’s secretary to begin processing the paperwork.  After some testing, Shifra had a date for surgery at 12 months of age, bilaterally. While simultaneously, older sister, Deena, had her second implant done!

Deena is now 5 years old attending mainstream school. She doesn’t require any in classroom help. Her teachers constantly praise her. Her speaking and expressive language skills are above average. She’s the biggest story teller in a class of only hearing kids. She also has great speech intelligibility. She really is thriving and socializing beautifully with all her hearing peers. There are substitute teachers who comment they’d never imagine she’s deaf had they not seen her implants.  Deena started speech sessions as an infant 5 times a week.  She attended Strivright for 2 years. Then transitioned  to mainstream class at 4 years old last year with 5 times weekly speech sessions for half hour and HES 2x weekly. This year, she’s down to 4 times a week for half hour each session with HES in the afternoon also less than last year.

Shifra just turned 3 few weeks ago. She’s attending Strivright early intervention with private speech sessions by the same speech therapist as Deena’s using. Shifra will be staying at Strivright for the next few years while maintaining private speech sessions. She’s been singing Old McDonald and Itsy Bitsy spider songs since 1 year old. Her songs are more varied now and sophisticated along with her adorable expressive language skills.

Every summer I take both of my kids to music sessions once weekly to further improve auditory skills.

Both of them are speaking on the phone, singing songs, dancing to music’s rhythms, etc. with big sister Deena leading the way and helping little sister Shifra and following instructions very well !  They are so supportive of each other. Deena will notify me when Shifra’s implant goes missing or Shifra can hear if one implant isn’t working anymore and time for battery change ! Sometimes I see Deena helping put Shifra’s implant back on her head.

We chose to let the kids use both signing ASL and speaking language so they have the best of both worlds. They talk orally with me and sign with my husband.

I let them watch favorite character tv show or dvd whether Dora or Blue Clues, etc. as long as it’s educational.  They are able to understand every word.  Or they enjoy listening to many different kinds of music CDs. I’m still amazed they can hear and understand everything. I keep asking them if they understood this or that and have them repeat to me and find out they are right!

Recently, Deena is repeating a lot of things Shifra’s trying to say to me or my husband. Hearing people have commented that even if Shifra’s speech is very fast it’s still intelligible!

 

I’m so thankful to see my kids reaching maximum potential in so many areas unimagined in my days!

With today’s technology – the CI – deaf kid’s personality shines thru alot! I appreciate all that today’s technology has to offer and looking forward to what’s in store for our kids’ future. It truly promises to be a bright and positive one – for them – and ALL those who have been aided with implants!

1 Comment

Rosey Jacob

May 4, 2012 at 3:45 am

What an amazing story and I’m sure the continuation will make you very proud! They are both beautiful, smart girls. Coclear implants are a miracle. I have read many controversial politics within the deaf community. You did what you felt was important for your daughters and your family. For that, your decision should be respected. and as you expressed the best thing you did for your children!