We found out today that both of Rebecca’s cochlear implants need to be ex-planted and re-implanted. We are heartbroken. The feelings are bringing me back to a time not too long ago when Rebecca had not yet heard a single sound. She hadn’t heard a bird chirp, her sisters laugh, or her mom tell her how much she loved her. I was so torn. Rebecca was not even a year old, she was profoundly deaf, with a prognosis of going blind in the not-too-distant future. We spent a lot of time learning ASL. We took classes at night after work, taught by a woman who expressed her negative opinion of cochlear implants, who of course, did not have a child or any family member for that matter who was deaf. I kept thinking to myself, “why would we put Rebecca through surgery? We can communicate with her through ASL. But what about her vision?”. I spent months questioning myself and everyone around me. Tactile sign was another possibility. Tactile sign is when you sign into another persons hands. But even if we learned tactile sign, how many people would Rebecca be able to communicate with when she is older and cannot see? How many people that she comes into contact with would know tactile sign? Not many. Most don’t know ASL. At the time, Rebecca’s only providers who were familiar with deaf children were pro-ASL, and they were nothing short of amazing. Our plan was to send Rebecca to a signing school and hope that she learned spoken language along the way. But…..then I got to thinking, and listening to other deaf individuals speak. Some could not be understood. My daughter is not only deaf, but she will also one day be blind. I want her to be understood, I want people to listen, I want her to hear birds chirp, and god damn it, I want her to see sunsets. We are trying desperately now to fill our visual bucket list, we want to show her the world before she no longer has the chance. So for those of you that see this post, and hear this news of Rebecca needing another cochlear implant surgery, and thinking, “I told you so, she should have gone to a signing school”, I say…….EARLY INTERVENTION IS DOING A HUGE INJUSTICE TO FAMILIES OF DEAF CHILDREN!!!!! We were given a choice, to pick one way or another, without being able to experience both so that we could know we were making the right decision. We had to follow one path. It was decided that we would go the signing route, and it was expected that we would send Rebecca to a signing school. We were NEVER given any other option. Because of my indecisiveness, I sought out other avenues, just so that I could have peace of mind that I was doing the right thing for Rebecca. I contacted an Auditory Verbal Therapist who did not sign, but taught speech to children with cochlear implants. I wanted to explore ALL of my options, as every parent of a deaf child should be able to do. She was amazing. She was just as amazing as Rebecca’s other specialists who were pro-ASL. So what to do? With Rebecca’s Usher Syndrome, we ultimately decided upon sending her to Clarke School for Hearing and Speech, which focuses mainly on hearing and speech. We also have a deaf tutor that sees her twice a week in school, and comes to our home to teach us as a family. So am I comfortable with Rebecca not being able to hear for two weeks after her surgery? ABSOLUTELY! I love sign language and am very thankful for it. Am I happy that we sent Rebecca to a school for hearing and speech? ABSOLUTELY!!! If I could go back and do it again, I would do it the exact same way. What I have found is this……most people who scrutinize and judge, not only DO NOT have deaf children, they don’t have a child who is also GOING BLIND!!! When a family learns of their child being deaf, they feel helpless, heartbroken, and they are desperate to do anything to help their child. They should not be given only one option!!! And as Early Intervention providers, it’s a shame that they would make families feel as if they are doing something wrong by seeking out all avenues. There is one Auditory Verbal Therapist I have heard of who will not see a child if they are signing. This should be illegal. It’s time for a change!!! NO ONE has the right to judge your decisions as a parent, especially someone who has NEVER BEEN IN YOUR SHOES! I am disgusted with the feelings of how judged and scrutinized I have been. BOTH worlds collide for us, listening and spoken language and ASL, and for us, it works! But it may not work for another family, and that’s ok. Everyone has their own situation and their own reasons for doing what they do, and it is NONE OF YOUR BUSINESS, and you are in no place to judge. Early Intervention should be providing both avenues to families of deaf children so that they can make an educated decision, and the providers should not make the family feel uncomfortable or ashamed for exploring all options, WE ARE ONLY TRYING TO FIGURE OUT WHAT IS BEST FOR OUR CHILD!!!! Because after all, we love our children more than life itself, and would do ANYTHING for them. When a parent is overwhelmed with worry over their child’s diagnosis, they should not have the added burden of worrying about which providers feelings might get hurt. I am very thankful for Early Intervention and all of the support that we received, but when it comes to deaf children, I think the families should be able to explore all of their options before having to decide on one. We are headed into this surgery uneasy and a little heartbroken right now, but Rebecca will be ok. We will sign with her when she cannot hear, and speak with her when she can, because that is what SHE prefers.
Usher Syndrome Registry
Its so important for anyone with usher syndrome to register so that they are in contact with the researchers who are working to cure this awful disease. If you or someone you know has Usher syndrome please register at the usher syndrome registry.
The Big DayDecember 15, 2016
The big day is here.
Beth, I sent this toy friend Rusty
She is a musician and spends much time w/the Choclear (sp) also my amazing friend. I hope she can assist w/your journey . Her love and knowledge a blessing.
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I think you and your husband are nothing short of Amazing, if there were a hundred options and as a family you wanted to know every single one do so , and the fact that a medical entity would want to limit options is disgusting.
All my Prayer’s will be for Becca this Most Adorable Spunky Lil Miracle , tiny cousin I’ve never met and your family to come over this nxt hurdle Quick and Strong. All the Strength of the Universe to Becca, Mom , Dad and Sissy…
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Thank you so much for writing and for your kind words!!!
As an early interventionist for only the past decade and as a parent of two young-adult daughters, one who was not identified as special needs until high school, I appreciate your candid portrait of your experience and perspective as a parent. I learn from families everyday, but am mindful how it may feel as a parent and most importantly, providing options without judgment. I wish you the best on your family’s beautiful journey.
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Hi Jackie! Thank you for writing! I am so grateful for Early Intervention and all of the support and knowledge they provided us. Unfortunately when it comes to being deaf, or being the parent of a deaf child, there is a HUGE divide between the signing/ASL world and the AVT/spoken language and hearing world. It can be quite nasty, and extremely difficult to navigate being a parent of a deaf child, vision loss aside. Unfortunately it also goes as deep as the Early Intervention providers, this divide exists between them, and I hated how uncomfortable it made me feel. I strongly feel as though parents of deaf children should be able to experience both avenues so that they can make the best decision for their child, even more so if there is a dual sensory loss. The family should not be made to feel any shame or awkwardness between providers, it’s not professional, and does not help the family at all, it just adds to the already enormous worry that they are carrying. Again, I am so very thankful for Early Intervention, Rebecca is where she is today because of all of the amazing providers that she was seen by. I do however know it would have made my life a lot easier at the time if some providers could be professional enough to get along and show up to meetings whether or not the other one would be there. It was about Rebecca, ALWAYS about Rebecca, and never anything personal towards a provider. I had to seek out all avenues to know that I was making the right decision.
I am a mother of a deaf child. I live in Eastern Europe. We have here Teacher of the deaf, no AVT or other crazy words (sometimes I wish we have them). I wonder what is Early intervention? In my country, as everywhere in the world, deaf people feel special and they don’t implant their kids. As my family is hearing, no family history of deafness, I didn’t hesitate a minute, I knew i want my child to be talking and listening (just as her brother). We choose the brand Cochlear, so far no problems, but it is a piece of technology, one never knows. In my country, most teachers of the deaf are against sign language. They think it will hold back the child from developing spoken language. In the beginning, I was also against it, because I had problems acknowledging that my child is deaf. Now, 5 years later I feel much softer towards sign language and I would like to learn it one day. For me deafness is a road, every day I learn something new. But most of all, I learned that life is not perfect, but it is just great as it is.