Tuesday, July 12, 2011

Team Spirit

My 5-year-old son Ethan is both autistic and deaf. He has the power duo of communication challenges! He was born deaf (due to a CMV exposure in utero) and has been hearing with cochlear implants since the age of 16 months. He became a very good cochlear implant user and loved his hearing. In spite of his significant apraxia, he was starting to sing along with The Wiggles.

Then one of his implants stopped working. The process of its failure seemed to span weeks, maybe months. We’ll never know exactly what happened since he wasn’t able to verbally communicate his experience to us. We just had to watch him slowly and surely reject wearing it altogether. Then he began to reject wearing the cochlear implant on his other ear; apparently he generalized the bad experience from the right side over to the left. We spent 10 months of the past year with him in total silence. Tests showed that the left Ci was in perfect working condition, so his rejection was totally psychological, which is completely understandable! Unfortunately, he lacked the reasoning to be able to understand what had happened to him and as a result developed an intense fear of going to see the audiologist.

Having a young deaf child is actually pretty challenging, but when you add an autism diagnosis to the situation, well let’s just say it’s a wonder that I’m not heavily sedated in a padded room. I spend the majority of my time parenting him solo, so believe me I’m thankful for my coping skills! What a gift. But I digress.

Each person that Ethan works with at our children’s hospital is just incredible individually; they’re all very compassionate, talented, and patient. Lately his audiologist has been thinking creatively about how to make progress with Ethan, so he suggested that rather than bring Ethan to his office, he would travel to see Ethan in one of his speech appointments. Since Ethan has a lot of love and trust for his SLP, we figured this seemed like a decent idea, definitely worth a shot. It has worked like a charm! With the different environment and the addition of another adult to help engage him and keep him calm, we’ve made huge strides! He is now wearing his left Ci and hearing again. After nearly one year of silence, he is starting to relearn how to vocalize speech sounds correctly.

All of this progress is because we have professionals who are willing to try new approaches and who bring incredible levels of patience and persistence to the table. When the people working with your child actually communicate and recognize that ultimately, they have the same goals, a lot of good can come from it. In our case, it has given our son the chance to hear again. 


  1. I want to give your audiologist a kiss. BEAUTIFUL!

  2. isn't it awesome when you have great medical care providers! So happy to read this!

  3. That's so good to hear. Really really. I wish you and Ethan much continued success with the implant and all his other services.

  4. My son is HOH and autistic as well!!! I was just shocked reading your entry because...wow...there are others like us out there! I love this blog, it never fails to give me a jolt of energy and hope (I guess that's the point, isn't it?)
    Glad to hear the speech is making it's way back into the silence. I too am grateful for the amazing pedi audiologists we have encountered in our journey. They have made all the difference for us.

  5. Thank you so much everyone, and Tired Mama, good to have found you! Yes, it does sometimes feel like there aren't many folks in this same boat. I have been a member of so many online groups that focus on hearing loss or autism, but rarely do I encounter someone who is in both communities. It's a tough combo to deal with professionally and educationally as well. There are a great deal of experts in each area, but it doesn't seem like many can crossover.

  6. My son was silent for a long, LONG time. The doctors thought he was deaf and his firsts tests were inconclusive. His later tests revealed he was not deaf, but rather that he chose to be silent, and ignore his environment.
    We chose to teach ourselves, and then our son, ASL. I cannot say enough about sign language. It was my son's way out of the silence. I truly do believe that ASL is a wonderful tool for hearing and deaf autistic children. It is a visual representation of what we are saying... My son learned to speak when he was five after he learned to speak with his hands, his voice followed...I guess it was just faster to say it than to spell it. I tell anyone that will listen, if your child is silent, teach him ASL!

  7. Right on, Brenda! I don't know where we'd be without ASL. Lost. Cochlear implants are miraculous devices, but they don't automatically guarantee language and speech when the patient has other disabilities as Ethan does. We actually went against the grain and advice of lots of parents and professionals when we started signing with him in infancy. But having autism has had a huge impact on his ability to communicate, in any language. We employ visual references like pecs and picture schedules, verbal, ASL, you name it, just in the hopes that it will help him get his message across.