Saturday, March 12, 2011

The Return of Hope

Our 5-year-old son Ethan has been deaf since birth, and at age 13 months, received his first cochlear implant. One year later, he underwent surgery to get the other ear implanted. He used his hearing incredibly well, until suffering a setback in late June of 2010.

For many months leading up to June, we suspected that something wasn’t quite right with one of his implants. Ethan’s behavior at school had deteriorated and he was very resistant to wearing his right Ci. His lack of ability to communicate made it extremely hard to figure out what was going on and audiological testing created more questions than answers. (Further testing later revealed that the right Ci was no longer functioning but the left Ci remained in good condition.)

Then one day in late June he decided he was done wearing both Ci’s. We tried having him wear just the left Ci, but he would have nothing to do with it. Whatever was going on with that right ear was being generalized to the left side and he would go bananas if we came near him with his processor.

I should note here that typically developing deaf children with Ci’s generally develop very articulate speech and can become excellent communicators. Ethan’s difficulties with language and expressive communication are a result of having autism. He knows hundreds of signs and has well developed fine motor skills, but his brain just doesn’t cooperate. He tries very hard to speak and shows a strong desire to be verbal, but apraxia adds an extra challenge.

This little boy has layer upon layer of communication disorders, but he also has a hard work ethic and a tenacious, strong-willed personality. In spite of everything in his way, he continues to make progress and amazes us every day.

Parenting a child with autism is significantly difficult in its own right, but when your autistic child is unable to hear, you really have to think outside the box. I don’t get his sustained attention long enough to sign a complete thought to him, but luckily he is a reader and loves words, so we’ve capitalized on that as a means of reaching him. It has been the hardest 9 months of parenting I’ve faced in his 5 years, but we’ve finally turned a corner.

After patiently following his lead for several months and using an interpreter at school, we have finally managed to get Ethan to wear his left Ci. He has been hearing for about 3 or 4 days. He had a speech and hearing evaluation this week, after only 1 day of hearing, and completely amazed everyone with his abilities. It appears that he really hasn’t lost any ground at all.

Ethan is dancing to The Wiggles this weekend, and I am imagining all of the ways in which his life, and ours, is about to open up again. 


  1. It makes me wiggle to entertain the possibilities of where he might go from this point on. I hope for you that the past nine months have been a passage to wonderful things to come in the next nine months. I never will tire of saying how proud and honored I am to be your father.

  2. I'm sooooo happy for him...and you! I hope things get easier soon.

  3. The dark moments are so trying. I hope he continues to dance his little heart out and you both get a breather from the overwhelm.