One Family’s Journey

A Learning Experience


By Joan Weir, Connecticut H &V

Will Rode
When we found out our youngest son, Will, was born with a hearing loss, the first thought that popped into my head was “Does that mean his ears are going to stick out?”  My, husband, Jim, on the other hand, spent hours on the internet trying to find pictures of children with hearing loss who looked happy.  “As long as I know he can be happy, I know it will be okay.”  Jim has always been the big-picture member of this relationship.  Will had spent four days in the NICU when he was first born and the hospital almost forgot to tell us he failed his newborn hearing screening.  As we headed out the door, a nurse stopped us with a paper and a number to call for a follow up screening.  When we informed his pediatrician, we were told, “Oh don’t worry.  He probably just has fluid in his ears.”  When he failed the follow-up, we were told, “Don’t worry.  We’ve never had anyone in the practice fail a third time.”  We were given the dubious distinction of being the first.

Myths versus Potential

Although I was a former special education teacher, I had no experience with children with hearing loss and what I was taught in my graduate program easily fit on half a page of a textbook.  I do remember with resounding clarity that one professor said, “I’ve never met a child with hearing loss who could read past a fourth grade level.”  This terrified me.  My family has a love affair with language—my father is an author, my brother is a reporter, my sister was an English professor and my undergraduate major is in English.  We give books as presents, we talk about books, and we talk about language.  We talk and talk and talk.  The idea that my youngest son would not be able to share in our love of books was the most devastating aspect of his diagnosis.  My relief was enormous when his teacher assured me that this is not true and that with proper intervention Will could follow a typical path to language development.  At three and a half, he is testing at about a 24 to 30 month range for language, so his language development is a little slower than I would like but I am happy to report he loves books. He has begun “reading” to Jim at night. He is, in fact, a little obsessed with books.  While other kids sleep with stuffed animals, Will sleeps with his cars and a pile of books.  It gives me great joy.

While I always felt that it was fine that Will had a hearing loss, I would find myself crying at odd times.  I don’t know if I was subconsciously more upset than I realized or if I was just really tired.  I tend to think the latter.  I had three children under the age of five and I was running a daycare/preschool in my house with a minimum of six other children.  For the first year of Will’s life, we averaged two trips to the doctor a week.  In addition, we had an auditory-verbal therapist and a physical therapist who visited Will weekly and a speech and language pathologist for his older brother, Henry, who was diagnosed with developmental apraxia.  Being the guilt-ridden mother that I so often am, I started to worry that my older daughter, Emma, would be adversely affected by all the attention her brothers were getting. I started driving her across the state to a child psychologist who specialized in siblings of children with special needs.  What a disaster!  When I saw my beautiful, gentle daughter attack the psychologist during a play-therapy session, it took all of my concentration not to burst into tears in front of her.  He explained that she probably did not understand why she was there and she was attacking that which she feared.  Jim and I decided that she was better off getting extra attention from us rather than being forced to spend two hours in the car once a week to spend an hour somewhere she did not want to be.

The Things People Say

I was amazed by the reactions I have received from some people.  For the most part, our families have been incredibly supportive even if my mother did call our sign language class “that deaf thing” and my mother-in-law insisted that Will would, “grow out of” his hearing loss.  When we started having sign language class at our house, many of our friends and family would join us each week because they wanted to make sure they would be able to communicate with Will also.  Strangers, however, have astonished me.  One woman looked at Will’s hearing aids and told me, “You are so lucky.  You will learn so much from him.”  Luckily I was too shocked to react because I do not think I would have been very polite.   Many people have assumed that Will is listening to an IPod when they see his very vibrant ear molds. I wonder what they must think of my parenting if they think I would let a child of his age walk around attached to an IPod.   The question that drives me nuts, however, is when a stranger leans in intimately with a concerned look and a hushed tone and asks, “Can he hear anything at all?”  I try to use these occasions to educate but sometimes I can’t resist making a snarky remark like, “Do you think I am hanging the hearing aids on him for decoration?” 

Will’s hearing loss has been a learning experience for all of us.  His brother who is five is starting to connect that Will is part of a larger community.  When we went to Will’s school for a Family Learning Weekend, Henry asked his father, “Do all these guys hear like Will?” Jim explained once again that people are different and that while some may hear like Will, some may not.  That seemed to satisfy Henry although it has not caused him to stop ripping out Will’s hearing aids when they are wrestling.  Emma seems to have adjusted nicely to life as “a sibling of a child with special needs” despite my ill-fated attempts to fix a problem that did not exist.   Jim has met many happy children and adults with hearing loss, so he is happy.  He has also expended a lot of effort to find out what we can do to make sure Will is receiving what he needs to reach his highest potential. As for Will's ears, they do stick out a bit but they are adorned with the most colorful hearing aids I could find and multi-colored, sparkly ear molds.  They are there to help us celebrate who he is and, I must admit, I have fun picking out earmolds as the ultimate fashion accessory.  This works for us.

Looking Forward: Joining Forces

 Will’s hearing loss has given me a new direction in my life.  In less than two months, I will have completed my graduate program and be certified as teacher of the deaf/hard of hearing. The program has empowered me to be an effective advocate for my child and has made me aware of the desperate need for advocates for other parents of children with hearing loss in this state.  We don’t know what we don’t know.  I am so grateful that Connecticut is now a member of Hands & Voices.  I have spoken to parents across the state who have been waiting for this and we are, as this goes to print, eagerly anticipating our stakeholder’s meeting on May 24th.  Together we can make a difference.  As one birth to three provider said when I told her we were granted provisional status:  “It’s about time!”

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