The Anderson FamilyWhen my son Liam was born, he was not a very good sleeper. I used to sing You Are My Sunshine to him almost every night. It became our song to soothe and calm his fussiness.
Our road to understanding and working with the Deaf culture is a little different than most. My son Liam was born with normal vision and hearing. Then a little over three years ago, our whole world turned upside down. My then three-year-old son contracted bacterial meningitis and had a right frontal lobe stroke. During his two month stay in the hospital, I continued to sing our song to him, praying feverishly during the last verse, please don’t take my sunshine away. God answered our prayers and Liam survived this terrible illness.
Besides the physical issues from the stroke, the illness left Liam without any vision and a bilateral profound hearing loss. We were not only emotionally devastated by this sudden loss for our son, but also felt alone. This was a very dark time for our family. We did not know anyone who was deaf, let alone blind and deaf. The isolation was palatable. Even though there were many well-meaning friends and family, no one really understood the grief we experienced or how to help us understand and meet Liam’s new set of needs.
During this time, we had Liam evaluated to see if he was a candidate for a cochlear implant. I really did not know much about the technology of such a device at the time, but wanted to try anything that could possibly help. Liam’s left cochlea had completely ossified from the meningitis but his right ear was a candidate. We had to undergo evaluations to make sure our expectations were realistic. While they had never implanted a totally blind child before Liam, they did not believe the risk was any higher than that of any other child undergoing the procedure. We wanted Liam to experience any kind of sound to bring more quality to his life; we truly did not expect much else more out of sheer naiveté rather than true knowledge.
It was around this time that Liam had the honor of meeting Dr. Jan van Dijk, an expert in the field of deafblindness. Dr. van Dijk is not a proponent of cochlear implants for deafblind children. In all his years of study, he has not really seen research to show the benefits of the surgery for this population. For most children who are deafblind, even keeping the processor on was a challenge. Also, the sound is disturbing to many deafblind children. We were so torn. What should we do? Who do we listen to? Liam had the ability to hear before he got sick so we were only trying to see if he could hear once again. I read a quote from Christopher Reeve that helped make this decision for us, “Once you choose hope, anything is possible.” We decided to choose hope and went ahead with surgery. We know our child better than any expert or professional. For Liam, we felt this was the right decision, no matter what the outcome was, we needed to take a chance. We couldn’t do anything to give him any vision back but maybe, just maybe, we could help him hear something again.
Liam had his first cochlear implant surgery exactly a year after his illness. The device was recalled less than a week after his surgery. We did not let this setback derail us from trying again. Three months later he was reimplanted and this time was able to be activated. Most auditory training is visually based, so the road for us has been challenging since Liam is completely blind. We were so eager to get information and find resources to help Liam, but did not know where to turn until we found Wisconsin Families for Hands & Voices at a statewide Family Conference.
The motto at Hands & Voices called to me: “What works for your child is what makes the choice right.” I knew this was a place where I could find some of the answers I was seeking. The choice to implant Liam was the right one for us regardless of what the experts thought. So much information out there was not applicable to our situation, but any place that is so accepting of all methods of communication is a place we knew would be able to assist us. What could this organization offer me? Well, the most valuable resource for us has been the Guide By Your Side (GBYS) Program. This was the support that I so desperately needed at a time when our family felt so alone.
There is a common bond between parents of deafblind children. Yet, many times parents are not able to discover this bond as they don’t know how to find other parents facing similar situations. This organization matched us with a family that is dealing with similar issues with their child with combined vision and hearing loss. The support I receive is invaluable! We share experiences, frustrations, knowledge, joys and-- best of all, I no longer feel so isolated and alone. Our guide also works full time and understands the guilt with trying to fit so much into the limited hours of the evening. Her child is a bit older than Liam. She has given us valuable information on what has worked and what has not. Our Parent Guide has been in our shoes and is helping us as we forge our own path. She works at the Children’s Hospital where Liam gets much of his care, so has been able to give us insights into some of the medical issues that come up. Where would we be without connecting with the chapter, that conference and our parent guide?
Helen Keller once said, “Keep your face to the sun and you will never see the shadows.” Hands & Voices has helped me to keep focusing on my son, who is still my sunshine, and all the positive things we have instead of worrying about the darkness and shadows of the unknown future. I have become an active participant in helping my son and other children succeed. Liam is really making progress in understanding what he is able to hear. Liam enjoys music once again and it makes him so happy. He gets most of his receptive language from the implant.
We remain in touch with Dr. van Dijk, who is very interested in Liam as there has not been much research on children who are adventiously deafblind (those who are not born deafblind) and cochlear implants.
Dr. van Dijk reminds me that quality of life can be summed up in three words, “moments of joy.” Liam is our joy and laughs with joy every day. He is nonverbal from his stroke but is using some tactile sign to communicate. With the knowledge and experience I have gained during the last three years, the position of advocate is one I now have the confidence to pursue. I am so happy that we listened to our hearts instead of the experts and went ahead with the cochlear implant. You know your child better than any professional; never let anyone make you feel bad about the decisions you make for your child. Together we can continue to raise the standard for children who are Deaf, Hard-of-hearing, and Deafblind through communication access and helping them attain a quality of life we know they can achieve.
I am very proud to be representing the deafblind parental voice as one of the newest members of our board of directors. Together we can help our children shine!
H&V Communicator - Summer 2013
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