Deaf/Hard of hearing Plus
Navigating a Dual Diagnosis
By Britney Moell, Washington State parent
After our son Weston was born, life was wonderful, scary, and at times made me question my stamina. Between the sleepless nights and countless medical appointments, I found myself questioning what our future would hold. When we first left the hospital with our son, we were told he didn’t pass the newborn hearing screen. The nurse explained it was likely just fluid and not to be concerned. As a new parent, I found every reason to believe there was nothing different about our little boy—but in my heart, I knew he was not developing normally. He never alerted to sound, was never soothed by our voices, and was slow to babble. We spent the next two months waiting for an appointment with the pediatric audiologist, suspecting it was more than just fluid.
Suspicion or not, nothing prepared me for the day we found out Weston had a hearing loss. It was a long day, and much of it is a blur. That evening, we had plans to visit friends for dinner. As we drove to their house, Weston slept peacefully in the backseat. My husband Brandon, like me, was still trying to accept the news. As he drove closer to our friend’s house, a flood of emotions came over me. This dinner would be the first time we would tell someone that Weston was deaf. Questions flooded through me: How would we explain what we hardly understood ourselves?
I asked Brandon to pull off the freeway. How could I visit with friends and not tell them about the diagnosis? How could we pretend like everything was okay? We parked in an empty parking lot. The orange glow of old street lights spilled into the cab of the truck. Rain fell on the windshield as we sat in silence. I cried. Then I looked behind me to see my son sleeping peacefully in the backseat. It was a kind of hurt I’d never felt before. Through tears I said to my husband, “I don’t want this for him. It’s not fair. Why him?” And like the rational man he is, Brandon calmly said, “If anyone is going to have a baby with hearing loss, aren’t you glad it’s us?” And there it was. A single moment that would have a profound impact on my life. It was like a switch had flipped. “How could this happen?” became “I won the baby lottery”. Brandon’s words would replay in my mind a thousand times over the next year. When, 18 months later, Weston also received a secondary diagnosis of autism, I clung to it as well. That conversation became my anchor. With them, I discovered an ability to advocate and protect that I never knew I possessed.
Over time, Brandon and I became familiar with hearing loss, types of signing, and assistive listening devices. What had been difficult to accept had turned to pride. I was so proud of Weston, so proud of who he would become, so proud to say that I he was my son. We began signing to Weston at three months old. At eleven months, Weston received bilateral cochlear implants. By his first birthday, we finally felt like we had settled in to this “new normal”.
Initially, I think our biggest challenge was communication. From the beginning, we agreed to do everything we could to give Weston access to both spoken and visual language. We didn’t know how, but we knew we had to find a way to give him both. Our home language is English, so I scoured the internet and learned about grammatically-correct English accessible to deaf children through Signing Exact English (S.E.E.). I found Modern Sign Press, and bought a large online order for DVDs, flash cards, story books, and of course a dictionary. We were introduced to a 0-3 early intervention program, Family Conversations, whose staff supported our decision to use simultaneous speech and S.E.E. From the EI program, we received parent support, education, and strategies to facilitate the development of both speech and sign. Before we knew it, we were taking weekly sign classes, attending an intensive weekend S.E.E. Skillshop in Seattle, and teaching our friends and family to sign. Weston sometimes demonstrated his preference for spoken language or sign, and we were thankful that we had chosen to give him access to both.
Just as our confidence was growing, we became increasingly concerned there was more to puzzle of Weston. I vividly remember the first time I searched for “signs of autism” online. I knew something was different about Weston. I battled an inner dialogue every day that went back and forth between “it’s because he has hearing loss” and “this is autism”.
By Weston’s first birthday I knew without a doubt he was on the spectrum. By nine months old Weston had become intensely fixated on spinning objects over interacting with the people around him. He never imitated us, and wasn’t pointing, waving, or clapping by his first birthday. Even after months of signing, Weston had not tried to sign back to us. We sometimes struggled to get his eye contact for even a split second. At 20 months old, Weston received an official diagnosis from an expert in deafness and autism at Seattle Children’s Hospital. Once officially diagnosed, we quickly discovered that there were abundant resources for children who deaf or hard of hearing OR had autism. However, there was little information about children like Weston who had a dual diagnosis of both.
At two years of age, we enrolled Weston in a daily ABA program which helped immensely. As his eye contact and joint attention skills grew, so did his repertoire of signed and spoken words. As he neared three, we explored preschool programs and chose one that uses simultaneous speech and S.E.E: Weston started at the Northwest School for Deaf and Hard-of-Hearing Children this fall. His instructional staff and ABA therapist work together to continue implementing the strategies to maintain eye contact, play with other children, and regulate his emotions. His teacher of the deaf facilitates his ability to listen, speak, and understand and use English.
I still have questions now that Weston is three. What does Weston’s future hold? Will he primarily speak or sign? Will he go to college? Will he hold a job someday? Will he ever be able to live independently? These are questions I ponder every day. What I have learned about autism and hearing loss alike is that no two people are the same. We have no crystal ball or answer book to see Weston’s future–I suppose the same could be said for any child. We rely on Weston to show us the way, and to teach us as we go.
Our son is unique and special in his own ways. Maybe there is another parent who finds comfort that our story is similar. I hope other parents know they aren’t alone in navigating the uncertain path of dual diagnosis. If there is one piece of advice I could give, it would be to allow space for all the difficult feelings. Feel them deeply. Feel the hurt. Feel the sadness. Let those feelings sink in and have their moment. But then, find that strength. You are the perfect parent for your child. You are the advocate they need, and the voice that they don’t yet have. You did win the baby lottery. ~