Unlike many parents, our son’s diagnosis didn’t come as a surprise. We didn’t feel grief, fear or a sense of the unknown--that came much later. Our son, Nathan, was adopted from China with a known hearing loss. At the time, we were told he was four years old, but found out later that he was actually six. How significant his hearing loss was we had yet to discover. Once we met Nathan and brought him home our adventure really began.
We were arrogant and assumed information on raising a Deaf child would be readily available. The soonest we could get Nathan into a specialist was three months after we got home. Nathan was diagnosed with bilateral profound hearing loss; essentially he heard a jet engine as a whisper. Turning to our local school district for information and support, we soon realized that that particular district had even less knowledge on Deaf Education of a child such as Nathan than we did. Getting Nathan tested for placement in school took months. We quickly learned that Nathan had very little language or communication: we were starting at ground zero with a six year old. During this time we used some simple signs at home and tried working with him to understand that sign language was a way of communicating. Due to Nathan’s Chinese culture he did not make eye contact and even avoided looking at us, making teaching him to sign challenging.
For a little over a year, my husband and I fluttered around on the outskirts of information. We found it very difficult to get information since we were long past those “birth to three” parent-infant programs. At nearly every meeting we had some specialist or school employee bring up this program. I so badly wanted to be part of that “club.” Where was MY group? Where was the group for older children diagnosed with hearing loss? How do parents get access to the information given in the birth to 3 programs? For us this is when the sense of the unknown really hit. The system in our state is great for identifying babies with hearing loss. The home intervention system is great (provided one lives in a metropolitan area) for hearing loss identification and parent education for infants and toddlers. They help to transition your child into preschool programs designed for children with hearing loss. Finding resources for a six year old, however, proved to be difficult. Getting entry into the Deaf community with an older child and hearing parents has also been a challenge.
Trying to decide how we were going to raise him was a challenge as well. Should we use ASL, SEE, some form in between, hearing aids or get a cochlear implant? Unlike parents making a decision for a baby, we had a little boy who had thoughts of his own. We also didn’t know anything about Nathan’s medical background: there had been speculation that Nathan perhaps had a high fever, bad medicine or untreated medical condition contributing to his hearing loss. We had to guess about so many things that a birth parent would know.
When we adopted Nathan we thought we’d raise him using ASL, without aids. We were dead set against implants. This was not Nathan’s plan. He had other, definite ideas of his own, asking for hearing aids and later asking for a cochlear implant. He seemed to “know” that something was missing or different from his life – leading us to speculate that he might have heard more at one time. Nathan now uses one CI. Within one year after that implant, he showed three years’ growth in language. We have changed the language used in our home to Signing Exact English, or SEE, to communicate. We are not using ASL as we had once thought we would. Nathan will always be Deaf and need sign support. For now that is SEE. As he gets older we will work with him and our family to transition to ASL. That way Nathan can make use of interpreters, be able to be a part of the Deaf community and the hearing community. The choice is his to make and we want to equip him with all the tools necessary to walk in both worlds.
Nathan is learning to listen and starting to speechread. When Nathan started school we enrolled him in a local Deaf Ed program. They used Total Communication: signing in Pidgin Signed English, using voicing, but at such a wide variety of skill levels that it was inconsistent and unpredictable to him. Far from thriving there, Nathan seemed completely overwhelmed. He still had no language, no social skills and made no eye contact. Everyone was doing something different. Nothing made sense to him and he shut down. He didn’t know how to use the interpreter provided or even why he should. He couldn’t advocate for himself at all. At the end of the year he still couldn’t tell anyone what his name was. At home, we worked with him every day. We read books in sign with him, drew pictures, played games and involved everyone in signing. Our 3-1/2 year older daughter is bilingual and yet Nathan still wasn’t signing. We were frustrated and feeling like we had failed this little guy in a huge way.
In the fall of 2011 we enrolled Nathan at the Northwest School for Hearing Impaired Children in Shoreline, Washington. They used SEE schoolwide; everyone uses the same language. From my research they are the only charter school that emphasizes English through both the written and the signed/spoken form. We have met many families that have moved here to attend this school, including other families that had adopted from China. That October, he made his first sentence – one and half years after he came home.
For the first time since we adopted Nathan we have found a “home.” The school has shared resources with us to help us understand his hearing loss and its effects on education and the implications of not hearing much of what is being said. We are getting help from his teacher on how to parent a child with hearing loss. Nathan is starting to understand that all of the hand gestures do have a meaning and the power and control of his life that comes from communicating with others. His behavior has settled down and he is growing into the polite and kind child we suspected he was. We had been warned in China that he was a difficult child. Wouldn’t you be if you couldn’t make sense of what was going on around you?
Whether you have an infant or older child with hearing loss know this – never give up, be your child’s best advocate and be flexible. What you decide might change and that is okay. Take all the information that people give you – call all the numbers, get involved in play groups, research education options and never be afraid to raise your hand and say that you need help.
Nathan is now eight years old. He has been home two and a half years. He has gone from silence to sound, China to America, gotten a new family, new rules and expectations. He is learning that people want to interact with him. He is important and loved. Nathan has made amazing progress in a short time. Mom and Dad have learned much and are humbled by all that he has accomplished, and we know that he will continue to grow and his needs will change. We are filled with encouragement and hope for the future. While the road before us is still long and winding, we will learn what we need to learn to be the best advocates we can for our son.
QUICK LINKS
Home
