Our Children/Our Stories:
Three Families Share the Spotlight
One of the first things parents of children with hearing loss all do when we get together is to share each other’s experiences. Introductions can take a long time at events, since parents are often hungry to learn another parent’s story! It’s always interesting to talk to someone who has had a similar experience to yours in one way or another. We don’t all choose the same path which is what makes it so interesting to learn about each other, where we’ve come from, and where we’re at now. With this thought in mind, three family stories will be highlighted in this article: these families come from different backgrounds and use different methods of communication. In sharing these stories, we can embrace our differences as well as our similarities. As we work together we can insure the success of each one of our children regardless of the communication method that we choose.
The Williams Family
My son Robert is fourteen years old. He came into our family when he was three years old, along with his brother Adam, who was seven. He has a bone disorder called Craniometaphyseal Dysplasia or CMD. CMD causes an overgrowth of the long bones in his body including his skull. Robert has had several orthopedic surgeries to correct the overgrowth and the problems it has caused. His condition is extremely rare affecting only about 200 people world wide. There is a movie about CMD called Mask that stars Cher. Fortunately much medical progress has been made and Robert has a normal life expectancy. However, because of the overgrowth in his skull, Robert has progressive hearing loss. We knew Robert would have a progressive hearing loss from when he was diagnosed with CMD at age four in 1999. Before that we only knew that he had a bone disorder but didn’t know which one. We have had his hearing checked every six months since that time because we knew that once the hearing loss started it would progress rapidly.
Robert got a hearing aid for his left ear in 2005 and another for his right ear in 2008 and will eventually be considered a candidate for a cochlear implant. We both have mixed feelings about a cochlear implant and will have to make that decision when the time comes. We have also been told about an operation that would remove some bone and insert an artificial piece (wish I knew more details) that could possibly retrieve some of his hearing.
Robert does quite well in school. His teachers are very cooperative about using the FM system, clarifying or repeating instructions, and always facing him when giving instructions as he reads lips very well. We did need to do some battle with his school to get it this way. He reads above grade level and has an extremely active social life. Robert does struggle with feedback in both hearing aids -- I suspect because they are turned up as high as they will go but because of insurance rules he can’t get new ones yet. Talking on the phone is difficult because of the feedback. If anyone has any suggestions for improving that I’d love to hear from them.
The English Family
I have the honor and privilege of being the mom of seven -year-old triplets. I feel so blessed to have each of these special children in my home, and even more so because two of them are deaf.
My babies were born healthy at 32 weeks and stayed in the hospital for four weeks after delivery. Life was hectic, but I loved every minute of it! I was finally a mom, three times over! Life was wonderful and complete.
When they were eight months old, I noticed that my little Ben was not responding the same way that the other two were. He was taken to the audiologist and I was told he was too young to test and to come back in six months. I was told that three different times and on the third visit, this time with a different audiologist, I was told he was not too young to test, and an ABR was scheduled immediately. So finally, at almost two and a half years old, Ben was diagnosed with severe loss, bilaterally.
We had been using sign language due to Ben’s frustration, and he had over 100 signs before we knew he had a hearing loss! At this point, we were thrilled to finally have a diagnosis, and I set out to learn everything I could about deafness and ASL.
The month following Ben’s diagnosis, Colin started changing the way he spoke. At two and a half years old, he was saying and signing quite a few words. With the change in his speech, and having a recently diagnosed deaf brother, I took him to the audiologist immediately. He was scheduled for an ABR immediately, and also was diagnosed with a severe bilateral loss.
Now, I had two children who were deaf, and felt completely overwhelmed. What communication choices should I make? When it came time for school, where will they go? Thus started our journey…
All three of my babies learned signed language as infants, and I didn’t want to drop that. On the other hand, my boys are the only deaf members of out family. We had no deaf friends, we went to church with hearing people, and a hearing community surrounded us. It’s a scary thought to venture into the unknown, and that is exactly what we were asked to do!
Gratefully, we had an excellent PIP advisor who showed us all of our options without bias. She had a great love and respect of the Deaf community and was a fluent signer herself, but shared with us the positives of having a child with oral skills, too.
My decision to use both was based on my children knowing basic sign language, and a deep desire for my children to have a positive and meaningful relationship with our hearing family and friends.
When it was time for school to start, many other decisions had to be made. I felt so unprepared! Unfortunately, many people have an opinion on YOUR children, and they tend to make you feel as if you are raising your child wrong because of the communication decisions that you’ve made. This was the case with me. Colin, having a solid speech base (because he was hearing until he was two and a half), has very intelligible speech, and prefers most of the time to use his voice. Because of this, he was a “prime candidate” for the oral program. Ben, on the other hand, struggled with speech. He used mostly ASL, and struggled with speech therapy and wearing hearing aids. At this point, it was determined that Ben had Auditory Neuropathy, meaning that there was a connection on his brain that didn’t recognize speech the way he was supposed to. As opposed as I was to cochlear implants at the time, I decided to look into it as a possible option.
I did hours of research online, on the phone with audiologists all over the nation, consulted with Gallaudet, multiple Speech Language Pathologists, and many specialists in the field of Otolaryngology. It was a long and arduous process that ending in deciding to implant Ben.
Ben has done remarkably well with the CI, and used both his signs and speech. Colin still used hearing aids, and uses both sign and speech as well. Although both are oral, ASL has played a huge part in our lives. I see how well my boys do, and also how much they miss without the aid of an interpreter. They hold their own when talking to someone who does not know sign language by reading lips, other visual cues, and auditory input, but if possible, they prefer to have the aid of an interpreter. That way, they are receiving input both visually and audibly.
My boys both attend JMS School for the Deaf, and are doing incredibly well. They are both on grade level, and are completely bilingual! I am thrilled with their progress, and couldn’t want for more in their education.
As I said earlier, I am so blessed to have the three children that I have. I am grateful for the journey we’ve had, and for the experiences that will continue.
The Wilcox Family
We were one of the lucky families. Because of Eliza’s other challenges, we learned about her hearing loss when she was only three weeks old. I remember sitting in the audiologist’s office and listening, but not believing what she was saying. Hearing aids? On my baby, no, she will be fine, just like everything else we were worried about. It was at that point, at three weeks old, we decided to use American Sign Language. I knew the basics, milk, more, hungry, nice to meet you, mom and dad, so we just used those we knew from the beginning. We were quickly assigned a deaf mentor, and began the process of learning a new language.
We still went to the ENT and ordered her hearing aids, always holding out hope that she could hear and we‘d not have to worry about all that goes along with hearing aids and testing. We ordered her aids, they were pink, with pink molds - soooo cute! Eliza wore her hearing aids from the time she was two months old until she was eight months old. At that point we had gone through the cochlear implant evaluation process, and anxiously waited for her appointment with the ENT who would give us more direction than he probably even realized. As Eliza’s parents, we both felt that ultimately she would be using ASL for communication, in those gut feelings we just expected that she would not be a candidate for an implant, and sure enough, we were told she has no auditory nerves for hearing!
With that, we sent the hearing aids back, and really began to focus all our efforts on learning sign language so we could teach her. We were constantly bombarded with the research that told us that there is a short window of opportunity to learn a language, and in the beginning it was so stressful! I was able to attend college during the summer to take ASL 2010 and 2020, and we decided to attend the Utah Valley LDS Deaf Ward in Provo. Our language skills slowly improved, but it has been frustrating because finding ASL classes that don’t cost thousands of dollars to take was and still is difficult. Also, there is a serious shortage of deaf mentors, and we have not had one in our home for almost eighteen months.
When Eliza has been tested for her language development, it is always humbling because the areas where she is deficient match the same areas we’re struggling with as a family with this new language. Also, just getting her tested in her language is a major challenge as there are very few standardized tests in ASL. Planning for school is also difficult, because there seem to be limited options. She can attend a regular school with an assigned interpreter, which doesn’t seem fair to her because she can’t communicate freely with her classmates. She can attend a Utah School for the Deaf and the Blind facility close to our home, but their focus is on oral communication which kind of leaves her out. There is also a USDB school in Salt Lake City (JMS), which seems to be the best option for Eliza, but we live in Spanish Fork.
One of the biggest challenges we’ve faced is exposure to sign language on a regular basis. As the mom, I get to be with Eliza everyday, all day and practice, but my husband is at work, and he’s really been frustrated with the lack of immersion. For Eliza, we’ve made sure that anywhere we go, if there is a possibility to have an interpreter, she has one, from the time she was one year old. We believe that she just needs to have the opportunity to see the language, and she’ll pick it up. Having interpreters has also been a challenge, because there have been interpreters who look at this tiny person and say, “Why am I here?” However, when they start interpreting and she responds and answers questions, they realize that she gets it.
All in all, this journey has been a joy. There have been and still are times when it is painful to change the direction our family is going, so that Eliza can have every opportunity to succeed, especially for her siblings, who feel that it isn’t fair to change everything for her. We really try to include them in everything, but when we have to sign, all of us, so Eliza can participate in family discussions, it can be overwhelming. Eliza is three now and just started preschool at our neighborhood elementary with a dedicated interpreter. She has a vocabulary of over 1500 words, and is so expressive and talkative. She is a typical three-year-old who wants independence and control over her world. Now we just have to keep up with her as she learns new signs from school! ~