You know your child the best…

My name is Laura Fornal. We live in Wheaton, a suburb west of Chicago. My husband, Joe, and I are hearing parents of two profoundly deaf children. My daughter, Sarah, and son, Mark, were born in 1994 and 1996. Newborn hearing screening was not a law in Illinois.

The only concern we had about Sarah was that she was not speaking by age two. My pregnancy was normal. She had no serious illnesses. Her pediatrician suggested a hearing test at a local clinic. Because Sarah was so visual, she fooled the audiologist to a near-perfect audiogram. It was then diagnosed that she had some sort of speech delay. I began investigating outside speech therapy. After many phone calls, I found that our special services, through our local school district, would offer speech therapy in a preschool program for free when Sarah turned three. How could I pass that up? Free therapy at a school just around the corner! Soon everything was in place. We just had to wait for her third birthday. However, relatives continued to voice their concerns about her hearing. I kept referring to that first audiogram. As fate would have it, my dad worked at a church in Elmhurst. Child’s Voice rented their school building. Child’s Voice is an oral school for deaf children. After talking with the director and visiting some of the children, Dad urged me to meet with her. I finally relented. We were there about five minutes and the director wrote down the phone number of an audiologist at Children’s Memorial. Again, I mentioned the near-perfect audiogram. The director was insistent, “I know something is wrong with her hearing! Call them today!” Perhaps because of her urgency, I thought a second opinion couldn’t hurt. January 1997. Booth testing again, but a little differently. Instead of one audiologist, there were two. One kept Sarah focused and one ran the test. This made all the difference. Sarah was diagnosed with a severe to profound loss. Shock! Anger! Sadness! They talked about fitting her with hearing aids the same day. Sarah had lost almost three years of hearing! Hearing aids?? For children?? I thought the only people who wore them were senior citizens! They gave me packets of information. My family and friends were supportive, but I found what I needed most was to contact people who had been through it. I called every organization that I could find in the information packet. Although the info was plentiful, I longed to feel like I wasn’t alone. Due to privacy laws, names of other parents couldn’t be given out.

The audiologist suggested that I choose a education method: ASL, Cued, Oral, Total Communication (TC)??? Where do I begin? Sarah would turn three in March. This gave me two months. I contacted the school district. We decided to try TC. Luckily, the preschool class where Sarah would attend was at a school five minutes from our house. Do you remember your first IEP meeting? I often ask parents. I felt so unprepared! I was. Sarah attended preschool for a month and a half until they were out for the summer. The biggest hurtle was the bus. She had never taken one before, and it was very difficult to get her to understand. She was terrified. Her teacher worked out a picture board with the bus, school and home. She was able to reverse the photos to understand the purpose of the bus. This is one example where, if Sarah had started to learn sign language at an earlier age, she wouldn’t have been so confused.

A few months after Sarah had her hearing test, the audiologist recommended Mark have one too. He was eight months old. We were able to do an ABR (auditory brainstem response) test on him. Imagine my shock when he also tested severe to profound. Denial. Exhaustion. Here we go again! At least, we were able to detect it early. Hearing aids were also fitted for him. I had a difficult time getting him to wear them. He would continually pull them out and teethe on them. I could only get him to wear them continually when he napped. Mark was enrolled in a parent infant program. We met one on one with a teacher. I was able to get some support and began to learn some things about deafness.

Sarah continued in the TC program until she turned four. We began to research the cochlear implant. Her signs were coming along, but she did not respond to sound. All she did was make ahhhhhhhhhhh noises. We attended cochlear implant seminars. We did not make our decision easily. The implant team made it clear that it was not an instant cure for deafness. A lot of patience and therapy lay ahead. But, that wasn’t much different from a future without the implant. Sarah was implanted with the Nucleus 24 shortly after her fourth birthday. The surgery and recovery went better than I ever dreamed. Sarah was connected on April 1998. There were a few responses but the audiologist programed conservatively. About two or three months later, she began to respond to environmental sounds. This exceeded my expectations! At Sarah’s IEP, we decided to have Sarah attend Child’s Voice. With her cochlear implant, we hoped she would learn speech. She attended for two years and made amazing progress. I clearly remember the day she came home from school and said her name. I hugged her, cried, called my husband. As she began to process sounds, the words began to come naturally. Her progress continued, but she was still behind her classmates. It was decided, I felt too soon, that Sarah continue her deaf education elsewhere. That meant return to TC or try Cued Speech. We looked into both and reluctantly decided to return to TC. I was so afraid that Sarah would lose the speech she had to sign. Determined to not let that happen, I worked with her at home emphasizing speech. I can honestly say that our hard work has paid off. Sarah is mostly oral. She attends a self-contained TC fourth grade class at Highland School in Downers Grove. She is mainstreamed with an interpreter for science, social studies and the electives. She is part of the student council and an after school helper. She is active in Junior Girl Scouts at her home school. Our goal is to mainstream her at her home middle school.

Now, back to Mark. After we began to see progress with Sarah’s implant, we decided to implant him before he started school. Mark was implanted at age 2 1/2 with the Nucleus 24. He attended Child’s Voice school in the fall when he was three. However, we had some programming problems with his implant. We thought he could hear, when he couldn’t. He fooled everybody by using his visual abilities. After a year of little progress, we placed Mark in the TC preschool program. We began to see very slow progress with his speech and sign. Mark is consistently inconsistent. It is hard not to compare him with his sister. But this showed that every child is different. He continues to make slow and steady progress with sign and oral. “Mommy, Mommy, Mommy.” is repeated several times a day. He says several other words, but no complete sentences, yet. He attends a TC second grade self-contained class in Winfield and is mainstreamed for the electives. He helps out with an after school sign language class and is active in Boy Scouts.

My advice to parents is get involved. Ask questions. Visit schools. Look into all the communication options. Seek out support groups. Hands and Voices is a wonderful group to start with because of its non-bias. Meet deaf adults. Attend deaf events. Go to board meetings. Keep in contact with your child’s teacher and speech therapist. Get together for playdates with classmates. Visit your child at school. If you’re not comfortable with something, do not be afraid to speak up. Talk to your school district or program director. You will have a lot of decisions to make for your child and more prepared you are the more confident you will feel. You know your child best that makes you their number one advocate.

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