The Road Less Taken:
Supporting a Deaf Child in a Rural Community
Will she ever speak? Will kids make fun of her? Will she date and get married? Why her? Did she ever hear me sing to her or say, "I love you, Jessie"? Was it something that I did during pregnancy? How am I going to break the news to our family and friends? So many questions and tears came on that second day of January 2000 after our visit to Denver to have our daughter's hearing evaluated. The three and a half hour drive home was very emotional. I cried nearly the whole way. My husband was silent. Jessie continued to be her cheerful 18 month old self in her car seat, oblivious to what had just been confirmed, what we feared and what the future may hold for her.
Through an ABR and an OAE, Jessie had been diagnosed with a bilateral severe to profound hearing loss. We had driven over from our home town of Carbondale, a small town on the Western Slope of Colorado, after our local audiologist had determined a hearing loss through Visual Reinforcement Audiometry a couple of weeks earlier. I felt a sense of relief that my concerns were correct when the initial diagnosis of Jessie's hearing loss was confirmed by our local audiologist, but the realization that my daughter was less than perfect hit me and I began to cry uncontrollably. The audiologist and his receptionist didn't know what to do. They didn't offer any warmth or words of encouragement. They were not used to dealing with small children and their parents. There were few if any children on his caseload of mainly geriatric patients. Growing up in the Roaring Fork Valley and in a small town, I did not know anyone with a hearing loss, at least not any children. Maybe if I had known anyone with a hearing loss, I would have been more aware of the fact that infants could have their hearing tested. Unfortunately, our local hospital did not yet have the newborn screening implemented until after Jessie was born. Her pediatrician, who I later learned had previously worked with two families with hearing impaired children, reassured me that the reason Jesse wasn't responding to sound or talking yet was because she had an older sibling who was doing that for her. That seemed to make sense, but in retrospect, why didn't he just suggest we have Jessie's hearing tested?
I needed someone to talk to-someone who was going through the same thing I was going through. I wanted Jessie to meet other small deaf/hh children just like herself, but there weren't any. There were families whose children were now in their teens and twenties, but no one who I could talk to who was experiencing and feeling and grieving the way I was. We talked about moving to a big city where the resources would be more prevalent and there would be families whom we could share thoughts and feelings. We wanted to connect to other families with deaf/hh children who could be playmates for Jessie.
At this time, we have decided to stay. Living in a rural area requires travel to meet the needs of our daughter. We travel to Denver three to six times a year for audiological evaluations and follow up appointments with her pediatric otologist. We had also been referred to The Listen Foundation, but had to cancel on two different occasions due to bad weather and a family illness. We have yet to get over the mountains to attend a support group or a consultation with them. This past summer we attended the AVI conference in Denver and also Jessie and I traveled to Los Angeles to attend the John Tracy Clinic's three week summer session. I had completed their preschool correspondence course (which was very helpful), and the support and encouragement they gave was just what I needed.
Everyone's schedule has to be considered when making travel plans- my husband's work schedule, my six year old's kindergarten schedule and we also have a two year old son to consider. If we leave our six year old behind, she feels Jessie is lucky and is receiving special treatment to get to go to Denver .
The Colorado Home Intervention Program, the internet and membership to AG Bell, AVI, and Colorado Families for Hands and Voices has helped a great deal in our effort to obtain information and stay in contact with other families and professionals. The staff at John Tracy Clinic continues to provide support and encouragement as well. And it also helps a great deal to have a wonderful speech therapist for Jessie through the CHIP program. She has a wealth of information, experience, knowledge and skill plus she also provides support to the whole family.
While I use the internet to search for information about hearing loss, I have not been comfortable using the internet for online support groups, as I had a negative experience where I felt I was misunderstood by a respondent who was deaf when I posed a question to the online group. I guess living in a rural area, we are just not exposed to the "deaf culture" or the various philosophies of the deaf and hard of hearing, so I worry that I may come across as unschooled. I have not offered any words of wisdom on that particular website since.
Jessie is presently three years old and attends the Montessori preschool three mornings a week. We chose a private preschool setting for Jessie, as it seems to meet her needs at this time. She loves it, and they love having her, but the services are limited. Jessie's SLP visits with her at school one day a week and comes to our home one day a week. She has a teacher of the deaf visit her once every four to 6 weeks for an hour. We do not yet know what the public school system will have to offer Jessie, but we have been led to believe that because we are in a rural area and there aren't any kids Jessie's age with a hearing loss, that we can pretty much ask for what we believe is needed to make her education the least restrictive and most beneficial.
Fortunately, Jessie has made remarkable strides and has really learned to listen and to speak. I sometimes forget she has a disability because she is so oral and tuned in, but then I am reminded by an article I read or a documentary or periodical relating to hearing loss and then I begin to cry all over again.