Jan 19, 2010

Cochlear Implants in the Middle of Nowhere

Hello from eastern Montana a.k.a. the middle of nowhere. I am the mother to a four year old, bilateral cochlear implant user and despite having absolutely zero cochlear implant resources in our area, my son continues to excel.

Many of you may be living our same experience, some, not so extreme. We travel 10 hours one way, to Denver, for mapping and Auditory Verbal Therapy (AVT) sessions. There is a CI Center in Western Montana, but nowhere in Montana, North Dakota, or Wyoming can you find experienced pediatric cochlear implant professionals. We rely heavily on online resources, self-education, and we take in as much as possible when we visit our AVT every six months. Our family does not strictly follow the AVT principles, but we continue to receive much support from the AVT at our clinic because of her experience in cochlear implant rehabilitation.

Some families that lack proper resources in their area choose to relocate. We chose not to leave our comfort zone and decided we’d do our best to educate ourselves, our local Speech Language Pathologist (SLP), our local school district, and family and friends, all of whom will contribute to our child’s future education.

Besides the lack of experienced cochlear implant professionals, another huge downfall of living in the middle of nowhere is encountering the unforeseen problems that may arise with the equipment. If maps need tweaking, we can’t just schedule an appointment and go. There was a time when we had to mail a processor to be re-mapped a few weeks after returning home. Thankfully, while at our appointment, we discussed potential problems and the proper way to resolve them. Also, we always need to be financially prepared for an emergency trip and have a travel plan in place. Internal failure or head injury could happen at any time.

After learning of our child’s deafness, we first started learning American Sign Language (ASL). When you have no ASL or Signing Exact English (SEE) educators and you want to teach your child sign language, you, the parent, will be responsible for teaching yourself through books, online sources, videos, or other deaf adults. Our family turned to online resources, such as Lifeprint.com, and we fell in love with the Signing Time videos. In our case, we also had an outreach consultant from Montana School for the Deaf and Blind that taught adult ASL courses.

When we found out that a cochlear implant was a reality for our little guy, we immediately started seeking out oral deaf resources. Our first saving grace was the many blogs written by other parents of CI kiddos. From there, we found an abundance of other online resources, such as the CICircle and Listen-Up Yahoo groups. The amount of information provided by other parents is, at first, overwhelming, but an invaluable tool and very inspiring.

On the activation day, we had our first experience with the Auditory Verbal Method. Many families begin these services, or similar services, shortly after finding out about their child’s hearing loss. By doing so, the family is prepared and knowledgeable by the time the child has access to sound via hearing aids or cochlear implants. Our AV therapist modeled different activities we could do at home and sent us home with some “homework” to complete before our next session.

Other resources suggested early on that we find helpful are the John Tracy Clinic Distant Education Courses and The Listening Room , provided by Advanced Bionics and Dave Sindrey, a certified AVT.

An integral part of our journey was our visit to the John Tracy Clinic International Summer Session. There, children participate in a spoken language preschool designed to identify their strengths and needs and parents participate in an education program to learn about hearing loss, auditory-verbal techniques, emotional support for families, and educational services for their children. We left there feeling armed and equipped to face the world at home where no CI resources existed.

Every week, we attend therapy with our local SLP (Speech-Language Pathologist). There is always a parent, grandparent, or other family member in attendance with the child. We are not there to only learn and progress, but to teach her what we have learned throughout our journey. We know our child better than anyone and we’ve been there every step of the way, paying close attention to all the little details. Our SLP communicates regularly with our AVT and other oral deaf educators, welcomes and uses resources provided by our family, and also uses many activities printed from The Listening Room. Communication among the members of your child’s team is vital, no matter the distance.

As preschool and IEP (Individualized Education Plan) time approached, we found communication even more important than before. We had many consultations with our AVT over the phone, we put our district in touch with our AVT, critiqued the local preschool setting, and spent many hours online researching IEP laws. It is very important to have a good relationship with your child’s educators. Share all of your knowledge and tools regarding cochlear implants and most importantly, communicate regularly. For many teachers in rural places, it will be the first time teaching a child with a cochlear implant.

Our AVT, highly educated in oral deaf education, offered to do an in-service via Skype for our district since no one here has experience with cochlear implants or oral deaf education. On the CiCircle forum, there has been mention of other families participating in remote AVT sessions instead of driving the distance and participating in person. There is not an AVT in every city or even in every state. Click here to find an AVT and ask if they’d be willing to provide remote AVT services via Skype or another web-based conferencing application.

We have found a wealth of knowledge online and we continue to share it daily with our son’s educators and therapists. For more resources relating to hearing loss, please click here.

Despite where you live or the number of available resources, you, the parent or provider, will always be your child’s most important teacher.