Jan 26, 2010

Deaf Children and Reading

Reading and Deafness: One Mom’s Journey

When I first found out that Neal was deaf, three things were in the back of my mind. 1) I’m going to have to learn sign language; 2) Neal will never attend a regular school; and 3) He’s not going to read above a 4th grade level. (My husband had just finished a mainstreaming course as part of his teaching credential and been given the “fact” that deaf people don’t usually read above a 4th grade level). Of those three, the last one weighed most heavily on me.

I consider reading to be one of the most important skills in life. It was a plan of mine to instill a love of books and reading in my children from infancy. I gave them books as toys so that even before they could read them, they would consider them a fun thing to have around. I chose books that were nearly indestructible and didn’t take them away if my children used them as chew toys. I was even quoted in a parenting magazine on the subject when my daughter was a baby. It was nothing less than devastating to think that my son might be robbed of the opportunity to enjoy reading.

I needed to remedy the problem. I didn’t run to the computer to research the subject. I didn’t even take time to question if the statement might not be fact. Instead I sat down and thought about it. I asked myself, “Why would a deaf person have trouble learning to read? They can SEE the words after all.” I imagined myself reading and then it struck me. When I read, I hear the words going through my head. I sound out any words I don’t know. What if I didn’t know what sound was? What if I couldn’t “hear” myself think? Others could give you statistics or lead you to articles that endeavor to explain why the average reading level in deaf people was thought to be 4th grade, but this was enough for me. It was probably one of the reasons that I was so open to learning about the use of technology to provide access to sound for my son, and why he ended up with bilateral cochlear implants too. Of course that wasn’t the only reason, and of course it wasn’t all just up to me, but it is a good example of how important reading was to me.

So it became a quest for me to make sure that Neal broke that stereotype. In the year between his diagnosis of profound deafness to the time that he finally had access to sound, I used the sign language that we had to read books to him. He showed interest and I made it part of our day every day. Once he did have access to sound, I started using books to help teach him new language. At the urging of the teachers and therapists at his preschool, we made our own “experience” books with pictures and descriptions of everyday activities. I read books to him paying only minimal head to what the words in the books actually said, instead using the words that he was working on at that time that made sense with the pictures. I used the same books with new words added or substituted as time went on and Neal had more language. I read to him for at least an hour per day. We would read up to 20 picture books before bed sometimes. When he was about five years old, I started reading chapter books to him (the Junie B. Jones series by Barbara Park in particular). I could still modify the language as need be (giving Junie B. language much better than she had in print so that he wouldn’t pick up her habits). I found that he could do it. He could listen even without pictures. Soon we moved on to other chapter book series, and before Kindergarten was over, we had read the entire Chronicles of Narnia.

During this time, I also did what most parents do. I started teaching him the alphabet and the sounds that the letters make. I hung an alphabet chart by his bed and we went through it every night naming the letters and their sounds. I went on to teaching Neal sight words, the words kids need to “know” without sounding them out. He was almost through the first 100 of those by the time he started Kindergarten. I really feel that knowing a certain number of sight words was a big help to him. It gave him some self confidence that he would someday be able to read a book to himself.

In Kindergarten he did start reading short picture books to himself. I had him read out loud to me and try to impart to him the importance of tone while reading, so that he ended up being very good what I would call “non-robotic” reading. His reading flowed well. One book I used to help with this was called Hug by Jez Alborough. It has nothing but the word “hug” in its pages, but I taught him how you could make it have slightly different meanings depending on how you intoned it. I also asked him questions constantly about what he was reading and had him make predictions about what might come next, etc.

By first grade, he was already above most kids in his class in reading skills. He read his first chapter book to himself and passed a reading comprehension quiz on it that year as well. I think that was when I first knew he was going to be ok. He would read at whatever level his brain was made for and being deaf was not going to hinder the process.

Neal is now in 4th grade. He recently took a test that placed him at a 12th grade reading level. He was told by the test administrator that he had the highest score she had seen in a 4th grade student. I’ve had several school personnel comment about that accomplishment to me. I doubt that any of them realize what an achievement it really is though. Sure, any parent would be proud of it, but for me it represented the accomplishment of a personal goal for my child. He would not be leaving 12th grade with a 4th grade reading level. Instead he would be doing the exact opposite.

I still read out loud to Neal to this day. I think reading out loud to your child is at least as important, if not more so, than having them read to themselves. I still ask him questions as we go along, but these days it is just as likely to be Neal who asks me a question or reveals his suspicions about where the story is going (and he’s usually right). I have always read books that are slightly above his language level so as to have new language to offer him while doing it. He also reads to himself and has described himself on more than one occasion as a “reading maniac.” He even has his own book review blog these days, which he is quite proud about.

In the end, none of the three things that I first worried about with Neal being deaf have turned out to be true. He doesn’t need me to be fluent in sign language to communicate with him. We still know a few signs and the alphabet, and maybe someday he’ll decide to learn more. But then again maybe Spanish or French will have more appeal to him. He has attended a regular, mainstream classroom since Kindergarten. No different than his hearing sister. And he most certainly will not be reading at a 4th grade level as an adult.

Having a child with a disability sure does open your eyes to what other stereotypes and misperceptions might be out there in the world about other groups, and what a gift that is!

Written by Rhonda Savage (http://www.mamasavage.blogspot.com/)
Neal's blog (http://savagereads.blogspot.com/)

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.