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/)

Becoming an Advocate

Quite possibly one of the hardest things for me to swallow through our first year of becoming parents to deaf children was the average civilian’s lack of knowledge. Though I’d worn those very same shoes for 26 years prior to having my first child, I quickly forgot my own condition, which was weighted with the same ignorance. I immediately began my habilitation as soon as I left the hospital to care for my first child with multiple needs. At first, I admittedly, was quite offended and scared that the entire community wasn’t already prepared for my child. It only took me over-hearing people whisper a time or two, or seeing parents redirecting their children who may have taken a second glance at my child’s hearing device and scared their child may ask a question that would offend us, or worse, that they couldn’t answer, for me to decide, I had work to do. My children were just as much fun, and had just as much ‘kid’ in them as everyone else, and if I wanted my environment prepared enough to enjoy my kids, and not just see them as existing, I needed to move from angry to advocacy. I never wanted another child (or adult for that matter) to walk away from a playground, or a grocery store, or a restaurant, wanting to know what they were wearing on their heads, and not give them that answer.

I began by answering their facial expressions. If I saw someone taking a second look or seem puzzled as they sort through the files in their brain to see if anything they have stored will do as for a label for the equipment seen before them, I'd just speak up and tell them what they were looking at. After I gained confidence with speaking to people about the kids' devices, and saw the interest that others seemed to share, I took a step back and waited for those questions to come in verbal form rather than answering them before they were really there. I wanted to give people a chance to also become comfortable with us, even in a check out line, so my children and I make usual conversation (or sometimes unusual depending on which child starts it) first, without overloading them with information they didn't ask for. If they became comfortable with us as “people” first, then they are more likely to ask their questions should they have any. Even early on, I’ve been pretty adamant about the kids answering questions for themselves. I was more than happy to help clarify any misunderstood speech but I wanted my kids to try and answer questions directed toward them. After all, all that time working on speech and language and what better way to practice but with real time conversations. Now they’ve both turned into their own little advocates by talking to their classmates about what it’s like hearing with cochlear implants, confidently asking for their own repeats if needed, and informing those who begin conversations with them at the beach or pool when they aren’t wearing the processors, that they are deaf and can’t hear without their cochlear implants. My next step would be to have them write their own letters to our state legislators about the state’s poor Medicaid reimbursement for cochlear implant surgery. I’ve already written mine and had all my family and friends help but until I read this story from Lydia, it never crossed my mind to let them write their own. Here’s her story:

Jeremy's Teacher of the Deaf had all the kids she works with in our town (about 5 of them) write letters to our US Representative in Congress in support of captioning for electronic media legislation. So isn't that cool that she's teaching them how to advocate beyond just their classroom? Here's the letter she sent parents (The group, Hearing Loss Buddies meets twice a year and includes the 5 kids who go to 3 different elementary schools. There is one 2nd grader, two 4th graders and two 5th graders in the group):

Hi Parents, During this year, I have been researching information regarding federal legislation to mandate closed captions for web-based media. I learned that in the last Congressional session (110th), Representative Markey (Massachusetts) introduced a bill toward mandating CC for web-based media. No action was taken and the bill effectively died.

Working with the students during Hearing Loss Buddies, they wrote letters to Representative Tsongas explaining why closed-captions were needed. I hope they showed you their letters. As well, I wrote letters to Representatives Tsongas and Markey. I am letting you know about this as you may want to do the same and write a letter. There is no current legislation introduced and these letters urge them to reintroduce the legislation.

Bill Information:
The Subcommittee on Communications, Technology and the Internet is the Congressional committee responsible for this issue. “Rick B” is the Subcommittee chair.The bill introduced during the last session was H.R. 6320, "Twenty-first Century Communications and Video Accessibility Act of 2008." The legislation incorporates the inclusion of closed-captioning of video programming carried over the Internet, as well as expanding the scope of devices that must display closed captions....

Isn’t that a fabulous way to broaden the children's own advocacy skills? That story leads me to a great little poem which Naomi contributed as one of her favorites and I found quite fitting.

IT MATTERS by Anonymous

As I walked along the seashore,
This young boy greeted me.
He was tossing stranded starfish
Back to the deep blue sea.
I said, "Tell me why you bother.
Why waste your time this way?
There's a million stranded starfish.
Does it matter, anyway?"

And he said, "It matters to this one.
It deserves a chance to grow.
It matters to this one.
I can't save them all, I know.
But it matters to this one
I'll return it to the sea.
It matters to this one
And it matters to me."

I walked into the classroom.
The teacher greeted me.
She was helping Johnny study.
He was struggling I could see.
I said, "Tell me why you bother.
Why waste your time this way?
Johnny's only one of millions,
Does it matter, anyway?"

And she said, "It matters to this one.
He deserves a chance to grow.
It matters to this one.
I can't save them all, I know.
But it matters to this one.
I'll help him be what he can be.
It matters to this one
And it matters to me."

I walked through the capitol.
Some parents greeted me.
They were helping legislators
Remember children in all they do and see.
I said, "Tell me why you bother.
Why waste your time this way?
Your issue is one in millions.
Does it matter anyway?"

And they said, "It matters with this one.
Children deserve a chance to grow.
It matters with this one.
There are other causes, we know.
But it matters with this one.
We must help children be all they can be.
Because it matters to everyone
What our future turns out to be.

For some of us, it's not easy becoming an advocate. It takes hearing your own voice before you gain enough confidence to let others hear it as well. We all become advocates in our own ways, whether you're walking into the classroom and talking to the teacher about your child, or walking in and meeting with your state legislatures, you will improve not only your advocacy skills, but your community as well.

Written by Val, mom to Gage (8) and Brook (5), both are bilateral cochlear implant recipients