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 4^th 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 4^th 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 4^th 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 tried to impart to him the importance of tone while reading, so that he ended up being very good at 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 he could make it have slightly different meanings depending on how he 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 4^th grade. He recently took a test that placed him at a 12^th grade reading level. He was told by the test administrator that he had the highest score she had seen in a 4^th 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 12^th grade with a 4^th 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." 
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 4^th 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!

Who will write for my son?

I asked this question on another blog and received a few responses both there and through email. The question wasn't actually related to the topic being discussed there, so I thought I would open it up here.

Here is the problem. Neal was just tested and found to be reading at a 12th grade level. However, he is in 4th grade, and really, he's immature even for a 4th grader. So, what at a 12th grade level would be appropriate for him to read? Not much I would think. We need more choices for kids who can read above their grade level, but don't need to read about "teenage situations."

Some books that Neal has read and liked include ones by Roald Dahl, C.S. Lewis, Jeanne DuPrau, Suzanne Collins, Stephen Hawking, Beverly Cleary, Andrew Clements, and so on. He also reads biographies and historical non-ficiton. I'm looking for more ideas. Do you have a child like Neal? If so, what has he or she read and liked? Let's start a list!

Swine Flu in the House

I haven't posted here in a while. For the most part I think that's because people who are likely to read my blog already know what's happening in my life through other avenues, so it feels kind of redundant. However, I will post a quick update on the last week living with Swine Flu.

Last Sunday Neal came downstairs and said he had a sore throat. I told him to lay down and rest, never thinking anything remotely close to that activity would take place. The next thing I knew though, he was laying in front of the TV almost falling back asleep. Not a good sign. I took his temperature a few minutes later and it was at 101 degrees.

By Monday it was clear that he was sicker than normal and I made a doctor's appointment for him. He stayed home from school. He was miserable and tired and didn't want to get up to drive to the doctor. When we arrived for his appointment, Neal was coughing. The receptionist took one look at him and said he needed to wear a mask. Neal did not want to put that thing on! The only masks he was aware of that looked like the one the receptionist was offering had put him to sleep prior to cochlear implant surgery, and he wouldn't trust that this one wouldn't do the same thing. Finally I got him to wear it.

In the waiting room, almost every other child was wearing a mask. The one child who wasn't, wanted one too. When we got into the doctor's office, the doctor asked a few questions and decided Neal had swine flu. He didn't do the official test because he said it's a painful, intrusive test during which a q-tip is shoved up the kid's nose about 8 inches (couldn't be that far really, or it would be coming out of the top of the kid's head, but I imagine it's pretty long). Neal was not given any medication. He was not considered to be in the high risk group that would get Tamilflu, even though his cochlear implants put him at more risk for meningitis. That surprised me. I was told to give him Tylenol or Motrin for body aches and fever. As an aside, Tylenol did not bring the fever down, but Motrin did.

Neal's fever lasted for 4 days total. It got as high as 103, but I was told that it would be normal if it got all the way up to 105 degrees. The thing that makes swine flu different than other flu bugs in my opinion is how tired it seems to make the child. Neal slept on and off almost all week, and he is NOT a kid who can usually do that. He tried to go back to school on Friday, but only made it a couple of hours. It is now Tuesday, more than a week since he first showed symptoms and he is back to school, but still coughing.

We believe that Neal infected at least 6 other people on the Saturday before he got sick himself because they all became sick on that Monday. If it was from him, then the incubation period does seem to be about 2 to 3 days, as the doctor had told us.

Having lived through the the H1N1 virus now, I would have to say that it is not a cause for mass hysteria. It is however a flu bug to be taken seriously. Normal precautions should accompany it. The number of people I have heard about with the virus in our particular area is very large, but so far I have heard of no deaths.

Name That Super Hero

Lately Neal has been taking both of his magnets off when he has to do something that scares him. (The problem with him being scared in his own house is a whole other issue that I won't go into here.) He's been doing it when he has to go into areas of the house where no one else is, for example. Big deal, right? But he will take them off and then call to me and ask me a question from that other area. For those reading this who might not know, Neal is profoundly deaf without his cochlear implants. With his headpieces (magnets) disconnected, he wouldn't hear a train steaming through our house. He obviously can't hear my answer! So I get frustrated with him. Last night after an episode of this, I told him I was sick of him taking off his hearing. He said, "But I like being deaf sometimes." Then I watched as the gears in his head started turning. I think there were some major acrobatics going on in there.

His next statements were as follows—with a pause between each for gear turning:

"There are some good things about being deaf."

"And some bad ones."

"It's good that I have a choice."

"It's like a super hero power that I have and no one else does."

I totally understood what he was saying. His line of thinking made complete sense to me and I couldn't help but laugh and tell him he was right. Also, since I'm a sucker for logic, I couldn't stay mad at him. Next, I'll have to have him think of a super hero name for himself. Or maybe you could offer a suggestion…

Going to Disneyland with Cochlear Implants?

I'm going to repost this article I wrote for cicircle.org since I've had a couple of people want to read it and it's easier to have it available here:

You're child just had cochlear implant surgery. What are you going to do now? Well, maybe not right away, but sooner or later you may decide: “We’re going to Disneyland!” You might then ask yourself, “What do I need to know about going to Disney for my child with cochlear implants?” As mother to a son with bilateral cochlear implants who has had annual passes to Disneyland his entire life, I thought I should share my experiences. Keep in mind that I have not had personal experience with the entire range of options available to guests with hearing disabilities.

The first two things I would want everyone planning a trip to Disneyland to know are:

1) Disneyland and Disneyworld are two entirely different creatures. The rides may be the same, but the rules and services are not. Do not make assumptions on how your day will go based on the accommodations you received on a trip to Disneyworld.


2) Disneyland wants guests to use mainstream access to rides whenever possible. There is no Guest Assistance Card handed out for hearing disabilities.

On the second note, while Disneyland does not hand out Guest Assistance Cards to guests with hearing disabilities, they do have several aids available. You can see a list of rides and attractions where aids are available on this page of Disneyland’s website.
You can printout a complete guidebook for guests with disabilities.

You can also take advantage of the Fast Pass option for certain rides. This has nothing to do with hearing ability, but if you use the fast passes strategically, you can spend much less time in lines.

A REVIEW OF AVAILABLE AIDS:

The only aid that my son has personally tried out is the handheld captioning device. At the time that we tried it, we went to guest services inside the park and left a $100 deposit. The cast member who gave it to us had no idea how the device worked, but we figured it out easily. It works only on specific rides and at the end of the day; we decided it wasn’t worth the effort to get it or to carry it around. We’ve never used one again. The captions it provided were not in sync with what was heard over the speakers, and hardly any of the words spoken were included in it. It actually made it more confusing for my son.

Other services you can see on the website, reflective captioning and video captioning are on select rides or shows and you need to contact a cast member at the ride to use them. We have not found the need for them at any of the places where they are available, so we’ve never tried them. They seem to mostly be available for pre-show introductions, and truthfully, my kids do not care about the pre-show introductions. Maybe they would be useful for an adult who needs to understand the rules before entering.

One thing I would like to ask about on my next trip to Disneyland is their written aids. They are supposed to have packets containing dialogue and narration for certain attractions and shows. A flashlight and pencil and paper are included with it. There is no list of which rides and shows this is available for on the website. I’m dubious of the use of a flashlight on a ride or during a show, and being able to read the narration without one seems highly unlikely. Flash photography is usually not allowed on rides, and it can be very annoying when people ignore that rule, so I think I would feel self conscious if I had a flashlight and was reading a script in that situation.

The final option for guests with hearing disabilities is American Sign Language interpretation and amplified or TTY equipped phones. Disneyland’s website says to put in a request for ASL interpretation a week prior to your visit if you want it. It seems you will have to follow a predetermined schedule to use it.

MAGNETIC BRAKES:

Some people have voiced concern over the use of magnetic brakes on some of the rides at Disneyland, and how they might affect a cochlear implant device. Here is the response I received from one Disney Guest Communications Representative regarding this:

“Equipment such as electronic motors and radios that produce electric and magnetic fields are utilized extensively throughout the world and also within our Resort. These fields are generally no greater than you would experience in any urban environment, or may be exposed to through common household appliances such as vacuum cleaners and hair dryers. Although we are unable to give you a list of exact levels for each of our Theme Park attractions, our measurements showed levels below 1 Gauss (0.1/ milliTesla) which are well below the published 5 Gauss (0.5/ milliTesla) level of concern for most medical devices such as pacemakers, cochlear implants, or insulin pumps according to the American Conference of Governmental Industrial Hygienists [1].” The representative also added that a guest should contact their own physician if they have concerns.

PERSONAL ADVICE:

First of all, if your child has other issues along with hearing difficulties, you may be eligible for a Guest Assistance Card. If your child is in a wheelchair, that is definitely eligible. If your child has issues such as Autism, they may also be given a pass. Speak to someone at Guest Services and explain your situation. They will make a determination about your needs. With a Guest Assistance Card, you generally wait outside the regular line. There is no guarantee that you will enter the ride faster, but you will avoid either the stairs, or standing next to large numbers of people, etc. It doesn’t hurt to ask if you think you need this service.

As for riding fast or wet rides with a cochlear implant, my son has been on almost all of them and never removed his processors. He has been on Thunder Mountain, Space Mountain, The Matterhorn, Tower of Terror, Soarin’ Over California, and Splash Mountain. It is, of course, up to the parent if you want to leave the processor(s) on your child, but I prefer to let my son experience the rides in the way he normally experiences the world, which means hearing with his processors behind his ears. We use toupee tape to hold them on, and I bring a sweatshirt or jacket with a hood for use on these rides. (You could also use a CI retainer like Ear Gear, Critter Clips or Magic Fairy BTE guard barrettes to keep your child's CI processor firmly attached to his or her clothing.) When he was smaller, I would sit behind my son or next to him, depending on the ride, and hold the hood around his head when I saw a drop or sharp turn coming. He does it on his own these days (at age 9). I don’t know that the hood would catch the processor if it fell off, but it makes me feel better. It also keeps the water on Splash Mountain from hitting his processors. On Splash Mountain, my suggestion is to ask to sit in the back. While it doesn’t keep you dry, I have been told it gets the least wet, and so far it’s worked for us. Ask the cast member doing the seating for seats in the back and explain that you need the driest seats possible because of medical equipment issues. Of course you can always remove the device(s). If you plan to do that, I would suggest having a predetermined place to keep them. Some parents carry Otter Boxes for this purpose.

A problem you may encounter with cochlear implants is fountains where children play in the water. Especially during the summer, there are areas where children run around and get wet at Disneyland and California Adventure. It’s good to be aware of that beforehand so you can plan ahead to either avoid them, have a case handy for your devices, or take your chances that your processors are water resistant enough.

Another area of concern that I see is overall noise levels in the park. Will your child be able to hear you? Will it be so loud it annoys him or her? When my son was first implanted, we did turn the volume down at Disneyland because he was still sensitive to sound in general. These days, we don’t do anything different than usual, and even though my son is not the most attentive person in general, he hears us fine. He hears the shows fine too. It seems all seats in the theaters we’ve been to in the parks have good access to sound. There are no special seating assignments for hard of hearing persons.

Finally, since many people might be wondering about meals during their trip, my recommendation is for Wine Country Trattoria in California Adventure. It’s moderately priced, relatively quiet, and you get to sit down and be served. Plus it has a children’s menu, and my kids both love it. In Disneyland, my kids prefer the Hungry Bear Restaurant. While less expensive than Wine Country Trattoria, it’s also more work carrying your food to the table and such. The kids like the view of the water from the area though.


CONCLUSION:

Visiting Disneyland is as fun for someone with cochlear implants as it is for anyone else. There are only a few accommodations available for persons hearing through cochlear implants, and there are no Guest Assistance Cards for hearing disabilities. However, based on personal experience, that doesn’t make much of a difference, at least not to a child. Parents need to exercise their own discretion when deciding which rides they want to let their child go on and whether the processor(s) should be left on or taken off, as they do wherever they go. When in doubt about anything on a trip to Disneyland, talk to someone at Guest Services or seek out a cast member at the ride or show you have a question concerning. The information I have provided here is true to the best of my knowledge, but I make no guarantees. Enjoy your trip!


UPDATE:

Since writing this article, we have requested the closed captioning to be turned on at a couple of attractions: Soarin' Over California and the Mission Tortilla Factory to be specific. You just have to ask the cast member nearest the screen to do it for you, and it's actually pretty useful. I don't see why they don't just leave them on all the time.

Neal, down: Jaundice

After Neal was born and fitted in his size six month t-shirt, he joined me in my hospital room. He was more beat up looking than my daughter had been, but I knew he would smooth out. I felt determined that this time around I would be calmer overall, and not too obsessed with every little thing that might indicate a problem with my child.

So when Neal started to look a little jaundice and the nurse told me to give him more to eat to wash it through, I did so without worrying. I took it with a smile when the first nurse (the formula freak) told me that I needed to push formula down my baby to flush out the jaundice. I took it with a smirk when the second nurse (the breast feeding Nazi), scolded me for having a bottle with formula in it and a pacifier next to Neal, and told me to breast feed more often. I had breast fed my daughter and knew that having a bottle or pacifier wouldn’t hurt anything. My daughter had also been jaundiced so I knew that it would pass, even if they needed to put Neal under the lights as they had Audrey.

Looking back now, I wonder if I was a little TOO relaxed. Jaundice can lead to deafness and problems with eye muscles - both of which Neal has. Although Neal did get over the yellow-tinted skin eventually, he never did have his bilirubin levels tested. I stayed in the hospital with him for two nights in order to have some time to rest before going home. I trusted that since the nurses and doctor never ordered the test, it meant that Neal’s color seemed within the “normal” range of jaundice. However, to this day I see pictures of how yellow-orange Neal looked and second guess myself and them. This will turn out to be one of the first “what ifs” in a long list that I have to contend with regarding Neal.

Books as Movies: Taking it to a New Level

In a previous post I wrote about books as movies. This weekend I took that to a new level. I went with Neal to see a live performance of Chitty Chitty Bang Bang. That happens to be one of his favorite stories. He has read the book by Ian Fleming twice; he’s seen the movie a minimum of 25 times (the title song was the first he ever attempted to sing once he started hearing); and he’s seen the live stage version. Now, I’m wondering more than what books others liked as movies, or which they would like to see as a movie. I’m wondering why people want to experience the same story in so many different ways in the first place.

I think for Neal, it’s a simple matter of loving the story and not being able to get enough of it. I thought about it, and for me, it seems to be based on a desire to test human abilities. I want to see what people can do with a story. I want to know if someone can make Katniss in The Hunger Games look like a girl on fire. I want to see how close a car can come to looking like it’s flying on stage. When I read Fight Club long after seeing the movie, I wanted to see for myself how the author managed to keep the reader in the dark about the reality of the two main characters’ identities. Those are just a few examples, but the more I think about it, the more I’m sure that for me, the reason to experience the same thing in many different ways is because I’m curious about human capabilities, not because I can’t get enough of a story. How about you?