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?

It's My Blog and I'll Rant if I Want To: The Taboo of Behavioral Medication

“Parents give their kids pills to make them easier to deal with these days.”
“Parents jump too quickly into medicating their kids.”
“Doctors push pills.”
“Schools force parents to medicate their children.”

Have you heard these lines? Are they true? I don’t know if they are. I haven’t done research to find out. But then, as far as I can tell, neither have the people who say them. If you are a parent who has gone the route of medicating a child with ADHD, OCD, Aspergers, or any other such behavioral disorder, I would be willing to bet that you’ve had such things said to you or around you and felt bad, like maybe you let your child down, gave in too easily, etc. That’s horrible. As a parent of a child who is deaf and also has been diagnosed with ADHD and OCD, for which he takes medication, I want to let it be known that I have yet to come across a parent who took medicating their child lightly. If anything, I’ve come across parents who are so afraid of falling into those stereotypes outlined above that they don’t medicate a child that could likely benefit greatly from it.

I was part of a social skills parent group for a while and in that group were about a dozen parents with children similar to mine (except that mine was also deaf, which these people didn’t feel bad for me about on its own, but because they knew it was just one more thing to deal with and they couldn’t imagine having MORE to deal with). In the group, children on medication were the minority. What? No way! A group with kids who had some of the most extreme behavior problems--so bad they were attending groups set up by their insurance company—and not all of the parents were jumping up and down with their hands in the air waiting to get a prescription? That’s right. In fact one of the moms in the group had a child with such severe problems that even my son was astounded by him. She had spent thousands of dollars on those institutes you hear advertised on the radio that are suppose to turn your child around in 30 days with a few magic words and what not; she was attending this parent group while her son attended the children’s group; and she was fighting with her school district to keep her son in class. The one thing she was not doing, because she didn’t want to label her child or turn him into a zombie, was giving him medication. I had to admire her for sticking to her guns, but I also felt sad that society had made medication for behavior problems so taboo that this woman wouldn’t even give it a chance. Maybe her son would respond in a way that could lift half of their worries off of their shoulders. They would never know.

I too was wary of the label and the possible changes in personality that medication could bring on. It took several years of knowing my son had “issues” and trying everything I could to deal with them without medicine before I finally went that route. I can tell you now that putting your child on medication such as Concerta or Ritalin is not a one stop answer to all of your problems. It’s a fluid process. But it also does not cause your child to walk around in a zombielike state or change their personality. If it’s right for your child (and if you are prescribed medication and try it, you will know within days if it’s right or not) it does help relieve some of the stress in your lives and can help your child’s self esteem, since they spend less of their time being chastised for their behavior. While I can’t say what is right for your child, neither can anyone else say what is right for mine. Well, apparently they “can,” but they shouldn’t.

Books as Movies: Picture It

Being a self absorbed American, I have to assume that everyone is the same as I am. That means, everyone who reads a book constantly pictures it as a movie. Every once in a while, I read a book after seeing the movie, or when I already know a movie is in the process of being made from it, which adds a different spin to it, but most of the time, I can’t stop analyzing how good the book I’m reading would or would not play as a movie. Often I get anxious for someone to make the book into a movie so that I can compare how others picture the characters or settings to how I have, or see what someone else thought were the most important parts of the story line, etc. Sometimes a movie is made, and sometimes it turns out just how I pictured it. Other times I wonder if the person who adapted the story even read the book. Below are a few examples of books gone right and books gone wrong as movies in my opinion, as well as the book I want most to see made into a movie right now and why. Please follow up with your own experiences: What book adaptations have lived up to your expectations? Which were the worst? What story are you waiting to be made into a movie right now?

An example of a book that was adapted beautifully to me is The Lion the Witch and the Wardrobe. Of course there were some things in the movie that didn’t follow exactly with what was written in the book, but overall, the feeling of magic and strength translated well on film. Prince Caspian was less impressive to me, but still decent as a movie. I hope that The Voyage of the Dawn Treader does in fact make it to the theater because, of all of the Chronicles of Narnia books, it is the one I most see as a big cinematic experience.

A book that was butchered at the theater recently was The City of Ember. When my kids and I first heard that a movie was being made of that book, we were so excited. It is one of their favorites and seemed like it would be pretty easy to adapt without losing its substance. When I found out Bill Murray was playing the mayor though, I knew it was in trouble. Not because I have anything against Bill Murray, but because they were obviously making a big deal out of the wrong character from the book. I knew it was a sign that it was being taken in the wrong direction, and after seeing the movie, I know now that that was just the tip of the iceberg. Adding a big huge sewer creature to the story? Come on.

The book I have most recently read and would love to see as a movie is The Hunger Games by Suzanne Collins (Do you see a theme here with me reading a lot of young adult fiction to my kids?). As I was reading this book to my son, I actually stopped at one point and said, “I hope this gets made into a movie because I really want to see how they envision Katniss’s dress.” If I were to make a prediction, it would be that any movie producer who reads this book will snap it up. I think it’s got many timely themes packed into it: War and poverty, and the affects they have on kids; Government as oppressor; Reality TV and the dangers of going too far with it, etc. I can just picture it…

Neal, down: An Introduction

I guess I should have known from the start that things were going to be different with this kid. He did give us a sign after all. After being induced for labor, Neal came out fairly quickly. As he was being delivered there was mention that he was large, and his shoulders got stuck for a few seconds (he ended up being 10 pounds 6 ounces and having to wear a t-shirt for 6 month olds in the nursery), but I was good at pushing and he soon made his way out. As I looked down past my sheet covered legs at the doctor who held my new baby boy, I heard, "Oh," and then, "He just pooped on my foot."

I couldn't help but giggle a little on the inside. Little did I know though that Neal's introduction into the world could be taken as a theme of things to come, and that having a sense of humor about it would be necessary at times. Yes, I loved him then, and yes, I love him now, but that little guy has taken a lot of moments in life that should be joyful and found a way to poop on them. He's taught me things I didn't know I needed to learn. He's opened my eyes to parts of the world and life that I didn't know existed. He's made my heart hurt and my head spin. He's made me proud beyond belief and sad beyond comparison. One thing after another I have gone through with him, and what I've been left with is a curious, energetic, handsome, intelligent little boy, who also happens to be profoundly deaf and have ADHD and OCD. He is a boy who has pooped on a lot of feet in his 9 years of life, but who is loved by all who truly get to know him and admired by all who realize what he works through every day of his life.

These days my son has bilateral cochlear implants. He relies on them to access the sounds of our world, and they have made it possible for him to have speech and language on level with his peers. He also takes medication for his impulsiveness and his obsessions/compulsions. His medicine makes it possible for him to continue his education where he belongs academically (with other kids his age instead of having to be placed in a class for kids with behavior issues). I'm sure there are both proponents and opponents to these choices, but to each his/her own. This is what has worked for us. My kid runs on batteries and pills. It's not what I signed up for; it's not what I would have ordered if given a choice; but it's life, and it's working so far.