A Wheel family dinner

March 31, 2012

two parents and two kids eating dinner

This is not my family--we never eat that much salad.

My husband and I both grew up with Family Dinners. Two parents, two kids gathered at a round table, gulping down a square meal. Talking, sulking, laughing, teasing, scolding and trying to enjoy one another’s company. And often succeeding.

So naturally I assumed this is what our family would do. And for a while, we did. Jon or I cooked a meal, dished it out at our tiny table, rolled Chloe’s wheelchair and feeding tube up to one side, and had family dinner.

But a successful family dinner depends on communication, and for Chloe, communication is hard. We tried to include her, asking questions and putting down our forks in order to help her answer them. But there is only so much small talk you can make out of yes/no questions, so Jon and I often lapsed back into “grown-up talk” while Chloe got bored and grumpy.

We kept at it, though, because I thought it was a rule: “good” families eat dinner together, not separately. And definitely not in front of the TV.

I don’t remember how we started watching Wheel of Fortune at dinner time. We’d known for years that Chloe liked it, and for a while, we kept it as a once-a-week tradition, a special indulgence.

These days, however, it’s the norm. Instead of gathering around the table, we line up in front of the TV to watch the daily antics of Pat, Vanna, and a random assortment of letter-guessers.

Chloe likes it when Jon and I can guess the puzzles before the contestants, and she loves when I start yelling “don’t buy another vowel, you idiot, the answer is obvious!” We cheer together when someone wins the bonus round, and grumble collectively when the puzzle includes too many Q’s and W’s for anyone to have guessed.

I like to think that Chloe gets some spelling and vocabulary practice out of the whole thing, but mainly, we enjoy sharing this experience, as a family.

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On Fatherhood and Disability: My Happiest Moment

March 26, 2012

pages from a children's book showing the alphabet

by Jon Medders

A few evenings ago, my daughter and I shared a moment. It was the kind of moment I had let go of. One I thought she and I would not get to share.  My daughter is eight and has cerebral palsy.  She is in a wheelchair, has minimal motor control in her upper and lower body, and she is non-verbal.  This moment I want to tell you about was one of the greatest surprises and delights of my life so far, and it has to do with the fact than she is non-verbal.

Don’t get me wrong: a child doesn’t have to be verbal in order to share many great moments with her.  Chloe and I share almost more joy and connection than a grown man can handle. We share laughter, hugs, books, movies, walks, roughhousing, dancing, music, love, sadness, meditation, prayer, imagination, and a divine appreciation of wackiness in the world.  She teaches me, over and over again, how to jump on her wavelength and stay there and feel timeless.

But I do want to tell you about some of the things we don’t get to share. This is important because, like all parents of a child with a disability, I feel grief.  And grief, if not acknowledged, can turn into darker things, like bitterness or withdrawal.  So I am not looking for any pity, here, just for you to witness a few things that are sad to me before I take you to the moment of delight that I really want to share.

Things I grieve:  I will never get to see Chloe’s first steps, because she will not ever walk.  I will never get to teach her how to catch fireflies or frogs. Or how to defend herself from a bully. I may never get to take her to some of my favorite caves or waterfalls, even ones with hiking trails, unless they are super-accessible. I will never get to listen to her side of the kinds of deep, philosophical conversations I imagined—when my wife was pregnant— having with her adult-self, over wine.  We will not dance, except with me spinning her in her wheelchair (which actually is pretty special).  We will not race on bicycles.  I will not teach her how to build a fire or juggle or make homemade pizza.

These things are sad.  So is this:  until this past week, I thought I would never really know what it felt like to hear Chloe say the word, “Dad.”  But now I do.  Are you ready to share my moment of delight?

Here’s how it went down:  My wife was out of town, and I was feeling especially close to Chloe and kind of nostalgic. At bedtime, instead of reading a chapter book, I decided to pull Chicka Chicka Boom Boom off her shelf, one of a handful of books I read to her at least a thousand times once when she was a baby.

I asked her if she remembered it, and—with her yes-no hand signals—she told me no.  So I told her it was one she loved as a baby, and I read it to her the same way I did when she was a baby, beating a rhythm with my hand and kind of rapping it.  Three pages in, her face was wide with a smile, and her bright eyes showed me that, on some level, she did remember.

As we progressed, we were together on that wavelength I mentioned earlier, and on this evening, it was a little like being bathed in golden sunlight, the happiness I felt in those moments.  And then it got better.  On the inside back cover of Chicka Chicka Boom Boom is an alphabet page.  For old-time sake, we sang the alphabet a couple of times.  I noticed, as we did, that Chloe pointed to some of the letters.

So, then, I asked her to point to some specific letters.  She nailed, “H,” and “Y,” and, “M,” Excited, I asked her if she wanted to spell her name.  She signaled yes, and proceeded to methodically reach her hand directly onto C-H-L-O and E.  We have used letter boards before, but she had never demonstrated such precision.  So then, I had an idea.

“Chloe, is there anything you would like to tell me?”  This is the first time I’d ever asked her such a question.  She smiled, as if she’d been waiting years for me to ask it, and signaled, “Yes.”

So as I held the letter board steady, she made eye contact with me, to make sure I was paying attention.  She placed her hand on, “D,” and then she looked straight into my eyes.   I said, “D.” and she smiled and looked back to the book.  “A.”  Again eye contact.  Again, me saying the letter, and her smiling with what almost seemed like patience.  She returned her hand to the book again, and hit.  “D.”

“You just spelled D-A-D!”  She smiled softly, now, and I could almost hear her thinking, “Of course I did.”  Tears were in my eyes.  “I asked you to tell me anything you wanted, and you just told me, ‘Dad.’ Chloe…this is so special to me…” And then I realized there was nothing else to say, that she felt it all, too and through the tears I started laughing, and so did she.

A few days ago, I believed that I would never know what it would feel like to “hear” my daughter call me, “Dad.”  Now I do.  The more I think about it, if you look closely at the way life works, joy is always right there alongside grief; maybe the two are even made of the same substance.


I know my rights

March 18, 2012

picture of a book with blank pages

image courtesy of Daniel Y. Go via flickr

Chloe’s special ed teacher understands.

“You don’t need that book, right?” she asks at every meeting, at the point where she is supposed to give me yet another copy of Your Rights Under the IDEA.

I don’t know how many copies I’ve received over the years, but I know how many I’ve read: zero. In case you didn’t click the link (I don’t blame you), here’s a sample.

“As a parent you have a right to be notified in writing a reasonable time before the public agency proposes to initiate or change the identification, evaluation or educational placement of your child or the provision of a free appropriate public education to your child.”

I find it hilarious that the first thing this document says is that “in the interests of simplicity, some of the rights have been paraphrased.” So in other words, that’s their idea of putting it simply. (Though I think they meant the language, not the rights, have been paraphrased, since how do you paraphrase an intangible concept like a right?)

I can do a little better: Before the school messes around with your kid’s IEP or changes anything about the way they teach your kid, they have to send you a confusing form letter with a bunch of boxes checked.

Which pretty much illustrates the real problem–even if they are stated simply, the legal rights of a special needs parents when it comes to getting your kid educated are still dizzyingly confusing.

Booklets, form letters and legalese don’t make your kid’s education better, they just give you a basis for complaining when things aren’t working.

When it comes down to it, these are the rights that count:

  1. You have the right to find the people who will be the most capable of understanding and teaching your kid. You have the right to make sure they are the ones who are in charge of her education (as long as you remember to use the words “most appropriate placement” not “best teacher” or “that school with all the iPads”).
  2. You have the right to do the research, read the literature, attend the workshops, learn the language and employ all the psychological and Vulcan mind tricks you can to get what you think is best for your child.
  3. You have the right to throw around the terms “least restrictive environment,” “inclusion,” “research-based teaching methods,” and “my lawyer” until you have sufficiently intimidated whatever bureaucrat is causing trouble.
  4. If all else fails, you have the right to be open-minded, get a third party opinion and look at the problem from a new perspective, or
  5. You have the right to sue the heck out of your school or
  6. You have the right to move to a different, more enlightened school district, city, state or country.
  7. You have the right to throw away that stupid booklet.


Severe

March 10, 2012

picture of a tornado siren

image courtesy of wonder_al via flickr.com

“Pretty much all kids with disabilities are in mainstream classes these days,” a special ed teacher said to me once. “Well, except for the severe ones, of course.”

She had never seen my daughter. A different special ed teacher took one look at her and said “She’ll be in my self-contained class one of these days. I teach all the severe kids.”

What makes Chloe severe? It’s hard to pin down, but I think mainly it’s her difficulty communicating. The fact that she can’t talk or type. The fact that, in order to take part in a mainstream classroom, she would need a lot of support from thoughtful and creative professionals.

And that’s exactly what she has. Chloe is doing great in second grade (her third year as part of a regular class). She does the same homework, takes the same tests, gets exposed to the same learning opportunities as the other kids. She even had a speaking part in the school musical, with the help of a recorded message and a large button.

So while our school district tends to judge kids like my daughter pretty quickly, to assign her to the self-contained classroom at a glance, I’m happy to report that it didn’t take much to dismantle these assumptions. All the people we worked with were very open to trying something new, to giving my daughter a chance, even though she is “severe.”

So in the end, what does that word even mean?


Behind the curtain

February 18, 2012

As Chloe gets older, she’s gotten more interesting, as tends to happen to most of us. But it’s also gotten more frustrating, to me, that she can’t talk.

This isn’t because it’s hard to communicate with her. As I pointed out in the previous post, Chloe can tell us a lot of things with our various communication methods. She can even name her dolls by spelling out names, letter by letter. (Her latest acquisition, a princess doll, is named Hiebrow–apparently she learned the word at school and knows the meaning, if not the spelling exactly.)

What I’m missing are the random thoughts, the casual pearls of wisdom that are attributed to my friends’ children day after day on Facebook. I want to know Chloe’s perspective on everything, because I’m sure it would be fascinating. Partly, yes, because she’s my kid. But there’s more to it. Chloe’s experience growing up with a severe disability has given her a complicated and unusual perspective on life and I’m dying to know the details.

There’s a paradox here, because i believe it’s exactly this inability to express herself that has made Chloe so incredibly patient, empathetic and resourceful. This amazing person is developing behind a curtain, hidden from the rest of us, but it’s the curtain itself that makes her so extraordinary. We’re moving it out of the way, inch by inch, and hopefully one day we’ll see the all the awesomeness in there.


Binary Code

January 16, 2012

You’ve probably heard of binary code, strings of ones and zeros that live somewhere inside all our computing devices. But have you ever really thought about how incredible it is that an infinite amount of information can be generated from a simple choice between two options?

Ones and zeros aren’t the only form of binary code. A binary code can consist of any two elements–the smooth or raised spots on a sheet of Braille, for example, or the sequences of taps and silences that make up Morse code. Or the yeses and no’s of a game of 20 questions.

At our house, we play 20,000 questions, stringing together ones and zeros to form the words and ideas Chloe has no other way to express. This system has its limits, of course. Unlike a computer, we can’t process long strings of binary code fast enough to produce and understand everything Chloe might want to say, but using two choices (two hands, two sides, left and right) in combination with facial expressions and a little vocal prompting (from Chloe, when she has something important to say), we’ve been able to learn a lot that we wouldn’t otherwise know. For example:

  1. Her current favorite Disney movie is The Little Mermaid. This has recently beaten out Tangled, which made her cry every time she watched it. That was part of its appeal.
  2. Chloe would like to grow her hair out, after going through a short hair phase. She is willing to put up with me putting her hair up every morning, even though this is really annoying. Plain hair bands are fine, she prefers them to fancy bows and ribbons.
  3. Chloe’s favorite color is yellow, though purple is a close second.
  4. Chloe wants to expand her collection of Groovy Girl dolls. She likes to pick them out herself (using our binary code system) and yes, she does plan to start at the top of the Groovy Girl rack at the toy store and work her way down until she has them all.
  5. Yes, Chloe’s parents have been known to embarass her in public. And although she has heard reports of her parents being embarassed by their parents, Chloe has never found her grandparents to be a source of public embarassment.

I introduced this system when Chloe was two, and she caught on right away. For our family, it’s meant the difference between interaction and silence. Chloe can tell us what hurts, whether she’s sick, what and how much she wants to eat, where she wants to go, how she wants to play–all with two choices and simple hand gestures.

Sometimes I wonder how many other people out there are trapped in silence, because no one has found a way to let them make choices. It only takes two.


The small town of Special Needs

December 10, 2011

main street of a small town

image courtesy of incendiarymind via flickr

It’s been a while since Chloe participated in Miracle League baseball. On the surface, this is because of logistical challenges, but really, it’s because I never imagined that motherhood would involve hauling my kid to a team sport every Saturday, and I’m still trying to come to terms with this.

Obviously, I was fooling myself. My husband played just about every sport there was, and my brother even did his time in Little League. But I guess I thought my unathletic genes would win the day, especially if we had a girl. And when we had a girl with a significant physical disability, well, I thought I was completely off the hook. Listening to the tormented shouts of parents in the soccer fields behind our house, I always thought, “at least I’ll never have to do that.”

But I do have to do that. And yes, I’m very glad that Miracle League exists so Chloe has a chance to play baseball. But here’s the thing: that’s her only choice, baseball. If she didn’t have a disability, she could play soccer or rugby or  do yoga or hip-hop dancing or whatever kids are into these days. Or she could do none of these things. But she’s a disabled kid, and around here, disabled kids, they play baseball.

We live in a medium-sized town, but as a family with a disability, we also live in the very small town of Special Needs. As we look for services that are accessible and appropriate for Chloe, our options shrink to small-town size. In Special Needs, there are only a couple of schools. There are only a couple of doctors and dentists, and there are no summer camps or drama camps or art programs. In Special Needs, there are very few play grounds, and most of them don’t have swings.

It’s not anyone’s fault that the town of Special Needs is so limited. After all, it has relatively few citizens, and every year, it expands and adds more opportunities. But it’s still a small town, and small towns can be stifling.

In a larger town, you get the benefits of a diverse population. You can be exposed to different lifestyles and cultures, but you also have more opportunities to find people and organizations who share your values. In a larger town, parents who are looking for something out of the ordinary, something that caters to their artsy or literary or just plain kind of oddball values, can find places where other weirdos like them gather and begin the process of molding their kids into future high school newspaper editors or drama club members or viola players.

But in Special Needs, everyone plays baseball, so baseball is what you get.


What are they teaching in school these days?

December 5, 2011

a student completing a "school bingo" form

image credit: Neighborhood Centers via flickr

Helping Chloe with her homework sometimes takes me back to my school days…when more than one teacher accused me of “asking too many questions.” And since Chloe can’t ask questions, I feel compelled to ask them for her.

Like right before Thanksgiving, when I wrote a note on her worksheet. The assignment was to cross out words that don’t belong in an rustic outdoor autumn scene. “Considering that the copyright date on the bottom of this worksheet is 1990,” I wrote, “I assume the word ‘telephone’ is meant to be crossed out. However, these days, when phones go everywhere and are often a family’s main picture-taking device, I think a phone is quite appropriate here.”

I guess it was more of  an observation than a question.

This evening, we read a page from a book that came home in her backpack. It has a big eagle on the cover, and the first page explains that “the people who started this country wanted freedom for everyone.”

“Well, that’s certainly not true,” I said to Chloe, and explained that it took 85 years before the United States managed to abolish slavery. Then I tried to explain what, exactly, “freedom” meant.

“I guess one of the most important freedoms we have in this country,” I said, “is the freedom to form our own opinions and explain them to people. Not everyone has that freedom.

“And that’s the most important thing you can learn in school—how to think critically and form your own opinions. Unfortunately, they don’t usually teach that until maybe college. And then it’s often too late.”

Chloe can’t do much for herself, but I’m determined to make sure she can think for herself.


Oldies but Goodies

November 21, 2011

This week, I thought I’d dig to the bottom of my blog and bring some old posts up to breathe a little:

1. 5 things doctors won’t tell you about your special needs child

2. The wheelchair discount

3. Don’t welcome me to Holland, lady

4. The right thing to say

5. To walk or not to walk


What’s wrong with you? (The best conversation of our lives)

November 12, 2011

a series of icons depicting various disabilites, young children and a smiley face

image courtesy of hugovk via flickr

I am always aware of how people perceive my daughter.  Most adults smile at Chloe and talk to her like she’s a regular kid. Regular kids, on the other hand, are less reliable.  Parents of disabled kids live in fear of the day when that precocious five year old swaggers up and demands, “What’s wrong with her?”

Something like this happened to some friends of ours.  She and her son were in the grocery store when a little boy appeared in front of them.

“Why’s he in that…thing?” the kid asked, pointing at the wheelchair.

“You need to learn some manners,” my friend snapped, and pushed her son away.

Experiences like this break a parent’s heart, possibly hurting us more than they hurt our children, at least when they are young and don’t understand the degree to which they are different from other kids.

How can we explain that their very presence makes people confused, that for the rest of their lives, they will face stares and rude questions?

For a while, I assumed that when a kid asked me “What’s wrong with her?” I would reply that there was nothing wrong with Chloe.  But when I really thought about it, this seemed ridiculous.

“There’s nothing wrong with her” is exactly the stupid kind of adult remark that kids see right through.  Because there is obviously something wrong with Chloe.  A brain injury is wrong–one of the many things, big and small, chronic and temporary, physical and emotional, that go wrong with all of us.

One day, when Chloe was about four, we were at the grocery store.  Chloe was in her usual position, lounging in her wheelchair and surveying the world around her.  As we cruised past the bread aisle, I heard a small voice say, “What’s wrong with her?”

I turned around to see two kids, a tall black kid who looked about ten years old and a tiny blond kid, dressed in a basketball shirt that came down to his knees.  The blond kid hesitated before speaking again, and his friend stared at the floor, embarrassed.

“I mean, why is she in that wheelchair?”

I turned Chloe’s wheelchair to face them.  She grinned at them, and raised her arm in an awkward wave as I explained cerebral palsy.  “So her mind is just like yours,” I told them as they listened politely, “but it’s hard for her to make her body do the things she wants it to do.”

The blond kid nodded.  “So you mean she’ll never…” he paused again, as if he wasn’t sure he wanted to ask his question, and my mind raced, wondering what he was going to say.

She’ll never go to college?  get married? have a job?  Of course, I would tell him she could do any of these things if she wanted to.  I wouldn’t admit they were questions I wrestled with every day.

He took a deep breath and finished his question.

“She’ll never run track?”

I grinned.  “No,” I admitted.  “She probably won’t run track. But then, lots of people aren’t that good at running track.  I can’t run track.”  The boy gave me a pitying stare.

“You know,” I continued, “Chloe’s not the only person who has challenges. Everyone has something that’s hard for them.”

The other kid smiled.  He had been standing there quietly the whole time, and now he held up his right hand, which had been out of sight behind his back.

“I’ve got this,” he said.  His hand was very small, and some of the fingers were missing.  The fingers he did have looked incomplete, and they were fused together.  The skin on his hand and across his wrist was tight and shiny.

“Exactly,” I said, and we grinned at each other.

The blond kid thought for a minute, trying to pinpoint his most impressive disability.  Finally he looked up.

“I’m short,” he declared.  He was short, about half the height of his friend.  Before he started talking, I had assumed he was younger than the other kid, but now I figured they were both about ten.  The track thing was making more and more sense.

“Yeah,” I said.  “See, we all have things that make us different.”  I smiled down at Chloe, who grinned back at me.  The four of us stood there for another minute, feeling a little awkward, but not quite ready to go our separate ways.  Finally, I put my hands on Chloe’s wheelchair handles.

“Well, it was nice talking to you,” I said, as I turned her toward the milk aisle.

“Yeah,” said the short kid.  His friend smiled and waved. As Chloe and I walked through the store, finishing our shopping, I felt a little giddy.  Maybe that kid’s question was rude.  Maybe someone should have taught him not to go up to strangers and ask “What’s wrong with you?”

But I was happy that no one had, because thanks to that kid and his rude question, Chloe and I had just had one of the best conversations of our lives.


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