Archive for the 'random thoughts' Category

Alternative alternative communication

March 15, 2013


Chloe is sick today. She’s lying on her mat, and I’ve been trying to overcome the temptation to let her watch TV all day for the second day in a row. But now she’s whining.

“Do you want to watch TV?” I ask. But she’s all the way across the room. We can’t use our usual system, where she grabs my left hand for yes, my right hand for no.

“Smile if you want to watch TV.” Chloe doesn’t smile, she makes an impatient noise and squirms. She knows I know she wants the damn TV on. But I want her to “say” it.

“Okay, move around and make an expression of desperation if you want me to turn on the TV.”

And this time, I get a smile. I turn on the TV.


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.

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.

Babies everywhere

February 11, 2011

I thought I had overcome my problems with babies, but lately I’ve been overwhelmed by sheer quantity. In the past year, about 80% of the reproductive-aged women I know have either gotten pregnant or given birth. Adults are disappearing from my facebook page, replaced by ghostly ultrasounds and squishy newborn faces.

Now, individually, each of these babies is a miracle and a blessing. I really do enjoy meeting them and hearing about them, and sometimes I even like flipping through their pictures. But collectively, these babies are an emotional burden. You see, newborns, and the trappings of newborns, trigger nothing but bad memories for me.

That may sound like an exaggeration, but it isn’t. Chloe’s first year was an unrelenting nightmare of anxiety, pain and disappointment, and baby artifacts will always remind me of that. I can’t look at an infant carrier without remembering those three hour drives to Children’s Hospital, Chloe crying all the way, knowing that at the end of the journey we’d be facing more tests and more bad news. Baby toys are loaded with unmet expectations–every colorful invitation to grab, pull and bite was an invitation that Chloe, paralyzed by her brain injury, could not accept. And I don’t even want to talk about bottles or baby food.

Of course, life with Chloe these days is anything but a nightmare, but babies are also reminders of all the skills she still doesn’t have. By six months, most babies are starting to sit up, eat solid food and crawl, and the speed at which this happens seems cruel to a parent of a disabled kid.

And then there’s the envy. I always assumed, even before Chloe was born, that having any newborn baby was no fun at all, that it was something you just had to endure. Apparently that’s not exactly true, and every glowing facebook post from a new mother or father is a little reminder of what I have missed. A friend of mine said the other day that the first thought she had on seeing her son was “Wow, I like that baby!” My first thought on seeing Chloe: What if she dies?

Like I said earlier, these babies, on an individual basis, are great. I really do enjoy seeing them, holding them, hearing their parents’ concerns about binkies and spit up. But if I seem less than properly sentimental at the next baby shower, or if my eyes start to glaze over while hearing about the wonder of birth or the joy of nursing, well, now you know why.

My complicated feelings about the skulls on Chloe’s pajamas

October 21, 2010

close up of dress fabric, pink and black and decorated with skulls

image courtesy of crafty_dame via flickr

For this entry, I’m going to take a break from the subject of disability and write about something that concerns every parent–kid’s fashion. Recently, I’ve noticed a trend in clothing for small children: death. More specifically, the skulls that once signified poison, pirates and anti-social sentiments have joined the ranks of hearts, rainbows, cars and cute animals as appropriate images for kids to display.

Of course, skulls-as-fashion-accessory is not a new trend.  In Mexico, the Day of the Dead is celebrated with images of every kind of skull you can imagine.  The difference is that these skulls, no matter how jolly they look, clearly signify death.  They are reminders that, no matter what we are doing right now, no matter how loved and important we are, every human being is actually a walking, breathing skeleton, which will spend a lot more time on this earth dead than alive.

Is that what I am supposed to think when I see a two year old in a pink, glittery shirt decorated with a grinning, heart-eyed skull?  Did her mother wake up that morning and think, “I’m going to put Emily in her skull shirt today as a reminder that one day we’ll both be rotting corpses”?  Somehow, I don’t think so.

So where did this skull theme come from?  Like most kid’s clothing designs, it must be targeted at the parents at least as much as the kids, which means that originally, designers were probably thinking about parents who spent their teenage years listening to the Misfits or the Grateful Dead.
Grateful Dead Skull and Roses

I supposed this is just another example of the way fashion evolves over time–things that start out as edgy, images that are associated with strong feelings and beliefs, become familiar and commonplace.  But not all images can or should lose their meaning so easily.  Most people do not wear crosses, Stars of David, or Islamic crescents without thinking about their religious significance.  And can you imagine a swastika, a Hindu symbol that will probably never recover from its Nazi associations, decorating pajamas alongside hearts and rainbows?

What does the skull trend say about our culture?  Have we overcome death, reducing it to a fun hobby, like gardening or bird watching?  Not likely. Maybe, with concerns about healthcare, school shootings, global warming and war looming over us, we figure that if we gloss over death, if we cutesy it up a bit with pink hearts and bows and proclaim that it’s nothing more than a kid’s fashion accessory,  we can reduce it to something more manageable.  Obviously, this plan is doomed.  Just like we all are.  Think about that next time you pull the grinning skull shirt over your child’s own grinning skull.

Updated: okay, so a friend of mine has pointed out that the skull thing was probably started by the Pirates of the Caribbean movies. Duh. Most of this still stands, except that any trend that involved Johnny Depp can’t be all bad, right?

The royal we

August 26, 2010

I don’t think my husband and I are the only parents who referred to our baby in the first person plural (we need a change, I don’t think we like that), but the question is, now that she’s six, why can’t we stop?

The easy answer is that, because she can’t speak and she needs more care than most kids her age, we’re continuing to infantilize her.   That could be part of it, I guess, but I think the truth is more complex.

For one thing, there are regal implications of the royal “we.”  When the queen of England uses it (we are not amused), she is referring to both herself as a person and her separate role as head of state.  When we use it for Chloe, it seems to imply her role as the person around whom our family usually revolves.  So if “we” are ready to go to bed, Chloe herself is ready, but so is Chloe the organizing idea of our household unit.

Okay, but on a less pedantic level, I think it’s our way of acknowledging that we have to speak for Chloe a lot.  When one of us notices something that needs to be brought to the other’s attention, for example, if we’re sitting outside and Chloe is getting hot and uncomfortable, it seems a little rude to say “she’s hot, let’s go inside.”  Saying “we’re hot” as if you are including yourself, Chloe’s official spokesperson, as part of some kind of two-person organization founded solely to meet Chloe’s needs, well, it just feels better.

The downside is that we often end up sounding like the stereotypical annoying nurse who treats everyone like a baby in an attempt to sound caring (we’re recovering nicely from our prostate surgery, aren’t we!).  Hopefully, we will forgive us.

The right thing to say

August 13, 2010

A few months ago, a friend of mine was going through a hard time, and she was getting frustrated with the responses she got from the people around her. “The things people say seem to be intended to make them feel better, not to make me feel better,” she complained. This comment made me think back to my own hard time, after my daughter was born and we were struggling with seizures, medications and diagnoses. Back then, no one could say the right thing to me, either. Looking back, however, I realize that’s because the right thing to say didn’t exist.

It’s kind of an egotistical fantasy that you can say “the right thing” to someone in pain. Wouldn’t it be great if a casual conversation really could lessen despair, grief or depression? It might happen every once in a while, but not on a regular basis. Really, the most you can hope for is not to be offensive. And even this is a challenge, because people who are struggling are easily offended.

I was offended by cards that “congratulated” me on the birth of my daughter, because they didn’t acknowledge how difficult things were. On the other hand, I was offended by people who said “I’m sorry” when I told them that my daughter was disabled, because I didn’t want their pity. I was annoyed at the people who assured me that she would grow out of it, and I was irritated with the people who implied that she wouldn’t. Considering all this, you might think that saying nothing was the safest bet, but the people who avoided the subject of my daughter were the worst offenders of them all. You just couldn’t win with me.

I like to think that, having been through a rough time myself, I’m a little less likely to say the wrong thing. And I have the example of my husband, who always seems to know the right comment to make or question to ask, when to push the subject and when to stay quiet. But I’m pretty sure that all I’ve learned is that, when confronted with someone else’s pain, all you can do is open your mouth and hope for the best.

So much to do…

July 7, 2010

I used to tell myself we didn’t really have it harder than other families. Everyone who has kids has to make appointments, run errands, arrange childcare, etc, I told myself. Since Chloe is our first child, I don’t have much basis for comparison, but as she gets older, I’m realizing that yes, our lives are definitely more complicated. In a Parent Advisory Council meeting once, another parent passed out a “to do list” of extra chores that special needs parents have, and I realized that I had to do most of the items on the list on a regular basis.

It’s summer, and we’re smack in the middle of family visits, vacation trips, and Jon’s busy schedule of summer teaching conferences and workshops. And the to do list goes on. Recently, when Jon’s brother and his family were visiting, I had to schedule time with them around Chloe’s hip x-ray appointment, a meeting with her therapist, a session with the orthodist, and an emergency phone call to the pediatrician when the side effects from her new medicine got serious. All this happened in a single week. The next week, we visited my mom in Portland, Oregon, and in addition to all the limitations that come with a wheelchair-laden vacation, I had to worry about stomach cramps caused by Chloe’s medication.

A friend of mine recently posted a link to “The Spoon Theory” on Facebook, and although I am neither ill nor disabled, I could totally relate. I often tell people I can only plan one big outing per day with Chloe, because I never know when a simple trip to Chuck E Cheese will leave us both exhausted and frustrated. I am constantly counting “spoons,” not because my energy is limited, but because taking care of Chloe demands reserves of strength and attention. If I have a glass of wine with dinner, will I have the energy to lift Chloe in and out of the bathtub? If I stay up late, will I be able to get up at 6 am and do her therapy? Is it worth it to eat out when the experience could involve difficult entryways, a crowded dining room, tiny bathrooms, and the threat of Chloe throwing a boredom-induced fit?

I suppose summertime always makes me a little edgy. While other people are heading to the beach (try that with Chloe’s chair!) or relaxing at the pool (still haven’t found a device that will allow Chloe to swim independently), I’m shedding spoons by the handful.

The Future

June 17, 2010

This is the eve of Chloe’s last day of kindergarten, so I’m in the mood to ponder the future. Of course, pondering the future is an uncomfortable experience for SNPs (special needs parents) because often the future seems like, well, like a black void full of unimaginable perils. Okay, I guess a void, by definition, can’t be full of anything, but you know what I mean.

Kindergarten has been awesome for Chloe. It has been better than we dared to imagine, thanks to her wonderful para, teachers, therapists, principal and the wonderful students at her school. Which means, unfortunately, that our experience with first grade will have a hard time topping it, or even living up. As the kids get older, expectations will be higher and social situations will be more complicated, and unless we find some way for Chloe to communicate more easily, she will be left behind.

As I think about the future, though, first grade is the least of my worries. There are so many reasons to worry about our kids, and when your child has disabilities, you have the same worries, only magnified. For example, what if there is a natural disaster? It’s a little extreme, I know, but after Hurricane Katrina and the Haiti earthquake, it’s hard not to wonder what you would do in that situation. And what would we do? How do you take care of your kid under crazy circumstances when she can’t walk, identify herself, or even sit up? When food is scarce, how do you provide for a person whose food must fit through an opening the size of a juice box straw, and be administered with a special tube?

And even if the world doesn’t end, my world will certainly end one day. Tomorrow, my husband and I will be meeting with a lawyer to write our wills, and we’ll be giving him our list of guardians for Chloe. Of course, most parents want to make sure that their child will be taken care of in case of their death, but for typical parents, this situation is a remote possibility. For us, it’s almost a certainty. If Chloe has a normal lifespan, we will leave her to the care of (hopefully) relatives or friends, and possibly even strangers when we die.

So here at a big turning point in our lives, I’m going to do something I don’t usually do–make a few wishes. I don’t know how I feel about the possibility of wishes/prayers/whatever being granted, and I know I’ve made a few desperate ones that haven’t come true, and a few that have. But I’m willing to give it a try.

1. Let her talk. I mean, using the communication device will do, but it sounds funny and needs charging and programming and will eventually need fixing and replacing. I want to hear my daughter’s voice, hear what’s on her mind. And she needs a voice, some kind of voice, to let her participate in the world.

2. Keep her safe. I’ve learned over the years that her father and I are not the only people looking out for Chloe. Let’s keep it that way.

3. Keep her free. As long as there are institutions in our state, I will worry that somehow, Chloe could end up in one of them. I hope that they are all history by the time she is an adult.

That’s all. If I were feeling greedy, I would pray for her to learn to eat, survive junior high unscathed, and sleep through the night on our upcoming trip to my mom’s house. But that would probably be asking too much.

God gives special kids to special parents

June 6, 2010

Bullshit. Special parents are created. By their kids.

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