Inner beauty, outer beauty

Posted on May 22, 2012 by

I haven’t put much stock in my kids looking picture-perfect. Sure, I can be as much of a sucker as the next person for a really cute outfit from time to time, but I struggle personally to not fall into the pressure of conventional beauty traps — especially gender ones — and had planned to raise kids who felt comfortable valuing beauty on the inside more than their clothes or their hair.

Some days, my daughter goes to school looking like a hot mess and I have to admit I’m proud of it. A striped pastel short-sleeved shirt, hot pink fleece pants, a painter’s cap and a bunch of ponytail elastics as bracelets. She is a site to behold, and I like that she’s figuring out her own style and learning what she likes. “How do I look?” she’ll ask with the total confidence of someone who expects only admiration and praise. Sometimes I reply with a phrase I borrow from a friend when it comes to these complicated outfits: “That’s a lot of look.” But most often, I tell her she looks great.

When it comes to my son, who has a developmental disability, I’ve paid even less attention, if that’s possible, to how he looks. His genetic syndrome, in addition to behavioral and medical challenges, also brings physical characteristics which are, shall we say, congenital anomolies. Some people would call them birth defects. Others would call them dysmorphic features. I wouldn’t. I think he’s beautiful just the way he is, of course. Because he personally doesn’t seem to care much about what he wears, it’s very easy in the hustle and bustle of everyday life — and let’s be honest, I’m chronically exhausted — to not pay attention to the details of the fit of his clothes, how overdue he is for a haircut or how fashionable his sneakers are.

But I’m re-thinking my position how much attention we should spend on appearance.

A month ago I found myself at a Tommy Hilfiger outlet buying the perfect skinny jeans (for those of us with failure-to-thrive kids, skinny jeans are a real gift!) and a beautiful plaid shirt that fit him well and looked super cool. Aviator glasses (which he proceeded to break in one day, but they were only $3) completed the look. Maybe it’s not your idea of style, but he looked significantly better than when he wears his washed out t-shirts and sweat pants.

Then a couple of weeks ago I was telling a colleague that I had signed up both kids for soccer. She asked if I had gotten my son a “proper” soccer uniform. “These kids don’t care,” I said. “They can just wear street clothes.” But with her urging and on reflection, I realized that there were a few kids who were wearing soccer clothes, and that my son had maybe even more a reason to have them than anyone. So to the sporting goods store we went.

Now I’m on a quest to find the perfect hairdresser — someone who isn’t just patient and kind toward him, but someone who loves cutting hair really well and will take on the challenge of finding a flattering style that works with his hair and his head shape, which is a little special, just like him.

It feels a little weird, all this concern with looks and being cool. As with so many things, being a parent of a child with special needs is making me do things, say things and think things that I never expected. Maybe inner beauty is more important that outer beauty. (Although I’m beginning to wonder if I just don’t appreciate outer beauty because it’s not a quality I possess.) But then again, why shouldn’t he get the chance to be beautiful both inside and out, too?

Posted in special needs parenting | Tagged , , , | 6 Comments

The Birthday Girl Gives Everyone Else a Gift

Posted on May 16, 2012 by
birthday cake

birthday cake (Photo credit: freakgirl)

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful moment we both had last summer – the Birthday Girl had never seemed particularly conscious of his differences.

Based on my observations of the Birthday Girl and my son together, I assumed that my son would just blend right in with this group of fifteen birthday-horn-tooting, sugar-high seven-year-olds. Boy, was I wrong.

It hadn’t occurred to me that because this party was in another town, many of the kids attending wouldn’t have met my son before. In fact, I wonder if many of them had ever met any child with a cognitive disability as great as his before. It made for an interesting party.

A few minutes after we arrived, the kids were invited to sit at the large dining room table for pizza. At the head of the table, the Birthday Girl had set a place for herself and my son, and insisted that he sit next to her. On either long side of the table, many pairs of eyes stared at him, curious about this boy who moved differently, talked differently, and looked very different, too. They weren’t rude, just quiet and clearly very curious. I tried to facilitate somewhat but was really at a loss as to how to turn this in to a teachable moment.

After pizza the kids went out to the back yard to play for a while, then came back in to have cake. Again the Birthday Girl took my son’s hand and led him to the head of the table.

A few moments before, the kids had been asked not to blow their mind-numbing birthday horns indoors a few minutes before; somehow my son missed that message and proceeded to toot away.

“It’s OK that he’s tooting,” Birthday Girl said. “Because he’s…” and she stopped short, not knowing how to end the sentence.

“Cuckoo,” another child said.

“DON’T COMMENT,” she yelled insistently. “Well, you can comment, if you want to say something like, ‘He’s so nice.’”

And that was that. The party proceeded on. The kids watched a movie, and my son had the darnedest time trying to stay focused. He made noise, climbed on the kids, and eventually, I brought him outside with some toys to play while we grown-ups had a beer.  I felt satisfied that on some level progress had been made. I wondered what it would be like for these kids the next time they met a child like him. Maybe they would consider that child a little less strange, a little less cuckoo.

Recently Kara Baskin wrote a nice piece in the Boston Globe about the simple wish list she has for qualities she hopes to see in her child: graciousness, gratefulness, kindness to strangers and kids who are bullied and old people. Who could disagree?

It struck me that that was probably what all these birthday party guests’ parents wanted for them, too. But it is Birthday Girl who is all those things, and part of why she is is because she has been given a many, many chances to practice being patient, considerate, compassionate, and accepting; many, many chances to see my son laugh, struggle, and love her, too.

If we want our children to be good baseball players, we have to give them a ball and a bat. If we want them to play piano, we have to get access to a piano. If we want our children to be compassionate, we have to give them situations to practice compassion. Not just write lists about it, but do it.

Here is a girl, freshly seven, standing up for someone vulnerable, speaking out to her peers and telling them not to bully. Modeling for her friends how to not just tolerate and accept, but to welcome and appreciate difference. How amazing her life will be. I am excited to watch her grow and am grateful to learn from her.

Happy Birthday, Birthday Girl. You are already wise beyond your years.

Posted in bullying, developmental disability, disability rights, gratitude, inclusion, social justice, special education, special needs parenting | Tagged , , , , , | 4 Comments

Open Arms

Posted on May 5, 2012 by

I’ve had another one of those experiences that are so complicated that it’s not easily digesting itself into a post. But it was too good not to share:

There are a lot of spectrums in the special needs world. One of them is the spectrum of embracing folks with disabilities in one’s everyday community. The spectrum looks a little like this, from one end to the other:

  • Rejection: “You’re more than welcome to join us if you meet the following requirement: you are exactly like us.”
  • Tolerance: “We’ll put up with you because you could sue us if we don’t.”
  • Acceptance: “Since you asked, sure, you can join our game.”
  • Embracing: “Great! You saw our invitation. We’re glad you came. Tell us what you need to make this work.”

…and many nuances in between.

I don’t expect folks to embrace my child with a disability all the time. I don’t think mainstream folks have had enough chance to rub elbows with folks with disabilities yet to have the necessary appreciation for difference that’s required for get how wonderful it is.

Acceptance would be nice, but the problem is that after experiencing mostly rejection and tolerance (usually stemming from ignorance and inexperience rather than malice), I’ve gotten tired of the necessary wheedling and cajoling required to gain admission. But then, if folks with disabilities stay home, others don’t get experience with them, and the cycle of ignorance and rejection continues…

Thus it was that I found myself completely paralyzed to try to enroll my son in an informal, impromptu, neighborhood soccer “clinic” last weekend. After last winter’s adaptive soccer debacle in which two dozen kids were sent out of the gym so my son could play soccer with a dozen middle-aged men with disabilities, I had set my sites on a more inclusive rather than separate setting. But my fear of not being accepted was pretty huge.

As the start day approached, I couldn’t bring myself to register officially; I imagined scenarios in which we were turned away, one more vivid than the next. In the end I forced my husband to come with us for the first class, to register on the spot; if we were going to be rejected, we’d all be rejected together. I don’t know how I had become so sensitive, but there it was.

So imagine my surprise: we show up on the field and walk up to the coach in my most submissive, hat-in-hand approach. I begin to launch into my “I was just wondering if it would be ok if…” speech when the coach smiles, grabs my son’s hand, and says with total friendliness, “Sure, no problem. Of course he can join us. See you at 4.”

It turns out that his daughter has special needs too, and she was in my son’s class when he still attending public school in our town. I guess success must breed success, as the old adage says, or I wanted to test my luck, because I took this as a sign to make a bold move.

For months I’d been dreaming about getting my son into the after-school program at my daughter’s school a couple of days a week. It would be a great socialization experience for him. (Why is it that special needs kids “have socialization experiences” but other kids “make friends”? A post for another day.)

Every time I thought about the idea, I imagined a reason it wouldn’t work. Legal reasons mostly, but really it was fear of rejection, plain and simple. Bringing it up with other advocates, friends and colleagues, they shot the reasons down, one by one. The clincher came when my two co-workers lovingly baited me: What have you got to lose? Stop being so afraid.

I left the office and headed to my daughter’s school. I mustered up the courage to swing by the after-school office and talk to the young man who administers the program at our site. I coolly mentioned that I’d be submitting an application for my son to join after-school a couple of afternoons a week next fall. I was about to launch into a speech assuring him that my son’s PCA would be on hand, he interrupted me.  His eyes lit up. “I often wondered when your son would join us. I was even thinking about how we could get it to work. When you submit the paperwork to the main office, please tell them that I’m totally on board. This is important for our program. I want ours to be the kind of place that every kid can attend.”

To those out there who have experienced rejection, grit your teeth through tolerance, wheedled and cajoled, carried the burden of making things work, I say: thank you. Because you were there, I am here. And I’m really, really grateful.

Posted in special needs parenting | Tagged , , , , , , , , | 10 Comments

How did I get here?

Posted on May 2, 2012 by

With a laundry basket on my hip or a brief case on my shoulder, I’ve looked longingly at the laptop during the last couple of months. I just haven’t been able to squeeze it in. It feels so good to be back again. It’s hard to know where to start, so I’ll just dive in.

Last week I was sitting in the waiting room of my Congressman, Michael Capuano (8th District, Massachusetts, US of A). As I sat on the sofa in his waiting room, looking at all his Boston bric-a-brac (baseball caps with college logos seem to be a favorite), I had one of my surreal David Byrne moments; just like in his classic Talking Heads’ song, I found myself wondering, “How did I get here?”

Fifteen years ago, Michael Capuano was my mayor. I didn’t know him then. I didn’t care about politics, especially local politics. I wasn’t a home owner, didn’t have kids in the school district, didn’t care about property taxes. I was a true civic deadbeat. I don’t even know if I voted in local elections.

My, how things have changed. Last week I sat on that sofa with sweaty palms, waiting to be meet with  his chief of staff to encourage the Congressman to support House Resolution 3423, the ABLE (Achieving A Better Life Experience) Act. The passage of this act would make it possible for my son, and lots of other people with disabilities, to be able to have more than $2000 in a savings account without risking losing social security and medicaid benefits, which he will surely need as an adult. Right now, most folks with severe disabilities are living in enforced destitution in order to qualify for benefits like healthcare and housing assistance.

While that doesn’t answer the question of how I’ll find the money to put in the savings account, to say that the passage of this act would give me peace of mind doesn’t even get close this act’s significance. The passage of this act would let me and lots of parents like me feel a little less afraid to die. 

So I’ve gone from not caring at all about politics to caring a whole lot. Does that make me selfish, or full of  self-interest?

Perhaps. Probably. Maybe there’s some nobility at least in spending time trying to change the rules on everyone’s behalf rather than using that time to sit with a financial planner in some office somewhere finding loopholes that would benefit just us.

But what struck me more than that in that moment was the very strange feeling that while this was not what I had planned for my life, Life had more in store for me than I ever imagined. Once again I have to ask myself the lovely words of Pema Chodron: “How did I get so lucky to be awakened to others and their suffering?” Maybe it is only in this awakening that we become politically activated. At least, it was for me.

Posted in special needs parenting | Tagged , , , , , , , , | 10 Comments

No Pity: part 2

Posted on April 9, 2012 by

No Pity: part 2

I’m still thinking about my meeting with the young boy last week at my daughter’s after school program. I wanted to follow it up with an apropos book recommendation while we’re on the subject of disability and pity, or the aversion to it.

Once again, I was given some required reading for my disability fellowship. Once again, I put it off–too much disability in real life made reading about it less than desirable. And also once again, I was glad I did. Here’s what I read and what I thought about it:

No Pity: People with Disabilities Forging a New Civil Rights Movement is a chronicle of the Disability Movement as told through the stories of individuals who lived it. “Nondisabled Americans do not understand disabled ones,” author and nondisabled journalist Joseph Shapiro begins the book, and for the next 400 pages we are taken on a journey that posits and answers the difficult question of what disabled people really want from society and why we nondisabled people should want that too. Through personal histories of the folks who have led our country through an enormous political shift that parallels the civil rights movement as a whole, Shapiro attempts to answer that question with a shot across the bow that his title delivers: no pity.

Revealed in these stories is the difficulty for nondisabled—and sometimes disabled folks as well—to change how they think about disability and the individuals who have them, progressing as a society rather quickly from one who shuns, to then paternalistically supports (and pities), and then ultimately accepts and welcomes. In the detailed story-telling of people like Ed Roberts who is a post-polio quadriplegic who started out attending school by phone from an iron lung and eventually paved the way for independent living for many folks with disabilities, we begin to understand the significance of the progress that has been made. Shapiro does a wonderful job communicating how many of these changes were far too slow for the individuals relying on them, while culturally the changes were happening at seemingly lightening speed for our country as a whole. From the Gallaudet revolt in 1988 to the passage of the IDEA and ADA, Shapiro builds, brick-by-brick, the foundation of the house that the disability rights movement built. 

For me personally, the book was both empowering and confounding. On the one hand, I appreciate how having a “no pity” approach to raising my child with special needs allows me to envision and create a richer and more included life for him. Much progress has been made and there is so much to be grateful for. Yet I think that for those who have spent years advocating for disability rights, there is a lack of awareness that most people’s cultural attitudes about disability have not changed. I continue to meet parents of children with special needs who, despite advocating for their children’s needs for decades, continue to hold beliefs that their own children’s lives are not worth living. As a society, it is important for us to keep teaching lessons of awareness and acceptance even though so much progress has been made in policy. Deep, widespread and lasting cultural change takes time.

Reading the book, I see how far we have come. Reflecting on last week’s meeting in the after-school room, I see how far we have to go. Let’s get to it.

Posted in special needs parenting | Tagged , , , , , | 2 Comments

No Pity, part 1

Posted on April 3, 2012 by

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.

Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.

Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”

“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”

A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.

Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?

Posted in developmental disability, disability, disability rights, IEP, inclusion, recreation, special education, special needs, special needs parenting | Tagged , , , , , , , | 5 Comments

My six word memoir(s)

Posted on March 21, 2012 by

My airwaves have been silent lately. Some new professional opportunities have offered me the chance to share my perspective as a special needs parent to such a remarkable degree that I seem to have little time and few words left for blogging.

But an opportunity came up last week to create and share my six-word memoir. Have you seen these? Six words to capture the essence of my truth. Even I have time to find six words. Granted, my truth has changed a lot in the last 10 years. Becoming a parent of a child with complex medical, cognitive and behavioral needs has gotten me access to deeper truths I wasn’t aware of before. Or maybe the truth hasn’t changed, but the vantage point has shifted.

I’ll give you a for instance. On the eve of my son’s birth, after years of struggling to get pregnant, I was convinced that all of our challenges were behind us. My memoir then:

And they lived happily ever after.

Fast forward a few years, after the two cardiac interventions, the MRIs, the g-tube surgery, the hundreds of Early Intervention sessions, the memoir would have looked something like this:

Not quite what I was planning.

Or, if I’m being totally honest, I can say that I didn’t really need all six words. Two would have sufficed:

Why me?

But something has shifted again. Diving into the deep end of the disability world, finding companionship and empowerment, spending time in silence to reflect on what my son, my family and I really need and want, going from having a broken heart to one that was broken open wide to let life in—it deserves a new headline. So here it is:

How did I get so lucky?

It’ll change, I’m sure. What’s yours?

Posted in developmental disability, disability, special needs, special needs parenting | Tagged , , , , | 8 Comments