Turning the page on reading

I love reading. I love reading fiction, being transported to worlds real and imagined, past, present or future. I love a good memoir, how I get to slip inside another person and see the specificity of their story and universality how our stories are alike. I love reading poetry, especially the kind that aims a tight spotlight on just this moment and reminds me in a few short lines of the link between the mundane and the divine.

At age 13, my son still struggles to say the alphabet correctly all the way through. He has spent hundreds of classroom hours matching, tracing, cutting out, pasting and pointing to letters and words, without much of it sticking. I expect that by adulthood he’ll have a number of site words that he’ll recognize, like his name or words like “exit” or “stop” (or “X-box”) that have a context and format that make it possible for his brain to transform lines and shapes into meaning. But novels and texts are unlikely.

The thought that he won’t have the opportunity to experience reading leaves me sad. As a person who finds wisdom, adventure and joy in reading, coming to terms with my son’s situation has been…well, it hasn’t.

A couple of weeks ago, I was talking with someone who happens to have dysmelia—he was born with only one hand. I haven’t known him long, but long enough that I don’t notice his physical difference anymore. If anything, I simply note how graceful he is in the way he moves around in a two-handed world. He is retired now, and it seems to me he’s had a satisfying career and enjoys a rich and enjoyable life.

He was talking about how he is sometimes contacted by parents who have recently given birth to a child with dysmelia; it’s clear, he explained, that the parents are grieving for experiences their children will never have. But this grief is often based on their own attempts to replay their own childhood in their minds and attempt to live it one-handed, and that often just doesn’t work. He tells these parents that he has participated in research in which his left hand was held up to a mirror in order to trick his mind into believing that he had a right hand; the fMRIs taken while he looks at the mirror show without a doubt that the place in his brain that should light up when he thinks about a right hand has simply been assigned a new task. It has been filled, he chuckled, with more sensible things. Because he has never had this hand, he can’t say that he’s “missing” a hand or that he misses it. And his life, while not without challenges, has been just fine.

I came away from our meeting with my head spinning. I thought about how other people experience immense joy because they are great at physics, or speak Spanish, or play the piano. Do I ever feel sad that I can’t do those things? Not at all. I take pleasure in other things that I’m good at or enjoy. So why do I persist in grieving for my son’s relationship to reading, simply because I enjoy it? Could this feeling be not really grief, but pity? Am I actually insulting to my son and his gifts and his reality by feeling sorry for him instead of helping him find wisdom, adventure and joy in other places? It suddenly seemed so.

I opened a bookI wrote this first draft this morning. This afternoon someone posted this picture on Facebook, with the comment about how this so perfectly captures the magic of reading. “I opened a book and in I strode; now nobody can find me.” The sentiment has definitely been true for me. I noticed that the place in my gut that would have normally twitched was actually still. And that’s not something I could have learned in a book.

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Sorry-grateful, regretful-happy

“You’re sorry-grateful,
Why look for answers
where none occur.”

–Steven Sondheim

There’s something unfolding and I’m so ambivalent about it that I don’t even know how to start this post. That happens sometimes when I try to write about tricky feelings. Usually the act of writing provides a clear point of view, enough that I can scroll back up and re-write a couple of sense-making introductory sentences. If you’re reading this, it’s safe to assume that my ambivalence remains.

Two-plus years into life in Sweden and we are tapping into a service that didn’t exist for our son, with his complex developmental disabilities, in the US. It’s affectionately known in Swedish as kortis, which loosely translates as shorty, and is literally short for korttidsboende (short-term residence).

Kortis offers kids with significant cognitive, behavioral or physical disabilities a place to spend some time away from home, usually a weekend a month, a week or two during the summer, and sometimes one or more nights during the week depending on the person’s needs and family situation.

It’s good for a bunch of reasons. Social workers refer to this service as respite, which is so uncommon in the US that if you’re like me, you may need help figuring out how to pronounce it. (It’s RESS-pit.) For us, that means the chance to sleep in, move more slowly, finish a thought, grab a daytime movie, to catch up on home improvement projects, and spend some uninterrupted time with our daughter. (Yes, I’ve been daydreaming.)

The benefits for our son are many; he doesn’t normally get sleep-overs or sleep-away camp, but suddenly he’ll have weekends filled with outings, movie nights, good food and time away from his sometimes over-protective, boring and/or exhausted parents. He’ll get the chance to practice skills that he’ll need when it comes time to move away from home, too. Most importantly, it’s a stimulating change of scene for a kid whos world could stand to be a bit bigger.

And in our new life, kortis is available to us, close to home, with plenty of qualified staff. And it’s free.

Even so, there’s a lot I don’t feel good about. For starters, there’s the terror of letting my more-vulnerable-than-average kid spend a prolonged amount of time with adults who aren’t family. Do I need to get into the depths of that terror? Compound it with how easy it is to feel like a failure as a parent when you finally admit that in order to get your family life to work, one of your kids will spend time away from home.

But after two years of telling the agency powers that be, “thanks but no thanks,” we finally have to admit that our son has needs that we can’t meet. We’re resolved to make it work.

It’s been several months of slow transition: first our tour of the kortis house, then a meeting with the in-take coordinator. Then our son had dinner at the house (once with us tagging along, then once without us), and a first attempt at a sleep-over that ended with a call home at 11:30pm when our son was too excited to fall asleep. Tonight my husband is camping out with him at the house, in an attempt to get him through the night. Several more baby-steps may be needed until he adjusts. Until we do too.

Deep down, I know that it will be great for all of us. But for now, I’m sorry-grateful, regretful-happy. That kortis is an option for us. And that we need it.

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Wait for it

I was thrust out of sleep last night for a few brief seconds into total free fall, just barely this side of consciousness, unable to recall where I was, who I was, why I was. For a moment I struggled to orient myself in space and time, until I heard myself say in a calm, competent voice: “Wait for it.” hyperspaceA total sense of trust washed over me, a sense of excitement even (who might I be?) until finally I slammed back hard into the labels and perceptions of me—my name, my place on the globe and in my bed, a knowing that today was Tuesday and that I’d go be going to work in a few hours, coffee first. Then it all receded and I slipped back into sleep.

My son turned 13 this summer. As a parent, there is a sense of barreling through the unknown now. After so many years of trying to make a childhood, it’s already time to start building an adulthood. We leave the Beginning behind, and head into the Middle. I know it’s a complicated process for all parents, but this is different, or maybe just a heightened, hi-octane version of the same thing. More intentionality, more paperwork, more letting go whether or not if feels like it’s time. For a child who is so far behind his chronological peers in so many ways, he must begin to prepare for his adulthood long before most the others. And we are here to help him, making decisions about which skills to focus on, which goals to scratch off the list. Mostly, it’s about accepting, for better or worse, that adulthood is coming, and even though he may need help like a child in some ways forever, treating him like one isn’t what he wants. Even when it is, it may not be possible.

What I wouldn’t give to feel that sweet sense of safety I had this morning during this process. To trust that the answers will come and “embrace the questions” of this transition. To perceive the unknown as no problem, exciting even. But I’m not there yet. I guess I’ll have to wait for it.

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In the soda aisle

In the grocery store yesterday I passed a dad holding his baby in the soda aisle, right between the ginger ale and the sparkling water. He stood there, babe in his arms, simply covering it with kisses. He wasn’t trying to cajole the baby or comfort it; instead it seemed as though his love was just so big, so overflowing that he couldn’t take another step without letting some of it spill out. It got me thinking about how there was a time when it probably wouldn’t have been OK for a father to feel that much delightful affection for their child, let alone show it in public. We often think about improving gender equality as something that will only benefit women, but clearly as the world has shifted to open up some public domains for women, it has also allowed men to shed private norms that have kept them separate from their whole selves. Emma Watson’s speech to the UN general assembly for her HeforShe campaign makes this argument movingly, but reminds us that we still have far to go.

There’s a parallel argument here which disability activists have been trying to make for years, but which I don’t think we’ve been able to make compellingly: increasing access and inclusion for people with disabilities isn’t simply good for people with disabilities, it’s good for people without them too. Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.

The disability movement, with its push toward the concept of inclusion in schools, housing, the workplace and greater society, has made some inroads. As with the movement toward gender equality, we still have a long way to go. Until then, I’ll simply have to be grateful that I got to learn the lesson first hand long before it makes its way into the mainstream. Lucky me!

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39,000 feet

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

-Chaz Ebert to her husband Roger Ebert, on the relapse of his cancer. Life Itself (2014)

I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.

I wasn’t intending for this particular crossing to be more than a chance to eat peanuts and catch up on movies that get ruthlessly vetoed on family movie night. I’ve just finished watching Life Itself, the Steve James documentary about Roger Ebert, the beloved movie critic who influenced not only what I watch but how I think about films.

Steve James and his camera enter Ebert’s life after Ebert had already embarked on a journey with cancer, capturing the unfolding of a relapse which ultimately led to his death during filming. There’s much to say about the movie, but the thing that has me sitting here paralyzed in the dark airplane cabin for the last several hundred miles is what Roger’s wife and caregiver Chaz told Roger upon the cancer’s re-awakening. She recalls for James that upon receiving the news, she offered him a deal if he would muster up the energy to for another round of treatment:

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

It hurts me to say it, but if I’m totally honest I’m not the kind of mom who was wired to easily provide my children with something to look forward to every day. Not with my daughter, who’s neurotypical, or my son, who has a developmental disability and complex social needs. Sometimes it’s even hard to know what that might be, as I wrote years ago. I’m a good mom, I think, but that’s just not the way that my love comes out.

My mothering seeps out in other ways. Some days it is simply the effort of keeping a stable, daily life going. At my best times, it has had me quitting jobs to have more time to coordinate doctor’s visits and order medical supplies. Lately it has me tilting at the windmills of injustice, tackling the inequities that leave people like my son underserved, vulnerable and sometimes invisible. I’ve been an activist for causes relating to diability and health care for several years now, doing work that takes me physically and mentally far away from our home and leaves little time and energy left for even getting dinner on the table most days, let alone creating moments of wonderment and magic. I do it in part for other families who don’t have it as good as we do, but also in the hopes of creating a society that will be more able to help my son life a safe and meaningful life.

The idea that Chaz was proposing, to take responsibility for providing someone else’s reason for living—for making it interesting and delightful—made me squirm in my already uncomfortable seat. Because it’s occurring to me lately that that is exactly what I’m supposed to be doing for my son. With his limited agency and independence, I’m not sure that he has the ability to make it happen for himself. And if he doesn’t, who will? What good is the promise of a future life of meaning and joy if there isn’t one now?

In the developmental disability world, parents are often accused of not being let go of our children. But the fact is that they need us in a much more complex way than anyone wants to admit. Sometimes they need us to make interesting things happen. Or at least, hire, train and supervise the person who does. Sometimes we are their (only) friend. Sometimes that’s our fault. Sometimes it’s not.

What if Chaz Ebert’s contract is exactly the one I should be offering my son? What if instead of attending conferences and writing articles, I should be helping him look at the stars or collect shells on the beach? How do I give him the moments of wonder and delight that come so easily to my daughter? If I don’t, who will? What would it mean to take on the responsibility to create interest and something to look forward to every day? And given that that type of nurturing isn’t my nature, how do I personally sustain the energy to do that? And not just now, but maybe for years to come.

I doubt I will have the answer before I land. I plan to talk to my husband and those closest to us about how we can make a life full of wonder and joy for him. Full of things to look forward to. Full of days to look back on. Full of great days. For all of us.

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Durga’s Tool #198: 12% of a plan

“What percentage of a plan do you have?”
“I don’t know, like 12%.”
–Guardians of the Galaxy

Last month as we were decorating for Christmas, my son told me, “When I grow up, I’m going to have a Christmas tree.” I was floored. It wasn’t that the sentence was grammatically far beyond his typical speech.  It was this: even though he’s 12, it was the first time I’d ever heard him talk his future.

My son has a developmental disability. He needs lots of help doing everyday things, like getting dressed, eating, and cleaning up. There are also lots of appointments with doctors, school and services to coordinate and attend, as I showed in my care map. So most of my focus as a parent is on the present—putting one foot in front of the other to get through the day.

I have a hunch that I don’t spend a lot of time in the past, confirmed mostly by the way my jaw drops when I look at baby pictures of my son and my daughter, who is 10. Were they really that small? Did that really all happen?

The future, too, has been neglected, more because it’s a scary place. Parenting without a diagnosis, then with a rare one that includes developmental disability and little in terms of evidence-based treatment, the future seemed as quiet, dark and void as outer space. Everything I take for granted parenting my typically developing daughter was a question mark when it came to my son. Would he survive into adulthood? If he did, would he be healthy? Would he be safe? Would he be happy? Would he be independent? Would he fall in love? Would there be someone to look out for him after I died? Exactly the kind of thing you feel like thinking about after the kids go to bed and the dishwasher has been loaded. Not.

The normal questions I pose to my daughter just don’t come up with my son. Ones like “What do you want to be when you grow up?” and “Where do you want to live?” or “Where do you want to go to college?” I didn’t mean to skirt them, but somehow, the busy-ness and the fear just got in the way. To be fair, we had gone through a vision-writing process with the help of some other parent advocates a few years ago, and the resulting insights played a role in little things going to a model train expo as well as big things like our decision to move half-way around the world. So I’m not a total deadbeat. But most of our planning has centered on the current school year or evaluation period, with some generic vision statement about my son feeling that he belongs and has a meaningful life that we cut and paste when needed.

Recently I’ve felt the need for a more specific vision around early adulthood. The countdown to adulthood begins early for kids who need lots of time to learn and prepare. It’s time to make tough choices about skills and goals. Where should he spend his time and effort? Is it important that he learns to read, or is it a better use of his time to go the store where he can practice social greetings, handling money, and navigating his neighborhood? This kind of parenting isn’t for the faint-hearted.

What will be most important for him in terms of the life that he wants to lead? At some point, this has to be less about me and my dreams and more about him and his. (Another wonderful gift that special needs parenting dishes up for the willing.) Creating a plan for the future means letting go of what matters only to me and embracing what matters to him.

Planning for the future can be a lot of things. It can simply be daydreaming about what lies ahead, or it can be a facilitated person-centered planning process that results in a document shared with others. I’m ready to do both.

So far I know my son will probably live together with a few other people who also need a lot of help and who want to play a lot more XBox than I do.  There will certainly be an iPad involved. And keys. Most likely a dog. And definitely a Christmas tree.

Stay tuned! And send your tips.

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More kitchen table talk

Is it possible to be a good student but a poor learner? I think so, based on my own personal experience. During my school years, good grades came easy. I was eager to please and to be praised, but unless the learning process happened simply through the mere act of being present in the classroom, I really didn’t know how to learn. It wasn’t just in the classroom that things were like this; life too dished up plenty of lessons about happiness, gratitude, generosity and the true nature of things, but unless they came with no effort on my part, they remained a mystery, like quantum physics or ancient Greek.

Lucky for me, parenting a child with special needs has helped make some great life lessons accessible to me, the poor learner. Lessons about the beauty of difference, the tyranny of ego, the gift of this precious moment, and the impossibility of permanence. Without the particular life circumstances that come from being my son’s mother, I don’t know that I would have ever really learned them. It doesn’t mean I don’t forget them sometimes (most of the time) but without him, they would be beyond my grasp completely.

When interviewed by Andrew Solomon for his book Far from the Tree: Parents, Children and the Search for Identity, (watch his wonderful TEDMED talk if you haven’t seen it), Karen Robard, whose son David has Down’s Syndrome, was asked if she wished her child didn’t have DS. She answered: “I would cure it in an instant to give him an easier life, but speaking for myself, well, I would never have believed 23 years ago when he was born, that I could come to such a point, but…it’s made me so much better, and so much kinder, and so much more purposeful in my whole life, that speaking for myself, I wouldn’t give it up for anything in the world.” It may be hard for some people to understand Karen’s perspective, but I do. Like me, Karen has a teacher in her son.

So last night my 10-year-old daughter and I were sitting at the kitchen table filling out back-to-school paperwork, and she mentioned that she had had a dream in which her brother didn’t have Coffin-Lowry Syndrome. She proceeded to tell me of the zany antics that can only ensue in a dream world. I’ve had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken. I had just watched the Solomon film earlier in the day and Karen Robard came to mind, so I asked my daughter tentatively in the middle of the allergy form if she ever wishes that he didn’t have CLS. She replied without hesitation yet without insistence: “No, if he didn’t have Coffin-Lowry, I would wish that he had it. He is perfect the way he is.”

I continued to scribble away in order to keep it safe for her to keep talking, as I try to do when the subject of her feelings about her brother’s disability come up. (My friend Susan calls “periodic check-ins,” and you never know when they will happen.) After a few more fields and a signature I casually mentioned that it’s pretty cool that she felt that way, because some people might not see that. Not exactly knowing where I was going with my next sentence, I simply said, “I mean, it’s kind of…” “It’s not hard, Mom. You can’t blame him.”

And in her steady, matter-of-fact tone, I heard and understood that she meant that not only could we not blame him, we could not blame anyone. And the reason we could not blame anyone was that there was nothing to be blamed for. Just as she said, he was exactly as he should be. Our family was exactly as it should be. Life was exactly as it should be. And furthermore, I learned that I didn’t always really believe that, and that she knew I didn’t.

Outwardly, I continued filling out yet another form. But inside, my synapses fired as I realized that my daughter, with far less life experience than me, had already attained an acceptance that I was still struggling with. And finally, I was reminded of the biggest lesson yet: that life hadn’t put one great teacher in my family, but two. 

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