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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Look Ma, no hands!

I sort of learned to ride my bike with no hands this week. I say sort of, because it’s really only been a few moments of what felt like flying, nothing mastered, but a sense of progress anyway. Seeing as I’ve been riding a bike for over 30 years, any new skill at this point is remarkable and surprising.

The urge to let go of the handlebars came during an unusually long bike ride that offered up a unique combination of mania (the vineyards! the ocean!), seething neck pain and moments of boredom (did I mention it was a very long ride?).

As the miles ticked along, I realized that riding with no hands required both supportive internal and external conditions. Internally, there was a certain sense of balance (leaning too far back or too far forward just didn’t work) and a commitment to the process–a fearlessness, as silly as it sounds. Meanwhile, the perfect combination of a level path, no wind, and a lack of oncoming bicyclists also seemed an essential part of the process.

I have been riding with no hands when it comes to special needs parenting for some time now, ever since our huge move has had my attention elsewhere–getting a job, a place to live, a dog, converting recipes into metrics and Celsius. With so much to take in, I took my hands off the handlebars, trusting that the people around me would keep us safe (a correct hunch), that my mom detectors would sound even if 99% of me was caught up with figuring out the recycling rules of my new homeland, that I would take the handlebars again when it was time.

I have been here before, and I know many other parents of children who need special medical, behavioral and recreational support who have too. We’d like to think of ourselves as able to be fully focused, fully on, 24/7/365, and so would the people who help us. But we can’t. Sometimes we just need to let go. Sometimes for a day, sometimes longer.

Call it what you will–neglect, self-care, or coasting. Whether we beat ourselves up over it or celebrate it, I think it is a major part of this parenting process, and one that is rarely referred to. Society likes to label us as either “disengaged” or “super mom.” These labels hurt us all. Life is not so binary.

I’m glad I took the break. We got to develop relationships with new teachers and others without having them feel like we were constantly evaluating them. And now that there’s less “new” and more “life” in my “new life,” I am better able to lean forward, grab the bars, and hunker down for the next part of the journey.

I would love to hear from others about how they toggle between holding on and letting go of responsibility and engagement. I think we owe it to ourselves and those too afraid to both take the handlebars or to let go of them to talk more openly about how we sustain ourselves.

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Lessons from the teachers at the side of the highway

This weekend we took a trip to my husband’s family’s summer house. On the long trip there and back, we were saluted by beautiful lupines, a dramatic wildflower often found on the roadside in these parts.lupines

As the miles passed, the car seemed to shrink claustriphobically and the GPS estimated our journey home to be increasing rather than decreasing. The dog decided just then to begin wailing at the injustice of it all, my son nervously laughed at the dog’s distressing barks, and my daughter crying at my son’s laughter. Eventually we pulled over so we could all get some air on the side of the road. We reached sensory saturation and were all really stressed. Crispy is how I often describe that feeling. Of being made so brittle by the trigger of stress that one small touch and you’d shatter into a million pieces.

My daughter returned with a handful of lupines and gave them to me as a generous gift. In a moment I was transported back to my wedding day, when the lupines that my mother and grandmother picked graced the tables in the little village hall. It was a welcome liberation from the moment.

I can’t say the rest of the ride was any better though. The dog slept a bit but picked up his howling for the last 20 minutes of the ride. It felt like an eternity and the crispiness was right there with us again. The lupines flopped sadly and I put them in a small vase at the kitchen sink last night with little hope for their recovery, but too grateful to toss them in the compost.

This morning they were at alert once more. I thanked my daughter at breakfast. “Just for you, mom, right from the side of the highway.” She is getting ironic now that she is 10.

Speaking of lupines: Nancy Jay Crumbine, poet and minister who I had the pleasure of hearing preach just once but whose words have stayed with me in the form of her book I purchased from her in the church lobby after her guest sermon has also got a thing for lupines. Or more accurately, they have moved her spirit just as they did mine.

“The lupines have returned,” she writes. “How can we go about our business as if nothing extraordinary has happened? And yet, to really take it in, how can we proceed?… I am daring that many of us have such moments, not wanting to love one more thing, not being able to bear the thought of so much life so freely given, the colors too bright, the bird songs too dear, the debt for being alive too great, the dread of dying too alive.”

“Every June I ask the lupine to teach me, once again, how simply to stand still, bearing witness, being grateful, moving only as the wind suggests,” Nancy writes. Yes, please teach me.

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Durga’s Tool #552: SBAR

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage.

When you are parenting a child with special needs, learning how to communicate clearly with teachers, doctors and other professionals is a critical tool. Good communication helps the person we’re trying to talk to understand all of the facts of the situation as well as what we need them to do. It’s not that they don’t care about us or want to rush us, but sometimes too much information makes it hard for them to know how to help.

One helpful communication tool health care professionals use is called SBAR. It’s a standardized way of talking about a patient’s situation quickly and clearly. It works just as well for parents when we are talking with professionals about our children.

SBAR stands for Situation, Background, Assessment, and Recommendation, and it is exactly what it sounds like. Here is a description of what a conversation might look like using SBAR.

Situation: Briefly describe who you are and what’s going on. “My name is Mrs. Smith and I’m calling about my son, Jamie, who I am concerned about.”

Background: Briefly describe the relevant key points about the person. “Jamie is nine years old and has a cognitive disability and anxiety. He has trouble communicating verbally. For the last two days he hasn’t seemed like himself. This morning I noticed him pulling on his left ear. I took his temperature and he has a fever or 101. I gave him some ibuprofen and it seemed to make him more comfortable and his fever went down.”

Assessment: Describe what you think this means or what you think should happen next. “I think Jamie has an ear infection.”

Request: State what you would like the person you are talking with to do. “I’d like your advice on what we should do. Do you think we should come into the office or is there something we can do from home?”

The Empowered Patient has a free SBAR handout that can help you prepare for a phone call, when you have a concern in the hospital, or when you’re getting ready for an office visit using the SBAR technique. Check it out! It’s simple and can help make sure that you are heard and that you or your loved one gets the attention they need.

The SBAR technique can be used in non-medical situations too. I just used it to call my school district with a complicated question about their after-school policy. Normally, I’d give too much information about some things but still forget to say my name. Using this technique, the phone call was over in two minutes and I felt like it went really well.

 

 

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