Sorry-grateful, regretful-happy

“You’re sorry-grateful,
regretful-happy.
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.

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!

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.

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.

 

 

Detoxing from crisis

We’re hitting the one year mark since our big trans-atlantic move. Coming upon milestones nearly every day this week, the first anniversaries of selling the house, leaving the state, saying good-bye and leaving the US altogether, I couldn’t help but get sentimental, sad, celebratory and relieved. Sentimental and sad for the people who are so far away now, and even for the things—good chewy bagels, NPR on the car radio, my garden. Celebratory and relieved for making it through the transition if not gracefully, then at least with scrapes that will heal clean. We have a new home that we love, a rekindling and creation of relationships, and work we enjoy.

There was one feeling that caught me off guard this week: boredom. Maybe not actual boredom, but fear of it. The past year (and the months leading up to it) have been stressful, that’s true, but there has been something decidedly meaningful about this time as well. Priorities have been clear, we’ve come together closer as a family like never before, the task of putting one foot in front of the other just to get through the day has been, in many ways, satisfying.

We have been in crisis. And I am good at crisis. As a parent of a child with special needs, I’d have to say I feel comfortable there. After years of wishing to be done with the drama of crisis, recognizing a pang of nostalgia for it makes me stop and think.

When my son was younger, he had several stints in the hospital. Everything non-essential was put on hold — work, mowing the lawn, opening the mail, returning non-urgent phone calls — while we focused on keeping him comfortable and supporting his healing. Everything was so clear, simple and focused, exactly the way I think most of us wish our lives could be these days, but of course without the crisis itself.

Dr. Suzanne Koven wrote movingly in the Boston Globe last week about the unexpected upside of illness in families in her piece “In Practice: Illness and silver linings.” “What starts out as a calamity becomes woven into a person’s identity, and their family’s — and sometimes even enriches them.”

Crisis has been such a big part of my own enrichment, like the fire of an iron forge. The calamity is exhausting and scary, but if one is lucky enough to get through it, it is meaningful. So much so that if I’m not careful, it might be tempting to create crisis when there is none.

The trick, of course, is to build a meaningful life without needing the drama to be present in order to do it. Easier said than done. But a goal worth pursuing and a boredom worth welcoming.

I’d be curious to hear what others think about how crisis makes them feel. In the mean time, I’m going to sit and do nothing for a few minutes.

Care mapping as reflection and celebration

Since all the publicity around Gabe’s Care Map in Lisa Belkin’s Huffington Post article in January, I’ve heard from many familes who created their own Care Map. Today’s post comes from Elizabeth Cummings of Montana, mom to Charlie and Max, about how she created her own and what it meant to her. I love how she used the process to support her sense of capacity and celebration, or as I’ve often expressed it, going from “Why me?” to “Lucky me!” My grateful thanks to Elizabeth for being willing to share her reflections! 

As a parent of a child with autism, it can feel as though I’m always in a hurry. Between juggling therapy sessions, medical appointments, school carpool, and trying to find those few precious moments to myself, sometimes there simply aren’t enough hours in the day.  When it comes to managing my time online, I’m ruthlessly efficient, but when a family member posted Gabe’s “care map” to my Facebook page recently, I paused. The graphic drew me in because it so beautifully illustrated what I could rarely find enough words to express. I looked closer. And then I clicked “share.”

When I saw Cristin’s work, I felt exhilarated and validated. Without even knowing me, it was as though someone had drawn a picture of my life. To me, the model’s strength lies in its simplicity. Finally, a clear and effective way to communicate the working parts of a daily life very foreign to most outside the special needs community. I knew the care map concept was important, especially in helping practitioners understand the many aspects of care parents of children with autism find themselves managing. I also knew that I had to try making one myself.

At the center of our care map is my son, Charlie, a loving and intelligent six-year-old with ASD. He is surrounded by a large and caring family—his first level of support. From there branch the many specialists, educators, community members, and policy makers who contribute to his care and development. Charged with coordination is the parent of a diagnosed child—armed with little more than love, large three-ring binders, and a laptop—doing her (or his) best to navigate this complicated world of autism.

EC care map

Creating my map helped me reconsider my own role in my son’s care plan.  I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management.  The exercise allowed me to step back and view Charlie’s system of care with new perspective.  I found comfort in all these little circles, each representing a different system working to support my son and our family.

Elizabeth with her sons Max and Charlie
Elizabeth with her sons, Max and Charlie

When these support pieces are each in place, all adequately funded and working in partnership, then families become empowered and the image of autism can start to change.  The picture facing the millions of parents struggling with an ASD diagnosis in 2013 doesn’t have to be solely one of loss and heartache.  It can also be the look on my face when, at age 3, my son first recovered the word “mama” in therapy.  It can be the sound in his teacher’s voice when she excitedly tells me about a conversation he has had with a friend in kindergarten.  It is the new perspective these children impart, and the special joys and blessings they share with those who love them.

Thanks Elizabeth! If any other folks out there would like to share their care mapping story, let me know!

Show me love

Everyone shows love in different ways. Children with special needs are no different in that regard, maybe even hardwired to be more different than usual. While Williams Syndrome is associated with a “cocktail party personality,” one of the defining characteristics of Autism Spectrum Disorder is a challenge to make typical social cues. Down Syndrome literature is full of descriptions of bubbly personalities. Not to mention individual personalities that create an endless rainbow of lovey-dovey possibilities. When it comes to showing love, these kids are all over the map just like the rest of us.

My son has a developmental disability described in the literature as being associated with “a gentle personality,” but he’s not very affectionate. Not that most nine-year-old kids are, but the frequency and ease with which my daughter can wax poetic on how much she loves her family provides a stark contrast at times.

Mostly I’m fine with that, despite my hallucinatory desire for parenting to be one long version of “Guess How Much I Love You.” There are small, subtle signs and I take them where I can get them. Like holding hands on the sidewalk because he’s nervous about falling. Like the 16-step hug I get when carrying him up to bed at the end of a long day. Every once in a while he’ll climb into my lap after dinner and lean back for a few seconds, letting his body sink into mine; I sit so still, not shifting, barely breathing, soaking it up.

In my needier moments, I flat out ask for affection, sometimes with success, most often not. In the minutes before he falls asleep, when he sometimes seems so clear and able to recall details about his day or ask questions that reveal an inner world much richer than I give him credit for, I’ll take a chance and ask if he loves me, hoping that in this moment of quiet and clarity he’ll indulge me. Last night, as we lay in the dark after reading the Best Buy flyer for the 100th time, I gave it a shot.

“Do you love me?” I asked. “Yes,” he sighed. “How much?” I prodded greedily. “One more minute,” he replied. I was confused and a little disappointed. Then I realized that in his life, “one more minute” are often the best words he can hear — words of permission to continue with a favorite activity after his protest over my request that we stop. As in: “Time to turn off the TV,” I’ll say. He’ll whine. “OK, one more minute.” Like that.

Pushing my luck, I asked, “You love me one more minute?”

“Yes,” he said, sighed, turned his back, and fell asleep.

Dear sweet boy, I love you one more minute…and back.