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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Mi casa es everybody’s casa

I am sometimes asked what it feels like to share so much personal information on this blog. After years of raising a child with special needs, I can honestly say that privacy is something I barely remember.

I know lots of special needs parents who probably feel the same way. It didn’t happen overnight. I was a private person once. But like a the proverbial frog in a pot of water who doesn’t realize that he’s slowly being boiled, my sense of privacy has slackened without much notice.

For me, it probably started with a Home Visit, the sine qua non of childhood intervention. A nurse, a social worker, or an intake coordinator, likely from Early Intervention or other state program, came to my home, sat next to me on my sofa to ask a few questions. For this visit, I probably picked up the house, or at least the living room, and maybe even put on a pot of coffee.

Fast forward a few months or years, and I find myself giving out a key to anyone who asks for it or simply yelling “come on in!” whenever I hear the door ring. After the 100th visit from the speech therapist, occupational therapist, physical therapist, developmental specialist, nurse, school psychologist, agency evaluator or personal care attendant, I realize I have stopped brewing coffee, stopped running around to pick up, stopped slapping on some lipstick because I just can’t keep up the facade, and frankly, I realize that they just don’t care. I tell myself that they’ve probably seen much, much worse than that pile of unfolded laundry on the dining room table, and anyway, it’s clean, so it’s nothing to be ashamed of.

It’s not only in my house that my sense of personal dignity gets “loosened up.”  The hospital stays are particularly challenging to maintaining a sense of dignity. I find myself woken up at 6:30am by an army of white-coated people from an uneasy sleep in a fold-out chair next to my child’s hospital bed. Wiping the drool from the side of my mouth, directing my comments off into a corner so as not to knock them unconscious with my morning breath, I curse myself for not sleeping with a bra on under my pajamas while I pat my head, trying to visualize how bad my case of bed head is. But at the same time, I just don’t care.

I have even gotten used to having people in my proverbial “space” or as my daughter would say, in my “business.” I answer questions about my son’s health and development, my pregnancy and delivery, my stress level, my income, my relationship status, my choices, my actions and my inactions. It feels like I am being judged, and in fact, I am. It is an invasion of privacy but I offer the info willingly. It is the price I pay in order to receive the services and resources that will help him thrive.

The details of my life, my story, becomes a currency that I offer willingly in the service social change and reform as well. In meetings with political staffers, on task forces and in board rooms, I share some personal details with no regret because I have learned that while data drives the discussion, it’s the personal stories that keep everyone at the table. I could talk about theory and percentages until I’m blue in the face, but it’s often a small anecdote that drives the point home.

Even out here in the blogosphere, it’s the stories that connect us even though we might have never met.

So this week, when I invite several personal care attendant candidates in for interviews and host two medical students to teach them about raising a child with complex needs, or even when I hit the “publish” button on this blog post—it won’t feel weird. I’m used to it. Come on in.

I get by with a little help from my friends

Several years ago at the playground of our integrated preschool, a bunch of my mom friends were discussing the pros and cons of the kindergartens they had the option of sending their kids to the following year. Since my son had only one choice the following year, the self-contained classroom that I could either take or leave, I observed silently and jealously from the sidelines. When a good friend declared that all the trouble of touring and choosing an elementary school was “just the worst,” I vividly recall excusing myself to go help my son on the swings. Our friendship was never quite the same after that. I checked out. It just hurt too much to be so invisible.

As someone raising a child whose special needs impact his ability to sustain friendships with typical peers, I spend a lot of time thinking about his friendships and how to support them.

I spend less time thinking about supporting my own. I’ve come to rely on a trusted and loving circle of friends and extended family. I’m so grateful for them. John wrote it and Ringo sang it best: Oh, I get by with a little help from my friends.

When I reflect back on the past 10 years, I can see that not all friendships made it. That’s nothing particular to special needs parenting, or even parenting. Not all relationships last forever.

Some recent research shines a light on why several of my friendships couldn’t go the distance, and how I might have changed that. It also explains why some of my relationships have gotten stronger, and what might have made that possible, too.

Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.

Interviewing 40 parents of young children with disabilities, the researchers set out to answer the question of whether social relationships are always a help, or whether they might be a hindrance. Here’s what they found:

  • Relationships with spouses/partners and their other children were on the whole positive.
  • Relationships with friends, extended family and colleagues was more often characterized as negative.

There’s much to explore and discuss. But it was the factors that the researchers attributed this difference to that really caught my attention:

Since parents of CWD [children with disabilities] often receive training on accepting and working with the CWD, and siblings can receive similar trainings and support through schools or sibling networks, unrelated social networks may need sensitivity training to help families raising CWD feel accepted. Disability advocates have made broad based efforts to promote acceptance of differences (e.g., billboards, public service announcements, advertisements in magazines); however, individual level trainings may be warranted.

In the weeks that have passed since I first read this, I’ve mourned a little for the friendships that didn’t last mostly because our society doesn’t yet raise folks to be naturally accepting to disability.

I realized too that when it comes to all I know about inclusion and celebrating difference, I was not born this way. I had to learn. So did my husband and my daughter and my mother and my father. And if I wasn’t born knowing this, how can I expect that others would?

The researchers closed with this cautious recommendation:

Parents and family members of CWD may benefit from educational interventions regarding how to teach others in their social networks about disability issues.

OK, then. We need to be taught how to teach others about disability. Looking back on my friendships that have thrived over the past 10 years of raising my child, I can see what made a difference. Connecting with other special needs families is a natural step, as they too are being taught to accept my son when they learn to accept their own children’s differences. Writing this blog has given me the chance to share my experience with friends and extended family whose own knowledge and experience delights me. Modeling my own appreciation for my son’s differences with his peers (and my own) has also made a difference. Making the effort to include him in our community has also given folks a chance to learn something new.

What has worked for you? Which friendships have thrived and which have withered? What are some things you’ve done to strengthen friendships during early childhood? What techniques should we start to talk about as a community?

And while I’m at it, let me say to all my friends: Thank you. I’m so grateful that you’re in my life.

It’s complicated

I am having a really hard time figuring out what to make of my son’s soccer practice this past Saturday. Can you help me figure it out?

As part of our town’s recreation department’s efforts to create recreation opportunities for kids with special needs, they’ve started an adaptive soccer league. High school varsity and JV kids buddy up with kids with special needs to play casually; it’s a low-pressure hour of fun. As part of creating local friendships for my son, who now travels 2o miles each day outside of town to attend school, I registered him for the program in the hopes he’d meet some local kids.

This past Saturday was our second practice. When we arrived, a winter soccer clinic for typically developing school-aged kids was wrapping up; the kids were cute and would have been wonderful buddies for my son, who is nine and has a developmental delay, but they were rushed out of the gym by their coach, who yelled at them to get off the court to make room for our group.

My son’s program started. The participants included my son, a seven-year-old boy from a different town, and about eight adult men who were well over 40, probably from a day program or a group home. I asked the coach who the charming men were and found out they had just come for a one-time visit but were being invited back for the rest of the season. Apparently, as hard as it is to find recreation activities for kids with special needs, it is even hard to find them for adults with special needs.

So. What to think? Am I happy that we are spearheading an inter-generational, regional group that provides opportunities for all kinds of folks with developmental disability? Or does it break my heart that there are no prospective chronological peer friends here?

A little of both, I guess.

Am I proud of our soccer coach for being flexible and seeing an opportunity to let the older men stay on? Am I disappointed that the coach of the typical kids (who is also the manager of the city’s rec department) couldn’t see the benefit of letting the kids from his session stay?

Again, a little of both.

Would a parent of typical children think it’s appropriate for their nine-year-old child play soccer with a group of middle-aged men? Would I have let my daughter stay? Do I have the energy to do something about this?

It’s complicated.

A few minutes in the hospital lobby

I arrived a little earlier than expected at our local pediatric hospital last Friday. I have spent plenty of hours there with my son, both inpatient and outpatient, or visiting friends whose children are also patients, providing plenty of opportunities for a lot of suffering.

On this day though, I’m here in a more neutral role, as a student participating in a fellowship on developmental disability. Relishing the few extra minutes and the chance to get centered before a day of lectures, I grab a private seat in the lobby to slip in a few minutes of meditation.

I’m a pretty straightforward vipassana meditation gal, usually just “gentling myself” (thank you, Jon Kabat-Zinn, for this tender phrase) myself toward awareness, moment-by-moment, on purpose, using sounds as my anchor. But on this day, with a delightful kinetic lobby sculpture clanging away, along with the murmurs of pacing parents on cell phones updating friends and family on about another long and probably sleepless night, sound is too challenging a focal point.

Leaning into the palpable emotions that surround me, I make a quick adjustment to instead try out a few minutes of tonglen meditation. Tibetan for “sending and receiving,” tonglen meditation is one in which one breathes in the pain of others and breathes out the means of their relief. Setting my handy iPhone timer, I close my eyes, put my feet on the floor, and welcome whatever pain shows up. In this place, there is plenty to be found.

On each inhalation, I draw on my own experience of my past suffering in this very space, and breathe in hot and sharp pain — not just my own but what I imagine the children, healers, the administrators and the other parents, might be feeling right at this moment. On each exhalation, I breathe out a cool relief.

I don’t know if this really helps anyone but myself. I hope that on some level this intention manifests itself as some peace in the world, some real and specific release from pain, but I can’t be sure. I do know that in being willing to open myself up to the suffering of others, I open myself up to all emotions, even good ones, peeling away the layers that create a barrier between me and the rest of humanity.

Breathing in pain, I breathe out comfort.

Breathing in fear, I breathe out ease.

Breathing in anger, I breathe out openness.

Breathing in impatience, I breathe out patience.

Breathing in impulsivity, I breathe out steadiness.

Breathing in pride, I breathe out humility.

Breathing in resignation, I breathe out perseverance.

Breathing in isolation, I breathe out connection.

Breathing in confusion, I breathe out clarity.

Breathing in despair, I breathe out strength.

Breathing in pain, I breathe out love.

May all children be free from suffering and harm.

May all families be free from suffering and harm.

May all staff be free from suffering and harm.

May all beings, including you and I, be free from suffering and harm.

Playing Whac-a-Mole

The daily grind of life as a special needs parent often feels like a game of Whac-a-Mole. Have you played that arcade game? Equipped with one huge padded hammer, the player attempts to hit small mechanical moles that pop out of their holes. Only one mole can be up at a time, but as soon as you hit one down, another pops up. The faster you hit them, the more there are to hit. Hit the most moles in the allotted time, and you are the winner. Free stuffed tiger to the lady in blue!

For those of you who’ve been there, you know what I’m talking about. Just as we finish addressing one issue, another comes up. Some neurology crisis arises…whack!…then it’s time for IEP negotiations…whack!…cajole our way to a new bus driver…whack!…and it’s time for another surgery…whack!…and the game goes on and on and on.

This past week we saw a new specialist in a branch of medicine we haven’t encountered before. It’s been on my to-do list but we just had so many other pressing challenges to deal with — failure to thrive, regression at school and the death of my dad to name but three. Not trying to sound like a Drama Mama, but I’m just sayin’: this particular specialist didn’t even make it out of our doctor’s recommendations and onto our calendar for five years.

So this week, as we waited in the exam room for the doc to arrive while my son ripped his collection of outdated periodicals to shreds, I reflected on how I’m just whacking away…but kind of grateful that our situation has changed enough that I could even contemplate sitting in this particular office at all.  Another tiny wave of gratitude arose when it hit me that some things can wait. Everyone isn’t so lucky. What happens when all the moles pop up at the same time? One only has one mallet.

Of course, seeing the specialist this week (whack!) led to another referral and another specialist. More whacks to come. But I’m aiming to win that giant panda hanging up at the rafters and I can do this for a long time.