Getting my story straight

Several years ago at a conference I listened to a woman tell about the extraordinary home she lived in India when she was younger. One side of the house, she said, butted up against a slum area; people lived amid squalor and poverty, picking through trash in order to survive. Exiting a door on the other side of the house, she could enter into a beautiful secluded garden, where peacocks strutted among exotic flowers. Describing one’s life, much like describing the outside of this house, she continued, was largely a result of perspective:

I could tell you a story of my life that would make you very sad, and it would be true. I could tell you a story about my life that would seem very joyous, and that would also be true.”

Last week I was challenged to write the story of my own experience as the mother of a child with special needs. Applying for a family leadership fellowship on neurological disabilities, I was asked to sum up my experience raising a child with special needs in a page or so. In writing it, I recalled the woman’s story of India and realized that my story too depended largely on perspective. I could tell several different stories – each one true – depending on my vantage point.

I was startled by how easily I could evoke sadness and pity or triumph and exuberance depending on the experiences I chose to include. Even the same experience could be seen as positive or negative depending on the details. For example, there’s the very real fact that my son didn’t learn to walk until he was nearly four, along with all the accompanying challenges and inconveniences of that. But there’s also the fact that my son learned to walk at all, which wasn’t always a given, thanks to the help of a brilliant physical therapist. Which set of circumstances holds more weight for me?

Which brings me to the bigger question: what version of my story do I tell myself? I’m not talking about our public stories, like the one I was writing, or the ones we tell when we introduce ourselves or the 140 characters of a tweet or Facebook status update. We all know how true yet misleading and selective those glimpses can be at times. One well placed exclamation point or emoticon can change everything. No, I’m talking about the story I tell myself when there is no audience – my honest interpretation that creates meaning and context for my experiences. The version of events I tell myself with no make-up on at 2 am in the silence and the dark. And if I can do that, is there any value to it?

According to some, there is good reason to explore this. Therapist Michael White developed an entire branch of family counseling called narrative therapy; this form of therapy assumes that narratives or stories shape a person’s identity and then uses these stories to create a healthier or more creative outcome for his patients.

The usefulness of narrative isn’t new to most special needs parents. Most of us parents are welcomed in to the special needs world with the well known Welcome to Holland story. I know that for me, that gave and continues to give some meaning and context to my experience.  For many of us, our very person story would echo some of the progression of that story.

For many people, the monomyth of Joseph Campbell’s Hero’s Journey also provides a meaningful narrative that describes a life of challenge, growth and redemption. His work is so rich that I can’t begin to describe it in this post, but I promise to get back to it soon, if only for my own benefit. For Campbell, Homer’s Odyssey was perhaps the archetype and I find strength and meaning in its arc of denying then accepting the calling, receiving divine aide, facing the trials, achieving the boon and returning back to help others.

I encourage all of you to give writing your own story a try. In one page or less, how would you summarize your plot? If it were a movie, would it be a comedy, a drama, a quirky indie flick or a horror movie? Do you have any lesson, truth or theme and how can you capture the complexity and contradictions of your experiences? Beware of trying to write how it ends. Just tell the story of what has happened up to this point; remember, we’re not whitewashing anything or trying to manifest anything through wishful thinking – just create order out of the chaos of what has already happened.

In the mean time, I continue to write and re-write my story. I know it can change on a dime, but for the moment it’s my story, and I’m sticking to it.


Daring to (partially) participate

As my son gets older, it’s becoming more challenging to find fun extra-curricular and recreation activities for him. When he was an infant and toddler, his delays were less noticeable, less “disruptive” simply because his differences were less different. The activities themselves—parent/child music classes or story time at the library—relied less on his abilities and more on my level of engagement to make them work.

But now, as baby swim and tumble class offerings are replaced by opportunities for Little League baseball, soccer travel teams and music lessons, I see my son’s recreational life is being pushed out into the margins. Without the pre-requisite gross and fine motor skills, attention span and intellectual abilities, joining in is less of an option. Even something as simple as being left in the play area at our local IKEA is off limits to him, since although he’s eight years old, he still wears diapers.

Luckily, there is a wonderful movement out there called adaptive recreation. Advances in equipment and the creation of organizations like Special Olympics give kids a chance to participate in sports regardless of their challenges. Movie theaters like the AMC chain offers Sensory Friendly Films which are a little less loud, dark and demanding on movie-goers to be silent and still. Cultural organizations like the Boston Ballet offer adaptive dance programs, recognizing that regardless of the shapes they create, all bodies can express beauty. Most towns in our area, including our own, are beginning to offer adaptive sports leagues for people of all ages.

But there’s something a little “separate-but-equal” about adaptive sports that perpetuates the lack of opportunities for the rest of society to get to know, to learn from, to create relationships with and to value people who are different.

This spring I learned of a concept that offers an opportunity for a little more inclusion than adaptive recreation. A friend told me that she had signed her daughter up for hour-long karate lessons; her daughter could only handle 15 minutes, and that was OK with her. She called it“partial participation.” And a light bulb suddenly went off in my head.

A principle of inclusion theory, the Partial Participation Principle suggests that it is the right of all individuals to participate in society, and that by modifying or adapting the materials, duration or supports of a mainstream education or recreation experience or environment, even severely delayed or disabled folks can meaningfully participate. Unlike adaptive recreation programs which separate people based on their disabilities, partial participation offers the chance for people to take part in a much wider range of activities with their chronological-aged peers.

In many ways, we experience partial participation all the time. If you’ve ever been to a yoga class or gym group workout where the teacher told you to “do only what feels right for your body,” you’ve experienced partial participation in action. You didn’t need to prove that you could touch your toes before you walked through the door of the class; an assumption was made that you’d still benefit even if you couldn’t do everything perfectly. Even closed caption on TV or preferred seating on public transportation could be viewed as partial participation.

With this new perspective in mind, I was determined to create some opportunities for my own son. So it was with a sense of adventure and some hesitation that when I signed my daughter up for a theater program in our town this spring, I asked the person running the program if it would be possible to include my son, who has developmental delays and an incredibly short attention span. If she was willing to give it a shot, I would provide the support I thought he needed. I asked, held my breath and she said yes.

The three months of rehearsals were a real experiment and didn’t go at all as I had planned. (Why am I still surprised by this?) Here are some examples of how we changed things to make them work for us:

  • Rather than simply dropping him off, I stayed with my son during the rehearsals, sitting on the floor with him and the kids to help redirect him as needed. Eventually his personal care attendant took over.
  • I was able to check in with the teacher to make requests for things that would help him stay engaged, like making sure that he could always sit where he could see.
  • Rather than expecting that he could stay for the entire 90-minute rehearsal each week, I gave him frequent breaks outside the room.
  • When rehearsals got very focused and intense as we reached the day of the performance, he didn’t participate at all. While this was not ideal, it made sense for the situation.
  • He had a non-speaking part as one of a group of adorable chickens. While the other chickens remained on stage for the entire performance, he participated only in the opening and closing numbers. Again, not ideal, but OK.
  • Since the main goal of participating was to build friendships with typical peers, we arrived early so that we had more opportunities to play before rehearsals began.

It wasn’t perfect. In many ways life would have been easier if we just stayed home. Looking back I see this was probably a very challenging program to modify, especially given that both the teacher and I didn’t have experience doing it. Yet the overall experience was great for my son. Watching him participate in a performance—he was so proud!—and rekindle old friendships that had lapsed once he started going to school outside our district made it worth the work.

And this brings me to the aspect of the Partial Participation Principal that I find to be the most important (and I’m guessing most often overlooked). According to one research article, partial participation environments and activities “should result in a student being perceived by others as a more valuable, contributing, striving, and productive member of society.”

This is where the challenge lies. Partial participation isn’t about letting someone participate and look like a fool while doing it. That’s not doing anyone any favors. Frankly though, this is what most of society is like and why parents end up staying more and more in the margins with their special needs children: because to participate, when done the wrong way, brings too much risk of being outwardly teased or bullied or silently pitied or misunderstood.

When Partial Participation is working, everyone benefits. The “typical” kids get a bigger worldview and learn something new, too. We want all of our children to learn compassion, patience, respect and to value diversity. Partial Participation, done right, lets that happen.

So parents of children with special needs children: how might you expand your child’s world by trying out “partial participation?” Two innings at the local baseball game? Ten minutes piano lessons with no home practice? Try it. It’s work, I know, but it can be great.

To all you other parents who are little league coaches, play date coordinators, neighbors and friends to children with special needs: how might you change something up to make it possible for everyone to participate? Don’t know how to get the ball rolling? Simply ask the parent: “We really want Johnny to join us for a bit? What could we do to make that possible?’ Don’t be surprised if they can’t envision it—we’re all stuck in this “all or nothing” thinking every once in a while. But keep trying, because it’s worth it.

Which reminds me—next trip to IKEA, we’re asking for 10 minutes in that play area, potty training or no potty training.

Gloriousness and Wretchedness

Life is glorious, but life is also wretched. It is both. Appreciating the gloriousness inspires us, encourages us, cheers us up, gives us a bigger perspective, energizes us. We feel connected. … On the other hand, wretchedness–life’s painful aspect–softens us up considerably. Knowing pain is a very important ingredient of being there for another person. When you are feeling a lot of grief, you can look right into somebody’s eyes because you feel you haven’t got anything to lose–you’re just there. … Gloriousness and wretchedness need each other. One inspires us, the other softens us. They go together.

Pema Chödrön (Start Where You Are: A Guide to Compassionate Living)

Lately it feels as if I am reaching the limit of my emotional capacity—my container, as it were, is if not overflowing, then damn near full. It seems like I’m looking at everyone around me through a pair of polarized sunglasses, bringing their pain, regret, injustice, joy and gratitude into vivid clarity. The highs seem higher, the lows lower.

Life seemed simpler when I was just bobbing along the surface. Digging in the dirt of the real and sometimes unmeetable special needs of my children, my family and even myself has brought me into contact with a side of life that I’d rather not know about.

Without afflicting you with the horrifying details, I was beyond saddened—I was sickened–last week to read of the case of abuse and coverup at the Judge Rotenberg Center. Years ago I would have shaken my head at the inhumanity of it; now I take it personally and read it as if it is happening to my own children. It’s so raw and extreme and I know it’s not helpful, but I don’t know how else to be right now.

It triggers a nerve, begging the question that many parents of children with special needs contemplate—what will happen to my child when I die in a world of so much fear, so much ignorance, so much evil? I know, I know, heavy stuff, and not what you came here to read about. I sat with the question for a moment, breathed deeply and got on with life. What else can one do?

And though this is the new normal for me, I can’t leave this post hanging that way. As I said, the lows are lower, but the highs are higher too.

This weekend we went camping with some old friends. Their daughter is only a few days older than my son, though cognitively and physically they have seemed light years apart for a long time. She is becoming a beautiful, intelligent, strong girl and I’ve observed for the last few years how she tries to make sense of the boy who she once considered her best friend, who cannot always keep up with her fun, but who delights so much in everything she does that he literally cannot stop laughing when he’s with her.

She and I had a few minutes alone together walking in the camp ground. Surrounded by so much nature, we got to talking about the cells that all living things are made of. It seemed a teachable moment, and so I then remarked on how there are genes in each cell which give instructions on what the cell should do, and that sometimes these genes start giving the wrong instructions. In her friend’s case, I explained, the instructions about growing and learning are a little mixed up. “But sometimes there’s a good side of these mix-ups,” I said. Her eyes lit up with her a-ha moment, she nodded and without missing a beat, she said, “Because he thinks everything I do is funny!”

To watch her have that awakening, that difference is natural and sometimes beautiful—I can only wonder why I spend so much time worrying about the world when it is filled with so much love, so much awareness, so much connection.

Heartbreaking challenge and breathtaking beauty. Wretchedness and gloriousness. They go together indeed. And luckily, as the emotional containerthat is my heart is pushed to the limits of its capacity, it is seemingly growing bigger.