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.


Durga Tool #1: Time spent in Nature, as symbolized by my thermos

As promised in yesterday’s post, I would love to share some the contents of my Durga toolbox that help me as a parent of a child with special needs stay joyful, courageous and compassionate on my path through life.

To recognize the value of my first tool, you must understand that I live in one of the most densely populated cities in the US. It’s hipster, urban, organic, ironic geeky, smart and innovative. Think Fred Armisen and Carrie Brownstein brilliant comedy Portlandia (check out the hilarious opening sequence), but for real – Rock, Paper, Scissors tournaments, roller derby leagues, coffee shop patrons tying up tables for hours while typing on antique
typewriters, waitresses wearing fake mustaches for their entire shift with a straight face. (Yes, these are all things that I swear I have seen first hand in my own neighborhood.)

But green it is not. I don’t mean green as in eco-friendly, because the city prides itself on high walk-ability and the upcoming single-stream recycling program. I mean green as in actual trees, green as in chlorophyll, the
necessary ingredient to transform carbon dioxide into oxygen through photosynthesis. I mean green as in the opposite of grey and black, the colors of concrete and asphalt. Green as in things not covered in vinyl siding or
surrounded by chain link fences.

I love how cities invite and cultivate weirdness. But after a while this lack of green does a number on my nervous system and my sense of perspective, and I get a little neurotic. And neurotic is not helpful if I want to lead a
joyful, compassionate and courageous life. If I spend too much time on pavement I stop seeing the joy and focus too much on the challenges. I irritate easily, I forget to be grateful, and I get tense and annoyed.

My husband is Swedish, as in being from Sweden. Besides having a penchant for ABBA (for real) and an innate ability to assemble IKEA furniture (and have fun while doing it), he also comes from a proud people who seem born to spend time in nature. Swedes don’t just have summer houses in the country; they have tiny little summer shack out in the woods for when the summer house gets too crowded.

My husband has taught me the value of getting out in the woods to combat urban fatigue.  Surrounded by a few trees, my twitchiness subsides. My breathing deepens and slows. My delight in simple pleasures returns. So most weekends, my husband and I take the kids out of the concrete jungle for a little communing with Mother Nature.

Because our kids are not physically able to hike for long stretches, we’ve developed a raison d’être for these outings: the nature picnic. To say that we rock the nature picnic is an understatement, if you’ll allow for some bragging here. We have separate thermoses for coffee, milk and hot chocolate, thin foam pads to sit on, nesting cups that take up little space in our backpack (I’ll try to find a link some time), a nature guide, a ready supply of wet wipes, and one golden package of our ubiquitous Maria cookies. Year round, we can be found sitting on a fallen tree trunk or a large rock dunking our cookies and listening to the sounds of birds and squirrels.

The coffee tastes better than anything our hipster baristas could craft, the kids are entertained looking for pine cones and sticks, and there is absolutely nothing to do. That is, nothing but settle back into myself, and be gently reminded by Mother Nature that the world is full of an endless supply of things to marvel at, helping me recharge, heal and become whole again.