Talking to Children about Talking

A couple weeks ago, I was with my 12-year-old daughter and 15-year-old son at a public park pool in our community.  It's generally a great place to connect with friends from school.  But not all children are friendly -- or at least they say some pretty unfriendly things.  One group of 14ish-year-olds made my son particularly upset when he tried to interact with them.  Seeing his anguish, a couple of them initiated personal apologies to him on their own.  And while that social bravery was impressive, it was like this illustration:

So while I'm thinking about it, I'd love to share with you parents and summer day camp directors and staff members a top five talking points list about encouraging healthy social interaction in the community -- especially because around 15% of the children they encounter will have some neurological difference, or invisible disability.

1. We are all different.  Some differences you can see, like hair color or wearing glasses.  Others you can't, because they're based in the brain.  Brain-based differences cause some children to perceive parts of their world ways most other people do not.  There's nothing "wrong" with their perception; it's just different.
2. While we are all different, we all want to belong.  Some kids are better at expressing their desire to be friends than others.  No matter what, no child wants to be told to "Go away" or hear "Leave me alone" when they're trying to make a social connection.  If you're already hanging out with a group of friends, consider inviting the child who approached you to hang out, too -- even if it's just for a few minutes.
3. If the child who approached you to play says something that makes you uncomfortable, tell him or her in a matter-of-fact but helpful way.  Better yet, give them a more appropriate thing to say or question to ask.  Often times, children with autism spectrum disorder (ASD) have fewer social tools in their tool box, or may use them in a clumsy way.  They're trying; be respectful of their attempts, but also aware of your own boundaries.
4. Really consider how you would want to be treated if you were brought into a place where you didn't know anybody.  Some of your friends might think it's funny to mess with someone with a brain-based difference.  They might not think right away about how that child is understanding others' intentions. This might just seem playful to you or to them, but it's really called disability harassment; and it's against the law.
5. If you see or hear someone being treated in an unkind way, please bring it to the attention of a nearby responsible adult.  If that's at the pool, it's a lifeguard.  If it's at camp, it's a counselor.  Everyone has a right to feel safe and respected in our community.  At all times.  No matter what.

I am sure we all want our children to be good citizens.  I know that parents aren't always aware of how their children behave in a loosely-supervised social groups.  Remember that social emotional instruction is continuous and just as important this summer as finding a good book to read.

Getting Off the Sidelines

By the time students are in middle school, those who want to be athletes are getting comfortable in their sport(s) of choice.  Whether the involvement is meant to be just exposure to the activity or full-on competition, between the school's and community's offerings (outside of rural areas), typically-developing adolescents can generally find something that suits them.

Those with developmental or physical differences have a harder time fitting in.  (Just ask Damian Buchman, founder of Adaptive Scholastic Athletic Program, how difficult it is to find the proper equipment and facility for wheelchair sports!) Some students with autism might really enjoy what Special Olympics or other local adaptive recreation programs (TOPSoccer, for example) have to offer, whereas other athletes prefer to compete with their neurotypical peers.  Either way, the Office of Civil Rights (OCR) is putting schools on notice about their institution's offerings through a "Dear Colleague" letter published last week by the U.S. Department of Education.

I am delighted that the OCR is clarifying the application of Section 504 of the Rehab Act on this issue.  After all, as the letter points out, "access to, and participation in, extracurricular athletic opportunities provide important health and social benefits to all students, particularly those with disabilities.  These benefits can include socialization, improved teamwork and leadership skills, and fitness."

As a parent, I have been invited to so many school open house opportunities where there is lively presentation and discussion about the extracurricular opportunities afforded to typically-developing students, but when school representatives are asked about programs accessible to students with special needs, there is often a confused response, sometimes as if the possibility weren't even considered.  Our best-case scenario has been that indeed, my son with autism is welcome to be at the given activity, but there will be no support provided by the school.  (See also "The Social Currency of Extracurriculars".)

I have regarded that lack of support as the school flirting with disability harassment, and I believe this letter validates my concern -- and likely that of so many other families.

Of course, there's probably not a school in the nation that doesn't want to support its students with special needs in their participation in extracurricular activities, but where will the resources come from? In Madison, Wis., one high school supported a student with autism by hiring a college student to serve as his guide during track events.  The New York Times article (Aug. 1, 2010) included information about how much more expensive it is to educate a student with a disability versus a typically-developing student, and board members acknowledged the precarious nature of budget funding sources.

So how else can we get our students with autism off the sidelines and into the game?  Here are some ideas (subject to your district's restrictions on background checks or other liability concerns):

• Partner with an area college or university's Education, Health Care, or Psychology program to recruit students who need volunteer hours.  Try to keep the same student pair (as long as it seems to "click") for the duration of the activity so the student with autism can develop a rapport with his support person.  Consider transportation needs.
• Develop peer mentors in high school who can work with middle and high school students to offer support during activities.  Use service organizations like Key Club or honors groups, billing the role as a leadership opportunity.
• Get Applied Behavior Analysis line therapists to support students.
• Ask the student's Speech-Language Pathologist to review the objective or rules of the game during scheduled interventions (not during the activity itself).  Have the SLP create visual supports that any support person or even the student himself can use as cue cards, of sorts.
• What about those background checks?  Can you use the one the college or university required for admission into the program?  Will a Medicaid waiver cover that expense?  Is there a parent-teacher organization that can set aside funds as an annual budget item?  What about an athletic booster group?

Teachers and parents are experts at finding creative solutions.  What have you done that's been successful?

The Social Currency of Extracurriculars

During intramural flag football last week, my 13-year-old son with autism scored a touchdown.  But it was so much more than that (as if that weren't enough of an accomplishment!).  It was a snapshot of what every inclusion proponent dreams of.  Two teams of 7th and 8th grade students played, my son's team with enough members that they had to sub several players in every four plays (or so).  But let me give you some context first, which likely applies generally to middle and junior high schools.

Since there aren't enough resources in our school district to provide support personnel for students with disabilities, it's hard to find them in activities beyond the school day.  Yet that's exactly where they need to be in order to build rapport with typically-developing classmates.

There is little opportunity for socialization at school outside the classroom.  With teaching time at a premium, educators of middle school core curriculum classes have enough time to do a bit of community building at the beginning of a term, but that's about it.  Then, just as students with ASD are getting comfortable enough with their physical circumstances to learn about their classmates, it's time to jump into learning.

What about socializing at lunch, you ask?  Have you been in a middle school cafeteria?  It's about the most awful sensory environment imaginable.  Many students with autism have to devote their entire well-being to keeping it together in order to eat.  And I'm sure I don't even have to tell you about the bus rides to and from school.  If students are on the general ed bus, they're likely anxiety-ridden on the way to school and exhausted on the way home.  Plus, in both environments, there is likely a lack of adult supervision, which means no safety net if the student with autism makes a social misstep (or worse yet -- the neuro-typical students with whom he or she is attempting to communicate become disrespectful of the outreach).

And the social currency in middle school is the extracurriculars: sports, clubs, councils.  This is where students express themselves in a context of what they've chosen and enjoy, and where they're noticed, for better or worse, by their peers.  These are the stories they tell their friends in text messages and at lockers.  This is where, when we support our students with autism, they can become heroes.

So I'm glad to be there as a support person for my son when he wants to play flag football.  I will admit that I remain cautiously optimistic about good outcomes for these opportunities.  When it comes to competitive performance, my son has two modes: horrible, negative self-talk or animated, celebratory "smack talk".  The former sounds whiny and the latter, boastful.  We (the entire educational team at school, from the special education teacher to the speech-language pathologist) work on moderating these extremes outside the games, along with providing visual explanations of the rules and positions involved in the sport.  We also talk about what it means to be a good teammate.

Clearly, this last piece is catching on this year.  All these years of peer education and character building have laid a foundation for this touchdown moment.  My son has made a positive enough impression to be accepted onto a team, and the members have sized up his abilities.  They've taken a couple cues from the way adults interact with him, but at least a couple of them feel comfortable to work it out on their own.  My big 5' 7", 165-pound 8th grader was content to be a lineman for the first half of the game, but was clearly jonesing for an opportunity to catch the ball.  So his team set it up.  And the other team saw it.

The first play failed ... miserably.  The quarterback tossed a soft sideways pitch to my boy who caught it, made a few hesitant leaps forward, and threw it clumsily back at an opposing teammate, who luckily couldn't catch the wobbling ball.  The second attempt was better planned by the quarterback, who huddled everyone together briefly at the line of scrimmage, but made very sure my son knew what to do.  The snap to the quarterback ... the QB drops back ... my boy runs a few yards out and up ... he receives the pass!  But this is the coolest part -- the QB and the linemen start running ahead of my boy to make a path for him along the sideline; and the other team sees what's happening, and a couple of the chasers lose steam.  As everyone is cheering for him to make it to the goal line, a boy comes perilously close to snapping my son's flag from his belt, but tumbles off out of bounds behind him instead.  My son stood ecstatically in the end zone, jumping for pure joy, while everyone celebrated his accomplishment.

And as I was thanking his teammates and the other kids for orchestrating the triumphant play, one of the girls from the other team said to me on the way back down the field to receive the punt, "That boy who fell is my brother.  He was really trying to get him.  That touchdown was all him."

I know middle schoolers don't want their parents around at school, and they all want to find their own way.  But I'll tell you what: I am so thankful to be the mom of a boy with autism.  Because if I weren't, I wouldn't have had to chance to see what a hero all our kids can be.