Celebrating You-ness

Since March 2 is a celebrated day in American literature, I thought I'd take this week's blog and make it an homage of sorts to the late great Dr. Seuss (Theodor Seuss Geisel).  His books have been favorites on children's lists for generations, and many a memorable quote are immortalized.  One of my personal favorites (though arguably misattributed to Seuss, as there is no citation) adorns each of my children's bedroom walls in a frame:

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.

Here's why, as the mother of two children with autism spectrum disorder (ASD), I believed this was so important to impart to my kiddos.  At the time, both of my young children were receiving intensive, in-home Applied Behavior Analysis (ABA) therapy.  The team meant well as they made program goals for them, including one for my daughter to replace her self-stimulatory hand-flapping behavior with something "more appropriate."  As we all worked harder week by week to get her to recognize the behavior as odd, it occurred to me that we were asking a 6-year-old to perhaps be more self-conscious than was necessary.  After all, shouldn't her peers accept her for who she is, hand flapping and all?  And if she could explain this behavior had purpose, which she told me helps her use her imagination, shouldn't that be good enough for her friends and caregivers?

I decided it was indeed good enough, and we stopped that program.

My children have differently-wired brains.  There is likely no amount of ABA that will graduate them off the autism spectrum.  Indeed, the interventions we've employed, including ABA, have made mind-boggling differences in their abilities -- particularly in the case of our now 11-year-old daughter.  But to insist they repress their uniquenesses for the sake of universal acceptance is to deny their thoughts and feelings -- to ask them to be other than who they are.

And I became convinced, and wanted them to know, that those who mind don't matter.  And those who don't mind, because they've taken the time to understand (after we'd taken the time to teach), are their true friends.

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.

What's in a name?

Indeed, a rose by any other name would smell as sweet, as William Shakespeare's love-struck Juliet surmised. But have you ever tried to cultivate roses?  They're a fussy flower (at least in Wisconsin's corner of the gardening universe).  So if Juliet had cared for her rose bushes in the same manner as her hardy mums, she might be rather disappointed come spring.  In fact, her sweet roses would be thorny, dead sticks standing barren in defiance of warmer days.

The point is that if we do not name a rose accordingly, we will not know how to care for it properly.  We'll neglect its special needs for lack of understanding.  It is the same with children with differently-wired brains.  We can pretend all we want that diagnoses don't matter.  We can insist that all children are special and show them that flowers have varying blooms.  But without specific instruction and correct terminology, they'll unintentionally mistreat the plant.

Ignoring autism in the classroom is as misguided as ignoring roses in the garden.  Look not at names and diagnoses as restrictive labels, but as descriptors that bring to mind a specialized set of skills for instruction and interaction.  People with epilepsy have a differently-wired brain, but I wouldn't use the same skill set in modifying curriculum for someone impacted by seizures as I would for someone impacted by autism.  And students with ADHD have different reasons for their difficulty in attending to instruction than students with autism do.  Neuro-typical peers socializing with a friend with epilepsy may not have to change their means of communication, but they likely will when connecting with a classmate with autism.

See what I mean? Using proper terminology with children of any age is a way to share a common language and attach common definitions.  Certainly, in the case of autism spectrum disorder in particular, those definitions may change over time.  (Just wait for the DSM-5 to be released!)  But if we're all on the same page equipped with the same lexicon, then we can treat one another with the respect and understanding we each deserve.

And if you need any help establishing that lexicon, Good Friend, Inc., is here to serve!

To tell or not to tell ...

(adapted from our Feb. 2010 newsletter)

As we talk with parents of children with autism spectrum disorder (ASD) and their teachers, we are often asked a form of the following question: “Is it a good idea to share the student’s disability with his/ her classmates?” Teachers cannot share that information by law, as it violates the student’s privacy. Parents are often concerned the disclosure of the label will lead to bullying or teasing. And if a student is doing “fine”, why rock the boat, right?

As mothers of students with special needs ourselves, we consider our children’s developmental stage and self-awareness before deciding what information will be shared with whom and in what format. We encourage teams supporting students with autism to do the same.

Socially, we have found that children tease what they don’t understand. By taking the mystery out of the differences, we can begin to teach acceptance. Once we accept that the student’s limitations are not as a result of willful disobedience or failure to perform, we can start to foster empathy.

We have gone to schools before where there are a number of students in the same grade level with ASD. Some parents were willing to consent to disclose their child’s ASD, whereas others were not. In

those instances, when we come in to do a Peer Sensitivity Workshop (PSW), a couple of things happen: 

1. We are able to identify within minutes through observation who the other children on the spectrum are. 
2. As we interact with the typically-developing peers about autism, they ask about or comment on this classmate we suspect has ASD. Because we do not have parental consent, we will not discuss that child to maintain his or her privacy. However, it is important to note that many, if not all, of the children participating in the PSW have identified differences long before we came to teach them how to be good friends. And now instead of having their questions answered in a positive, caring atmosphere, they may be left wondering.

While we are not suggesting it is appropriate universally to divulge a child’s diagnosis, it is worthwhile for caregivers to do an honest cost-benefit analysis. In our opinion, it is better to start the discussion early so everyone is better equipped to be supportive.

If you want help establishing a common language and a culture of acceptance for your student with ASD, contact us (Chelsea 414-510-0385, Denise 262-391-1369).