Monday, March 25, 2013

From Barriers to Bridges

Earlier this month, I fawned over the friendship between Andrew Jenks and Chad, a young adult with autism on MTV's "World of Jenks".  The symbol that so impacted me was the bridge they crossed together at an amusement park.  Jenks was both the catalyzer and supporter for Chad's successful crossing.

Did you see the bridge they crossed last week?  They were at a park of sorts where Chad reported he likes to go walk and think alongside a brook.  He likes to see the crayfish and smell the country air and listen to the calming water as he paces.  (Many people with autism, including my son, report they think better when they are moving -- something about that kinetic energy.)  While Chad wasn't afraid of the low, sturdy bridge he and Andrew crossed together, he was trying to wrap his head around this transition he's making from going to school to graduating.  And Andrew was with him to experience that thought process; to encourage him as he crossed that bridge.

And I want to focus on that critical support person role for this week.  Let's back up to the bridge in the first episode.  What if Andrew said, "You're afraid of heights?  Well then never mind.  We'll go your way." While that would have been respectful of Chad's feelings, it would have put up a barrier to his joyful experience.

In the second week, when Chad was going to his senior prom with his girlfriend, his intention was to experience his first kiss with his Amanda.  He was crossing a metaphorical bridge of sorts -- demonstrating his desire to cross from a platonic relationship to a romantic one.  What if Andrew hadn't given him that pep talk in the limo and offered that cologne?  Those steps made the bridge less threatening.  Jenks could have put up a barrier ("You're not ready for that kind of relationship"), but that would have been a barrier to that milestone moment for both Chad and his girlfriend at the prom.

If you're supporting someone with autism, perhaps as an educational assistant (maybe they call you a paraprofessional or teacher's aide), I'd like to ask you to be reflective of your interactions with your students on the spectrum for a moment.  Are you a bridge or a barrier to social experiences in the classroom and beyond?

Before your crinkle your nose in defense, know that I understand how complicated the nature of your role is.  I have a great deal of respect for your job.  You walk this tightrope between fostering independence and preventing learned helplessness.  You are not the special education teacher, but you're the one in the trenches (er, classroom), doing the hard work of managing behavior through modified curriculum, often having to make adaptations on the fly.

photo courtesy of Landscape Structures®
But consider what's happening (or what has the potential of happening) between your students and their peers as you do those things.  Your student falls behind with a series of instructions the classroom teacher delivered.  Do you sit between your student and his typically-developing peers, thereby effectively preventing the peers from noticing your student has fallen behind and offering to help (or giving the student the opportunity to ask his peers for support)?

Your student drops her pencil while writing and has a hard time discerning all the motor steps required to retrieve it efficiently.  Do you swoop in and grab it for her, or motion to the peer sitting next to her to offer to grab it?

The class begins a community building exercise that requires a sophisticated level of social engagement.  The student you're supporting doesn't have a whole lot of reliable verbal output.  Do you recommend to the speech language therapist that she develops a method of response to keep your student with his class, or opt out of the experience, essentially further removing your student from being regarded by his peers as a social being?

Your role is crucial to meaningful inclusion.  You have the opportunity, likely several times a day, to be a bridge or a barrier.  Thank you for not only sometimes being the bridge, but building the bridge with inadequate materials in less time than you ever thought possible; for pointing out the bridges to the students; and for helping your students to cross them.

Monday, March 18, 2013

HighLight It Up Blue, year 2!

Welcome to the 2nd annual Good Friend HighLight It Up Blue for Autism campaign!  Last year, well over 100 of you in the metro Milwaukee area visited Salon BrillarĂ© in Pewaukee, or went to one of our on-location events in Waukesha, New Berlin, or Milwaukee, to get blue natural hair extensions, feathers, and/or sparkly tinsel strands to help create autism awareness.  This year, we've added two more stylists and locations!

Not only will Janet D'Amato be taking appointments at Salon BrillarĂ©, but also Erin Hitt at Merle Norman Salon (Brookfield Square) and Gina Andrade of Hair by Gina (a Solo Salon, Waukesha)!  For $10, clients can choose one product, or pump it up or mix and match any three choices for $25 (per client).  New clients are welcome!  And they'll be at our Hoa Aloha Autism Awareness Bowling Event on April 14!  We're working on other on-location opportunities.  Stay tuned to our Facebook event page for more information.  Or if you'd like to get us in at your school or office, and you're sure at least 10 people would participate over the course of an hour or two, contact Chelsea (414-510-0385).

I know, I know -- it's extreme, right?  Blue hair?!  How the heck are you supposed to blend with blue hair?  That's kind of the point.  We don't want students with autism to feel like they have to blend.  They have an invisible disability with some very visible manifestations.  Be willing to stand out and stand up for them during National Autism Awareness Month!

But if blue hair is just too personal, what about blue light bulbs outside your house?  Check out Autism Speaks' Light It Up Blue campaign.  World Autism Awareness Day is April 2!  Blue it up!

Monday, March 11, 2013

Crossing Bridges

In the HBO Films movie Temple Grandin (2010), opening doors is a thematic image.  Since Temple is a visual thinker, she latches onto the metaphorical concept of doors opening to new experiences.  As she walks through door after door on her journey to her life's work, we see how many people were there to guide her to or through those doors.

After watching the season premiere of "World of Jenks" on MTV last week, I saw a new thematic image in this journey of supporting people with autism: crossing bridges.  Andrew Jenks, the documentary film maker whose immersion in the lives of young adults is the subject of his MTV series, is following three 20-somethings this season: Kaylin, a cancer survivor and fashion designer; D-Real, a dancer and community activist; and Chad, a young man with autism going through the "Transition" from secondary education to whatever comes next.

Chad espouses in me thoughts of my own 14-year-old son, who's staring ahead toward his high school years.  Watching Jenks with Chad reminds me of my son's daily living skills mentor.  She challenges him to try new things, as Jenks did with Chad in that first episode.  Jenks learned that Chad loved to visit The Castle, an amusement park of sorts with a miniature golf range.  There's a suspension bridge there, and as Chad is afraid of heights, he didn't want to cross that bridge.  He was accustomed to finding another way.  But Jenks encouraged him to try -- even offering to hold Chad's hand as they crossed together.

Chad's anxiety-ridden face transformed at the other side of the wobbly structure.  The glow of pride came over him, and the sparkle of joy.  Once he experienced that exhilaration, he wanted to go back over and over that bridge -- without needing Jenks' support.  Chad saw the fun in something he was previously adamant that he couldn't or didn't want to do.  But he might never have had that experience if Jenks weren't there for him.

I am excited to watch Chad cross many bridges this season through the World of Jenks window.  And as sad for Chad as I will be when Jenks is no longer there to help him cross bridges, I will trust that others will fill those shoes.  Maybe it will be a job coach or vocational services counselor.  Maybe it will be his girlfriend or a "neurotypical" peer.

And I know my son's daily living skills mentor won't always be there to challenge and support him as he tries new things.  I hope Jenks' audience is inspired to befriend and support the Chads, like my son, of the world.  Because they can do and experience so much more than most of us have ever given them credit for.

Monday, March 4, 2013

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.