Setting the Bar

I'm not an athlete.  My strength never did come from my muscles.  But I certainly do admire the way athletes challenge themselves.  It seems to me that the good ones don't so much compare themselves to other athletes, but to their own accomplishments.  Personal bests, training regimens, and individualized goals mix and mingle with creative coaches and hard work to create results.  I'm sure athletes have a brass ring they're reaching for -- an ultimate dream.  Perhaps they set their own bar (whether literally for their sport or figuratively).

I think about that bar when it comes to pole vaulting.  Where do you set it?  I'm guessing pretty low to begin, and then as your skill set improves, higher and higher.  In considering the way we as parents set bars, do we do the same thing?  Do we set the bar at a reasonable level first, then as our children grow in skill, do we move the bar, perhaps with their input, so they have a new, higher aim?

For some reason, likely sheer hope and optimism, it seems most parents set that bar quite high.  We have a picture when our children are placed in our arms of what their lives will be like.  Flashes of brilliance and talent colored by milestones and achievements.  Not a whole lot of consideration of how the skill set will be developed to get there -- the tools, supports, and resources that will be needed along the way.

Based on my own personal and professional experience, when parents of children with autism receive a diagnosis, oftentimes that bar gets knocked way down -- maybe even off the rails altogether.  And they start looking to others (doctors, educators, social workers, etc.) for where and how to set the "new" bar.  What will my child's life look like after high school?  Will he get a job?  Will he get married?  Will she be able to live independently?  Suddenly all the flashes of color become washed out to gray uncertainty; and I'm not sure why we even had those flashy colors to begin with.

None of us knows how our child's life will unravel -- whether they're typically-developing or have autism spectrum disorder.  We can look at statistics and try to come up with a framework for a bar.  But human beings are surprising, somewhat unpredictable creatures -- adept at creating and using tools.

So wrap your head around this: don't "set" the bar.  Rest it.  With those high hopes and optimism.  And methodically seek out those tools, supports, and resources -- the coaches, therapists, educators, friends, interventions, etc. -- to develop the skill set needed to get over the bar.  Then move it up, fully expecting you can raise it higher.

My son with autism is now 14.  Based on his input, we've now rested his bar at high school, an apprentice program, graduation, and a three-year college program, fully expecting him to be gainfully employed thereafter.  With the framework of his fledgling Postsecondary Transition Plan, we're working together as a team to help him smash personal bests.

So keep the cushy mat under them to protect them when they fall.  And make sure the training and the equipment they have are adequate for the attempt.  Keep celebrating achievements and learning from mistakes.  All in brilliant color.  Your student is worthy of nothing less.

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.

Sowing the seeds of self-determination

There's this word in the Special Education universe that's often misunderstood until, as a parent, you and your child are in the thick of it: Transition.  It's not the lowercase transition, which occurs so many times in the life of a student with special needs.  There's the transition from an Individual Family Service Plan (IFSP) that preschoolers have from birth to age 3, if they qualify, to the Individualized Education Program (IEP) that the local school district drafts.  Then the transition from Early Childhood classes to Kindergarten.  Then from elementary school to middle school.

And somewhere along that middle school time in the state of Wisconsin, or in high school according to federal law, families start to hear about this Transition.  Transition is the period of time and series of events required to prepare students with special education needs for life after secondary education.  While students with IEPs may graduate with their peers, they may also opt to stay in the public school system, receiving related services until they're 21 years old.  This Transition planning is multi-faceted and critically important.  Perhaps most importantly, it's a time when students are required to engage actively in the process and select desired outcomes.

The Wisconsin Department of Public Instruction has a series of four publications intended to assist Transition teams with various aspects of the process.  There is one that speaks to the steps families and schools can take when students are yet in elementary school: Opening Doors to Self-Determination Skills.  Here's the list for students (found on p. 7 of the booklet):

• Know your strengths (what you are good at).
• Know your areas of need (where you need help).
• Know your interests (what you like).
• Know what kind of support you need to be successful.
• Learn how to make choices.
• Be a part of Individualized Education Plan (IEP) meetings, at first by introducing IEP members and describing yourself (interests, likes, dislikes).
• Share a list of accommodations you need with general education teachers.
• Participate in clubs, sports, and other activities kids your age are in.
• Begin to understand your own disability and what it means to your learning.
• Choose a time and place to study and do homework at home each day.
• Help out with family chores (making dinner, shopping, cleaning your room).
• Volunteer and help out in your local community.
• Enjoy who you are! Learn about yourself. You are more than your disability.

How can students with autism be self-aware if we don't start having these conversations with them early?  The better they are at being familiar with themselves, the better they will be able to determine their own needs.  Knowing their strengths and their supports is part of self-determination.  And being able to share those things with peers, teachers, and eventually employers, will make that Transition more smooth.


So as a parent and professional, I encourage you as parents and teachers to be Transition-minded with your students when they are in second grade.  And by the time your student with autism is in middle school, they will be far more likely to participate meaningfully in this mandated process.

The Social Butterfly Effect

This week's post is the kind that will make you science types cringe.  I'm going to get all metaphorical with your physics and play on words held by theories because I like the way it sounds.  So there.  But stick with me.

Last week, I gushed about the touchdown play my son's team orchestrated for him during a recent flag football game.  Let me tell you how that ten-second huddle will lead to the meaningful employment of an adult with autism 20 years from now.

First, a little something about the butterfly effect.  The general idea is that the flap of a butterfly's wings can impact weather patterns somewhere else in the world.  The thought of the gentleness of this silent flight rousing a tempest espouses chaos theory talk that's way over my head, but I can grasp the impact on atmosphere.

In sociological terms, we think of the ripple effect.  Someone touches their community with a charitable act, and the outgrowing concentric circles create pay-it-forward waves of goodwill.

ripple effect © by leafy

Think of that touchdown play as something larger than passing a ball.  Consider the egos that were set aside in order to build another's up.  Take a moment to realize the cooperation, the belief in the underdog, and the flexibility these teens exhibited.

Managers -- when you're putting a team together at work, don't you want to choose the players who know how to work together and focus on each others' strengths instead of attacking weaknesses?  Don't you want to reward the adaptability that leads to the desired outcome?  These are the qualities of leaders.  And the employees who clinch the deal and look back with gratitude at their colleagues who helped put it together are the ones who earn respect and work with humility.

When your student with autism applies for a job someday, he may interview with the quarterback for my son's flag football team.  And that young man will think of the day he huddled his teammates behind that line of scrimmage, and gave a kid with autism a chance to be the team hero.  He'll remember how little they as a team had to change to make a world of difference for my son.  And the difference my son's joy made on that 8th grader's heart will encourage his adult self to hire your student with autism.

All because a butterfly flapped its wings.