The End Game

“Look up, buddy.  Look to the door, not at the ground.  See where you’re going.”

Each morning, as my son walks from my car to the front door of his school, he sweeps the sidewalk with his feet, kicking aside anything that clutters the smooth pavement.  He’s been working hard to practice looking forward so he doesn’t get bogged down by every rock that disrupts his clear path from here to there.

In his IEP meetings, too, the educational team charged with selecting his goals and helping him to achieve them, has been picking at all the little spots in his current plan.  I have binders full of reports that tell me what my child can’t do.  We scour the data to generate lists of target goals.  Sifting through the deficits to be remediated and sensory needs to be accommodated, we try to prioritize and maximize my son’s time at school.

But, just like his route from car to school, we can get hyper-focused on his present needs and forget to look up to see where we are going.

In a recent re-evaluation, a school psychologist encouraged the team to assume an “end game” for my son that was, in my mind, unnecessarily limiting.  His words betrayed misperceptions about my son’s abilities and offered a clue to why the team sometimes disagrees on the need for certain goals and services.

When we look up from my son’s current position, what do we see up ahead?

In “Educating Children with Autism” (2001), the National Research Council stated:

At the root of questions about the most appropriate educational interventions lie differences in assumptions about what is possible and what is important to give students with autistic spectrum disorders through education.

NRC-AssumptionsThese assumptions underlie the drafting of goals and the decisions about proper services – what students should be working on, and where their education should take them.

If we fail to clearly articulate a long-term vision for our son – our personal hopes and expectations – we leave team members to make their own assumptions about where his future lies.

When my son was in the lower grades, I avoided verbalizing any far-off aims for him.  His future was too hard to see.  All I knew was that he needed to gain skills across all domains, and fast.  Now that he’s heading to high school, and life beyond school looms, I can’t stay focused only on what he needs right now.  I have to help the team understand what his future demands.

When your special needs student can stay in the public school system until he’s 22, when a diploma is no longer the goal or the expectation, how do you know when he’s achieved success, when he’s ready to leave school, besides the fact that “time’s up”?

In their 2001 report, the NRC concluded:

The appropriate goals for educational services [for students with autistic spectrum disorders] are the same as those for other children:  personal independence and social responsibility.

My son is not yet able to tell me what he wants to be when he grows up.  But our “end game” vision is broad, and is similar to what most parents want for their children.  We look to a future for him that includes the satisfaction of personal growth, meaningful participation in his family, school and community, self-advocacy, and independent living to the greatest extent possible.

We fall into disagreement over the perceived limits on “possible.”

Today, our son needs a rigid structure in which to learn and build confidence.  He may very likely need certain supports all of his life.  Yet, if we hold a definition of “success” that assumes those supports are an absolute, this virtually ensures his dependence on them.  We will neglect to teach him how to succeed if those aides are no longer there.

I admit that it is often hard to hold a vision of a rich and full independent life in the midst of the day-to-day, as my son’s progress inches forward.  There are days when I struggle to heed my own pleas that we must presume competence; days when my son and I are just not on the same page.  But that difficulty is not a reflection of his ability or his future prognosis; it is on me to find a way to connect and to help him realize his potential.

I will never give up believing.  He needs teachers and therapists who also believe.

Maybe the binoculars I look through to envision my son’s future have rose-tinted lenses.

Maybe I am in denial when I argue that he understands more than he can express.

Maybe I am clinging to unrealistic expectations when I ask the team to shoot for more than what the data tells us today.

But I know that a short-sighted “end game” negates my child’s full potential.

His current program should meet him where he is now, taking into account his various needs and ways of learning, communicating, and adapting.  The benchmarks to get him from here to there may be baby steps, but we should always be moving with him on a trajectory that gives him every chance to dream, plan, and strive for more.

With that far-reaching “end game” in sight, we can better assess the obstacles along that path, and help my son brush aside the barriers in his way.

*****

Advertisements

3 comments

  1. asdmommy · November 20, 2013

    You have inspired me since I met you because of this very attitude, and this is why you are the best possible Mom to B. I wish I could mirror it with C, and admittedly, I often don’t. You are so much his best advocate, and if Mom doesn’t believe, who will? I know you’ll continue to forge on and those people on his team who DO get it will continue to pop up here and there. If only we as parents could just fire those on the team that don’t…

    • stayquirkymyfriends · November 20, 2013

      You are pretty damn fabulous yourself, don’t ever doubt it! This is quite a journey, and I am learning every day how to be a better advocate. Thanks, I know you get it.

  2. Pingback: 2013 Quirky Year-in-Review | Stay Quirky, my friends

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s