Graduation Day

My son graduated from Deerfield High School on January 9, 2014.  I know this because I just received his diploma in the mail.

I confess that I’d almost forgotten that he was even still enrolled in high school.  He hasn’t set foot in DHS for over six years.  But he was technically still their student.  They supported his schooling until he aged out of the special education system, and awarded him a diploma like any other student when he finished.

If he had any understanding of the concept of “graduation”, we would have thrown a party.  A huge party.  I would have loved absolutely nothing more.  Planning Natalie’s graduation bash six years ago was a months-long operation and I savored every painstaking detail.  She has made us so consistently proud over the years, and we couldn’t wait to celebrate her achievement.

But the months leading up to Daniel’s “graduation” were more fraught with anxiety than happiness, more stress than waiting on ACT scores or college acceptance letters could ever have induced.  They were some of the worst days since our journey with autism began over 20 years ago.

This grueling period did not come as a surprise.  I’ve worried about the day he’d leave the safety net of the school system for as long as I can remember.  We’ve heard horror stories about finding adult care in our state since Daniel was a little boy.  Even before the extent of his limitations emerged, before the increasingly erratic and intense behaviors which would so shape his future became commonplace, the question of what would happen to my boy simmered malignantly in my thoughts on a daily, relentless basis.

Since December 2007, when Daniel moved to a residential school in Wisconsin, I’ve been ticking off the days until he turned 22, when the support and education he’s received as a student with a disability would come crashing to a halt.  Our school district was conscious of this impending deadline, too, offering support and transition planning since Daniel became a teenager.  But the outlook for adults with disabilities in Illinois is dismal, ranking last in the country in services across the board for some of its most vulnerable citizens.  Waiting lists for residential placement, which my son requires, are years long.  Funding, when you can get it, often doesn’t meet the basic costs necessary for care and productive opportunities for people like my son.

And these deficits in the system were already entrenched before a group home intake manager ever laid eyes on my son’s behavior records.  With so many disabled adults vying for funding and residential openings, no one was knocking down our door to accept a client with a history of aggression, impulsivity and biting.  It took three years to find the group home where Daniel lives now.  It was a tortuous experience.  The home stretch, 2013, will rank as The Bad Year in the annuls of our family history for a long time to come, probably forever.  I could, and may, write volumes detailing the impotence and despair we experienced at the hands of impersonal bureaucrats and ego-driven attorneys involved in this process.  There were days the stress was so acute I survived it moment to moment.

But we also met some of the most dedicated, caring professionals we’ve ever encountered.  Two weeks shy of his 22nd birthday, we moved Daniel to his new home in Ft. Atkinson.  His father’s move to Wisconsin two years ago allowed Daniel to remain in that state, where, though not perfect, the services for disabled adults are twice as good as in Illinois.  I thank God for the circumstances which led to this outcome.

It is not ideal, of course.  Nothing ever is, as several people have reminded me lately.  I still harbor the fantasy I’ve clung to since the day Daniel moved out of my care when he was just 15.  I’ve dreamed of him coming back to me, closer to home, when he reached adulthood and we found a long-term placement.  I imagined him just a short drive away, with frequent visits home, when he’d become reacquainted with our relationship as it used to be.  He’d blow bubbles in the backyard as I gardened, or take a walk with me to Starbucks and throw pennies in the fountain outside.  I’d get his hair cut again by the stylist who always made him seem proud of his “look.”  We’d read the books he grew up with, and new books of his choosing, as we lay relaxed and unhurried, side by side against the headboard in his old bedroom.  He’d begin using again the words he’d once mastered with flashcards and alphabet games through the countless evenings of his childhood.  At the end of the day he’d return to his group home reaffirmed, cradling, perhaps, a new memory that he’d cherish as much as I did.

That’s not quite what happened, though.  He’s in a new group home, but still an hour and a half from Deerfield:  close enough to visit each week, but not the proximity I’d hoped for.  We do know how lucky we are, to have found him a home at all, and a home where we trust the staff and the 24-hour care we can’t provide him.  Given the profound level of Daniel’s needs, we’ve done the best we could have hoped for.

Daniel surprised us all on January 9, when he adjusted to such a major transition more easily than we had dared dream possible.  After a few hours of pacing and agitation, his sister gradually calmed him, and persuaded him to eat dinner with his two new housemates.  We gave him a bottle of soda, and suddenly all was right in his world again.  He seemed to realize that his needs, and at least some of his desires, would still be met, despite his new surroundings.  As we left, he was giving high-fives to the staff and blowing his bubbles like nothing dramatic had happened.  Driving back home that night, my husband, Natalie and I were drained of energy but tremendously relieved. The day I dreaded for years was finally behind us, and it had gone well.

As agreed, I called the director of special services for our school district the next day to confirm that the transition had gone as planned, that Daniel was officially out of the system he’d been part of for 19 years, formally enrolled in a new agency now accountable for his welfare.  He was no longer a student, and would no longer be carried on the rolls of Deerfield High School.  He had graduated.

Congratulations, Daniel. High five.