The Next Hurdle

As seen in the St. Paul Pioneer Press on September 17, 2010.

Last fall my friend Jody shared a piece of advice I could not ignore. As the mother of a now-adult male with autism, she counseled, you must read Nancy Perry’s book, “Adults on the Autism Spectrum Leave the Nest: Achieving Supported Independence.” It was great and timely advice.

Perry writes about a pervasive problem that is complicated for families like mine. “Parents feel guilty for having kids with disabilities; then they feel guilty for wishing their kids were different, even though they are really wishing for a better life for the child. Then they feel guilty for not doing enough, or for doing things the wrong way, or for getting tired of all they have to do.”

While it is futile to feel guilty about things that are outside our control, she contends we should feel guilty for not making a plan to ensure our children optimize their independence.

Perry cites two reasons why independent living is so important. The first is to assure that our children experience “true adulthood” — complete with peer relationships with acquaintances, friends, and (inconceivable to many parents) sexual partners.

The second is to prepare them for the likelihood that they will outlive their parents. She notes, “There is no better time to move a young person to relatively independent living than the time when he or she naturally feels like moving out. And there is no worse circumstance under which to have to move than when dealing with the deaths of one’s parents.”

The words were prophetic. A week after I read her book, my husband, Ted, died of a heart attack and our 18-year-old son with autism was left with one parent, a cancer survivor. Suddenly, Perry’s position was not theoretical – it was real. As I have evaluated the limited options for my fatherless son these past months, Perry’s words have returned to me like a boomerang.

Ted always said Jack would live in our finished basement once our daughter vacated it for college. That could have been a suitable alternative — for a while, at least — with two of us around to meet his needs. Ted’s death was a game changer, though. Perpetuating the caretaking relationship I honed over the years could not be good for Jack or me, particularly without Ted to provide the balance to which we’d become accustomed. Furthermore, if Jack lived in the basement and I died, finding an alternative arrangement would have fallen to family – a burden I am determined not to pass on.

While I am mostly in agreement with Perry, I am mindful that her position is laden with challenges — and not realistic for everyone. For those who have spent years identifying and attending to their child’s needs, the thought of stepping away can be paralyzing, full of concerns about, “Who could do this job as well as I have?” I faced this fear three years ago when Jack left home to attend school in New Hampshire. I appreciate the trepidation with which parents face this dilemma; however, moving him out east was the best decision for Jack – and the rest of the family. Without his helicopter mom at his side, he acquired new skills and matured considerably. Moreover, taking that step gave me the courage to move him recently into a supported-living situation. For the past two months he has lived in an apartment nearby. He receives support with cooking, cleaning, shopping, budgeting, accessing the community, and more. While he typically ignores my phone calls, he has adapted surprisingly well for one who is averse to change and prone to anxiety.

Other parents who work through the emotional hurdles Perry describes may find themselves stymied by financial limitations. To live independently, adults with disabilities need income, either from a job or another source, for there are those inconvenient obligations called rent and utilities. Financial considerations can be daunting. With state and federal budgets stretched taut, funding sources are evaporating. We are in a recession. Qualified workers are out of jobs. How can young people like Jack, with limited skills and myriad challenges, effectively compete in the marketplace? Why would an employer, already struggling to remain solvent, hire him, instead of a fully capable employee who needs no job coach or special accommodations? Absent a paycheck or sufficient social security benefits, how will the Jacks of the world earn enough to live independently?

Navigating the system is frustrating and exhausting, as state and federal agencies have their own policies and procedures, personnel, forms, etc. New legislation has dramatically restricted access to group homes. Apartment living is not for everyone. What are families to do? On Oct. 9, PACER Center will host its seventh annual Housing Resource and Information Fair, at which families can become educated about housing options and supports. I attended the fair years ago and encourage other parents to do so. Acquiring information and making connections are important first steps toward finding the best solutions to important and complex challenges.

It takes time to adjust to changing roles, to gather the strength to be creative, resourceful, and resolved. Like Perry, I’m becoming convinced that when circumstances coalesce so our children with disabilities can follow their siblings out of the family home, that may be the optimal outcome for the whole family.