Essay

Change And Fear

By: Joan Goodreau, 5/17/2012 12:12:17 AM

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“Now at last I feel free to die.” The father who told me that was relatively young, but had just made arrangements for his son with autism spectrum syndrome to live in a support home and work in a day program.

“Congratulations,” I said because adult children with autism need to learn to live as independently as possible. I did not tell him that my son has lived in support homes and worked in community programs for more than ten years, but my worries about his future were not over. The only constant in my live is change that I cannot control.

I lived with present fears and challenges when I raised Ian and my three other children, and now I fear for his future. What is the rest of Ian’s life going to look like? Coordinating Ian’s health, housing and community needs are my full-time jobs now, but who will be his advocate in the future? The Northern California Regional Center counselors have too many clients and too little money. Ian has a sister nearby, but her life is filled with work and her own family.

“Good bye, this is my last day here. They are transferring me to another home,” says Amanda, who has worked for six months in Ian’s support home in a mountain community. Ian and I have both become attached to her. Amanda cut his hair just right, made sure he did not wear the same sweatpants every day and applied his prescribed “behavior plan.” So begins another change for Ian who needs constant, consistent supervision in his daily life. Another stranger will have to learn about Ian. His occupational program and home are only as good as the experience and hearts of the people who work there.

There are reasons for staff turnover. College kids move on, good workers are transferred to trouble-shoot at more difficult homes, sympathetic staff burn out with the demands of caring for people with special needs. Why stay when you can earn more money working at McDonald’s with less stress and hassle from consumers, parents and administrators?

Our children with autism have problems adjusting to change, but we parents do too. When our children find success in a program, there are changes because of lack of staffing, transportation and funding. We get frustrated when we cannot control the uncontrollable. Like all parents, I want hope for Ian’s happiness and not fear for his future. Out children have to learn to adapt to changes, good and bad, and so do we.

Changes In Life

Becoming the woman you were meant to be

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