You Expect Him to Do What?

/ February 16, 2016

By Janet Shouse

About the Author

Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

 

When our son was first diagnosed with autism, one of the phrases we often heard used was “developmental delay.” The word “delay” is defined as a situation in which something happens later than it should, which was certainly true for our son. At 2½, he had the language of an 8-month-old. But the term delay brings with it the idea that the “something” will happen eventually. The delayed plane will arrive at its destination. School will begin as usual after a two-hour delay.

I thought if we provided enough therapy, our son would eventually “catch up,” reach that destination of being able to communicate verbally and effectively. In those early years, we expected that he would catch up, do all the things his twin brother was doing, and eventually go to college, get a job, maybe get married.

Then somewhere around fourth grade, I began to realize that the “catching up” idea was an illusion. And I began to think that my son would never go to college, never get a job, never get married.

At age 20, my son still communicates in very basic language. He can make simple choices, if you offer him the choices. He can answer yes-and-no questions, but sometimes his answers are not accurate. In addition, he is not able to tell us about his day, his friends, his feelings, or what he’s thinking.

However, between his fourth-grade year and 12^th grade, I began to meet individuals who really focused on the possibilities for people with significant challenges. I learned there are colleges and universities creating post-secondary programs for students with intellectual and developmental disabilities.

I learned that a “successful job” for someone like my son might be a few hours a day, several days a week. Previously, my only thought had been, “he can never work a 40-hour-a-week job, therefore he won’t have a job.”

After years of being a vocal proponent of inclusive education, I had never been enthusiastic about the idea of a “sheltered workshop,” a place where people with disabilities are brought together at a site and paid pennies a day for simple piecework such as folding pizza boxes or stuffing envelopes. The reality today is that our nation is moving away from sheltered workshops toward competitive, integrated employment, where people with disabilities work with people who do not have disabilities and earn at least minimum wage.

My son is currently learning vocational skills as part of his high school’s Transitions II program for students with disabilities who are 18 to 21 years old. He stocks the snack shelves and coolers in the high school cafeteria, he helps with shredding at the local public library, and he is learning how to use public transportation.

Some people are very surprised to hear that I am expecting that my son will get a job when he leaves high school, and that’s OK. Because I would have been surprised by that comment 10 years ago, too.

Next week, find out why both parents’ expectations and teachers’ expectations of students with disabilities are more than just a nice thing to have.