The yellow school bus made its last stop at my house today. Forever.
With graduation ceremonies ending, this milestone is typically a reason to celebrate. But for our family, it's just the opposite.
My son Robby is one of 70,000 individuals in California diagnosed with autism.
It's an alarming statistic -- especially since there were approximately 4,000 individuals in 1992 -- the year he was born.
The yellow school bus has been Robby's lifeline since he was 4 -- taking him to a world of caring teachers, academics and activities. Rob turned 22 in spring and for special education students, that's when public school officially ends. In his last year, Rob thrived in a special "transition" class that focused on life skills and job training.
But now there is no place for him to go.
I started our search a year ago. Feeling optimistic about all he learned, I inquired about a special program that "catered" to individuals with autism. Acceptance would mean a chance to live in a dorm, follow a routine, and gain job skills. But these programs are now more selective -- catering to higher-functioning (Asperger's syndrome) individuals and leaving behind those with mild to moderate delays, like Robby.
We did not give up. We tried several Bay Area programs but they had two-year waiting lists. And sadly, the only programs with "openings" did not seem at all appropriate. Robby is capable of so much more than sitting around all day, just to pass time.
So now, here we are ... after 18 years in public school with structured days and opportunities, Robby, like many others, is being left behind.
I never envisioned this outcome. Robby had wonderful teachers and loved school. He was the honorary drum major for his high school band. He volunteered in the cafeteria, student store and at a local gym. He recently gave a speech before a large audience honoring his teachers and he excelled at Special Olympics.
Yet sadly, our experience appears to be the norm. Post-high school programs for young adults with special needs are not readily available -- even though approximately 93 percent of Californians with autism are under the age of 31. That's more than 65,000 individuals! Are they being afforded the opportunity to create a meaningful life?
The Individuals with Disabilities Education Act (IDEA) mandates a free and appropriate education for special needs individuals through age 22. Students must also be trained for employment and independent living. I believe our school districts, for the most part, do a good job of providing this. But what's the point if there aren't opportunities to use those skills? Why can't there be a "life after high school" for all who want it?
A few years ago, I read a tragic story about a Bay Area mother who killed her 22-year old son with autism and committed suicide. Reportedly, she had tried desperately, but unsuccessfully, to find a day program willing to take her nonverbal son. Obviously, a terrible and extreme reaction -- but her frustration at finding an appropriate program was real. They don't readily exist or if they do, there are long waiting lists or stiff competition. I feel like I need a marketing campaign to "sell" Robby and his capabilities.
It's time to change this. All stakeholders -- parents, educators, legislators and community leaders -- must work together to expand options including new work and day programs. The premise of IDEA should be extended to ensure lifelong learning, social and job opportunities. And we must act now -- before those two-year waiting lists extend to five.
I took a picture of Robby on the last morning he boarded the yellow school bus. It was bittersweet for me. I am so grateful for the aides and teachers who always encouraged Robby work hard and be his best.
Now, I just need to find a place where he can continue to do that.
Susan Houghton is the board president for Sunflower Hill, a 501c3 nonprofit organization (www.sunflowerhill.org) working to change the paradigm of living options for individuals with special needs. She lives in Livermore with her husband, Larry, and son, Robby.