Imagine standing at a podium and delivering a speech to a large audience, getting to page four only to find that the remaining pages are blank. It almost seems cruel – you have worked hard to get to that podium, with great accomplishments to show for it, and you have prepared intensely for this very moment. Yet, despite all that, you are now overcome by fear, you lack direction, and you do not have a clue how everything will play out.
If you are a parent of a young adult with autism who is about to graduate from high school (or “age out”), this is exactly how you feel. I know this firsthand; my son, CJ, will graduate from a high school life skills program as he approaches his twenty-first birthday next year. I am overcome by fear and overwhelmed with navigating the next steps in CJ’s future. And, at this most important moment, someone has taken away my GPS.
For many parents raising a child with autism, there comes a time when things settle down a little. You become comfortable with a secondary school program and the dreaded IEP meetings no longer seem so bad. Transportation to and from school goes smoothly and summer programs are set. All of this peace changes once high school is over; the safety net of a program you know disappears and the school district is no longer responsible for services. Even for parents like me who have planned far in advance, there doesn’t seem to be enough time to make this important transition work.
I have received dedicated guidance from a wonderful transitional coordinator I hired several years ago to help plan for CJ’s post-high school transition, the support and input of a talented classroom teacher, and done considerable research on my own… and have only been able to identify one post-high school program that appears to be appropriate for CJ. I have gone through numerous steps in the state system to obtain post-high school services: orientation, intake, paperwork, finding a Medicare service coordinator, eligibility approval, finding a Medicare broker. And yet, after nine months, I am only now at the starting gate. I have no “Plan B” and, yes, I fear my son will be sitting home every day once he graduates. I never thought I would say this, but dealing with CJ’s autism diagnosis at age two and a half, navigating my way to find appropriate early intervention services, setting up a home ABA program, and finding good schools seems far easier than the daunting task now before me.
But despite the fear, the tedious process, the constantly changing rules, and the dearth of appropriate programs, I am extremely optimistic and filled with hope. How can that possibly be? Well, it is actually quite simple. Seventeen years ago, CJ did not speak, had meltdowns every day, lacked judgment, and there appeared to be no chance that he would ever socialize with peers. Today, CJ talks non-stop, has a calm demeanor, is the family’s moral barometer, and plays three team sports in special leagues. So, while we may be at a podium, in front of a large audience, looking at a blank page four of a 10-page speech and overcome by fear – we got here. And we will get through the speech, even if the pages don’t have words on them yet.
When OAR asked me to write this month’s Message column for The OARacle on CJ’s upcoming transition from high school, I initially thought it was quite coincidental that OAR would be focused on my current challenge. But, nothing about OAR’s work is coincidental. OAR has always been in touch with the very real challenges families face and several steps ahead on these important issues. OAR’s focus and initiatives on post-high school transition is yet another example of its very relevant work, willingness to delve into difficult areas, and continuing quest to improve the quality of lives of those living with autism.
Lori Lapin Jones has been a member of OAR’s Board of Directors since 2005 and the Board’s vice chairwoman since 2010. She resides in Great Neck, New York. Her younger son, Charlie, is a senior in high school and has autism. Her older son, Dan, is pursuing a master’s degree in special education. Lapin Jones is a volunteer for Special Olympics and has written and spoken on the topic of raising a child with special needs. She maintains a law practice in Great Neck, New York, where she focuses on bankruptcy law and serves as a bankruptcy trustee.