On June 1, 2019, my son with Down syndrome graduated from high school. He danced and jumped across the stage with flourish, unabashedly hugged his principal, and motioned for an ROTC escort down the stairs. Andy has never been one to hold back his feelings, and he exuded excitement, joy, and pride that day.
Andy described “I feel happy, this feeling happy myself and then just calm. And dance—just standing on the stage, and then I can say I do miss Mr. Smith [the principal].”Andy Meredith
We celebrated his accomplishment with a party at a Mexican restaurant, bringing together friends from church, school, and lacrosse; beloved teachers and para-professionals; and our family. It felt a little like how I imagine heaven—being surrounded by so many people you love and sharing memories from over the years. We were all so genuinely happy for Andy, but I was also celebrating the end of years of annual IEP meetings!
In April, we had made a decision that felt brave, reckless, and exhilarating at the same time. You see, most students with disabilities are allowed to stay in school until their 22nd birthday, and they usually work on developing job skills during that time. There is absolutely nothing wrong with making the decision to continue, and many students need it, but Andy did not want to at all. He had a great high school experience and loved all his teachers, but he felt done. I tend to be a rule-follower, so I was scared to break from the usual mold, but we were excited because we had a plan and Andy already had a job.
One thing I had heard consistently over the years was that when our kids with disabilities turn 22—and have to leave the public system—it felt like falling off a cliff. But by good fortune, some hard work, and an incredible network of support, we didn’t feel that way and were eager to move on.
Our plan over the next few years is for Andy to work at Publix (a job that he loves and which allows him to be his very social self); develop his career as a photographer with his dad (a job which allows him to develop his talents, travel, and work at an office-sharing space on the technical college campus); go on a church mission; and coach lacrosse. After a couple of years saving money in his ABLE account, building work skills, and developing some more independent-living skills (mostly managing money and time), Andy also plans to apply for a college program near our house.
“I was happy to teach lacrosse and work with my friends and boss at Publix too.Andy Meredith
So on August 1, when my younger two daughters headed off to school, Andy gloated a bit and then put on his apron, grabbed his lunch, and headed off to work at the grocery store, and we could not have been happier.
The point of the story is this: sometimes it feels like we have to follow some script as the parents of kids with disabilities, but it really is okay to customize what we do based on our particular situation, support network, and skills. It’s okay to choose to continue in the public school system until 22. It’s okay to get a job right away (in fact, getting a job in high school actually shows great impacts on long-term employment). And it’s okay to choose to go to a post-secondary program or to do a combination of several opportunities. It doesn’t have to be a cliff anymore; it can be an exciting constellation of options. But the key with all of it is to start planning well in advance and go for it. The serious planning needs to start no later than 14, but the preparing should be happening all along.
Below are some great ways to start planning and preparing:
- Start preparing and building talents, skills, and independence throughout the school years. See our Family Engagement Module and Charting the Lifecourse at the UMKC Institute for Human Development.
- By age 14, talk to your school district about what options are available between high school graduation and age 22. You can also get information about that transition from our Transition Overview Document and access Pre-Employment Training Services (Pre-ETS).
- Talk to other parents, adults with disabilities, and self-advocates as mentors to see what they’ve done. In Kentucky, KY Spin and local advocacy groups like Down Syndrome Louisville, Down Syndrome Association of Central Kentucky, Autism Society of the Bluegrass, and Autistics United Kentucky are great ideas.
- Learn about any post-secondary programs you might be interested in at ThinkCollege.
- Start applying for jobs as soon as you’re ready, even in high school, by looking at your skills and talents, talking to your network of friends and family about what jobs or internships might be available, and contacting the Kentucky Office of Vocational Rehab if you need extra support.
Just don’t be scared to choose your own path and get help where you need it. For those of you who have gone through transition, please let us know what options you chose!