My son David, now 28, has lived independently in his own place since he exited school at 22. At age 16, the idea seemed ridiculous. Back then, he still had meltdowns in public. He is large (6 feet 2 inches, 240 pounds) with a deep rumbly voice that can make a meltdown feel very public. Moods and meds dominated his early teenage years. Academic knowledge and life skills took a back seat. He didn’t know how to cook, do laundry, use a cell phone, carry a wallet, or follow directions with more than two steps.
Not in My Basement
However unrealistic it seemed, my husband Ted and I felt strongly that independent living was the right choice. I had a nightmare image of David sitting grumpily in my basement at age 30, eating junk food and playing on the computer all day. (That scary image comes true for too many young people with autism.)
Our fuzzy intention that David should live independently after high school was the first snippet of his “Big Picture.” As we teach to parents , the Big Picture is a vision of ordinary life. It is a snapshot of an average day in a good week. What does that person see out his front door in the morning? What does she do all day? Who makes sure he’s safe and well? Not all parts of this picture come into focus at the same time. You start with a few pieces and let it evolve.
Wi-Fi, Snacks, and Walkability
Over the next five years, we filled in the Big Picture bit by bit. Big Picture thinking is a whole-family exercise that must involve the young adult and everyone else in that picture. Dino Dave’s Big Picture featured a large apartment with excellent WIFI, access to snacks 24/7, a 60-inch TV, and storage space for his gazillion dinosaur figures. Plus, he didn’t want to feel lonely.
Ted and I wanted him to live in a safe, walkable neighborhood on the bus line. He would have the ability to shop and cook for himself, get to a therapist every week, and navigate around town without help. I wanted a support network of people who could drop by for company, teach skills, and keep an eye out for problems. Ted wanted a low maintenance condo with a fix-it person on call.
Wallet, Debit Card, Deodorant
The Big Picture became more detailed as David’s teachers and I made lists of everything he might need to live independently in his own place. It was overwhelming to realize how many life skills the average person needs to get through a single day! Still, this master list of skills helped our IEP team focus on setting short-term goals to keep the process moving. We noticed small details, such as David’s difficulty writing an email, or leaving a message on voice mail. Those skills plus dozens of others—such as using a debit card and wearing deodorant EVERY day—became objectives on his IEP over the next few years. His picture ID and cell phone were lost and found multiple times before he learned to keep up with his stuff. (For the record, he is now much better at this skill than his mother.)
Next time: The Practice Apartment
In Part 3, learn how we created a “practice apartment” and a skill-building plan that transitioned Dino Dave to his new home. Spoiler alert: He didn’t get the 60-inch TV.