Getting Enough Sleep

Living independently with a disability comes with many challenges. When Dave first moved in to a place of his own, we had to wrestle with the question “how will he get enough sleep?” Dave has sleep apnea, which disrupts his sleep unless he uses a continuous positive airway pressure machine (CPAP). So, our first major effort was to make sure he wore his CPAP for at least 7 hours a night. It took us about 6 years to to reach this goal, and the final resolution was a complete surprise.

Increasing Sleep with Rewards

The first thing we tried was a complex system of rewards. I devised a system where Dave received poker chips for the hours he slept, which he could redeem for Xbox gift cards (so he could buy the next wrestling game!) at the end of the week. Technology features heavily in Dave’s ability to live independently, and this system depended on the technology built into the CPAP. It records the hours slept, so it was easy to determine how many poker chips Dave earned. One of the tasks of the habililitation aides was to check and record the hours Dave slept each night. Unfortunately, as with many attempts to change Dave’s behavior, this strategy worked okay in the beginning, but wasn’t effective over time.

Increasing Sleep with Punishment

After trying the positive reinforcement route for several months without consistent success, I tried a different strategy. I told Dave that he would have to come home overnight if he didn’t use the CPAP every night. After I made good on that threat, he slept longer more consistently. Threatening to bring him home turned out to be one of the most effective ways to change his behavior. I never know whether I should be happy, or hurt, by that! However, even the threat of bringing him home overnight didn’t prevent him from eventually sliding back into old ways over time. He hovered around 4 – 6 hours of sleep per night for several years.

Individual Responsibility Changed Everything

Things changed literally overnight (pun intended), when, one day, Dave complained to me about the way the hab aides were recording his sleeping hours, though I can’t recall at this point what the trouble was. In a flash of quick thinking (not usually my forte), I suggested that he record the hours himself. He liked that idea very much. And ever since that day he uses his CPAP consistently and sleeps 7 – 8 hours or more every. single. night. I would never have believed that things could change that quickly if I hadn’t seen it myself.

It has now been at least 7 years or so since the day Dave started getting enough sleep. Unfortunately, he has shifted a bit too far in the other direction. He now refuses to go out on the nights before a work day, to go bowling or attend a party, because he wants to make sure he gets to bed on time!

He no longer needs to record his sleeping hours because sleeping enough has become a habit. But he enjoys recording the hours, so he doesn’t want to stop. And woe to the hab aide who reminds Dave to write down his hours. “That’s my job!” he says. Several months ago I actually had to add a note on the task sheet that says “Do not ask Dave to check his sleeping hours!”

This experience taught me a vital lesson. Giving individuals with disabilities as much responsibility for themselves as possible can improve their ability to successfully live independently. But there is a balance. After this incident we handed responsibility for many of Dave’s tasks over to him. We discovered that he still needed more support for certain things, like remembering to use his dandruff shampoo three times per week. Supporting Dave in a place of his own is an ever-evolving balancing act.