It was the day after New Year’s and our support groups were winding down when the idea struck me. These parents were in the midst of a long two-week holiday break from school with their kids and they looked a little worse for the wear.
As they described the reality of what the holidays meant for them (sleep deprivation, high expectations, big disappointments, little or no routine, meltdowns, family members who don’t get it, nerve-wracking security checks at airports), I couldn’t help but wish that there were a way to give them a regular break from this for just a short while. With that, I thought, we could lighten their load and give them the recharge they need to get back up and do it again day after day.
What is respite?
Many parents have heard or used the term ‘respite’ but what exactly does this mean and what are the options for respite in Washington?
According to Miriam-Webster online, respite is defined as this:
“A short period of time when you are able to stop doing something that is difficult or unpleasant or when something difficult or unpleasant stops or is delayed.”
What it translates to for parents of kids with autism is a chance to . . . try to break out of hyper-vigilant mode and breathe normally . . . to sleep through the night . . . to drink hot coffee and eat a hot meal . . . to escape in mindless TV or a good book about anything but autism . . . to make uninterrupted phone calls or place an online order without having to stop and start three times . . . to enjoy the privacy of using the bathroom alone, even take a hot shower or Calgon-take-me-away bath. It’s a break from cleaning up spills or bodily fluids . . . providing the same answer to the same question 50 times in a day . . . listening to Barney or Wiggle songs . . . filling out data tracking sheets . . . scheduling and then chauffeuring to numerous therapy appointments . . . wrestling with kids to take medication or brush teeth or bathe . . . responding to a multitude of emails about behavior. And that’s just off the top of my head. There’s so much more.
Some parents are fortunate to have paid respite, but many do not. Even if they do, parents don’t have anywhere to go. Being at home even if you have a respite provider there isn’t a real break. There are some out-of-home respite options for children with autism but this option is limited and isn’t a good fit for all. Even with their child in out-of-home respite, parents are still home with laundry and a messy house yelling, “clean me”.
Developmental Disabilities Administration (DDA) Respite
For children who have waiver services or Individual & Family Services Program funds, respite may be in-home or out-of-home with contracted respite providers including individual care providers, respite homes and camps. For more information about DDA services: http://www.dshs.wa.gov/ddd/services.shtml
A more recent development is a statewide effort at developing respite services for families. From the website: “Lifespan Respite Washington began in 2002 as a statewide coalition known as the Respite & Crisis Care Coalition of Washington. The coalition is comprised of family caregivers and staff from organizations across the state, representing all populations regardless of age (“lifespan”), income, cultural or ethnic background, or need/disability of the care recipient.” For more information: www.lifespanrespitewa.org
Not–Ready-for-Prime-Time Respite Ideas
As our support groups came to a close, a crazy idea popped into my head: some kind of time-share respite just for weary parents of kids with special needs. Bear with me as I throw this question out into cyberspace and see if anyone answers.
What if some good soul who has a local property, a house or condo, were to offer two day stays to parents of kids with autism for a reasonable fee? Said property would be within driving distance and fully-equipped so parents could keep costs down by eating meals in.
VRBO (Vacation Rental By Owner)
What if there was a VRBO-type arrangement where parents could look online at various places and book stays? How is this different from VRBO as it exists now? The difference is that it would cater to weary parents and the cost would be such that it isn’t a barrier to access.
Graduate school student respite
What if there was a university class that matched a student with a family for a quarter? The student gets to learn about autism hands-on and parents get a little respite, a chance to get out of the house.
I know – I’m dreaming. But most important things begin with a dream, don’t they? What does your respite dream/dream respite look like? Share your creative ideas with us!