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
Lifespan Respite
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.
Time-share Respite
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!
Keep dreaming..it’s the only way we can create anything new! I think that this is a brilliant idea, it would also be great to create something similar for the siblings who are just as tired, burnt, and challenged in ways we don’t understand. At least I don’t, my siblings were all neuro typical.
I work to educate parents on the effects our environments can have on all aspects of our lives, changing scenery occasionally can profoundly help parents to come back and look at things through a new lens. I would support that this endeavor in any way I could! I am in NJ, but what the heck heck..let’s take it national!
Having spent 1 night alone without our darling child in FIVE years, we would kill to have someone trusted to leave him with overnight, who understood him and his challenges. It would mean so much to us, we’d even pay for the hotel. 😉
I believe there is a small program at UW that pairs students with families of kids with ASD, but not to provide respite. Sounds like a great idea!
Thanks Noel and Suzanne, for your thoughts and thumbs up on dreaming about what could be for our families who so desperately need a real break. Siblings too! Keep dreaming and maybe, just maybe, something will come from it.
I have a brother that is profoundly affected by autism. Growing up, we only took one vacation without him. When I brought up this article to my mother, she talked about that one vacation. It came with a lot of guilt during and behavioral repercussions after, but I know she is happy that we had that one trip without him.
I also raised a son on the autism spectrum. He is much more functional and respite wasn’t necessary. Still vacations weren’t easy.
We are now raising three grandchildren, one who is moderately impacted by autism and another with developmental disabilities. The youngest is showing delays but still too young to know. We are unable to go to on vacations with them. It is too much for them and for us. We are fortunate to be at a stage of our lives where we could recently buy a vacation home so we can have a change of pace if not a respite. It is still difficult. It would be wonderful to be able to go without the kids, but they do like going and I know it will get better. We have had the idea of making our place available to others so I think that your idea is not an impossible dream.
Thank you, Jody, for sharing your story with us. You captured so well the mixed feelings we have about taking a break from our loved ones with special needs. You really have your hands full so if you get a chance for a getaway – take it! We will keep alive the dream of respite for families.
2 weeks is easy, here in Australia we have 6 wks summer holidays and by week 3 I’m crying all day like an idiot going mad. But hey it’s been 18 mths since my mum babysat him and thats unlikely to ever happen again, and lucky me I got invited to a birthday party on Sat, got excited until I’m told NO KIDS. Host says it’s ok, u can bring him, if u have to, but I know if I go it will make everyone uncomfortable coz he will stand in the middle of the room begging to leave. URGH sob sob, not even support groups here, your idea is a wonderful fantasy, 3 wks to go before school goes back
Ps we have this program in Australia, I have been on the waiting list for 6 yrs to access it, was told that I am unlikely to get to the top of the list and receive respite before he is 18 and ages out, 7 years away
I live in NC. I can not explain to you how tired I am. I am literally drowning in autism and feel like I have no where to turn. I think that I’ve developed PTSD because I am always on alert, I pull away when people try to touch me and I am so anxious that it feels like I have ants crawling on me. My husband will not give me a break, if even for an hours. Autism is not pretty. Trust me.
What you’re describing is familiar to parents of children with autism – the constant hyper-vigilance, emotional flooding, and withdrawal from what is challenging/traumatizing. I’ve heard it likened to PTSD but it isn’t post – it’s recurring. While we aren’t able to give clinical advice, I strongly encourage you to ask for help from as many people as you can. Tell someone – your physician, your child’s providers, all your family members, your state agency for serving developmental disabilities – that you are overwhelmed and need help now.Many parents report not wanting to do this for fear they will be judged. I wish for you the strength and courage to recognize this as an anxious thought and loudly and clearly ask for help.