(photos above represent glimpses of our first respite weekend. Top center: a serene path at Colgate University; lower left: the welcome packet that awaited us in our room; lower middle: a gorgeous gift basket filled with yummy treats, a bottle of wine, and two wine glasses; lower right: a selfie of us and a gorgeous chandelier- not our best photo, but just LOOK at how happy we are!)
It was July of 2016, and my husband and I were about to have something we’d never had: a weekend away, just the two of us. Think about those words a moment, if you would. We haven’t been married all that long, five years, but we have not had that time away since before we were married. Speedy was with us on our honeymoon, after all, so this was an epic event in our lives.
I mention respite and its importance in a lot of my posts. Think that’s an accident? Heh. Um, no.
Parents of kids with different abilities work incredibly hard. Please know that I acknowledge the hard work of all parents. I was a parent of at least one typical child, so I do know that parenting in itself is challenging. But if we’re being honest, it was kind of a walk in the park compared to how we parent now.
Tell me if this feels familiar:
*You wake up before the sun (and before the sons), hoping to get some coffee in your system before they’re up. If you’re extremely lucky, you might be able to hop in the shower and get dressed, but that’s usually rushed. Bleary-eyed and exhausted, you help two children find clothes and get into said clothes. I cannot stress enough how much this resembles herding cats who are all following a different laser pointer.
*Once the kids are dressed, and after you have broken up at least three arguments, it’s time to make breakfast. This has essentially come to frozen waffles and drinkable yogurt because this is all they’ll eat and at least they’re getting protein and grains, right?
*This all happens with the aid of a picture schedule and a LOT of reminders and redirects just to accomplish one thing. All the while, two boys are sitting behind you and humming Christmas carols in February because why not? (This is actually happening at this exact moment)
*You have to prompt for toothbrushing and actually supervise said brushing of teeth in order for it to happen. *You have to prompt for toileting and yes, you have to supervise that as well.
*You have to prompt to put on a left shoe.
*You have to prompt to put on a right shoe. Oops, now one is crying because he insists on wearing his snow pants even when it’s 50 degrees out, and you’ve forgotten.
Eventually, they’re on the bus and now you can rush around to finish getting yourself out the door to go to work.
Y’all, I’m tired. And that was just one part of one morning I’ve described. You know what this all feels like, because you’ve been here before.
Early last year, we connected with an organization in our area which provides respite weekends for couples. It’s a time to reconnect, to get to know one another again, to remember why you are the dynamic duo that you so clearly are. Locally in the Central New York region, please do reach out to www.davidsrefuge.org . They’ll have you fill out an application and they will ask for documentation of disability (of the person for whom you provide care). They work with several area bed and breakfasts and small hotels to provide the perfect weekend getaway. I mean, they thought of everything.
For two whole nights, we slept in a luxurious king-sized bed with NO CHILDREN IN SIGHT. And believe me, I double checked the bathroom to make sure there wasn’t a child hiding behind a door or something.
For two days, we relaxed, enjoying our first couples massage and slow walks around the campus of nearby Colgate University.
For one glorious weekend, we were just… us. We weren’t someone’s parent, we didn’t have to prevent a meltdown, we didn’t have to do one single thing that wasn’t about us.
Let me just tell you, respite in the form of an entire weekend doesn’t happen often. We are booked for our next weekend in July of this year, but mostly we take respite in smaller doses. So I get it when you read this and think there’s no way to make it happen.
Respite can come in the form of an hour or two. Go down to Wegman’s, buy a latte, and just walk around looking at all of the things that you never have a chance to see. Go to the park and just sit still. Close your eyes and hear the sounds around you. Notice how your children’s voices are not heard? Yeah. That.
The thing that you really need to know about respite is that you need it. There is an analogy that resonated with me really well, so I shall share with you. When you’re on a plane and the flight attendant is reading off the safety instructions during pre-flight, they always mention that should the oxygen masks drop down, parents (and caregivers) should put the mask on their own face before assisting their child. Do you know why this is? It is because we are far more able to provide care when we care for ourselves first.
Statistically speaking, caregivers of those who are autistic are prone to depression and anxiety. There are studies from around the globe, all showing the same thing: that if you are a caregiver, you are much more likely to be experiencing depression. The rates for divorce among “spectrum families” are higher than neurotypical families, too (23.5% versus 13.8%, according to this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928572/ ). The point is, you need time to breathe life back into yourself, yourselves, and you need to do it soon.
I ask you, for your own benefit, to identify ways for you to regularly receive respite. This could be a weekly thing, or even once a month, but it needs to happen. Connect with a family member, a friend, colleague, college student, anyone who you can work with to provide care so that you can have a break from caregiving.
Hartley SL, Barker ET, Seltzer MM, et al. The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder. Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43). 2010;24(4):449-457. doi:10.1037/a0019847.