When it comes to talking about respite for special needs parents, the most common piece of advice seems to be 'It's important to take time out for yourself away from the kids’.
But there’s something about this that I really want to know...
Is there a parent out there who isn’t already doing that if they have the option?
This bit of advice is based on the stereotype that special needs parents are stoic martyrs who need to be encouraged to take a break. We don’t need to be reminded that respite is important, every parent knows that it’s the key to preventing burnout.
The truth is that this kind of relief is out of reach for many special needs families, and if they do manage to get some it’s nowhere near enough.
What do you do when taking time for yourself isn’t an option?
When you don’t have family or friends who can look after your kids?
When you can’t afford a babysitter, even if you could find one to cope with your kids’ needs?
When you’re a single parent who can’t tag team with a partner?
When the waiting list for respite services in your area is months or even years long?
The reality is that the parents who are the most in need of respite are the least likely to get it. This is a dangerous situation which is rarely talked about, most likely because it’s a problem for which there are no easy solutions.
But this is exactly what many special needs parents need to know - how to survive when taking time for yourself is impossible. So let’s look beyond the easy answer and talk about respite options that are available to everybody.
Finding realistic ways to get relief
Knowing that you desperately need a break but are unlikely to get one makes you feel hopeless and powerless, which just sends you hurtling even quicker towards this thing called burnout. So we need to change the way that we think about respite, to talk about more realistic options that help us to stay afloat every day instead of saving our sanity occasionally.
Because burnout isn’t caused by one big entity called Special Needs. It comes from a ton of little (and not-so-little) challenges that en masse create an overwhelming, unrelenting and unbearable amount of stress. So preventing burnout isn’t as simple as waiting for the Magical Respite Fairy to appear on your doorstep once a month and take the kids out while you sink into a bubble bath with a glass of wine and a good book.
The realistic solution to respite is finding ways to give yourself the breaks that you need even when you can’t get time to yourself. It’s about getting relief by doing a lot of little things, every day, to stop the escalating cycle of pressure that this kind of parenting stress can bring.
And it starts with the realization that as a special needs parent you need lots of different types of respite - emotional, mental and physical:
A break from the intense barrage of feelings and the roller coaster of highs and lows
Relief from information overload and a mind that’s working overtime to find solutions
Periods of rest and physical recuperation
All of these count towards reducing the cycle of pressure that leads to burnout. This is good news because you can get consistent doses of this kind of respite every single day, even when the kids are around and without spending a lot of money... it just requires a lot of thinking outside the box.
So take a look at your day and find the places where you can take an emotional, mental or physical break, no matter how small.
Block out sound
You can keep an eye on the kids without listening to them. Give yourself a break from the constant sensory onslaught by blocking out noise with ear plugs or listening to some soft music with headphones - stealing a few moments of peace will give you the chance for some mental rest or to actually finish a thought or two.
Take an emotional holiday
Press pause on the frustration, disappointment and anger by spending time looking through a good day library of things that trigger happy memories. Flood your mind with images of fun days, smiley faces, successes and achievements.
Go for a drive
If your kids don’t mind being in the car, use that to your advantage. Pick up a drive-through coffee and take the scenic route or park somewhere interesting. There have been days where this has literally saved my sanity - the change of scenery, something yummy and knowing that the kids were safely contained in their carseats gave me much-needed mental breathing room from the constant vigilance and cabin fever of being at home.
Read less
Arming yourself with knowledge is important, but there’s only so much advice and information you can cram in before you start hitting information overload. Your mind has to work harder to process and remember new things, so give it a break by pacing yourself and mixing in some easier stuff for it to do.
Phone it in
Allow yourself one day a week where you do the bare minimum needed to keep your family afloat - feed people, clean anything unhygienic and keep everyone out of trouble. That’s it. That’s the sum total of your goals for the day. Schedule the rest of your week around it so you don’t have to interrupt your break with errands, groceries, appointments or anything else that requires you to change out of those pajama pants.
Swap the kids
I’ll be honest, at every play date there’s a moment where I look over at the other parent and wonder why we both have to be there. We’re done with the coffee and the small talk, the kids are off playing... one of us could be home taking a nap. If your kids have friends they like to hang out with, don’t squander the potential. Arrange to look after the friends at your house for an hour/afternoon/day, with their parents returning the favour the next week. It’s win-win.
Say yes to screens
If you have kids who will sit independently to play a computer game or watch TV then use that time to take a break - and don’t feel guilty. Those limits surrounding healthy screen time were made for someone else with a different set of challenges and priorities.
Phone a friend
Don’t wait until you have a spare moment to sit down or when the kids are quiet, because that moment's never coming. Get yourself a hands free headset so you can talk to a buddy while running around or doing housework. Sharing your day with someone else gives you a reprieve from doing it all alone and can help to relieve that pressure valve just a little.
Get off Facebook
Yes it can be an important lifeline of support and friendship, but your feed is also a VIP ticket to ride the emotional roller coaster. Sad thing, funny thing, angry thing, puppies! Hop off that train every now and then to take a break on more steady ground.
Take a break from worry
You don’t have to solve all the problems today... but your mind doesn't know that. Every time you worry it sets your mental gears into overdrive as they try to come up with a solution. So give yourself a break every day where you don't allow yourself to fret about how you're going to afford that equipment or whether you should be doing more hours of therapy or trying a gluten-free diet.
Set up a play pen
The need for constant vigilance is exhausting. If the kids are able to be contained somewhere safe where they can still play and you can see them, then do it. Or conversely, use it to block them from getting into areas that cause a problem - play chess with their brother or drink your hot coffee inside the play pen.
Bribe a teenager
Okay, so the reality is that you’re never going to be able to leave your kids home alone with the teenage babysitter next door. So flip it - take the kids with you and leave her at home to vacuum or do your laundry in exchange for a bag of Doritos and some alone time.
Feed a therapist
Early intervention and physical therapists are often college students or recent graduates who might be glad to swap some extra babysitting for a home-cooked meal. The bonus is that they’re someone you can trust who already understands your kid’s needs.
Share the driving
Set up a carpool with a friend or other local school parents for drop-offs and pickups. Not only will it free up the driving time for other things, it will give you a break from the mental stress of traffic and all those transitions in and out of the car.
Learn to say no
There’s only so much of you to go around and right now your kids need it all. So until you find yourself overflowing with energy, give yourself a reprieve from volunteering for the bake sale or helping your cousin move house. You’ll help out when you can afford the time and right now you’re broke.
Find the funny
Laughter is your body’s natural pressure valve - it lowers anxiety, boosts your immune system and releases pain-killing endorphins. But the best part of laughing is that it’s like a little holiday from your mental day job, getting you out of your headspace even if just for a moment. So spend more time with people that make you laugh, make a slideshow of funny photos, play with your dog, join in with the kids’ games... surround yourself with stuff that makes you smile.
Start a respite gift fund
People want to give you gifts. You know they’re going to do it, they know they’re going to do it, so why not make it easy for them to give you something that you really, really want... a fricken break. Set up an account where friends and family can contribute to a specific gift like ten hours of babysitting, or set one up on a site like Shareagift.
The bottom line
Respite can be a realistic goal for you. You don't have to put your sanity and health on the shelf while you wait for that elusive break away from the kids. Taking small mental, physical and emotional breaks every day can add up over time to give you a more sustained relief from the pressure and challenges that you're facing.
