7 Tips for Managing Ongoing Demands as Parents of Kids With Disabilities

I recently had to embark on a long, time-consuming and emotionally draining fight for my son to start ABA in-center therapy, something I’d taken for granted given his spot on the waitlist had come up. But some issue between the insurance and provider delayed the place that had been reserved for him for so long.

I feel as if there is a non-stop, always going, never ending intensity of being a parent to a child with a disability. It’s not a complaint, it’s an acknowledgement. It’s the fact that being “gritty” is no longer an option, it’s a requirement. When I was a college student and felt exhausted, there was always a finish line: midterms, finals, etc. Now, not so much. Sometimes I’m driving my kids to school and thinking about that call I have to make to the Billing Specialist, then the Costumer Advocate, then the Clinical liaison, etc. And it’s gone round and round in circles.

When I’m not playing with the kids, serving as a referee between them, cooking, cleaning, at work, doing what parents do, I’m filling out forms or on the phone with someone with some relation to autism services. It’s endless and draining.

I don’t have the answer yet, but I have gathered a few insights that make it bearable, beautiful and funny even. So, here are my tips for not losing it altogether as a parent of kids with disabilities:

1. Invent finish lines.

I know it’s one thing after the next, but revel in the little victories: finishing that million-page form, finally getting approval for a new therapy, finding solutions to little challenges your kid had (like a fear of the bath). Reach these tiny finish lines and find some way of resting, celebrating and forgetting everything else for just a few hours.

2. Know yourself and your needs.

I was a stay-at-home mom and am now a working mom. Both are really hard and have their own particular set of challenges. Because of the way my brain works and its tendency to obsess about things, I need to get out of the house. I do a lot better with a job and my kids do a lot better being in school. We have a channel for our energy and a distraction from our worries. I get to write and learn about a field I love and they get to play outside and learn things appropriate for their age. We get to engage with other people and to learn from them. We come home tired, but calmer and ready to enjoy each other’s company. Some people may do better staying at home, they may thrive in an environment over which they have more control. They may not like the busyness of driving and drop-offs and school forms. It depends on your personality and your family’s needs, but you need to know yourself well enough to find the circumstance that will put you in the best head space to be a freakin’ superhero.

3. Find things for which to be thankful.

I know this is a bit annoying because you’re every bit entitled to feeling frustrated without having some asshole point out “but look, you have blah, blah, blah.” But seriously, just over a year ago I lived in Australia and getting the services we’re getting now for our son would have left us bankrupt. Getting the in-center therapy we’re fighting for at the moment was as likely as getting super powers after being bitten by one of the many deadly things living in our backyard. We could’ve never afforded to buy a house (with a median price of about $829,000 USD, who can?) and the rentals generally didn’t even have air conditioning or dryers, even for the modest price of more than half an average household income after taxes. There is a long way to go for the healthcare system in the US to be what it ought to be, but when it comes to kids with disabilities, I feel we’re doing better than most people expect. The government in AU gave kids with autism something like 7 thousand over six years and private insurance covered next to nothing. Those of us in the disability world know that 7 thousand doesn’t begin to cover a few months of ABA therapy. So, as frustrated as I am sometimes, I know our standard of living, our son’s progress and general mental health are all a billion times better than before. So, be frustrated, but also consider the wins you’ve had and how much of a triumph these wins would mean for parents of kids with disabilities in other places. Then keep fighting because our little ones still deserve better.

4. Ask for help and accept it.

There are several organizations available to help parents of kids  with disabilities. There are advocates, caseworkers, legal teams, fellow parents, educators and many other super smart, dedicated folks. These people know what they’re doing and take it quite seriously, so find them and make them a part of your team. Find friends and family who are on board with your kids’ needs and accept their offers to babysit or cook a meal or run errands — whatever will take a bit off your plate.

5. Sleep!

Sleep as much as you can (which I know might not be much). I know there is always something to do, but if you can get some moderate rest, tackling the mountain of work might be a lot easier. You’ll also be in a better mood and more efficient with the little time you have.

6. Have an emotional outlet.

Talk to other parents in a similar situation, to a trusted friend, a pastor or a therapist. Don’t bottle it up; have a good cry about it now and again, turn up the stereo in your car when you’re driving alone and sing along to an angry song full of naughty words (trust me, it works for me). Have some way of dealing with the frustration you’re very entitled to have, but please, deal with it before the next telemarketer calls.

 7. Know your worth.

My friends, having to be always on call, always fighting and always feeling like it’s never enough, will have a toll on us. But you know what? It makes really amazing, empathic, strong, gritty, bad-ass people. We learn to never quit, we learn to push ourselves and we learn to fight for others. A special needs parent, as tired as s/he is, will fight for others because s/he knows the struggle.We also learn to be vulnerable, and humble, and raw. We learn to ask for help and let our guard down. We learn to let other people have a chance to be strong and virtuous. Being who we are and doing what we do, given that we find ways to take care of ourselves, will make us more truly human and it will teach our kids exactly what we need them to learn: that when it feels like all the air is leaving the room and everything is falling apart, we have the strength to move forward and, even when we don’t, we have the people to help us carry on. In this marathon we can teach our little ones, who already have so much to carry, how to never give up.

A version of this post appeared on Letters From My Bouncy Castle.

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