This May, I decided to start taking better care of myself. Caring for a child with a disability comes along with a unique set of stressors. And I realized I’ve developed some not so great habits in dealing with that extra stress.

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I know I’m not alone, which is why I’m sharing my journey with you. Three weeks in, and I am already feeling so much better. But changing the reward/coping system that so many of us rely is hard work.

Taking care of ourselves should be a priority. But those mornings when I’m peeling myself out of bed before the sun rises to make it to a hardcore workout by 5:30 a.m., I can’t help but think a kinder thing to do “for me” would be sleep longer and get a muffin with my latte after I drop the kids at school.

Those times when I’d rather stay in bed or uncork a bottle of wine or eat a pint of ice cream, I remind myself I’m actually not just doing this for me. Our children, partners, extended family, and friends benefit from our self-improvement; and that helps me make the right choices.


Most mornings I sneak out before the kids wake up. But sometimes my early risers see me leaving and are not happy. My heart breaks a little as I walk out the door to the sound of my baby crying and my boys asking where I’m going. But I remind myself that they need me to be healthy.

Having a child with a disability means you will likely care for him or her well into adulthood, possibly for your entire life. That occasional hour they notice I’m gone will be worth it decades from now when I’m still around to provide for them, love them, support them, and celebrate with them.


I have an eloper. My son with Down syndrome likes to run off without warning. And he’s getting faster every day. When I start dragging on my runs and want to stop, I think of the times I have to dash after him, sometimes with my 1-year-old strapped to me. Not only do I keep running, I go a faster.

I have friends whose children can’t walk and need to be lifted. The kids are getting bigger as we’re getting older. A strong back, core, legs, arms – all of it is crucial when you are the primary caregiver. We need to be strong, physically and mentally, to give our children what they need.


The feel good endorphins that exercise provides are real. Aerobic activity is proven to be an effective treatment for many forms of depression and anxiety. Researchers at Princeton, Harvard, and the Mayo Clinic have discovered that movement can be more effective than drugs in many cases.

So when an IEP meeting goes awry or a doctor gives us not so good news – a long walk, a hike in the woods, a bike ride, or an hour at the gym might be just what we need to lift our spirits. It’s a great option when time and money are too tight for a visit to a therapist.

When it comes to what we eat, we all know that sugar and alcohol are only temporary fixes. Both of them are quick pick me ups followed by a sugar crash, a hangover, self-loathing, or all of the above.

Improving what we eat and how much we move will put us in better moods-. And that is beneficial to everyone we come in contact with.


Our children are watching our every move, even at a young age. Do I really want them to think it’s OK to self-medicate with wine and chocolate? Do I want them to see me hating myself? Do I want them to think every trip to the doctor should be marked with a cookie? (Actually, the jury is still out on that one.)

There are additional concerns when raising a child with a disability. My son with Down syndrome has very specific likes when it comes to food, including some obsessions and aversions. I have been very careful to make sure his options are almost all healthy ones. He has some behavioral issues so I make sure I feed him whole foods. We limit sugar and processed foods, and avoid food dyes completely to the point where I cringe when he eats a colorful cupcake at a birthday party.

What kind of hypocrite am I if I feed them this good stuff but eat chips when they’re at school? Besides, if there is something remotely unhealthy in the house, my 3-year-old has an uncanny sense to sniff it out and insist on eating it until I give in.

If I don’t want them to eat it, why should I?

The same goes with exercise. I want them to want to play outside, go on hikes, ride bikes, and run. I want them to see how amazing it is to be outside. I want them to feel the natural high of those feel-good endorphins.


We are working so hard to raise our children and get supports in place so they can live as independently as possible. Our caregiver engines are in overdrive right now. When we enter our golden years, we owe it to our partners and families to be in the best shape possible.

I see my own parents’ health issues, which they mostly brought on themselves, and I do not want to put my husband or my children through that. I want to do everything I can to prevent disease and mobility issues. I don’t want my husband and I to spend our retirement in hospitals and nursing homes. I’ve already spent more than a fair amount of my days in the company of doctors.


FOMO, or “fear of missing out” for the non-millennials reading this, is a big factor in everything I do. I want to be fit so I can keep up with my children. I want to run 5k’s with them when they’re older. I want to coach their baseball teams. I want to jump on the trampoline with them. I want to learn how to surf with them. Who knows? Maybe I’ll do a triathlon with one of them one day.


When life as I know it finally slows down, I don’t want to be slowing down. I will hike my favorite trails. I will stroll through new cities. I will explore places I’ve always wanted to visit. I will roll around on the floor with my children’s children. And I will be there for my children if the world as they know it ever falls to pieces.

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