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How to Set Boundaries as the Parent of a Child With a Disability

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Recently, history was made in the mental health world. An Olympic athlete intentionally chose to self-select out in an effort to protect her well-being. Wow. Just wow. She respected that she was not well enough emotionally to be able to perform at her best and decided to support her team on the sidelines instead.

When was the last time any of us mamas did something like that? I know the stakes are high and we don’t want to let our guard down with our children. But how is this impacting our physical and mental health as a parent?

Parenting a child or children with a disability is an Olympic sport. It’s ongoing, no breaks, no holidays, no weekends, no sick days. You’re always on. You’re always watching. You’re always monitoring. You don’t turn off your mind and always think about the next step, or even worse, what could happen.

The result: burnout. What can that look like?

  • Fatigue
  • Agitation
  • Feeling sad
  • Difficulty formulating thoughts or sentences
  • Struggling to make simple decisions
  • Feeling waves of anxiety without a known trigger
  • Overeating
  • Undereating
  • Waking up in the middle of the night and not being able to return to sleep
  • Not being able to turn off your thoughts at night
  • Staying busy and distracted all-day
  • Feeling overstimulated – it’s too loud, it’s too bright, feeling over-touched
  • Not being able to start and finish a task
  • Daily routines, like showering or brushing your teeth, seem complicated and laborious

I know what you’re thinking. I can’t just turn off and not take care of my child(ren), my family, my job, my house. I’m not asking you to make big shifts. Those are too scary and abrupt. I want you to think about changing the way you interpret so that you build in mental and physical breaks for yourself. I’m not suggesting a weekend yoga retreat or hours at the spa. Although those options sound lovely to me, I know they’re not realistic and they are one-time things.

Shift Your Mindset

If you’re a mama who has a strong sense of responsibility to care for your child and family, that means you likely have unrealistically high standards for what you “should” be doing on a daily basis. You are likely anxious and are trying to prevent something “bad” from happening.  You also likely anticipate and accommodate not only the needs of your child with a disability, but the rest of your family and friends.  You are an over-functioner. You likely give, give, give, and have a hard time receiving. This mindset can lead to severe burnout, which will not serve your child or family, but will leave you in a space of depletion and resentment.

Instead of… Try…
“I have to get this done today” “If I don’t get this done today, I will get it done tomorrow or the next day.”
“I didn’t get enough accomplished today” “I did as many things as I could do today and that is good enough.”
“I didn’t anticipate that well”  “I’m not a fortune teller and I will manage whatever situation arises as it arises.”
“I can do more.” “I need to stop when my body and mind tell me I’m done.”
“Everyone needs me”    “I need to satisfy my own needs first so that I can be there for my child(ren) and family. I need to fill my cup first.”

Find Your Boundaries and Set Them

If you’re a mom who doesn’t like to say “no” for fear of upsetting your child, family, or friends, then you are likely not setting enough boundaries to take care of yourself.

Please make these phrases part of your regular repertoire of daily responses:

“Thank you, but I’m going to pass.”
“I appreciate you thinking of me, but not this time.”
“Thank you, but that’s not going to work for me.”
“That sounds good but I’m going to take a raincheck.”

Take note that there is no reason why you can’t do something and there are no apologies. No need for a big, extended justification of why. It’s OK for you to decline to join the PTA committee or whichever school committee that you know is going to take big chunks of your time and energy. It’s OK to not agree to host a family event at your home if you know you don’t have the time or energy for it. It’s OK. It’s just OK.

Setting boundaries can and will feel uncomfortable and spur a ton of guilt. Know and expect those feelings to arise in you. Acknowledge them. Respect them. Honor them. And then let them pass. Resist the urge to return to the person you just said “no” to and change your response. And know that as you set boundaries more frequently, you will become more comfortable because of the peace that you will feel. If you’re the person who always says “yes,” the people around you will ask things of you because this is the precedent you set up. When you change it, the people around you will adjust as well.

Being a mama of a child or children with disabilities can be overwhelming and exhausting. Take care of yourself and know that you can still accomplish the same great care for your child and family without burning yourself out.

Getty image by Maskot.

Originally published: February 16, 2022
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