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4 Lessons I've Learned as a Disabled Parent of Kids With Disabilities

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I’ve spent my entire life in the disabled world, so I’ve seen lots of personal stories about living with a disability and what that’s like, and I’ve seen lots of stories about people’s experiences of parenting kids with disabilities across a wide spectrum. But what I haven’t seen very often is stories of parents with disabilities themselves parenting kids with disabilities.

I don’t think that’s because I’m the only one doing it. After all, so many of the disabilities out there are genetic in ways that mean both parents and kids can be affected. Furthermore, I know a number of people currently in the same boat. But I think it doesn’t get talked about very much in any sort of public way because at the end of the day, we are often tired and overwhelmed, leaving us with little energy to talk about this fairly unique reality.

But since for a few minutes today my kids are both happily taken care of and I have enough energy to string a sentence or two together, I thought I would take a moment and raise my hat to all the parents with disabilities who are parenting kids with disabilities, and…

  • To acknowledge how hard it is to watch your child go through the same painful tests you have had to endure.
  • To see how challenging it can be to have to rely on other people to care for you and your child when one or more of you is having a really bad day.
  • To recognize that feeling of wanting desperately to meet your child’s needs even when they are beyond the scope of your own abilities.
  • To admit to having pushed yourself far beyond your own limits in service of your child’s needs, only to pay the (painful) price later that day or the next.

I want to see you and the challenging road you are walking or rolling. I want to tell you that you are not alone in the midst of this. And I want to offer just a few small lifelines I have found that have helped me to survive:

1. Say goodbye to guilt.

Whether your child inherited their disability from you, received their disability at the same time as you (due to an accident) or simply ended up with a disability that is totally unrelated, guilt does nothing to help your child, and puts enormous additional strain and stress on your relationship. While it is OK to grieve, your child also has an incredibly unique opportunity. Being raised by a parent with a disability means disability is automatically normalized for them in your family, and you have the opportunity to give them healthy role models. If you’re having trouble with this one, it really is worth talking to a therapist about it — the difference for both me and my kids was huge!

2. Remember there is a difference between making sure that your child(ren) get what they need and doing it yourself.

The first might be your job, but the second can be farmed out to anyone you trust.

3. Rely on community whenever possible.

Start with the things that are the least personal and work your way in however far you need to go. I have friends who help with meals and cleaning and errands and laundry, leaving me with more energy to sit with my kids, play games with them and advocate for their best interests with doctors and schools.

4. Learn to count your self-care as a daily necessary parenting goal.

This is the hardest one still for me after 18 years! It’s so easy to prioritize the needs of our kids to the point where we get overwhelmed or fatigued, and then lose patience or fumble things or make mistakes. But the more I have recognized and leaned into the fact that self-care allows me to parent better, the better a parent I have become.

I know I’m not the only parent with a disability parenting kids with disabilities — I’d love to hear what you’re doing to make your family life work!

Getty image by Katja Forster.

Originally published: March 11, 2019
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