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The 26 'Merit Badges' I've Earned as a Parent to a Child With a Disability

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On our first drive to Salt Lake City last year for Keira’s baclofen pump surgery, Jeff had me in stitches. I was telling him it felt like we’d reached some rite of passage, like we had “leveled up” somehow as parents to a child with a disability.

I mean in one trip we were going out-of-state for a surgery and staying at a Ronald McDonald House for the first time. I thought to myself, “This has to be worth something.” Similar to scouts who earn badges for camping, cooking and emergency preparedness, Jeff suggested we should be “earning badges” left and right. So we started creating badges all our own. And in our spare time (ha!), we will totally create these unique badges, and very special sashes, for ourselves and other parents like us.

I remember when the boys were young, I used to get stressed out by hanging out with other moms of similar-aged children. The reporting, bragging and questioning that went on between us moms felt competitive and it exhausted me. When Jeff heard about it, and sometimes experienced it himself, he likened these discussions to a fishing derby and more recently started referring to them as a “developmental derby.”

“When did your son walk? 14 months? My daughter was walking by 9 months…You put cereal in your daughter’s bottle? Oh. We are doing absolutely no solids until 12 months. It’s better for their development.”

You know those types of conversations, right? Mostly they aren’t ill-intended. I think they are mostly just a form of sharing and commiserating from parent to parent. However, if you are like me, a lot of those conversations leave you with feelings of having succeeded or failed as a parent in various areas of your kid’s life.

It’s kind of funny, but I’ve witnessed some similar conversations between parents of children with disabilities too.

“We don’t do that medical food because it’s full of sugar…We put our son in this therapy program when he was 9-months-old…We only go out of state for that medical specialty…We drive 200 miles a week to therapies.”

Again, it’s not all bad. We want the best for our kids. And for better or worse, we want acknowledgement for the hard work we have put into caring for them, especially when we have very few role models and often conflicting information on what to do for them.

Here are some of the parenting badges I had in mind:

  1. Out-of-state medical care badge.
  2. Ronald McDonald House badge.
  3. First IEP badge.
  4. 5+ medical specialists badge.
  5. 10+ surgeries badge.
  6. Participating in children with a disability legislation badge.
  7. Made-A-Wish (Make-A-Wish Foundation) badge.
  8. Adaptive equipment designer badge.
  9. Firing a therapist badge.
  10. Honorary RN badge.
  11. Honorary MD badge.
  12. Honorary service coordinator badge.
  13. Honorary secretary badge.
  14. Honorary therapist badge.
  15. Unrecognized medical discovery badge.
  16. Wheelchair worth more than your car badge.
  17. Snake oil badge.
  18. Handicapped placard badge.
  19. Near death experience badge.
  20. Successful insurance appeal badge.
  21. Lawsuit filed badge.
  22. Blogger badge.
  23. Advocacy/prevention/awareness badge.
  24. Home medical equipment badge.
  25. Home modifications badge.
  26. Clinical trial participation badge.

How many badges have you have earned while parenting a child with a disability? Tell us in the comments.

A version of this story originally appeared on

Photo credit: grinvalds/Getty Images

Originally published: March 1, 2019
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