Thursday, February 27, 2014

Moms of kids with disabilities: Are we the world's toughest moms?

There's a new commercial out from Olympic sponsor P&G in honor of the upcoming Paralympics (the opening ceremony is March 7). Part of their Thank you, Mom campaign, it shows a variety of athletes, and applauds the moms who enable and encourage them.

The end of the commercial states, "The world's toughest moms raise the world's toughest kids."

Raising tough kids: Yes, that's what we do. But I got to thinking about whether moms like me really deserve the honor of being the toughest moms on the planet.

Realities I'm sure many of you can relate to: I have been through a certain trauma with Max's birth, and I've become stronger for it. I have learned to be pit-bullish when necessary about getting Max the therapies he needs—and getting the insurance company to pay for them. I work; juggle medical and therapy appointments; and tend to Max's basic needs including dressing, feeding and bathing while teaching and encouraging him to help himself. I expend serious psychic and emotional energy getting people to understand Max and see him for the awesome kid he is, and lifting myself up when I'm dejected. And I am able to leap over tall buildings in a single bound! OK, not, though plenty of days I do feel like this:

At times, it is really, really hard. Still, I do not think of myself as particularly tough. Because I'm surrounded by a cushion of support—from my husband, sitters, and the therapists and medical specialists on Team Max. Because I have resources, from the amazing school Max attends to the fact that insurance does cover therapies (in theory, at least). Because Dave and I both work and we have means. (For the record, he's one tough dad.)

Sometimes, I think about moms of children with disabilities in developing nations; they face mountains I never will. Unicef's 2013 Children With Disability report noted that in many countries, children with disabilities (there are an estimated 93 million of them worldwide) are largely institutionalized, abandoned or neglected. Perceptions of them are rooted, as the report notes, "in negative or paternalistic assumptions of incapacity, dependency and difference that are perpetuated by ignorance." These kids are often cut off from public services and resources.

Imagine having to be an advocate for your child in one of those countries. Imagine having no Early Intervention or insurance coverage or people in your life who see your child's potential. When you consider that, it seems like those women are the world's toughest moms. (One way to help: the UNICEF fund for kids with disabilities in developing countries created by Lucy Meyer, 14, who has CP; she's raised $120,300 so far.)

This isn't a competition, though. So, OK, I'll take the props: I'm one of the world's toughest moms. But make no mistake, I am also one of the lucky ones.

Images: Screen grab/P&G Thank You, Mom Sochi 2014 video; Lynda Carter, Wikimedia Commons


  1. So true! I could not agree more. I always say I'm tough, but lucky - always - and I honestly believe that.

  2. Wow that is interesting!!!!! You've really got me thinking. I would say (disclaimer, I may change my mind after further thought) that the skills, competencies and personality traits you develop as a parent don't change because your child has special needs. But they are magnified unlimited. And maybe a few extras that wouldn't have occurred otherwise, like a greater understanding of the world, empathy for others, and that inbuilt spidey-sense to identify at 500 paces that kid with special needs of any flavour. Back before kids, I would have pegged the kid having a meltdown in the supermarket as being a brat and the result of poor parenting. Now I'm much more likely to observe closer and see the possibility of autism spectrum, environmental sensitivity, learning disability, FASD or whatever.

    Great post Ellen!

    1. Just to be clear on my comment about supermarket meltdowns, I should say that BEFORE being a parent, I was Ms. Judgy McJudger-pants about parenting. LOL on me. As a parent now I am so much less judgemental and so much more supportive, special needs or otherwise. If I see a supermarket meltdown, even if I don't see some degree of special needs, I typically try and offer a quick a comment about parenting being the toughest job in the world, and ask if I can help. I guess I * grew up * :)

  3. I LOVED that commercial but yes, you totally make some great points. I've always known I'm not doing it alone here. At the end of the day, parents still have to make certain decisions for their kids. One of the sledge hockey players has brittle bone disease. I keep thinking of the courage (or maybe a bunch of xanax) it may have taken that mom to say,of course you can go play hockey and have a blast. We're constantly walking a fine line between safety and freedom/fun/independence. I'm super excited to watch the Paralympics
    Thanks for sharing these thoughts.

  4. I love the commercial. Although, I find it funny that I was able to pinpoint that one clip from "My Flesh and Blood..." I've seen that movie so many times. If you haven't, seriously, you should check it out :)

  5. I am from a country where still lot of fetocide happens just because it is a girl..I immigrated to US 10 years ago and have a girl and constantly think about moms in my country who struggle to raise their girl child to provide even the basic necessities or just making sure they survive...special needs or not, I think moms in developing countries have so many challenges, they have to be the toughest

  6. such a sweet thoughtful post :)

  7. Moms are the toughest people in the world. They put up with...everything.

  8. The best parents of disabled children are tough as nails ... at least I figure they must be.

    What spoke to me in the P&G ad was the idea that the parents have to be tough so that they have the strength to NOT take care of everything and prevent any bad thing from happening, but to let their kids go, take risks, and learn to do for themselves.

    That's another kind of tough entirely.

  9. Hummm Wow I feel like a Mommy who is trying hard to be wonder woman my son right now is in the hospital ... Im tryn to make ends meet I pray for away not to struggle anymore 2014 year of change for me hubby & children .... My mother has decided to offically declared to distance herself from me my son w/special needs... I decided that I am Wonder Warrior Special Needs Mommy ♥ Its going to be ok some how God gives us walk on water wings... Great post we are unique Mommies♥

  10. In college, I interned at a school for children with disabilities in the developing country of Namibia. I did a lot of work in the school itself, but also did some home visits. My brother has profound developmental disabilities and we grew up in a family with lots of different resources, and it was such a dramatic difference from the children I worked with at the school in Namibia. The differences in understanding of disabilities was striking too, as many people from traditional cultures there believe that disabilities are a curse from God. In combination with the issues posed by HIV/AIDS in Namibia, it certainly was an experience I will not soon forget. Thanks for writing this post...I am adding a post about my experience in Namibia to my list of future posts! :)


Thanks for sharing!

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