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Julie McIsaac
on
November 23, 2021

I’m a mama to a child with disabilities. Yes, I look tired. Here’s why I don’t care.

Parents of kids with disabilities are often the squeaky wheel, the recipient of sideways looks in the store. But so many people miss how much richer my life is with this child.

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Last week my son stood up on skates for the first time on his own. I cannot express the intense emotion that swept over me at that moment, but I suspect you know the feeling. Pride, joy, love, glee. It isn’t the skating part that I care about. It is perseverance and determination. Despite wanting to get off the ice, my son is the one who pushed, yet again, to try to balance his body on a sharpened blade on a slippery surface. He can’t always trust his body to do what he wants it to, but he pushes anyway, again and again.

This determination did not always come in a neat little package.

He spent the majority of his time during most lessons scooting on the ice, running away from me, refusing to put on his gear, or my personal favorite, making his body go completely limp in my arms. So, moms in the freezing rink with sweat on your brow from trying to chase and cheerlead, I see you. Dads trying to walk the fine line between empathizing with the challenges your child is having but seeing the value in setting high expectations, I see you too.

Parenting a child with disabilities can take a lot of emotional energy.

My child’s differences are not the same as your child’s differences, and my experience is different from yours. Just as our children are all individual beings, so are we. But we also have shared experiences. We can relate to feeling like the squeaky wheel, the frazzled parent, the recipient of sideways looks in the grocery store. We see these similarities and differences and we can support one another with empathy and respect.

For many of us, this journey began with internet searches in the dark at 2AM.

For some of you, it might feel like those late-night searches were a lifetime ago, and others may be up surfing and researching right now.  If you are reading this with bleary eyes and you are looking for help navigating the system for your child and your family, see if one of our Guides will work for you: “What to do if I think my child might be different” or maybe you’ve heard you might want to learn more about Early Intervention. Getting the right information helps to access services and connect with your community.

The searches never stop, because we never stop.

Whether it’s time for your adolescent to transition to adulthood or you are committed to finding an adaptive sports program, parents are out there researching and gathering information. When it comes to our children, we are determined and we persevere. If we’re lucky, our village grows as we do and we have people to lean on when we need it. New stages bring new questions and new confidence.

This journey changes us all in one way or another.

There’s something special that happens when you turn the world off and focus on a child. I am proud to be the squeaky wheel because I would do anything to advocate for my son. I embrace being the frazzled parent because I know I’m showing up. The looks I get in the store are only looks of those that just don’t know; they can’t understand how much richer my life is because of this child that makes me sweat in cold ice rinks. He has reminded me to listen, slow down, trust my gut, and lead with kindness. He has shown me that at some point, eventually, if you keep at it, you’ll get up; you’ll stand up on slippery ice, balancing only on a sharpened blade.

  • Julie McIsaac, Ph.D.

    Child Development and Disability Advisor

    Julie specializes in working with children and families with diverse developmental profiles She uses reflective practice, emotion-coaching, play and a relationship-based framework to support skill building in the areas of emotional-regulation and problem-solving. Julie consults with families, schools and community organizations. As a parent, she understands the need to have a cohesive team supporting a child and family.

    Profile Photo of Julie McIsaac
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