What’s it like raising kids with invisible disabilities?
I have two kiddos, both boys! Yes, they keep me busy, but I love it. We have bath tubs full of dirt, super heroes running through the living room, Lego’s on the floor, dinonroars instead of words, and I love it. (Honestly, not sure I would know how to parent a girl, haha!)
We also have therapies, tests, specialists, medications, creams, braces, scars and a lot of hard work.
Both my boys have invisible disabilities. You might watch them play and think something is a bit different. But you’ll think they are just normal little kids, everyone does.
But our lives aren’t normal. They are filled with restless nights, pain, worry, judgement, sadness, and lots of hard work; endless hours of therapy, learning to do everyday things and really having to put a lot into it.
In our house small accomplishments are celebrated in big ways. Making a sandwich, undoing a pant button, pulling pants on, two brothers playing in the same room, these are some of the things we anticipate and celebrate like watching your baby roll over for the first time or saying their first word.
Everyone sees them as normal kids, until something happens that’s not normal. Thats when the judgement starts. We get judged more often on a 5 minute interaction than we do anything else. Unless its gossip, then we get judged twice as quick. And please dont think you’re fooling me, I know when it’s happening.
The truth is both my sons have Ehlers-Danlos Syndrome, my oldest also has a rare heart defect and is on the Autism Spectrum, he is labelled as high functioning but can not meet the expectations put on him by that label. My youngest also has processing delays, so life skills, conversations and social situations can be difficult.
I love my boys and I wouldn’t change them for anything in the world. But I won’t lie, and say it’s easy. I remember life before symptoms started to show up and how it was easy.
Going to the park, we picked up and went! Grocery shopping, grabbed my list and out the door. Family and friends, had them! Social gatherings- be right over!
But now all that’s different. Friendships change, even the ones you thought were strong. Family gatherings, not after last time. We have to consider so many things; Noise levels, activity levels, how long can we do this? Who is going to be there? What activities will there be? Do we have medicine? Did they get enough sleep to even attempt it? Did we grab the necessary items?
Being a parent to special needs kids is different. Parenting period has its ups and downs but there’s a difference.
Parents of kids with special needs won’t often say it, but we’re tired, hurting inside, isolated, desperate even. It’s not an easy job, and we won’t give it up, but that doesnt mean we won’t struggle with it. This job comes with no instructions and we are figuring it out as we go along. We need grace and understanding; but real understanding not just understanding when you’re alone with us, a helping hand, inclusion, even a genuine smile means a lot.
So, if we bow out of an activity or seem hesitant, please be aware it’s not just a simple yes or no for us. And there is much more to our children than meets the eye, they are more than their struggles. Please take the time to see that.
❤❤