I parent from the space of in-between. In-between “special needs”, or as I like to say disability parenting and “typical child” parenting. Therefore, Reagan lives in the space in-between, never really fully fitting in one world or the other.
In many ways Reagan is a “typical” nine year old, attending public school, going to Girl Scouts, cheerleading and CCD. At home she enjoys reading, games, her IPad, cooking and hanging with family. We even reached the stage of slamming doors and spending way too much time making sure her hair looks just so. You know the “typical”stuff.
On the other hand Reagan lives with both Epilepsy and Cerebral Palsy, the not so “typical” stuff. And when I tell people this, I get one of two reactions. One of surprise, “Oh really, she doesn’t look like she has cerebral palsy, she walks and talks” (which by the way isn’t a compliment) or one of pity “Oh, I’m so sorry” (also not helpful). Only once did I get (from another “special needs” parent”) “Look at how wonderful she is doing, you should be proud”. There is no in-between, but that’s were we live. Since Reagan’s diagnoises are mild, she is not disabled enough nor is she typical enough. She doesn’t fit.
I see it in the lack of invites to birthday parties, play dates and even the neighborhood after school hang out. I see it when she was denied therapy services during the pandemic as her need wasn’t deemed critical (find yourself a therapist that fights to have that changed). I see it in conversations with other parents, I politely listen and take interest in hearing about their child’s after school activities but when the conversation turns to therapies Reagan attends, there is silence on the other end, not due to lack of care and concern, simply because they do not know what to say. I see it when I submit her for disability coloring books and she isn’t selected. I see it all the time, in all things, in all the places. The hard part is this…Reagan sees and feels it. The older she gets the the larger this space of in-between grows. I hate this gray, weird space and it shouldn’t exist.
Why is there this space of in-between? Why are there boxes to check and what happens when there isn’t one for you? Why is this world not accepting of people as they are?
In general people are uninformed or misinformed about what life with disability looks like. Disability is a natural and normal part of the human experience, it’s only when we view it as such that the space of in-between goes away. Why do I share Reagan’s life and story? To normalize disability, plain and simple. Yes, I do also share because we desperately need a cure for Epilepsy. But guess what, so do MILLIONS of other PEOPLE. Epilepsy is the 4th most common neurological condition and epilepsy affects more than 65 million people worldwide. Cerebral Palsy is the most common motor disability in childhood. Disability is common, with an estimated 1 in 4 adults living with some form of a motor, cognitive, hearing, vision, independent living or self care disability. Common, normal, typical….you get it.
So here’s how that space goes away:
- Talk openly with your children about disability
- Read to your children about disability, race and perceived differences
- Encourage your school district to have a more inclusive approach
- Ask those living with disability about their life
- Use person first language
- Ask parents of children with disabilities, how they can better include the child living with the disability
- Open your heart and your mind
Rea of Hope 