Welcome to Day 3 of the 31 Days of Random Reflections on Raising and Homeschooling a Child with Special Needs. You can find the main page for this series here.
Parents of kids with special needs are caught between wanting you to see their child and not seeing him in that way.
We want you to ask questions, but not those questions.
We come across rants like this all the time. Stop staring at my child. Stop ignoring him. Stop saying this or that. Say this instead. Heck, I’m guilty of having done this myself.
Years into parenting my child with special needs, I have a clearer view of what’s happening.
The truth is, parents of children with special needs are a confused bunch.
We send mixed messages and it’s easy not to know how to approach us. I don’t know how to approach us either.
We’re just trying to figure things out while mending our broken hearts.
What I know for sure
People are curious. It’s normal and it’s part of life. Not everyone means harm. Most don’t.
When people stare at our children, it’s not because they hate them.
I have found myself glancing a second too long at children in waiting rooms at the Children’s Hospital. It’s because I can relate. I know someone with a disability and I feel an automatic connection to the child and to the family.
Then, there are the questions.
People really don’t know what to say or do around us and that’s OK. I often don’t know what to say or do around us either. That’s because some days I’m in a good mood and will answer the questions positively. Other days, I don’t feel like talking at all.
“What to Say or Do” lists can be dangerous
When we put out lists, we risk creating boundaries. We might limit the interactions people have with our children for fear they may say the wrong thing. I can almost see the wheels turning as they try to remember that blog post explaining what to do in this moment, only they can’t for the life of them remember. So, they don’t say anything at all. Or, they end up saying something awkward-sounding. Even I, knowing what I know, and living what we’re living, have put my foot in my mouth when speaking with other parents.
We also create parental guilt. Some adults relentlessly apologize for the things their children have asked me.
I don’t take it personally. Really.
Even when the questions burn or remind me that things are different and difficult or that my child doesn’t live as freely as yours, I don’t take it as an attack.
If we are hard on you with our lists, it’s just that we’re hurting parents. We understand your interest. We thank you.
The underlying story behind their questions
On the day an elderly gentleman asked, “What kind of accident did he have,” he quickly understood my answer. “No. Not an accident. He was born with a chromosomal disorder.”
He nodded, “Sometimes life happens that way. We love them just the same, don’t we?”
“We love them more,” was my answer.
He then asked, “Life hasn’t been too hard on mom?”
On any other day, I might have broken down and said that it’s been very hard on mom. On any other day, I might have answered abruptly with a comment I’d only regret later.
But, on this gorgeous Autumn day, with the sun blaring and my son reaching out to touch the hand of this gentle stranger we’d only known all summer through brief greetings, with this same man choosing to walk a short path with us as he headed for the bus stop, with his choosing to talk with us, with his honest questions, my answer was, “No. Life hasn’t been hard at all.” In that moment, I meant it. That’s because his questions, that could easily have been misinterpreted, implied that he understood our reality all too well.
Revelations and a warning
We’re all doing the best we can in this life. We’re all learning from one another and trying to make the best of our situations. We don’t know the “why” behind someone’s stares and questions.
I will tell you what I think, and you can take or leave it.
Don’t take me too seriously.
I actually spend more time laughing through our situation than crying about it.
Some days, I’m OK with the stares. Some days I’m not.
Some days I welcome questions. Other days I don’t.
Please don’t feel you need to tread lightly around me. I’m a tough cookie. So is my son.
I promise to be honest with you. If I feel like talking, I will. If not, I’ll just let you know.
There is nothing you can say to me that I haven’t thought of before. If I don’t know how to answer, it’s not because you’ve offended me. It’s only because I’m brokenhearted and flawed and confused.
Please continue to invite us. Don’t give up on us. Ask your questions.
And, stare. Your stares tell me that you see my son, that you see me, that you see us.
And, I really need you to see us.