Do you know someone with a kid who has a disability? Are you the sibling of someone with a kid who has a disability? A parent of someone with a kid who has a disability? A teacher of a kid who has a disability? A colleague? A volunteer? Do you think you know disability? You don’t. The only people who truly know disability are the people living with that child day in and day out. But even if you spend a lot of time with a person who has a disability, you don’t know disability.
Please, let me explain. There are days when disability is on the back burner of my mind. Things seem *almost* normal. There are days when I actually welcome disability because it has opened so many doors for me. I love the people that have been brought into my life and the opportunities I have been given because of disability (insert shameless plug for the Fairfield City Schools fishing trip for students with special needs). But people, let me tell you, no matter how much you think you know disability, you don’t.
The bottom line is, you don’t see the real shit. You don’t see the all of the really ugly screaming and hitting and kicking meltdowns because we leave the area for your sake – not ours. You don’t realize that we have to set our alarms for the middle of the night to cut fingernails, or remember to bring the clippers to do it when they are passed out in exhaustion in the car on the way to their various therapies. That we wait up way past our desired bedtime to change the poopy diaper we know is coming because they have to wait for reflexes to take over when they don’t understand the “feeling”. That we have to carry a human being more than a third of our weight (we are little moms). The constant stress and worry of the health and physical issues that arise at any given moment, especially when they can’t verbalize their pain, only cry. I could go on and on but I won’t. We don’t want your sympathy or pity. We need empathy. We know the difference.
And then there’s this. The breakthroughs. The moments we have been working on and waiting for that she decides to show us when she’s ready.
And this. The innocence and beauty of a child who just wants to be loved and happy.
Kind of like childbirth, I tend to forget the pain in moments like this. And then I am experiencing those pains all over again. And again. And again. But just like childbirth, it’s worth it in the end.