Okay, I’ll admit it. I don’t have it all together. You know those times I posted a picture with pride, or said we’re doing just fine, or made it look easy to parent a kid with a disability? That might have been a straight up lie, or it might have been me just trying to convince myself that I was qualified to do this job, or maybe we were finally having a good day.


But you see, the world is set up in such a way that people with disabilities, specifically my kid, are handed the short end of the stick day after day – and that’s if anyone bothers to hand them a stick at all. I have to watch her get looked over again and again: in jobs, by the waitress at the restaurant, in love.


What I do have going for me is that most of the time, I see potential. I see beauty in my kid and how quickly she picks up languages and how hard working she is. And I forget that the rest of the world looks at her and sees, first and foremost, the disability.


And so I am going on my merry way, thinking we’re okay, when reality hits. A boy toys with her affection, is verbally abusive. A boss refuses to give her tasks I know she’s capable of doing. A waitress asks me what she wants instead of her. Someone almost pushes her over in the grocery store and gets mad at me for defending her (I admit, I was a little…honey badger-ish.)


In those times, I fall into the vortex of thinking like they do. Of wondering if my kid will ever have the life they deserve, rather than the one they didn’t ask for. I start seeing limits instead of possibilities.


And at these times, I will admit it to you: I NEED HELP.


I need you to question me further when I say we’re just fine.


I need you to beat the bushes with me, leaning on your own contacts, to help me find her a job, a doctor, a boyfriend.


I need you to give me a hug when the world is unfair.


I need you to understand that I’m not uniquely qualified or gifted to do this; I’m totally faking it, and I’m just as flummoxed as you would be if it was your kid.


I need you to stop treating me like a saint; I’m not.


I need you to be angry with me that the world is shitty and unfair; that all else being equal, my kid gets passed over through no fault of her own.


I need you to stop saying, “You’re the perfect mother for a kid with a disability.”


I need you to remind me what I’m doing right, because I forget every day, and focus on everything I’ve done wrong.


I need you to vote for people who will respect my child and improve their quality of life.


I need you (the great big YOU out there, world,) to give my kid a chance in the workplace.


I need you to give my child meaningful employment. She can do a lot more than wash dishes.


I need you to offer to give me a break, to help with my responsibilities.


I need you to understand that every day, I’m on high alert for discrimination, and that it makes me chronically anxious. And sometimes that makes me short and cranky with you.


I need you to invest in resources that help my kid, and other kids like my kid.


I would really love to cheerfully say that I can do this by myself, that I’ve got this. You certainly are under no obligation to do help me in any way. I can limp along.


But if I’m being honest here, I need for you to take Herman Melville’s quote to heart:


“We cannot live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects.”


Your kid doesn’t have a disability. And I’m happy for that, and I know you have a million other things to think about in raising them. But I truly believe in the South African concept of Ubuntu – “I am because we are.” We are all better when we can pitch in our resources and help each other hold up half the sky.

You can make a difference for my kid, and for me.

I would be so grateful; and I will return the same to you in spades.