What being a Special Needs Parent teaches me about #BlackLivesMatter

all lives matter. and all kids are special.  and what that means is sometimes we need to pay special attention.

all lives matter. and all kids are special.
and what that means is sometimes we need to pay special attention.

I have three children. They are all special. They each have needs. But I have one child who, according to Official Assessments, classifies as being a kid with “Special Needs”. I am amazed and so very grateful for the slew of resources and assistance that we receive for this kiddo. Both at home and in school, we have helpers and people-with-masters-degrees-and-clipboards, paying special attention to give extra support where it might be needed.

The goal of this all is not to give this child special treatment for the sake of special treatment. The goal of the special treatment is, actually, to smooth the way for all the kids in our family, and all the kids in our class, to be able to relate as healthily and equally as possible. There is an inequality of input (one kid gets extra support) to try and move our little home-and-school community towards equality of output: extra support for one so that the parents and teachers can try to give equal attention and time to all.

I mention this because I sometimes struggle with the label “special needs”, since it seems that by implication it might be suggesting that children without this label are neither special nor have needs. This is obviously not the case. To say I have a child with special needs doesn’t mean my other children—or any other children, for that matter—are any less special or have less important needs. To say I have a child with special needs is merely to identify that we need to pay attention differently to that kid because, without intentional acts of listening, observing, and intervening, they would flounder in the system, and both they and their classmates would suffer as a result.

I’ve been wondering whether the same should not be said about the #BlackLivesMatter conversation. To say that black lives matter is not to say that other lives do not. All lives matter, a truth deeply vested in our being made in the image of God and each person being uniquely imbued with dignity and strength. To say that black lives matter is to identify that we need to pay attention differently because, without intentional acts of listening, observing, and intervening, they flounder in a system which privileges whites, and both people of color and the world at large suffer as a result. 

Of course, there will be an angry reader who will write and accuse me of equating blackness with disability…. so before you send me that hate mail, let me say this clearly: that’s not what I’m saying. What I am saying is this: those of us privileged enough to not have to think about privilege (be it because of our whiteness, or being physically or mentally “typical” in the school system), may not appreciate how the system might work against you if you weren’t white, or weren’t able-bodied or neutrotypical.

And so to go the extra mile for “Special needs” kids doesn’t mean other kids aren’t special – it means they need special support so they can flourish alongside other kids, because all kids are special. And to say “black lives matter” doesn’t mean that all lives don’t matter, or that black lives matter more – it means we need to affirm something that has been lacking in people’s awareness and actions, to be active listeners and responders where we hear others’ stories – so that we all can flourish alongside one another, because all people matter.

“Mommy, what’s autistic?”

Wow, my child. That is a great question, and it’s a hard one for Mommy to answer. Even doctors don’t always know how to answer that question, but we need to try.

Sweetheart, autistic means that someone has autism, and autism means that their brains work a little bit differently to yours and mine. Some things are much easier for them: they can be really good at seeing patterns or building things or solving math problems. Sometimes it’s easier for them to not get jealous when they don’t get the same things as other kids. Sometimes they are extra good at remembering the words to songs and stories. Their brains find that kind of stuff really easy.

But autism also means that their brains find some things much harder than you and I do. It is harder for them to make friends and to talk about their feelings. It can be harder to look friends in the eye or to know how to share or take turns. Sometimes kids with autism need a lot of help to do things that you find really easy: like going on a surprise adventure or to a party full of new people.

They aren’t better or worse kids, sweetheart, their brains are just different. They have different strengths and weaknesses to you.

I know it can be really frustrating for you. I know it is hard when we play with little Daniel that he takes your trucks and screams if you want to have a turn. I know you feel like you ask him for a turn, but he doesn’t listen. But sweetheart, it’s not that he isn’t listening. Kids with autism get different listening messages to their brain.

When you are playing, you hear maybe one or two sounds: the sound of your truck, and the sound of the voices around you. But when Daniel plays, he hears LOTS of different sounds: he hears the sound of the wind in the trees and the traffic on the street and the crunching of steps on the gravel and the sounds of the truck and the music playing next door… and also the voices around him. We need to try and be patient when we are playing with our autistic friends because they have a lot more sounds in their heads than you, sometimes, and it can be hard for them to focus on your voice.

I appreciate that you share your toys and your life with Daniel, my boy. He needs friends, even though it seems like he wants to be alone. I know it can be hard, but showing love to him is important, and it will make your life and his better for it.

Maybe that’s too long an answer, love, but as I said – Mommy’s not sure how to explain it. I just know we need to be patient and to be loving, because we need the kids with autism in our lives, just as much as they need us.



Photo credit: autismlink.com, “Puzzle” from Andreanna Moya (Copyright from Flickr Creative Commons)