What I Wish You Knew – A Letter from a Special Needs Mom

Dear Observer,

I see you. You may think I don’t, but I do. As my six year old hits those supersonic notes and flings himself against the wall, I see you watching me. Sitting at a nearby table at a restaurant. Wheeling your cart by me at the grocery store. Sitting across the table from us at family dinner. I see you watching me.

It could be you are only interested to see how I’ll react. It’s possible you sympathize with me and are thinking, “Thank goodness my kid isn’t the only one.” Or it just might be that you are watching me, thinking how my kid is a brat and that I need to get him under control.

In any case, there’s one thing I’d like you to know. My son has special needs, even though to the outsider, he looks totally normal. When I say “special needs,” what I mean is that he has a diagnosed disorder that makes it so that he needs just a little bit extra in certain areas of his life.

So as you see my son – who is rather large for his age – fighting to get away from his mom – who is rather scrawny for her age – what you see is a little boy whose brain is functioning different than yours or mine. You see a culmination of several different variables boiling over. What you see is not a fit of a bratty kid who needs a good talking to. What you see is actually a meltdown.

You may think you know better or that I’m not doing my job as a mother. But what you don’t see are the nights I cry myself to sleep because I feel lost. What you don’t see are the hours spent reading articles and trying out new techniques and systems. You don’t hear the conversations I have with his school teacher weekly, sometimes daily. You don’t see me sitting calmly on the floor, helping my son through a meltdown, when on the inside, I want to punch a hole in the wall. You don’t see his dad and I taking turns tapping out so the other can have a breather.

You see a kid throwing a fit.

You don’t see him tucked in a corner with his nose in a book, laughing when he gets to a funny part. You don’t hear him pat a lonely boy on the back and ask him, “Do you want to come and play?” You don’t see him chase his sister around the house while she’s the princess and he’s the knight trying to rescue her. You don’t get to hear him explain all about Jupiter and its four biggest moons and which one would possibly be considered inhabitable because of its copious amounts of water. (It’s Europa, by the way.) You don’t hear his voice happily announce that he had another great day at school with no impulsive episodes and no fits at school. You don’t see his face beaming with pride that he has made so much progress without the aid of medication. Just by sheer will and positive reinforcement from his family and teachers. You don’t get to see him run to his mom and wrap his arms around my waist and squeeze.

Whether you’re judging me or not, there is so much you don’t get to see. I wish you had a glimpse into his soul as he tells jokes or plunks out Beethoven’s 5th on the piano, or builds a lemonade stand out of K’nex.

You don’t see his dad and I sneaking into his room at night and just gazing at him, our hearts so full of love they could burst.

 

 

And isn’t that what we all want? To be loved so completely by someone that it doesn’t matter that the world doesn’t understand us. They get us, and that’s all that matters.

He is learning. I am learning. You are learning. Remember, there are things that you don’t see.

Sincerely,
A Mom