An open letter from me to society:

Dear society…. Just because you cannot see a disability does NOT mean there isn’t one!!!  Just because you see someone who “looks” absolutely normal does NOT mean he or she is!  Wishing it will NOT make it happen.

When you look at my son you see what he wants you to see.  He tries very hard to appear normal and come across like his peers.  The years have taught him that he will be made fun of, ostracized or ignored if he cannot conform to our expectations of normal.  You see him doing his best to achieve that.  He hides behind this social persona he struggles to maintain.

He has learned not to trust you and for good reason.  You do not understand what his disabilities are and you choose not to see.  It is easier not to, isn’t it?  He knows that and so do I.  His uniqueness bubbles through every so often and shocks and dismays you.  He gets into situations that you chastise him for and correct him.  You can’t believe that someone as big as he is acts like a child.  How can someone who is 17 and almost 6 feet tall act like that?

Yes, I know your disbelief when I have to remind you that my child, adult though he almost is, is disabled.  I see it in your eyes, the tone of your voice and your words.  So does he.  He hears your reminders to smarten up, act properly… be more grown up.  We have both lived this path his entire life and that weary look on my face?  It is from going over the same old, same old again and again.

Why are you shocked when I tell you he will not discuss his fears and his disabilities with you?  Why do you not believe me when I tell you that he is not as capable as you think?  Why do you believe I am short-changing my son and underestimating his abilities?  Why does it never occur to YOU that YOU are overestimating his abilities?  Or that he cannot do all the things that you assume he can?

Why do you believe that because he is so tall and big, that he is just that much more mature and grown-up?  I would almost wish a physical disability for him ~ one that you can see…that stares you in the face so that you CANNOT forget what is right in front of you.  Something there for you to catch yourself and give the kid a break.  Does it scare you that someone can look so normal yet be ….well…. “odd”?  You can’t put your finger quite on what that “odd” is but you can see it and hear it.  Why do you continue to OVERESTIMATE his abilities?

The evidence is right there.  I am there, as your guide to understanding this person.  I tell you things to help you develop a trusting, caring relationship with my Son.  He doesn’t trust you, you know.  He hasn’t had a lot of success with society out there.  People, for the most part, have no patience nor a desire to understand a person like him.  He knows this too.  I have known this person from before he was born.  I have been there, for every damned appointment… for every assessment, every test, every professional he has seen over his short life.  I am his expert.

Listen to me.

Remember my words.

Respect him and his world.  He is doing his best to fit into ours and we’re not very accommodating of him.  We expect him to mold into our values, expectations and public behaviours.  But that is his disability.  He doesn’t recognize facial expressions.  Or tones of voices.  If you do not tell him what you expect, he doesn’t know and he cannot pick it up from nonverbal cues.  He needs simple and uncomplicated instructions.  He needs you to tell him one thing at a time and to let him absorb it before moving on.  He cannot process quick and complex instructions or written directions. 

His disability does not come and go as it pleases.  He can’t pretend it away like you can.  I have been with him every step of the way on his life’s journey and I translate for you.  I am the only person he confides in; the person he trusts to help him deal with his anxieties, worries and fears.  There are many.  He is medicated for it actually, but that is something you will be told once and I guarantee, you will forget this.  It is important for you to remember though.  This anxiety can cripple him if you are not careful about what you say around him.  Little problems become exploding volcanoes and I spend hours calming him down and soothing the panic into something manageable.

He just took another baby step, at the age of 17, that I am very proud of.  He walked to someone’s house all by himself.  From our house to this boy’s house.  All.the.way.  By himself.  Without either parent accompanying him, or the boy meeting him halfway.  It was only once but it was a start.  It was daylight, a bright and sunny day.  And he did it.  Seventeen years old people.  Baby steps and something new.  A tiny bit of independence, hard won and a long time in coming.  This is what his life is like.  Months on end without maturing mentally and then *poof* a small positive change that is such a big deal for us.

I know we will have this talk again.  It seems we have it quite often and I feel like a broken record (maybe MP3 player nowadays?).  But here’s the problem guys…. one day I’m not going to be here anymore and someone out there, maybe YOU, are going to have to take care of him when I am gone.  This is MY anxiety and MY panic now that he is growing into an adult.  It is a worse fear than anything I felt when he was a young child.  I need you to hear me, to understand me and to REMEMBER.  Life is hard enough when your family and friends leave this world.  It is devastating to those who depend on that trusted guardian, like me, to protect them in our world.

It is a mother’s plea.  From all of us mothers out there with children who are disabled.  Whether those disabilities are visible or not.  Please listen to me.  Hear my words so you will know how to watch over my child when I cannot. 

Inside that big boy is a scared, little boy.  No matter what you think you see and hear, I am telling you what is actually there.

Hear me, please.