One of the hardest things for mums and dads of auties is what I call the “coming out”.
Of disclosing to the world that your child has autism
THow do you reply one day to the he breezy question of “Hows the little one”?
You have always replied “doing great”
Do you one day, just state baldly “ well actually he has autism now !”
When we first found out, I told just my very close friends ( those with who had discussed with me the all consuming “does he/doesn’t he” of the months before getting an official diagnosis of he-does) .
I told them by email and I told them that I did not want to talk about it at all.
The talking could come later.
Many people said kind things "Must be hard.... is there anything I can do?"
But the words of other people ( even when, well meaning ) hurt so deeply
"Did you see that Larry king show" ( where the mother was taking about killing herself?)
Will you be taking him to Vegas to play the slots? ( yup mother-to-rainman, every woman's dream)
"I read this great book - this mother stopped giving her kid cheese and he became unautistic "( thanks for letting me know )
"I used to think i had it tough .. after seeing what you are going through -- I am going to stop feeling sorry for myself "( I always planned to get to the bottom rung of the pity ladder )
Just curious.. if you could do it again what would you do different …You must really regret vaccinating your child( ouch !!)
Do you think its because you were so stressed when you were pregnant?” ( always a comfort to know that it was my fault )
“These are chosen children of God!” or –“this is just a penitence for past sin” or “god has only given this to you because you are strong”( wasn’t feeling so lucky to be chosen )
And the worst "Soon they will be able to screen for autism in utero and we can prevent autism "
How it hurt!
But, the truth is that most people were just looking for something to say.
Often ,in fact, they were trying to read my attitude to see what would be right thing to say.
Should they should sympathize or offer something uplifting?
Sometimes, of course, they were not thinking at all
But, almost never, was anyone looking to hurt
The intent was usually kind
All my life, I have been deeply in love with words.
So much of my childhood filled with pleading for more reading time while my mom told me I was ruining my eyes and threatened to turn the light switch off !
But being loved so deeply by R - my child, silent for so many years- taught me to look beyond words
He taught me to look to the intention behind the words.
And it makes all the difference to how I feel about what is actually said
The second thing that has really helped, has been falling back in love with life and realizing our child is the best child in the universe to us.
So I can truthfully answer" he's great". A cue to starting the kinds positive conversations
The third thing that has made a difference has been to teach myself to be a little less sensitive
The other day an elderly aunt commenting on R’s talking asks” will he always talk like this or will he improve any more”
My mum, on hearing this quickly comforts me “oh she is a broken drum ( Bengali proverb) no one knows what sound will come out of her next.. let it roll off your back “
And I can !
I , Floortime lite mama blog about my adorable son, my life and joy at www.floortimelitemama.com. Come see me there