Walking that mile in our shoes.......




Lately, I am reminded again and again of how autism is perceived. The handsome teenager with autism who takes the popular girl in school to prom or the cute girl with autism who is the best barista in town.  These examples are nothing like my reality with autism.
 So please, allow me to tell you how we experience autism, here in our home.

My son Timothy is 7 years old.  He carries a diagnosis of autism spectrum disorder.  His last IQ testing had him in the bottom 1% of his peers.

                                                                             This is our autism.


 Timothy is locked in his room at night for safety via child safety doorknobs due to wandering and lack of danger. Its certainly not how I want it but for now it keeps him safe.  Several 911 calls and nervous breakdowns on my part have dictated it to be so.

                                                                            This is our autism.

He is finally toilet trained as of this spring in the daytime, still wears a brief at night due to nighttime bed wetting....wait, he will not sleep in a bed....floor wetting?  Do you know how hard it is to find diapers to fit a 7 year old who weighs 70 lbs?  How expensive?

                                                                             This is our autism.

Timothy has difficulties riding in my vehicle and often becomes aggressive to his sisters, pulling their hair and smacking them. He will kick at the windows.  He will throw objects at his sisters and myself (the driver) if given the opportunity.  He has grabbed my hair several times while driving.  Talk about multi-tasking!

                                                                             This is our autism.

Our household revolves around Timothy.  His behaviour can make or break the day.  If he is distressed or upset, we all feel it.  When he smiles, it feels like the sun is shining down on our faces and in our hearts.  We truly just want him to be happy.

                                                                            This is our autism.

I don't recall the last time we went out to eat as a family.  We can't.  We have never bowled, been to a movie, gone to church, a ball game or the aquarium together.  Timothy can't yet tolerate it.  I'm not sure if he ever will but still cling to the hope that one day we will have these experiences, that he will.

                                                                           This is our autism.

One day I will have to face the fact that Timothy won't be able to live with us anymore. Emotionally I'm still in denial but with every passing day it comes closer to becoming reality.  My family won't be a family without him.  My heart, broken.  I pray that he won't feel abandoned and that perhaps he will find happiness.

                                                                          This is our autism. 

We eat, breathe and sleep our autism.  We cry, we love, we celebrate our autism and we mourn it.  I don't know how to be anything else BUT a special needs mama.  I love my son.  I do not love his autism.  It takes, it twists, it distorts and it hurts.
 


                                                                This is our autism.

I hope that somebody out there reading this can find comfort  in knowing they are not alone....that there are others out there living similar lives with their own version of Timothy.  Their own autism.
Let's share some stories about our different experiences and shine the light on the other side of autism.  The one that isn't always so pretty but is a reality for so many of us.

Love Trish