Its not worth it..

Trying to fit in.  Trying to force my 6 year old son with autism to be like the “normals”  (it just sounds better than neuro-typical, don’t you think?)  Sssshhh -ing him in McDonalds on a rare occurance that we are brave enough to take him in when he is making his happy sounds….  Wait a minute…..Why exactly is this rare? I’m not embarassed of my child.  Hell to the no.  Do the gawkers wear me down?  Absolutely.  But why should we care so much?                 Why do I want him to conform; to be like everyone else?

He wouldn’t be Timothy if he didn’t make funny, silly, sometimes strange faces…….

He wouldn’t be Timothy if he didn’t make the couch rock back and forth with his happy stimming bounces.

He wouldn’t be Timothy if he didn’t bring me to tears with a single word or gesture that other children his age did years ago.  Or at the same time bring me to my knees with sorrow or make my heart full with pride.

He wouldn’t be Timothy without autism.  I couldn’t be Timothy’s Mom (who happens to feel pretty damn lucky to have such a cool kid) without autism.

Hang on a second.  I probably could.  But it wouldn’t feel this amazing.

 

tHe BoOk Of TiMoThY oN fAcEbOoK

tHe BoOk Of TiMoThY bLoG

~This post is dedicated to the memory of Alice Ishkanian. May you RIP.

1 in 68

Another summer has passed.

And so has my one year “Blog-o-ver-sary”.  Sharing Timothy’s journey for the past 13 months has been hard-happy-sad-tearful-angry-joyful-grateful and damn eye opening.  No longer am I in mourning of the child I thought I should have.  No more “ripped off” feelings…….shameful, I know, but I felt it and even now I will own those feelings with no regret in my heart. Years ago, when I had no idea what autism was; when he would melt down in public my face would burn with all of the eyes on him.  I could hear others thinking and even those that chose to voice their disapproval aloud.  “He needs a spanking”  or “terrible parent”.  It was my fear to be “that parent”.    I had no freaking clue what was happening inside him, what he saw, what he felt.  Extreme sensory overload.  Fear.  Anxiety.  Autism.  This was my third child, wasn’t I supposed to be some sort of expert by now?  Not even close.  Autism had claimed my child, my beautiful tow headed boy and had him in a death grip.  It has been our mission to loosen that grip ever since and every day we come a little closer to understanding what is happening in his world.  He is 1 in 68 according to the current stats.

Wait a minute.  My kid’s not just a number. His name is Timothy. He is six years old and going into grade one tomorrow. Here he is so you can say hello!

Our home may have train tracks throughout the kitchen.  It may have crayon scribbles in the hallways and random cards and pictures taped to mirrors and doors.  Our cupboards are stocked with microwave popcorn and apple juice boxes because that is what Timothy eats.  (really).  He may be 1 in 68 to everyone else but he is 1 in 1,000,000 to us.

Our lives are wacky, messy, and downright hard-imeancan’ttakeanotherday hard.  But I wouldn’t trade it for anything.

This is autism in our house.

thebookoftimothyonfacebook

What next?

School year complete- check.  Kids home every day-check.  Mom’s got a one way ticket on the crazy train- now boarding.

Timothy has therapy four days a week, Tuesdays at home so I have to make sure I clean at least once a week.  The animals have voiced their displeasure with the situation.  Pretty sure we all prefer school friends.  Last week was a doozy.  Timothy vs Doors.  We have been trying to limit his ummm “exposure” with doors @ the advice of the therapists and they have been successful.  Me not so much.  So off we go from therapy Wednesday with me putting hard limits on him.  He’s not pleased.  In the least.  So he takes off and runs between the cars in the lot….CLOSE to traffic.  Almost to the point of me yelling for help which I never do.  I always “handle it” no matter how bad.  After ten minutes of him dodging me and playing possum I caught him, wrestled him into the car.  For forty eight pounds he is strong.  I have a hard time with him now when he is like this.  If I’m not careful, he gets both hands in my hair and God help me he doesn’t let go.  Mercifully I got him in his seat, screaming bloody murder (him, not me) and he began to focus his blows on the doors and windows.  Again, at the advice of the therapists, I ignore, turn up the music and drive.  Because of the screams I keep the windows up and it is HOT.

I pull into the drive and brace myself for round two.  At this point, most of our neighbours either know about Timothy or are convinced I am a monster as many have witnessed us dragging the boy in the house.  This day, no exception.  It was another production, dragging him inside while he tried to strike out and kick up TWO flights of stairs (why did we buy a three storey home) and into the safety of his room to calm down.  For sanity’s sake we have a child proof handle on his door.  Times like these we need it.  After half an hour of screaming and pounding on his door he is finished.  I open the door and he comes down when he is ready.  Doors 1- Timothy 0.

The autism in him has quelled and again he is Timothy, a sweet and happy little boy.

We joined Autism Ontario @ Twin Valley Zoo on Saturday as well and eventually enjoyed a few hours there.  Timothy had a meltdown because of a) the line and b) the doors.  After half an hour of screams, hits and laying on the ground we were able to continue.  I was a little sad to see many parents gawking at him….weren’t these ASD parents as well?  Shameful.  I kept my temper in check and we enjoyed our time there, my word it was hot.

Medication is still going….we expect there will still be bad days but as long as the good are there too, all is well.

Summer has come in like a lion (or bear) and hopefully will go out like a lamb.

Thanks again Autism Ontario!

Love Trish.

#autismontario #asd #problembehaviour

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Rose coloured glasses are all I wear

Today was a great day.  I cried many a tear, but all were happy and joyous tears.

I cried when a friend told me how my blog had touched her, because that is really the reason why I'm doing all this.....one person who "gets" it makes it worth my time.

My appointment today at Timothy's school to discuss this years (IEP) learning plan was the second occasion.  They say its "informal" and yet I felt underdressed!  Sitting at a table with the principal, the head of special ed, Timothy's teacher and his EA; I am handed an eight page document and immediately feel overwhelmed.  His goals, their goals, my goals...it all begins to sound like blahblahblah until something incredible happened:  Timothy's teacher began to talk about how wonderful the other kids in the class are with him, how some are drawn to him and get excited when he learns something new.  Then S his EA chimed in and said its a class "project" to help Timothy.  I could feel the tears welling up in my eyes.  These were the most beautiful words I had heard.  My fears of bullies and rejection had been washed away like the rain and man, that sun was shining SO brightly. 

They talked on, mentioning he had taught himself to READ in class-reading short phrases and words in the classroom.  HOLY COW!  I felt like I was going to burst with pride.

We walked to his classroom where I was to "observe" for a few minutes but he saw me and ran over.  I scooped him up and tried not to cry.  There was never a moment where I was more proud of this boy called Timothy.