Don't call me normal

There was once a time in my life when I tried to be "normal".  Oh I was naïve back then, even though it wasn't all that long ago...

Normal looking, normal acting, normal wife and normal Mom.  It doesn't suit me.  At all.  Striving for mediocrity was never something I was into or good at.  Fitting in never worked.  I was always the kid who stood out, no matter what for whatever divergent reason.  Wrong hair, wrong clothes, wrong interests, wrong wrong wrong.

Act normal, be normal, do normal.  Guess what?  Normal sucks!  Normal is boring and fits me like a pair of size 2 jeans (snort) ummmm, yeah not really!

The day I stopped caring so much what others thought was the day I lost a cumbersome amount of weight, and no this was no miracle diet....It was so bloody freeing I wondered why I had waited my whole life to do it.

We just returned from a Timothy-less vacation, me and my two girls.  Was it hard to leave him behind?  Damn right.  Did I miss him?  Every day.  Would I do it again?  Absolutely.

What's this gotta' do with autism you wonder?  Its the autism that set me on this path of freedom.  As shitty as it can be some days, autism has opened my eyes to many things and folks, they are WIDE OPEN.

 How you ask? 

Watching my child be judged based on his appearance or  his behaviour.  Watching my parenting skills be judged and even dissected.  So I stopped watching.  I do me and I do my family and that's all that matters to me now. 

So before you give me a dirty look or shake your head at us~ because you don't understand~ check to see if I'm paying attention to you............I assure you I'm not.

 

till next time...........

 

Betcha didn't see that coming....

I've been away from the blog front row for a few weeks (okay maybe a month and a bit if I'm being honest and guess I should be) to sit back and observe my life as it is now.  Our new lives as separate parents, as friends, and, well, separate people.  I get myself and the kids up and take them to our (fabulous xo) private daycare in the wee hours of the morning and then drive the forty five or so minutes to my place of employment where I spend the next twelve hours working.  In the meantime, Timothy has been taken to therapy or school, or both; and then waits for me at daycare when I pick him and his sisters up at about 745pm.  The days are long, no doubt, and often leave me wondering...


                 why am I doing this..............?


I'm going to share a secret with you.

Ready???

I'm deliriously happy.

I am a single working Mom to three kiddies.  The youngest carries a diagnosis of lower functioning autism and is a year + into toilet training with no end in sight but holy shiz he is ALMOST dry all day long now (YES! Fist pump!).  Timothy  is the reason I know my LCBO clerk by her first name.  and why I need medication to sleep most nights to stop the worries from taking over my brain.

 My older two girls Skylar and Casey are "typical" (whatever that means) tweens who like the run- of- the -mill tweenie things.  They test my patience every, single, freaking day. 

What the important piece here is, is that

we are all four of us in this together,  this AuTiSm piece. 

Every day we try to find the PeAcE in the PiEcE of this autism flavored pie.  Often its hard to find; hidden behind that green pepper of aggression, or the mushroom of meltdowns that nobody likes.

I can't predict the future, hell I can't even predict what tomorrow will look like.  I do know what I will look like~ what I will feel like and its peaceful.  Come what may, bring it on and I'll do my best to be ready.

                                                                            Cheers!

                                                                         Love Trish.

 

This is our "normal"

~Trying to be positive all the time gets annoying. 

There, I said it.  Inhale. Exhale. 

Some common questions I would like to set the record straight to.

"I don't know how you do it".
What I say: Well, you know......(but you don't........)
What I want to say:  Yeah me neither.

"He will grow out of it, right?"
What I say:  We don't know
What I want to say:  God I hope so, but I know he won't.

"How do you manage"
What I say:  I do my best
What I want to say: I drink wine.  Often.

"Autism.  All the kids have that now".
What I say:  1 in 68.
What I want to say:  I don't want to be in the "in crowd".

"Wow, what's wrong with him"
What I say: Nothing at all.  He's perfect.
What I want to say:  Nothing at all.  He's perfect.

"Cool, so like rain man?"
What I say: No.  All autistics are different.
What I want to say: You're wearing a track suit, so you're a track star? 

"So does he go to like, a regular school like regular kids?"
What I say: Yes, with regular kids cause well, he's a kid.
What I want to say:  Are you serious?

So friends.....  My life is not exactly like a box of chocolates........well maybe I can make the connection.  Assuming you dislike the taste of the one cherry covered chocolate in the box, or maybe its the cream filled, pick one.  Children are like a box of chocolates.  You never know which one you're gonna get........(Thank you Forrest Gump) could be the yummy caramel (the kid who is really good at soccer) or it could be the almond (the social butterfly of the box) or you could get what I chose, the cherry covered chocolate. 

 Its an acquired taste I have grown to love more and more each day.

A tough nut to crack

It really is amazing.  Those days, weeks or months where you just feel like you are in a terrible slump.... and then something beautiful happens to open your eyes to life's idiosyncracies to make you remember why it is you do what you do and what you do it for. 

That happened today to me.  I was rushing Timothy out the door to his marathon IBI session after school and his hat's brim poked me in the eye.  It didn't hurt, but reflex made me remark "ouch".  He stopped and his eyes opened wide with concern.  "Oh no, Mommy ok?" he asked as he brushed his fingers across my forehead over and over, searching my eyes for reassurance.

He felt remorse.  Concern.  Worry for someone else.  My Timothy.  This was the first time I have seen him show real, valid concern for me.  Despite the hundreds, perhaps thousands of times he has struck, kicked, scratched or head butted me without batting an eye; he felt remorse this time. I wasn't sure if he felt....what he felt. This moment meant more to me than words can say.  It is everything.  It proves his mind is as beautiful as I always thought it was.  It proves that even though the days are hard and sometimes I feel like giving up, I was meant for this, to be his mother.

The details aren't important.  What's important is that he reached out through the invisible force field of autism and touched me.  You see, sometimes I forget that he is a person and see him more as autism.  Its not right and I don't want you to think  I condone it.  But if I am going to be honest here as I swore I would be from the beginning, then there it is.  Sometimes I allow my mind to drift to the what ifs, whys and maybes....but really those don't help anyone, least of all Timothy.

Who cares why he is the way he is?  Is it my fault?  Maybe.  Doesn't matter.

What matters is now. And who I'm doing it for is Timothy.

 

How autism destroyed my marriage and why I"m not mad........

I”m sure you hear it all the time.  Autism has a bad rap with families and marriages.  Pulling them apart.  The stress, the constant worrying, the lack of time with your spouse and other children.  The focus becomes your affected child and there is no time for you and forget about your partner. 
I thought my marriage was strong.  It wasn’t strong enough.  My spouse and I did what many parents with special needs or otherwise children do: give everything they have.   Every spare waking moment directed at the children.   We were tired and weary.  Timothy (my ASD child) had a very long and aggressive period that we couldn’t seem to come back from. 

I cried and I cried often.  Timothy focused a lot of his aggression on me for some reason and it beat me down, really far down into a deep pit of despair.   I couldn’t take him anywhere without a second adult.  He destroyed our home; his anger apparent on our living room walls.  My partner couldn’t understand why I cried.  It hurt.  Even though I tried not to let it feel “personal” it was.   I didn’t feel supported from my partner~ although looking back maybe he was supporting me in his own way. 

 That seemed to be the beginning of the end.  We drifted apart slowly not even noticing at first.  As usual, the children were priority but I”m here to tell you that’s wrong. 

Who was there before your children?  Your partner. 

Who is your backbone?  Your partner. 

Who will be there when your children grow up and leave the nest?  Your partner.

Let’s be honest.  There is no handbook on parenting or managing a marriage and special needs.  You sort of have to fumble through it, messy as it can be and figure it out on your own.

If I can give you anything from this to take away, I want to encourage you reading, to make time for your partner. You; Moms and Dads of the specials; are as important or more so than your kid.  I’m serious!  Make time for each other.  Love each other.  Often.  Even if its only a few minutes a day or a monthly date night.  Learn from my mistakes.  You’ll be glad you did.

As for me..... I have learned so much these past few months on this rollercoaster called love and marriage and special needs, all blended into one………I call it:  “One day at a time.”

 

Always,

Trish.

 

 

Grateful for every day

Your eyes do not deceive you.  Yes, me.  I'm grateful for every day of my sometimes miserable, sometimes wonderful, always beautiful existence on this place we call earth.  It came to me last night.  Lansdowne (our therapy joint) held an IBI Christmas concert.  Sitting in a metal folding chair with my younger daughter Casey, waiting nervously for what I thought was going to be a crapshoot.  Twelve ASD children singing Christmas carols.....hmph.  I was very wrong.  It turned out to be an enormous wake up call.  In came the first group of teen/young adult carolers.  I saw my young son in all of their faces.  I saw joy and gravity and incredible happiness.  Until I tasted them, I had no idea tears were falling from my eyes.........(get to know me better, I seem to cry a lot)

This is what I wanted for Timothy.

  Peace and happiness.  Only I hadn't known it until that moment.

In they came.  I was searching for him through the shoulders in front of me for a few minutes until he came walking in, with two therapists and walked right out.  Aha!  I get it.  Its too much to sit there. Some smart cookies they are.  A few minutes later he came back and was able to sit and jingle a little bell to the last song.  I had to hold back my sobs.  These were happy sobs though, not from sadness.  I was so damn proud of him!  He didn't know all the words but that was the best freaking Jingle Bells I had ever heard!

It was over before I knew it and Santa was coming...............and we were going.  Timothy was done and trying to escape, anywhere.  Sensory overload had taken over and he was spinning like a little tornado looking for his house, his sanctuary.  I grabbed the other kids and off we went.
This was a successful evening for us.  We took a little detour and checked out the Christmas lights in the neighbourhood before steering for home.  He has come such a long way in just a year.

I'm so grateful for every moment like this.....a kid of 6.5 years old would have been in several concerts, assemblies or productions by now.  Not him.  Sitting for thirty seconds in a room full of people is a success.  Following a three word directive is success.  Hell, peeing on the toilet with cueing is a success to me. 

You see, the specials want what everyone else wants.  To be happy.  To be included.  To be loved.

Its my job as a mother to make sure my son can feel these things to the best of his ability.  Maybe he won't be able to but I"ll sure as hell try.

All the best to you and yours this holiday season and in 2015~

 

tHe BoOk Of TiMoThY oN fAcEbOoK

 

 

The day I stopped caring what other people thought of my son

Yesterday when we left therapy, Timothy lost it.

Usually after an IBI session, there is a protocol.  It involves a checklist, a visual board and two therapists that have faded out to just one and myself.  You see, visual boards have become a major piece of my pie of life in every aspect.  Nevertheless, yesterday was no different.  We left his cubby area, one of his hands in one of each of ours.  He was dressed, singing one of his usual tunes.  Through one set of doors and then the next.  Something changed when I opened the car door.  To me, the interior looked the same as it always does, his booster seat in its right place by the child-locked door and a small white basket of books beside it.  The usual powder from his jelly donuts and scuffs from boots on the back of the passenger side seat.  For Timothy, something inside him became unhinged.

Fight or flight kicked in and he leapt towards the door.  Prior experiences have quickened my reflexes and luckily I grabbed him by the back of his pants and held as he tried to pull away.  The therapist went to stand at the other door in case he got away from me.  In the meantime, I calmly coached him to sit down and offered quiet reassurance.  He lashed out.  Hard.  Head butted me in the temple and for a second I saw stars.  Hot tears sprung to my eyes as I continued to hold him in his chair.  I kept talking.  It was only yesterday but for the death of me I have no idea what I said to him....
I noticed several onlookers outside my car.  You have to realize at this point it was quite a scene because all the while young sir was screaming "no no no" at the top of his lungs and trying to hit his own head off of the car door.  Then the clothes came off.  First coat and hat, then boots, then pants and he was in my car in the dead of winter in his ninja turtle underwear cool as a cucumber.

The gawkers were still gawking, I had tears running down my face and sweat on my brow.  But we had made it through the weeds and he was safely in his seat.  I smiled through my tears and waved out my window as I drove off.  I don't know when it was that I stopped caring about how others saw me or my son.  All that matters is how we see ourselves.  Perfectly imperfect.  My life has become so unorthodox because of autism and my confidence so great in myself and in my children.  I have faith in all of us that we can get through just about anything these days and we will.........fully dressed or not.

 

 

 

                                                    tHe BoOk Of TiMoThY oN fAcEbOoK