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

 

 

The eight ball says yes~

It has been a faster than normal summer it seems and here we are going into Labour day weekend already and its been six weeks since my last entry.  Not that I have nothing to say, just lacking the gumption to formulate my thoughts into logical sentences....

The quick and dirty...............

The realization that T will be discharged from therapy in only a few weeks has begun to sink in and new worries have begun to form like bubbles in our mixing pot of life. 

• What new behaviours will appear?  (Please T, don't hit your teacher or EA this year...)

• Will old ones come back? (fingers crossed the eight ball says no and he doesn't overhear any curse words in the next week....)

• How will he do in school five days per week as opposed to two?

• Will his new teacher "get" him?  Will anyone?

• Good Lord I have to go through this IEP again....explain his quirks again...explain why his lunchbox contains only popcorn and juice boxes some days because that is all he's eating at the moment......my head throbs thinking of it all some times....

• Will I become that Mom?  The Mom that the teachers dislike because she appears overbearing and in the way....the Mom that looks like she's been through the zombie apocalypse and back and is just hanging on by a thread(or her coffee cup or wine glass:)....the Mom who is constantly apologizing for her kid disrupting the class and sending in chocolates and coffee and booze (oh yes) to make up for it...the Mom who just wants her kid to be seen as all the other kids; in a nutshell.



I don't spend every waking minute worrying, cause if I did well, I wouldn't have time for anything else, especially the good stuff.............the hugs, the smiles, the connection with my kid.  That's all that matters in the end anyway, the moments that define you that happen every day.  If you don't stop to appreciate them for what they are you'll blink and miss them.

                                                   Off my soapbox for now...............

                                                      Trish and Timothy.  xo



Doubts be gone~ pleasantly surprised

I stopped expecting the worst
 and decided months ago to make my own(our) happiness a reality....  For Timothy, for my girls and for myself.

A few weeks ago proof of this came to realization with a small but mighty birthday invitation.  

Click here to read~ "Let's make it work"

 

The pessimist in me thought, it will never work, it will be an epic failure just like all of the other times we tried....instead I decided we needed to try again.  I am no quitter and want to instill those same values in my kids with every waking breath in my body.


 So, I swallowed my doubts and RSVP"d a "hell yes" to Carter"s Mom, Ainsley.

I am constantly amazed and perplexed with autism.  Often taken aback....once again I am proven wrong about what I think my son can and cannot do.  When I think I"ve figured him out, he does something so unexpected and out of the blue that makes
 my heart sing with pride.

Timothy recognized Carter right away and ran right into the inflatable minecraft castle.  It almost took my breath away how easily he fit in.  I had to stop for a minute and reflect on how this could have gone and immediately felt guilty.  How many invites have I declined over the years?  Have I done my son a disservice?  Perhaps.  I'm not one to live in the past however, and moving forward I will continue to keep trying to be the best Mother I can to my children in all aspects of their lives.

                                      Thank you Ainsley and Co for inspiring change in others!

 

Motherhood does not come with a handbook unfortunately and neither does Autism.
Gee wouldn't that be nice if it did?

I think what I can take from this is that we did try.  Sometimes its not gonna work.  Sometimes it will.  The point is not to give up.  Not ever.  Stop thinking can't and think can.

 May not be today, or tomorrow....but eventually they can....and will...


This life of ours is not all roses and I don't want you to read this and think it is.  Timothy has moderate to severe autism.  A learning disability.  However, I choose to focus on the positive because if you dwell on the negative you will drown in a sea of darkness and that ain't good for anyone.

                              So please take these words for what they are and just keep swimming. 
    

                                                                          Love Trish.

 

                                                Now taking new submissions for Project Timothy

"Let's make it work"

C'mon..... y'all know these don't often go together as much as we want them to. 

 Kinda like nuts and gum.  We parents of the "specials" know only too well the hurts our kids feel when they are left out of the social gatherings relative to childhood. 

Organized sports, play dates, sleep overs and yes- the dreaded birthday parties. 

I can say whole-heartedly that my son has not attended a single one.  We have received countless invitations in the few years Timothy has attended school;  of kids who mercilessly invite the entire class~ and for that I'm grateful (don't get me wrong).   Really cool sounding parties too.

 I wonder if the parents know what would happen if I brought Timothy?  The interruptions....the meltdowns.....how I would hate to take the spotlight from the birthday child.

So we politely decline.  Every.  Single.  One.

Until this one arrived..........

I don't know this Mom or even this child personally.  I want to.  Desperately.

This Mom wrote exactly what I needed to see that day and didn't even know it. 

This Mom gives me hope for Timothy's future when sometimes I get stuck in the darkness of his diagnosis.

This Mom is everything I strive to be.

This Mom rocks.

This ------>(ME) Mom will be RSVPing  a HELL YES for the first time ever.  And I can't wait.

 

 

Bam!  Catalina Wine Mixer!

 



What moderate to severe autism looks like for us, today.

So much has changed in such a short time for Timothy I'm having a hard time catching my breath. 

Last week was hard.  I learned Timothy is being discharged from IBI therapy which has been his second home for almost 18 months.  Not so much the hard part.  The hard part was reading he was in the bottom 1 % of 100 of his peers.  Ohhhh did that hurt my heart...........a general blanket of numbness came over me as it sunk in.  Yes this is real.  Its not going away any time soon.  And even as I felt it wash over me I was calm.  I knew these things already, yes.  Not surprised, no. 

I know my son and I know his struggles are real and not buzz words.

I know that when he tries to print his name, today he can't, and that's ok.

I know that when he tries to make it to the toilet, sometimes he can't, and that's ok.

I know that when he tries to fit in he won't today, and that's ok.

I know that when he tries to eat "other" foods, today he can't, and that's ok.

I know that when he tries to tie his shoes , today he can't, and that's ok.

I know that when he tries to do everyday kid things, today he can't, and that's ok.

I know that when he rides the bus (aye, it tis the short one folks) he wears a harness to keep him safe, today, and that's ok.

I know that at seven years old, he wears diapers still, today, and that's ok.

Here's what else I know about my son.....

 

I know he feels happiness today and that's ok.

 

I know he feels loved today and that's ok.

 

I know he tries today and that's ok.

 

Maybe tomorrow he can do something he can't today.  Maybe not.  I am ok with that, either way.

  We live for today and what he can do.  This is what Timothy's autism looks like.  How about yours?



Love comin atcha from my house to yours,

Trish.

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.