What is love and what does it all mean anyway

 Several years ago Timothy was considered to be non verbal autistic.  I used to be asked time and time again what it was like.  How did I know he loved me?  Felt love?

I would automatically say that I knew he did, though sometimes I felt far less confident. 

Often he would touch my face.  Pat my back with a quick tempo in one spot or smile at me with bright eyes (oh those eyes....)  To say my child felt nothing was like blowing a bloody hole through my heart.  I mean, it's one if those heart stopping, gut wrenching moments that make you suck your breath in quickly and just stop...take it all in and think, yes this is really happening, it's real.  This is what it's all about.  

 

I love you Mommy.

 

I knew Timothy felt love.  I knew it.  One day he would tell me, but until that day the words left his lips he told me in other ways.

 He let me hug him.  Yes, let me.  For a time he disliked being touched and let me tell you, that hurt.  I knew it wasn't personal but oh, the hurt when he pushed me away...it was like a brick sat on my chest. 

He would seek out my eyes for a moment to let me know he was there.  To be honest sometimes I wasn't sure when he was with me and when he was not.  I would call his name and he wouldn't flinch or bat an eye.  Family questioned his hearing, his eye sight.  No.  It was autism that had his attention.

 

Not long ago the words formed on his lips and left his mouth like little sparrows like I knew they eventually would.

    "I love you Mommy."

 

 

 

         

The world did stop turning for several moments while I processed what he had said and I'm not quite sure he understood my tears or the big deal I made of this...
It was and still holds court as one of the biggest freaking deals ever in the history of Mr Timothy and his accomplishments.

Timothy doesn't have much spontaneous speech and this was no exception - it was practiced and modeled after my own "I love you Timothy's " for months and even years.

 

I love you Mommy.

 

When it can't be physically said it's being said in other ways.  A look, a touch, an action.  You just have to follow the breadcrumbs.

 

                                                                   Love to you and yours,

                                                                         Trish.  XO

 

       

 

Thomas the train is far too young for your son....

...Said the cashier at Wal-mart to me casually.

 

Timothy was not with me this night, I was Christmas shopping alone (gasp!  Holy Hanukkah it does happen once in a blue moon) and had this amazing Thomas the train advent calendar in my cart. 

 The older than me woman behind the cashier, had remarked on the calendar and then asked me how old my son was; as she had a three year old grandson who she had bought one for as well.

 

Had this been several years ago I would have gotten my back up pretty quickly and possibly said something not quite kosher to her, but not now, not this night.  She spoke so matter-of-fact.  I had to.  I just had to say something.  I couldn't let it go. 

 

Holy schnikes batman, she really didn't know how callously she could be perceived.  But does anyone really?  We have all become so damn politically correct, panties in wad, tongue in cheek, that really you can't have an opinion about anything, to anyone, anywhere at any time.......

 

Back to my little story....

 

I thought for a minute and then said, "Timothy really likes Thomas.  I don't think he cares what the other kids think".  Inside I was laughing, cause really he is kinda oblivious.  In an awesome way.

 

The woman  shook her head knowingly and replied, "Oh he will.  The others will make fun.  Maybe you should think about getting a different one? "

 

I smiled a her and said, "Thanks but no thanks.  He will love this one.  You see, my son is an exceptionally special little dude.  He is 7 and has autism.  He really won't care what others think because he just doesn't connect like that socially.  

 

Her mouth dropped and I could see the panic in her eyes as they began to water.  Before she could speak, I said, "Its ok.  How could you have known?  How could you have known he has the mental functioning of a two year old?  He loves Thomas and he would not be offended in any way by your comments and neither am I.  Really."

 

A tear slid down her cheek and of course I welled up too.  (Damn sympathy crier I am!  Never fails.)

She came out from behind the counter and hugged me.  She whispered "God bless you" in my ear and that was that.  I paid my bill and wished her a Merry Christmas.  Said perhaps next time I will bring the young sir by and say hello.

 

She smiled and said she would like that.

 

The next day I presented Mr. Timothy with his Thomas the train advent calendar.  And of course....he loved it.  Fist pump!

Wishing you and yours a wonderful new year!

Trish and Timothy.

 

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.