A letter to my son with autism

Hey Timothy, its Mom here.

Its September 13, 2014 and as I type you bounce beside me; your eyes filled with a joy only you can understand.  You are six years old.  You like pizza, jelly donuts (only the red jam) and Batman.

Tricia Rhynold's photo.

 

You seem happy today.  This makes my heart full and warm.  When you smile you make everyone around you smile!  The days when you are so full of angst and distress are so much more painful and hard to watch.   I know you don’t mean to hurt me when you strike out in anger.  What makes you feel that way? I have always wanted to know so I could make it stop.  Its my job as your Mommy to protect you and keep you from hurting.  But you can’t tell me.  No one can.  We can only guess through pictures and trial and error.  Some days, magic happens and you shout out new words.  Often you’re not quite sure what they mean or they are said in the wrong context, but you are trying hard! 

I know that life isn’t easy for you.  Many of your peers seem miles ahead of you.  While you are toilet training and learning to dress and feed yourself; they are playing competitive sports and video games.

While you are learning to tolerate having others in your personal space they are wrestling with each other, but not with girls~eeeeeew!  Most six year old boys think girls have cooties (little invisible bugs)  while you are learning to discern between girls and boys.

You tried a new food this year which puts us into the double digits of foods you will eat.  Rice crispie squares!  Aren’t they good?!  I hope you will continue your brave quest through the food jungle, just like Batman would.  He is one of your favorite super heros right now.

Mostly I just want you to know you belong to a family who love you very much.  I bet all of the therapies you have to go through are tough and you don’t like me very much for making you do them.  Timothy, we are doing this because we hope they will help you to communicate with us better.  Think of Batman. Autism has sort of put an invisible force field around you and you are trapped inside.  You need to keep being strong like Batman and try to figure a way out of this force field. 

You may not be able to.  That is ok.  We will figure it out together.

Love always and no matter what,

Mom.

HEART

tHe BoOk Of TiMoThY

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!

Photo: Yesterday was a hard day. This is the calm after the storm.

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.

Photo: #autisminourhouse

This is autism in our house.

HEART

thebookoftimothyonfacebook

My kid rides the short bus

As we all get pummelled with ads for back to school, I”m sure I’m not alone when I say how much I”m looking forward to the return of the short bus.  I am always puzzled when other Moms say,  I will miss them too much, I want them home all the time!  Then it comes to me.  Aha!  You must have normal kids!  The kind you can take to McDonalds and on play dates and its fun, not stressful.

There is no struggle to keep them occupied, and not in the way you think I mean.  I mean the constant monitoring of doors, lest he escape cause he has absolutely no sense of danger.  I mean the trips to therapy where I have to pull over to the side of the road because he is beating the living crap out of my other children.  I mean the ongoing destruction of my home that we can’t keep up with from his rages.  I mean feeling like a prisoner in my own home.  I can’t take my kids to the park or beach like other Moms.  Not without a second adult to help when Timothy has a meltdown and gets violent.

So don’t look at me like that, (yes you) for hating summer vacation.  Back to school means routine and a break for parents with special needs.  If getting through summer on caffeine and the skin of my teeth makes me a bad parent then so be it.  I will willingly lend you my shoes, please I implore you.  Walk in them before you judge me.

So when that short bus rolls up to my driveway in a few weeks, yes I will be celebrating with my big mug of coffee.  Cause as much as I love the boy, its ok to need a break….heck he probably wants a break from me too.

Tricia Rhynold's photo.

Love Trish

HEART

Dog-gone days of summer

I will admit (only once) that I was one of those annoying people that complained about the looooong Canadian winter.  It is hot.  The a/c decided to up and break.  I’ve got three irritable kids who happen to have an irritable Mom.  It is hot.  We are hot.  Two are boooored.  One just happens to have autism and is constantly needing to be engaged and wanting a bath.  You heard right.  Repairman coming not soon enough!

I’ve been holding off writing because I have been waiting for something positive to say…and I had an epiphany.  Autism in this house isn’t always pretty, or nice…it can be plain old ugly sometimes.  Last week during a home therapy session, Timothy beat on me pretty good, left some bruises-more inside than out.  Today he hit and kicked another little boy who just happened to be sitting in the wrong place at the wrong time and also attacked his sister.  We all have scars from autism in this house, many of them emotional, a few physical.

Now if you are reading this and thinking I am looking for your pity you are very wrong.  I, we, are damned grateful for everything we have and although I don’t mention him often- the Daddy I picked for my children couldn’t be any better.  While the future remains unknown, I respect him as a father and every day that respect grows.  We struggle financially, emotionally and physically, trying to provide the best we can for all of our children, but still we are grateful.  What for, you ask.  We have choice.  We have therapy, we have resources, we have hope for better days ahead. Its because of that hope that we can go on…another day, another hour, sometimes only a few minutes.

Tricia Rhynold's photo.

I respect the hell out of any special needs parent.  Its not a highly sought after job with awards of merit and the like; often lonely and isolated but the perks of this position can bring you more satisfaction than any prize.  A few words or a small gesture often bring me to tears.   We fell down the autism rabbit hole and learn as we go.  Every day is trial and error.  We “specials” are a different race.  Not better, just different.

Yours, Trish.

HEART

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Mud baths for all

While others send their kids off to camp or play dates and parties we spend our days in therapy and the backyard.  Autism doesn’t know what summer vacation is unfortunately and doesn’t take weekends off.  Mr. Timothy continues to do “well” on his medication.  That means the slight improvements in his aggression and behaviour are steadily holding at slight.  His struggles in the car continue and unfortunately that sometimes means some whacks for me, his Dad or his sisters.  He does settle a little quicker.  We are searching for a five point car seat that can contain him a little better.

We frequently remind his sisters that although he hurts them, that does not mean he doesn’t love them.  Its a hard balance and tough for them to understand.  However their love is unconditional and they accept him as their brother regardless of his differences.

I loathe autism sometimes.  I hate how it has separated my son from us.  It is not a gift despite what I read sometimes.  It is harder than anything we have faced, relentless and hurtful.  It is a struggle.  It means diapers, still; at 6 years old.  It means no baseball with Daddy.  It means no birthday parties, play dates or summer camps.  It means my child is stuck in a body he sometimes cannot control; feelings he cannot express, words he cannot say.  It means that we, as parents, must give up our selfish thoughts of the son we thought we wanted.  It means unconditional love.

However, he continues to amaze and fascinate us on a daily basis with bursts of astuity and coherence.  I hope one day to know what he sees and feels.  How he is fascinated with water.  I wonder what he sees when he looks at it.  I wonder if he feels lonely?

Its a lifelong mission, you know.  To connect with him.  We won’t give up.  Not ever. 

To find joy in every day is our summer goal (or mine-although this blog is not mine, its his- I’m just the scribe).

Since we have Thursdays off from therapy/school, we have taken to the sprinkler for relief from the heat.  Timothy loves water and pushing his “coupe” into the sprinkler.  The kids have discovered a soft area in our backyard that quickly fills with mud.  They create potions and Timothy pours the mud down his chest, which he really seems to like!  Ewwwww!

Here are some pictures of successes below……….

Love TrishHEART

 

Tricia Rhynold's photo.Tricia Rhynold's photo.

Tricia Rhynold's photo.Tricia Rhynold's photo.

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.

Photo: S'mores

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.

Tricia Rhynold's photo.Tricia Rhynold's photo.

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!

HEART

Love Trish.

#autismontario #asd #problembehaviour

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I think its working!

On the eve of our third walk for Autism Speaks Canada, I am reflecting on how drastically things have changed for us.  From a slight 5 yr old who could not speak at all to a taller, skinnier 6 yr old who has his name in lights in the dictionary next to echolalia.  Most often what he says makes no sense and is in the wrong context but he is trying that’s what counts.  Timothy takes risperidal now.  Since we received diagnosis several years ago, I had vowed not to be one of those Moms….those Moms who medicated their kids…with proper therapies and discipline it would all work itself out…right?  No.  I was ignorant.  Judgemental.  I was wrong.  I am now proudly one of those Moms. The guilt is gone.  Cause you know what?  I think its working.  His outbursts are less often and less violent.  The dose may need a tweaking eventually but there is a change. 

We are cautiously optimistic because its what we are used to…the constant cycling of behaviours.  Don’t get too comfortable where you are Ma and Pa cause the winds change quickly!  What works one day, does not the next- something I”m certain others with children on the spectrum experience.

So tomorrow we walk.  We walk for awareness, we walk for acceptance.  One day we will be gone and Timothy will be here.  We hope he has friends.  We hope he is understood.  Most of all we hope he is more than just autism.  He is Timothy and he just happens to have autism.

Love Trish.

HEART

The cup feels half empty

And I want it to be half full.  Timothy has become an all encompassing tornado and I don’t feel equipped to take care of him when he is this way. He is irritable and frustrated and becoming aggressive towards myself and other people.  I can’t allow it to continue. I have two other children who I feel I am neglecting.  I am irritable, I am emotional, I can’t sleep.  I am not the Mom I want to be. 

So I (we) made a decision to try medication.  Timothy will start it today and I am a ball of nerves.  I know in my heart he needs to try it and yet I am questioning the decision.  As I write this, I am validating myself.  I can’t take him out alone anymore.  We have become isolated in our home. 

Its almost as though he knows.  It breaks my heart.  Yesterday he was good as gold.  I thought, what am I doing?  Why can’t I handle this, as he chirped and played last night.  Then the screaming began again this morning.  The constant slamming of doors, hitting walls and striking out.  Twenty hours of IBI therapy per week and yes, he has definitely improved, but not enough.  My child needs help and I am his only advocate.  The storm inside his head needs to calm.  If I can’t be 100% then I am no good to him.  We need to do better.  But we are exhausted.  Laying a whole lot of hope on this folks.  Everything I’ve got. 

A happy picture from yesterday with the sign he took from program.  He loves the balloons on it and its gone everywhere with him including his bed!

balloonsberky

Love Trish.

HEART

I didn’t see that in the manual

When we all “signed up” as parents there should have been a handbook or a course, no?  Cause if there’s something I missed back then I’d like to sign up.  Sigh.  Now that the days are becoming longer; which are truly an ASD’s parent nightmare (“its not dark, therefore I can’t sleep, its not time yet) life has slowed just a touch.

The “rules” still apply in Timothy’s life and it doesn’t matter if its a holiday, weekend, younameit, we follow them.  Or pay the price.  Wake up at 7 (after being up several times through the night), have breakfast.  Get dressed for therapy or for school.  Be there for 9, stay until 3pm.  Come home.  Eat.  Prepare for swimming or another therapy session from 315-515 and 5-7 swim.  Come home.  Bath.  Computer.  Bed.  Trust me when I say we cannot deviate from the routine as hell will surely ensue.  I think this is why vacation doesn’t work with Timothy.  There are no rules.  No structure- which may be wonderful for the rest of us- but tortuous to him.

Today is a good day.  He seems to be enjoying a little downtime and boy am I as well.  I realized this morning I haven’t told you all how wonderful last weekend was!  We have had a terrible flu running through our house since Sunday night.  Trying to return rental items from the fundraiser while desperately trying not to vomit in the store or poop your pants on the way home.  Sound fun?  Yep.

Last Saturday was Team Timothy Fundraiser @ TB Costain CC.    Regardless of numbers (about 100?) we had an excellent day and I consider it a huge success regardless of whether we made $10 or $10000…….money is still coming in slowly with one more event tomorrow:

Team Timothy 31 Fundraiser

But we have surpassed $1000 and I am thrilled.  We are so thankful for the help of friends, family and local businesses who I will link at the bottom of my blog- please have a look.  Couldn’t have done it without you all out there in internetland!  Thank you.

I am working on the thank you cards as time will allow today and doing my best to get them out to you all shortly.

Every waking day that passes has become purposeful.  When I am broken and feel like I can’t make it another day, my husband reminds me that we are in this together and maybe forever.  We are IT for Timothy.  Perhaps for the rest of our lives.  This has been a cause of great stress and heartache for me as Timothy grows taller and is becoming more aggressive.  Sometimes I don’t like him.  I love him, always and more than myself but God knows some days I don’t like him.  That was real hard to type.  I hope you reading this are not getting the wrong impression of me.  I am a fighter and will fight to the end for my son and my other children but this is a journey of honesty.  Take it as you want.

As for me, today is another day and I have already let go of yesterdays hurt.  We will soldier on and continue to do the best we can and give all we have to give.

Forgot to mention how awesome it was to meet some of you in real life last weekend!  Many approached me, some with ASD, some parents of ASD and offered words of encouragement and hope.  Lots of tears, lots of laughs and surely something we will do again.  Bigger, better and improved!  Just like me!  (except the bigger part)

Love Trish.

HEART

Some pictures from our fundraiser:

10372791_253216931550432_4413503813751746950_nfiretruck

Special thanks to Jake Rhynold, Deb and Chad Crooks, Graham Rhynold, Tim, Sarah, Alysha and Chelsea Klein, Jared, Stephanie Suggitt, Ashley Hudson, Melanie McDermott, Michelle, Jennifer Vanderploeg, Candace, Dana and Rick Tremblay, Melody Spear, Sherry Anderson Eacrett, Kari Pattinson, Nicky Paniccia Gayle Spear, Brandi Butler, Melissa Myke Levesque, Lilo from SC.

Businesses that donated and Sponsors of prizes: The Keg, Golf North, Dairee Delight, The Little Cheesecake Truck, Echo Bowl, Twin Valley Zoo, Bingemans, Lazermania, Dueys, Forgetmenot, Parklyn Photography, The Cake Place, Kneaded Care, Odyssey Spa, Kirstens Back Porch, Crockadoodle, Tim Hortons, Starbucks, Beyond the batter, Purity Life, EG Elliott and Sons Meats, Amy Csordas of Twinkle Cheeks Artistry, 31 by Summer McFalls, The Pink Pineapple Boutique,Cindy Smith, Marcy Waud, Cynthia and Richard Plouffe.

~Pls message me if I’ve forgotten you, going by memory it was not intentional!