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 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


More good things where that came from........

Happy Sunday!

Pleased to announce the pairing of................................


  (drumroll 



                   




AND


150

Presenting~ FROZEN MySize Dolls Raffle!

FROZEN RAFFLE to support TBOT and HSP!


Now including bonus prizes
~Epicure $40 credit donated by Kari Pattinson shipped or delivered to you free of cost
http://www.karipattinson.myepicure.com/

~ Stainless steel necklace donated by Project Timothy: Piece by Piece (AKA Yours Truly)
http://thebookoftimothy.blogspot.ca/p/project-timothy-october-winner-leroy.html

~ 2015 Happy Soul Project calendar and kids t-shirt donated by Tara McCallan of Happy Soul Project (if you're not following her yet, you should be)
http://www.happysoulproject.com/2014/04/kick-cancers-arse-capes.html


 

Only $5 per entry and your five bucks will support all of these amazing projects..............read on friends, read on.........

- Brantford and area special needs support groups
~Kick cancer's arse capes
-Project Timothy: piece by piece
~Different is beautiful campaign by Happy Soul Project

And so much more!

Prizes will be drawn Wednesday, December 10th @ 7pm and delivered to winners just in time for Christmas.

We really need your help out there guys....

From Tara @ Happy Soul Project~


"All money for fundraiser will be donated to Happy Soul Project's Kick-It-Capes...A campaign in which we send kids facing any type of serious illness or vast difference that needs an extra dose of super-hero strength a special personalized cape and care package."


Help us to INSPIRE CHANGE five dollars at a time.............




tHe BoOk Of TiMoThY oN fAcEbOoK

HaPpY sOuL pRoJeCt On FaCeBoOk

GoFundMe/ Frozen MySize Doll raffle

So in order to collect funds to put some of my ideas into action, I need moola first.

If you can't help (which I understand) please share share share away!

Please check out the below links to purchase a raffle ticket for $5 to win this fabulous prize valued @ $119.98 USD:

http://www.gofundme.com/hskogo

dolls2

My top five tips to get through the holidays with sanity intact~

santa

Its that time of year again….Christmas decorations, family and friends…jam packed malls and parades…people in your personal space….a sensory sensitive child’s nightmare! (and their parents)

Run!  Hide if you can and bury your head in the turkey’s behind if you must…or read about my tried and true tips learned through sweat, tears and trial and error.

5)  Breathe.  Its thirty days, you can do almost anything for thirty days if you have to.

4)  Use the small doses rule.  Short bursts of Christmas/people/noise a day.  One hour is usually the max before the boy’s ready to implode (me too).

3.5)  Wine or specially infused egg nog!

3)  Introduce pictures of the holiday type creatures and characters weeks in advance.  Preparation people!  Its worth the time.

2)  Be aware of the 5 senses~ you child will be hypersensitive so be flexible.  If you don’t sit on Santa’s knee this year, oh well….the elves look scary or weird who cares…Grandpa’s breath stinks….you get where I’m going here.

1.5)  There's always next year.................

1)  Your Christmas is your Christmas is your Christmas.  There is no right or wrong way to celebrate the holidays.  They will be what you make of them.  So make them happy whatever you end up doing.

support

HEART

tHe BoOk Of TiMoThY bLoG

fAcEbOoK

The thank you I never got to say….

Its a long list I”m not gonna lie peeps.

When I’m in the zone (you know that eye-twitching-glazed over one) when the boy is having a tantrum on the floor in the middle of the therapy lobby…..shins getting a mean beating from his furious kicks~ thank you to the parents that don’t stare.  Thank you for your supportive silence and thank you for not commenting on my child’s behaviour.

Thanks to the Tim’s cashier who didn’t laugh at my son who stripped in front of the donut display because well donuts and being in your skivvies go together right?

Thanks to the (many) therapists that take punches, scratches and kicks from my child without blinking an eye.  Thank you for your supportive silence while I apologize in tears like a blubbering idiot.

Thank you various drive thrus for not questioning my use of sunglasses at all hours of the night because my eyes are puffy and red from crying about things I cannot change.

Thank you to the doctor who diagnosed my son.  I can’t say I felt thankful that day years ago, but I realize you gave us a gift that I wouldn’t dream of re-gifting. 

Thank you to my friends and family for watching my endless videos of Timothy saying actual words and listening to me gush.  Thanks for not saying you have already seen it five times.

Thank you to the respite programs for giving us Moms and Dads a break.  For understanding and not making me feel guilty for actually using the hours to do something for myself or with the other kids.

Thank you to my daycare provider.  Not only do you put up with me, you are the only one willing to take on my special needs kid….(just kidding)  I mean, who really wants to change diapers for a 6 year old?  You do it anyway.  Thank you for that.

Thank you to Timothy’s Daddy.  Autism has changed us both and I thank you for being open minded and always accepting, never ashamed.

Finally, thank you to my son.   You are the greatest teacher I have known in this life and you are only six years old.  You are smart and so amazing.  You have opened my eyes to so many new and wonderful things.  Without you, I wouldn’t be me.  I will spend every day I have left on this earth thanking you for that.

2014-08-07 22.00.44

HEART Love Trish.

tHeBoOkOfTiMoThY oN fAcEbOoK

Hi all! Just a quick update to let you know I will be away from the blog from today (November 5) until November 14th.


Please feel free to send an email (just click here!) with any comments or questions and I will be sure to get back to you!


The day I decided to say screw it….and never looked back.

Once upon a time, a girl named Trish married her best friend Jake.  It was a beautiful affair; nothing fancy, just right.  I’d had dreams of that day as a little girl marrying the man of my dreams, and being carried over the threshold of our pretty little home (don’t forget the white picket fence)……..we would have two children, a boy and a girl….that’s where it gets interesting, cause my life went nothing as  I planned it to…not even close.

  Yes I got married but forgot to mention that two little girls of ours were in the wedding party.  Here they are pleased as punch to get all dolled up for the day…….

DSCF1206

Gasp……I haven’t even got to the most sordid part of all, don’t stop reading yet.  Two years later after a very healthy pregnancy, our third child, Timothy was born.  Husband check; girl(s) check;boy; check….not the family of four I had imagined but meh I can improvise, I thought.  But fate was fickle and that was not to be.  Baby Timothy was acting “strangely”, not neuro-typically.

The cards had been dealt, the dealer(everyone else) had a royal flush….and I?  Skunked.  Shit cards, ripped off, or so I thought. Self pity was my best friend for a while, I denied the truth for months, years even…I thought if I cried enough tears to fill an ocean, ignored the diagnosis, and tried real hard, I could fix him.  I thought if I dress him really cute, people may not notice his differences and give him a chance…wryly I look back with humor cause of course they noticed..  Timothy has non verbal autism and is low functioning.  Duh!

In those early days I tried to be SuperMom.  I watched youtube vids on Martha Stewart Living (before she went to jail).  I cooked everything from scratch~ if there was a recipe to cure autism, I cooked it.  I cleaned.  I did laundry and I went to work on weekends.  I missed so many opportunities to have fun with my children and live life because I lived with fog over my eyes for too long trying to be the perfect Mom and wife.  One day not long ago, I had an epiphany.  Screw it.

I’m no superwoman and I won’t pretend to be anymore.  I’m not a perfect or even really good Mom.  I yell when I’m frustrated and cuss when I’m annoyed.  I like a cold beer on a really hot day.  I burp and fart when I’m alone (and sometimes when I’m not!)  Hey, everybody poops-you know how it goes...
Bottom line is this: My kids feel loved.  They know they matter.

Screw the rest.

Its humble pie I eat now.  When your kid eats nothing-not a little-literally nothing whatsoever; you will buy him McDonalds fries every day if that’s what it takes to get him to eat.  So that’s what we do.  Yes, I’ve heard the “they won’t starve, will eat when they are hungry bit” and I”m here to tell you NO HE WON’T.  That rule doesn’t apply to my son, or those with extreme sensory aversions. He was mere days from being hospitalized back then.  I can’t say what he feels or what he knows, but back then, in those scary first months, he didn’t know hunger.  We lived in fear.  If Timothy had a cracker or a donut to eat that day (that was it) that was a success and I could let myself sleep that night.  I couldn’t say the words I can freely say now.

Timothy has autism.

We eat processed foods sometimes.  Frozen food. I do the laundry whenever I have time.  Same with cleaning.  I rarely apologize anymore for my often messy abode and don’t really care.

Those things don’t matter, really, in the scheme of things.

Its taken me a long freaking time to realize what does matter. Family.  Love.  Accepting myself and others for how imperfectly perfect they are. Living for the moment.

I’m not special.  Kids like him aren’t born to special people.  They are born to teach us.  They make us better just to know them.  They make better parents, better brothers and better sisters.  We are the lucky ones and I truly mean that.

Timothy is teaching me how to live in his world, he was all along.  I just missed the clues. 

To the newly “ausome” parents, stick with it.  Don’t get lost in the diagnosis and waste precious opportunities to learn about your child like I did.  If I had to look back, its my biggest regret.

HEART

Love and things,

Trish.

My kid is the one trying to get inside your house this Hallowe’en…..

It happens every year.

After ALOT of prep and apt timing on our part of getting the costume on (and feeling right) ; sometimes only half a costume actually gets worn.  There are no wigs, masks or make up.  Usually our prep includes several weeks of practice trick or treating at both our home and therapy.  Due to the fact that in the past Timothy had absolutely no language, there was a bit of explaining at every door by Dad.  “Timothy has autism and doesn’t use words” that gravitated to just a loud “thank you” to eventually just a wave and smile if we got far enough.  By far enough, I mean around the block without a meltdown.

While this year he has gained the ability to actually SAY “Trick or treat” most of the time; he lacks the understanding and social graces of the average grade one kid.  Autism’s kinda like that.

Tricia Rhynold's photo.

So this year, I am warning all of y’all in West Brant; that you may have a home intruder on your hands…He is about 3 foot 11 in tall, 50 lbs and will be dressed as a charming little Batman wannabe, who may or may not be wearing a mask.  He will be excited and he will be loud.  He may try to run inside your house but please have patience he means no harm.   His Daddy is there and will be watching closely nearby trying to make his night as successful as possible.  Cause Hallowe’en should be enjoyed by all kids….autism, down syndrome, leukemia, cerebral palsy, walking or wheelchair;  whatever their exceptionality may be.  They are ALL kids.  Please be kind and treat them the same.  Different is not wrong or weird.  Its just different.

Have a safe and Happy Hallowe’en!

HEART

tHe BoOk Of TiMoThY

bLoG

tHeBoOkOfTiMoThY oN fAcEbOoK

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…….

friesberk

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

tinkerberk

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.

momnberk

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

HEART

 

tHe BoOk Of TiMoThY oN fAcEbOoK

tHe BoOk Of TiMoThY bLoG



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

Ten things being a special needs parent has taught me~

10.  Keeping my judgey panties in check.  I can’t tell you how many times Timothy and I have been victims of this and until it happened to us I had no idea how it felt.  It SUCKS people.  Please don’t stare at my child when he is lying on the floor in Walmart or flapping at the lunchmeat in the deli case at Zehrs.

9.  Keep your parenting advice to yourself.  For reals!  9 times out of 10 that Mom and/or Dad are doing the best damn job they can.  They have taken hundreds of hours of “Parent Learning” courses and spend every spare minute working with that kid.  The wringer?  Been through it.  Likely they have heard what you have to say already several times.  Its offensive so please don’t.  (I say this with love).

8. Live for the moment.  Those dishes?  They’re not going anywhere.  Neither is the laundry.  As long as you have clean unders for the day you’re good.  Clean house will have to wait cause my kid won’t.  Let it go.

7. The meaning of ABA, IEP, IBI, TAC, OT, PT and the principal’s phone number off by heart.  (Insert eye roll here please)

6.  The short bus is awesome!  It comes right to our drive way = less work for me.  Roll on short bus, roll on.  You rule.

5.  Milestones are overrated and not made for every kid.  Hell, Timothy still wears diapers and he is 6.5 years old.  He just started to feed himself this year with a spoon.  We had a party!  Make up your own rules and don’t conform to society’s.  You’ll be so glad you did.

4.  Learning to appreciate the little things.  Peeing on the toilet warrants a trip to McDonalds for fries around these parts.  When my son said “I love you” for the first time at 5 years old I wept with joy and gratitude.

3.  How awesome respite care is.  We are lucky enough to score 6.75 hours of one on one for Timothy a month.  Yes, I love him but   having a shower alone is a gift from above!

2.  Stop taking myself so seriously.  I live in sweats.  I rarely have   time to put on make up, so brushed teeth and clean hair is what it is.  If there’s time to sleep and clean the house its a special day.  I’ve lost friends along the way but made way more.

1.  Don’t be scared of different.  Get to know different.  You may be surprised at how incredibly awesome different is.  I know I was.

Tricia Rhynold's photo.

Cheers.

Trish.

HEART

tHe BoOk Of TiMoThY

tHe BoOk Of TiMoThY oN fAcEbOoK

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