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

HEART

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

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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.

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HEART

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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.

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HEART Love Trish.

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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…….

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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.

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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

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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…….

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

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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.

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

HEART

 

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~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

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