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.

Some pictures from our fundraiser:

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!

What’s a disability to you?

What’s it look like?  Is it ugly?  Is it deformed?  Is it always obvious?  Heck no.  Many of you who know me in real life know that I have a mental health back ground and although this blog is not about me, sometimes it intertwines with autism.  Today it does.  Looking at my child, you may think hey, he looks like a normal boy!

(well at least I think so and even a little bit cute)

How about this girl?  Does she look different?

The point I”m trying to make here is that not all disabilities are OBVIOUS.  Yeah, my son has autism.  Its pretty bad.  He also has a curious mind and a loving heart.  Is that tattooed on his forehead?  Nah.  The girl above?  She has debilitating social anxiety.  Obvious?  No way.  But she looks “normal” so her life must be perfect and she’s pretty so it must be pretty awesome to be her.

When we were on vacation a few weeks ago and my son was having a meltdown, several gawkers felt it their place to make comments to my poor husband about “teaching him respect” yadda yadda yadda.  I didn’t know this happened until much later, but had I been there in the moment and heard I would have lost my freaking mind.  How about you be respectful and mind your own business?  Not all differences are obvious.  On this same vacation my kid pointed at a bird for the first time.  When I say this, I mean he pointed at something for the first time.  Pretty proud moment for us.  I do realize that on the developmental level, pointing is about at a 9 month old baby’s level.  But for my 6 yr old Timothy?  Amazing.  Beautiful.  A definite day to mark in the books.

Another pretty cool thing is happening this weekend if you happen to be around our area. Our family is hosting a fundraiser to raise funds for Autism locally.  Click on the link below for more info and address please:

Team Timothy Family Fundraiser

Also wanted to note, my blog has found a new home on Facebook and also on Twitter!  Acceptance is growing and I”m pleased to be a part of it.

tHeBoOkOfTiMoThY

Love to you all,

Trish.

Mums the word

Happy Mother’s Day all!

I wasn’t sure how this post was going to come out as I am torn between reminiscing about past Mother’s days filled with sorrow and the positivity I feel most days now.  Pleading in my mind for just a little eye contact and my son to say “MOM” or “I love you”.  Sounds easy right?  But hasn’t happened in the last six years.  I’m still hopeful that it will happen.  Morning snuggles with have to do (and they do) for this year.

(Pardon the bleary eyes)

Being a Mom is a hard job whether you have NT’s (neurotypical kids) or SN (special needs). Its messy. Often you work 24 hours a day with no break…often without a thank you.  The job has (in my case) taken your girlish figure and messed with that great hair you used to have.  You can deal with workplace violence and harassment from the Boss….and yet you still love.  The Boss can be demanding and pile on the work, and yet you still show up with your punch card every day. Sometimes you want to tell the Boss to shove it, and sometimes you do…..BUT….. You love the Boss.  You love your job.  And you wouldn’t trade it for the world. 

I received a bonus today at work.  I was served a wonderful breakfast in bed by a semi-naked waiter who just happened to be my daughter.  My chef was my older daughter.  Never in my life have I felt so special.  Handmade cards and Justin Bieber wrapped gifts.  Le sigh.

Despite the bumpy road we have travelled the past five or so years, I still love my job.  I didn’t ask for this particular position, and yet I wouldn’t trade my SN child for a NT one.  Yes, I’ll admit, I have sometimes wondered (and wished) what it would be like to have a NT child.  How much easier would my life be?  Probably tons.  I’d likely have less gray hair (maybe?) and be able to take my whole family out to a restaurant to eat.  Gasp.  But the job satisfaction would be lower.  When Timothy finally  (thinking positively here) outgrows his diapers, I will have the biggest poop party Brantford has ever seen!  When he says, “I love you Mom” it will mean the world to me.  Yup.  It makes me sad to think that Timothy wouldn’t make his funny sounds or expressions if he was “normal”.  Without his funny quirks he wouldn’t be Timothy.  I am prouder every day to call him my son.  He wasn’t the son I imagined I would have that could play hockey or on a baseball team.  But he IS a boy who is completely unique and these differences are what make him who he is.

Today, I love my job.

Trish.

Shake, rattle n roll

I’ve had a lot rattling around in this brain (?) of mine these past weeks.  Trying to summarize my thoughts of the Great Cardstock of 2014……our road trip to Florida with an ASD kid….Most often I feel like I ride the roller coaster of life and for a month or so we went up up up so high and so far.  Timothy was in a good(well, better) cycle of behaviour which means he hits less often and listens a little better.  He seems happier in his skin when he is like this and less troubled…which makes me happy and less troubled.  Chicken or the egg, I guess.

First order of business.  So friends and family we topped 700 cards!  How unbelievable is that!  I am so pleased for Timothy.  My original plan of making a scrapbook is not really going to work now…seventy scrapbooks?   What a delicious problem to have….

I also need to thank Jamie of Parklyn Photography for shooting Timothy for FREE as a gift to our family.

Tuesday before we left for vacation, Timothy was invited to Robert Little PS in Acton by a wonderful teacher by the name of Mrs. Jeddore.  He was invited to visit the classroom of some children who made many beautiful birthday cards for him. He was treated to some pretty awesome gifts and even more cards! It was a little rough at first (doors again) and over stimulation but we worked it out thankfully and ended the visit with some play time outside.  I have never seen such well behaved kindergarten children!  Thanks again for having us.  We are really so very grateful.

Off we went April 24 by van to Clermont, Florida.  Anyone care to know what that was like?  Surprisingly enough, the car ride not terrible.  We break frequently and spend several nights in hotels.  However, the rest of the trip, besides swimming was not great for Timothy.  His recent obsession with doors (any doors) has made for many safety concerns (and headaches) for us.  Thankfully the swimming pool was fenced and child proof.  Did we eat at any restaurants?  Nope.  Did he make it to Universal Studios?  Nope.

If you were keenly reading above-you notice I said Timothy was in a good cycle….well that didn’t last unfortunately.  His behaviour was pretty terrible at least 50% of the time which meant any family activities were slim to nil.  Every meal we ate had to incorporate something for him which meant, yep, pizza, PBnJ and McDonalds fries…….if I see another fry any time soon I will hurl….just sayin’…

Was this any surprise to us?  Not really.  I guess I was more hopeful than anything that he would be able to tolerate a bit more.  It just reminds me how unpredictable he can be.  So it leaves me wondering, is it okay to leave him with family next time?  My heart feels heavy to think it, but the rest of our family matters too.  Just like everything else in our lives, its up in the air…to be decided by Timothy when/if he is ready.

So back to real life we go- two eldest in school and Timothy back to IBI.  Jake and I back to work Monday.  It was really wonderful to have my family all together at once for such a long period of time, don’t get me wrong, I would not trade any second of it.  Not one.

Someone once asked me if I will share my blog with him one day, and the answer is YES of course.  When he is able to sit still for a few seconds, I will read it to him.  And if he wants me to stop writing, I will.  I will explain to him how important it was for me to write, to share our journey together and how much he has progressed.  How proud of him I am.  As proud of him as I am of my girls.

These memories will be tucked away in a corner of my heart forever.  Back on the rollercoaster we go.  All I can hope for is more ups than downs….and so far so good.

Trish.