I am just me.

I am a Mom of three, tired, frustrated sometimes funny……I am just ME.  I live in AWE(tism) of my wee boy Timothy.

Life is never dull, often screaming, crying and meltdowns in the back ground,

How do you do it, you say, you must be SUPER human you say!  All I can do is reply,  I am just me.

Its not easy, its not, having Timbit distraught, over something so mundane, so simple to us neuroTYPS-

A sock that feels so unright, a shirt collar too tight, that he throws his body to the floor and becomes UNHINGED once more….

God gave me three blessings, perhaps one in disguise;

To teach me to live life each day to the fullest, find beauty where others cannot see,

To slow down and appreciate,

I am just me. I am a Mom of three, tired, frustrated sometimes funny……I am just ME. 

Pizza and popcorn

Those are food groups aren’t they?  According to the boy they are.

Olive juice.  Remember when  you were a kid and saying “olive juice” made it look like you were saying “I love you?”  Funny.  Not sure what made me think of that. The other day I realized we passed our three year anniversary of the AUTISM doormat…so much has changed.  So allow me if you will, to reflect on what I have learned……

1.  Autism does not define you, it is simply a characteristic.  It makes Timothy a quirky, funny, silly and smart little person.  An after thought.  Not a prelude.  (bookmark that thought).

2.  I am a much stronger person than I thought.  Receiving a diagnosis like autism can be devastating.   For a long time I was in a deep dark place.  Only time, knowledge and empowerment can lift you up and a belief of a higher power, a bigger meaning. Your child will not be who you thought he would be.  He will be much better.  Trust me on this.

3.  I will not be ashamed of my child or allow others to make me feel that way.  EVER.  I am proud, prouder than ever of my son and will not hang my head in embarassment again.  Different is ok.  Different is amazing and it is beautiful.

Off my soapbox now.   If you haven’t caught my drift yet, what I’m trying to say is that YOU are your child’s biggest and best ally.  Stand up straight, shoulders back and face forward.  Its going to be a tough, hard and bumpy road.  But the view along the way is priceless.

Six months before diagnosis.

 

2 years, 10 months after diagnosis.

I’m so sorry to hear that..

Said the woman on the phone at Revenue Canada when I told her my son has non verbal autism.  I’m sure she was trying to be polite or diplomatic or something?  But really, he’s not dying? 

Good grief.  Instead, I replied “Its fine.  He’s fine.  We’re fine.  Thank you.”  Carry on. Deep breath, big girl panties on.  This morning was a bit of a challenge.  Timothy woke up as per usual; which means, dragging his huge blanket down the stairs headed straight for the furby.  Its become his latest favourite toy.  It may find its way to the bottom of the toy box today…just sayin…

I changed his diaper, warmed his milk and got the other two kids off to school.  This is where it got hairy.  Jake (aka Timmy Daddy) got home from work and we prepared to get Timothy off to school.  He started hitting and kicking at Dad.  Wouldn’t walk.  Bus driver impatiently waiting outside.  She has seen this before.  It happens a couple times a month.  But Daddy was tired so he waved the bus onward and waited for the storm (Timmy) to pass.  It lasted another thirty minutes.  For once I was spared from his aggression but it didn’t make it any easier to watch.  Where was this section in the parenting manual?

Dad took him to school and I started on breakfast for the two of us.  Cause bacon fixes everything right?!

Good riddance January

Wish I could say this year started off with a bang (in a good super awesome champagne cork kinda way) but no it surrrre did not.

Never been a big fan of January, or winter in entirety.  We are going a little stir crazy.  Its been a struggle with Timothy’s new schedule and both of us ‘rents working shifts.  Then it got really hairy when Rec swimming came up which looked like this:  School 9-3, wait for bus at 310 and drive to IBI therapy 315-515.  Pick up and drive to Rec swim until 7 pm.  Pick up and take miserable, hungry and tired kid home to bed.  Wake up in the morning, rinse and repeat.  We had a bit of a scare a few weeks ago with one of Timothy’s school’s connected ECE’s arrested for child molestation.  Errr can someone pass the xanax please?  We are pretty sure our school had no specific dealings with this individual so hopefully there was only one victim(not to minimize).

Thursday was a pretty craptastic day as well.  Timothy has school Tuesdays and Thursdays and he is usually happy to go.  This day was no exception.  I worked night shift this week so off to bed I went while the husband headed over for the results of Timothy’s IQ testing with the psychometrist @ Lansdowne.  I got up for Timothy’s bus and off he gets, happy as a clam.  We were not even through the door to hear the phone ringing and (da da daaaaa) it was school. 

On a side note, if you have ANY autism tenure you will know that anytime the school calls home its not good.  Today was no exception.  Timothy was banging his head off of the floor during a tantrum and one of the EA’s leaned over him to put her hand underneath his head to minimize the impact.  Well, I guess it was a little too close for the boy.  He kicked her square between the eyes.  Jesus take the wheel.  Poor woman had to leave the classroom and get some ice.  Mental note to up all end of the year gifts.

But seriously, I felt terrible.  Really really terrible.  Its not a nice feeling to hear things like that about your kid.  Nobody does.  So that was my first cry of the day.  Second one came a few minutes later when the husband texted me about regarding the results of the IQ testing.  Timothy scored 1’s and less than 1’s.  Neuro-typical kids typically score 4’s.  This was devastating.  In the back of my mind I knew this is what we would hear but a teeny tiny part of me still had hope that it wouldn’t be so.  I did the only thing I could think of.  I called Mom.  I could barely get the words out and then I bawled like a small child.  I am tearing up writing this even now. 

Its not the end of the world.  Nothing has changed.  Just an ugly reminder that, hey- autism sucks sometimes!  But days, weeks and months like this only make me more resilient and determined to give this boy the best life I can.

So I  mop up my face before the other kids arrive home from school as I don’t want to explain to them why I’m upset today.  Not now.  My worries shouldn’t be theirs- not today anyway.

I hate to end this post on a negative so instead I will do it on a shameless brag.  Timothy can say his complete name and his age when asked!  I’m showing everyone.  P-R-O-U-D.  It may present a small challenge in a couple of months when he turns 6 but we will worry about that later. 

For your viewing (and listening) pleasure……..

 

 Trish.

Happy New Year!

I am happy to say that we survived the holidays of 2013!

Not the usual I can’t stand my relatives-turkey is dry-Uncle Norm’s breath is terrible-vomit on my favorite pumps around here….more like will Timothy sit at the table for any length of time or will he sit in the living room and scream like last year?  Or will he allow family around him?  Little bit of both.  Since I worked the holidays this year (life as a nurse gotta love it), we had our get-to-gethers in the off peak times.  December 23rd my brother and his family and also my Dad joined us for a meal and exchange of gifts for the kids.

Timothy’s behaviour was over the top horrible.  I was at my wits end with him and he is my own child who I am used to screaming and making odd noises.  He screamed when someone tried to talk to him, get him something or came near him.  He refused to eat or be touched.  Even his favourite toys and movies did not give us any reprieve.  Try explaining this to family that doesn’t see him often…even though they “get it” they really don’t and it hurts to see him so stressed…too many people + too close = can’t wait for the holidays to be over.

When things at home are good they are really good.  This doesn’t mean they aren’t peppered with tantrums and screaming.  Those things are a part of our lives and we are thankful when they are lessened and things in Timothy’s little body are at peace.  He did really enjoy his gifts this year which brought us SO much joy.  This is hopeful.  Not the gift in itself but the awareness that the gift brings.  The holiday.  The fact that something special is happening.

Awareness is big in this house.  It has become a teaching tool and not just for autism, but for any other “exceptionality”.  Looking different, acting different, being different.  So often we take for granted having things.  Ability to speak, to walk, to talk.

How can a child who cannot talk be my greatest teacher in life?  Working so hard for a reward so tiny.  A rare hug, a smile, a gaze that speaks volumes.  A 5 going on 6 year old that tells me he loves me with his eyes every day.  And that my friends, is worth the price of admission any day.

Patience for the holidays~

I wanted to get a quick entry done before Christmas and its taken me days to get sat down in front of the computer.  Work, IBI and school in general winding down has taken its toll on our lives and sleeping has become a novelty around here.

Amidst the chaos there is beauty if I take time to breathe it in.  Timothy has been doing well at IBI with less aggression but now is tired and frustrated at school.  His bouts of aggression at home have increased due to him (and us!) being tired of  always on the go go go.  In fact I am currently nursing a sore nose as I type but that is besides the point.  I tell myself he doesn’t mean it, and its because of his frustration, not really directed at us but yet, it leaves me with a dull ache inside my chest.  These kids (all of them) need me and if I can be strong so can they.

Christmas here means a pretty tree and neat decorations that light up and play music.  Its another day to Timothy-one’s meaning that I hope he can absorb eventually.  He’s not interested in the gifts or tearing off the paper or really even the surprise inside.  I hope by sharing this post, I can inspire people to remember to be kind this holiday season.  Not everyone you see “gets” Christmas or can build snowmen or enjoy a parade.  Its damn hard for some.  It brings tears and frustration.  Sadness to families that are celebrating in the only way they can.  That child you see melting down at Walmart or the grocery store may not necessarily be acting out, but responding to stress in the only way they know how to.  I will get off my soapbox now.  Holidays are what you make them. 

Mine is about gratitude.  Alot of it.  I know things could be worse as someone callously said to me once…but there is a ring of truth to it.  We are blessed with three beautiful children and all of them teach me things every. single. day.  No regrets here, not one.

Merry Christmas to each and every one of you reading this!  Thank you so much for your support this year it means the world to me.

 

Trish. xoxo

“Isn’t there anyone who knows what Christmas is about?”

We watched Charlie Brown the other night.  Takes me back to my childhood and I’m happy to continue the tradition with my own children.

“Skyboobs some milk!”  Timothy’s pet name for Skylar hahaha, makes me laugh every time I hear it.  Its kind of a Christmas miracle to hear him request anything…its kind of a BIG deal.  Any time I look back to how far he(we) have come I am amazed.

I just completed and dropped off the Incontinence Grant forms to our pediatrician as Timothy is getting into a new age category:6-19 yrs.  His grant amount will go up (hopefully) next year, although I’m not quite sure even what diapers you go to after you outsize Huggies/Pampers pull ups?  Guess soon we will find out.  The young lad is up to about forty pounds these days and TALL.  What he eats right now is popcorn and a lot of it.  We go through a big box of orville at least per week.  Has to be in the microwave “bowl” packaging, not a plastic bowl, heaven forbid.

IBI has begun and our lives have become even crazier.  Timothy goes to school Tuesdays and Thursdays and to IBI Monday, Wednesday and Fridays 9-1230 which has become a bit of a   scheduling nightmare.  Thankfully we have a wonderful daycare provider who helps out a lot with pick ups. 

He started out with a bit of a set back.  The staff found him quite aggressive and to my dismay things were scaled back from 9-3 to 9-1230.  I was scared.  IBI was “it”.  If he can’t do it then now what?  Thankfully they are tolerant at therapy and reassured us that he wouldn’t be “kicked out” things would just be slowed down.  Timothy is tired but getting used to this new schedule.  It is WORK.  So that’s what we call it.  When he’s finished “work” we go to McDonalds for french fries.  Its become a routine.  His therapists are surprised and excited to tell us that Timothy has many skills!

I feel peace this December.  I feel happiness.  My life isn’t what I pictured it to be, its even better.