Five dollar book; million dollar smile

Originally published: February 5, 2012

Colt had an amazing week last week. Every day was filled with smiles and proud presentations of the ‘school/home communication book’ that they use to rat him out to us daily.  It’s usually filled with an outline of the challenges they faced through the day (his teachers) and not those he faced, however, this week was all sunshine and accolades.  He earned ‘free time’ several times daily (the motivational tool they use to help him successfully complete a task at his desk) and the reports were glowing from everyone.  He told me, proudly, that he treated his best friend Emily “like a princess” the entire week and he listened to his teachers without saying no!

Of course, he got tons of praise and all the hugs and kisses he could stand for trying so hard, but I thought that this week he deserved an extra treat.  I went to my favourite used bookstore – wow, I love that place…dusty shelves of books from floor to ceiling, shelves at all angles, crammed full on both sides.  The smell of the paper and the crushing feeling of being surrounded by all those words…its like a form of meditation to me.

The last time I had visited, Colt came along and spent a happy hour lolling on the floor and looking through dozens of kids books.  He found a handful of those old Garfield strip comic books, black and white printed on that soft gray paper and even though he couldn’t read many of the words, he LOVED those books.  I got him a few and he spent hours reading them and howling over some of the pictures…he still loves them now; takes them to bed and night and reads them with a flashlight under his covers.

I went back to the kids section, intent on buying him a new one, and went to work. Books in this place are shelved, mostly, but the overflow gets stacked on the floor, especially the kids books.  After 20 minutes of searching I was about to give up when this super-creepy guy in a black trench coat and black fedora came right up and sat on the floor beside me to thumb through the piles of Archie comic books next to where I was sitting.  He was practically in my lap so I scooted awkwardly away on my bum and knocked a pile of books over in my haste….and yep, you guessed it, Garfield comic book, right the bottom.  It was a nice, big, anniversary book in full colour and was in really good shape so I happily cashed out and smiled all the way to the sitter’s house to pick him up.

I gave him the book in the car with minimal fanfare, just told him how proud we are of him and what a great job he did that week and, let me tell you, that child went bananas 😀 He was SO excited when he saw it was Garfield he yelled “OH WOW MOM!!!!” (he almost never yells) and burst into happy giggles.  He started to read it immediately and wouldn’t even detach long enough to talk to me all the way home other than to announce,

“Oh mom!  I LOVE this book!”

He has come to tell me exactly how much he loves his new book at least three dozen times since Friday evening.  I’ll hear him talking away in the living room, then silence…uproarious laughter…footsteps as he comes running to report, with tears in his eyes from the laughter, that he LOVES his new book.  🙂  He’ll throw his arms around me and thank me for getting it for him, then runs back to read some more.

What an awesome kid he his.  I made his whole weekend with a second-hand book, given as a reward for being such a good boy all week.  *sigh*  I am one lucky mama.

 

 

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Blanc Mercredi

Wow – this is quite a trip, looking back through these years and seeing how eager I was to just keep everyone happy and not rock the boat in any way, shape or form.  Thank Heaven’s Dayne was assertive enough to get the job done while I was trying to keep everyone happy.  These battles with the school board raged on for years, but my perspective changed shortly after this period in time.  

Originally published: November 16, 2011

Grainne takes a deep breath inulin and lets it out.  Hears Colt saying:  “Okay Mommy.  Count to ten….c’mon, do it with me….Onnnnne, twoooooo, three…”
We had our first term meeting with Colt’s school.
*Wow the stress is just crashing around inside me*
I’ll give a little background here:  This is Colt’s third year in school.  We gave JK a miss as he was just not aware enough to be left on his own for ANY amount of time, and put him into kindergarten when he was 5.  We had an amazing teacher and things worked out well for him, as long as I stayed absolutely attentive to the school’s (and by proxy, Colt’s) needs.  I struggled through dozens of School Board members, specialists, doctors, psychologists, speech pathologists, neurologists, pediatricians – both behavioural and regular.  We had occupational therapists and physio set up for him; we handed that school every, single resource I could scrape together over the five years of his life and….?  They fought me every step of the way.
“Colt doesn’t meet the requirements for having an educational assistant in class with him.  We only allocate those to kids who can’t feed themselves or use the rest room unassisted.”  (bs! but, that was their stance).
Anyway…I won’t bore you with every battles along the way.  In the end, we had two great teachers in a row and Colt was given, and did very well on, his own Individual Education Plan.
This year.  *sigh*  This year we have a teacher who seems kind, but does everything exactly by the book.  She claims that because Colt’s IEP does not specifically outline the ‘accommodations’ that he requires, she can’t assist him.
…….  …….  ……. He’s AUTISTIC.  What do you mean you don’t know how to accommodate him?  Is there a language barrier I’m not seeing?  Maybe they don’t know what ‘accommodate’ means?
In response to our surprised/annoyed head-shaking, she whips out this paper and drops in on the table in front of us.  It was a test that was scribed for him (ahem… that would be accommodation? no?) by the science teacher.  He scored a zero on the test so a few questions came to mind.
How did he get zero?  His dad and I read over the questions:
1.  Define the word “habitat” and explain the differences between a fox’s and an elephant’s habitat.
Okay.  First, these are words on a page.  Colton references things visually in pictures (which is why there is a visual schedule…visual cues…visual prompts set up for him…again, is this not a fairly clear example of accommodation?)
“Did anyone change the information around for him so he might understand it?” I asked.
No.  The teacher wanted an ‘accurate’ test of how he was doing.  Ummm…well, since he can’t read yet…I’d suspect that he’s doing poorly, if graded against the regular curriculum.  !!!  He has an IEP.  I fought like a dog to get that for him, and now they just dismiss it, and contest it’s content.
So that’s my issue.  Not a huge deal.  Something that I can certainly direct from the sidelines to fix this little issue for my boy.  Then comes his father.  D, God love him, has a terrible time controlling his mouth when it comes to his son not getting what he needs.  He started asking question after question and the part-time EA and the teacher were stumbling all over themselves trying to answer.
“So, how does he usually take tests?”
“We help him.”
“So why didn’t he get help with this Science test?”
“We didn’t want to overstep the Science teacher.”   (ooh, crap, thinks Grainne.  THAT was not a good answer)
“I’m sorry?” says D, “You, as his EA, are supposed to be his voice!  You are supposed to make sure he is accommodated!”  (that word again…)
“But we don’t know how to do it….”  At this, 3 people in the room rolled their eyes (Principal, Psychometrist, ASD team lead) and the learning support teacher nearly jumped onto the table with her finger in Colt’s teacher’s face:
“I told you how to accommodate him!!!” Throwing the blame around.
Now, through this mêlée, D is looking back and forth and everyone and he held up his hand to shut the room up.
“Colt has an IEP and a part-time assistant.  You (to the EA) are supposed to be his voice.  You are supposed to help him!  Why is he not being helped?”
“(EA) spends as much time as possible with him through the day” was their reply.
“So.  He needs clearly needs a full-time assistant, like we’ve been asking from day one.    Let’s get that done right now.” Says D, opening up an entirely different can of worms right there on the table.
The School Board Rep nearly fell off her chair in excitement when the “Full time EA” battle was resurrected and I very nearly burst into tears.  Not again Pleeeeeeease.  It took me three years to get him a part-time one out of these people….The real, real problem here is that both the teacher and the EA let Colt away with murder, daily.  When asked how they deal with what they call ‘back-talk’ (i.e. refusal to do something) they answer:
“Um…well, we ask him again…”
“And when he refuses the second time?”
“Umm……we ask him…again?”
Jesus…well, that would be why the child isn’t listening to you honey.
My point here, is that D is being a bit of an idiot about all of this.  He’s calling lawyers and psychiatrists, rallying troops.  We have an appointment with the teacher (who is probably now scared half to death) tomorrow night which I’m dreading….D went to bed angry, woke up angry..is still angry…tomorrow?  Surely will be angrier.  His back up is great, but when he starts spouting off about suing the school…gahhhhh…It’s hard to stop him once he starts.
I spent three years carefully constructing this bridge between us and the school.  Everyone there knows I’m 100% on Colt’s side and will support anything that helps him along the way.  I’m there for the teachers for after-hours brainstorming sessions on how to help him progress.   I’ve spent days on the phone with these people, dealing and helping and plotting and counter plotting and trying so, so hard just to get some semblance of routine for my little guy.  If D storms on in and smashes that bridge to bits I’m going to be so….tired.  :S  They know I won’t let them away with anything at that school…not if it’s hurting Colt in any way.  Threat of legal action won’t go far with them.  I wish I could get that across to D somehow.
*STRESS*.
It’s so hard, when you can’t see eye to eye as parents.  Doubly hard when your child is special needs and NEEDS you both on the same side.
So good news?   I don’t have a headache yet today.  Whoop.

The Most Beautiful Words

Originally published on October 21, 2011

Colt taught me, last night, that the little things can totally change someone’s day.  🙂

He didn’t even call me into the room…I happened to be passing through on my way to put some laundry upstairs.  I asked him what he was doing and he said,

“Makin some words mom.”

I asked what kind of words.  He answered,

“They are the most beautiful words I know.”

I took a peek at his computer table and this is what I found…
(life is just so good, when you catch it at the right moments, isn’t it?)

So it’s been a while…

I started this particular blog back when my son was just a little guy but ended up posting most of my thoughts on him on my other blog which contained the rest of my story and life.  Colt is at a point in life now where things have changed so much and are about to change so much more, I thought it important to get back here to finish what I started.

The original purpose of this blog was to chronicle the daily life of Colt and my little family and I got off course as work, life, illness and stress got in the way.  I’m going to spend some time seeking out the posts from my other blog that have to do with him and will transfer them here.  Once that is done, I’ll start anew and bring you up to speed on my son’s life.

To reintroduce myself:  My name is Grainne and I have a son called Colt who is on the ASD spectrum.  His diagnosis is mid-low functioning autism and his main difficulties are in sensory overload, sensory hypersensitivity, lack of ability to read social cues and expressive and receptive communication.  He will be entering high school this fall (gulp) and it’s been a looooooooong ten years in elementary school.  So much to catch you up on.  First, to fill the back log with post from my other blog.  Stay tuned.

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Halloween, 2013

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Hallowe’en is a holiday that does not sit well with Colt.  He does not like the dark, hates knocking on people’s door (shy…I was like that as a kid too), is terrified that a dog will jump out and hurt him and he is deeply unsettled when people do not look the way they are supposed to with masks and make up.  The pretend world isn’t supposed to cross into reality for my boy.

Each year we ask several times if he’d like to go trick or treating and every year we get an ambivalent “yes” although he usually only does a handful of houses.  This year I started early, telling him he didn’t have to do it; If he wanted, we could go to the dollar store on the weekend so he can pick out his own Hallowe’en candy!  I offered to get him a plastic Hallowe’en basked he could fill so he’d have as much candy as his friends to enjoy.  Even with this offer, he still decided to go.

Every year he has picked a costume to wear.  No masks, no face makeup, no hats or anything strange on his head.  No animal ears or tails, no-thing at all aside from a pair of skeleton gloves and a skeleton toque where nothing was hanging off.  lol  Fine.  It was an easy costume to maintain and he never wavers in the end.  Even if he wants to be Sonic the Hedgehog, he ends up a partial skeleton.  (He wouldn’t even wear the hoodie with the bones on the front in class this year!)  BOOOO 4

As dark fell on a rainy, strangely warm Hallowe’en night, Colt and his dad set out to get some candy.  He went first to his sitter’s house but didn’t want the potato chips or apple he was offered.  He went to the next house and got a mini bag of M&M’s then burst into tears and begged his dad to bring him home.

The poor child wants, so much, to be like his friends and I can see the little tendrils of hurt snaking through his mind and heart, but, I think that by letting him no there was no shame in disliking trick or treating he felt a little better.

As he came in he walked right into my arms for a hug.  I kissed his head and told him there were lots of kids afraid of the dark, dogs and costumes and that he would never have to go again.  Next year I’m going to buy him candy before hand and make a game of hiding it around the house or something.  I feel so sad for him, missing out.  Mind you, I wasn’t a huge fan either.  I used to follow a bunch of kids so I never had to knock….

halloween-wallpaper-55Ah well.  Another Halloween over.  This was a hard one for my boy.

So many changes this year….so much growing up going on.  He struggles all the time but never once have I seen him give up.  He never quits anything…just keeps at it until he finds his own way.  He’s going to get there, I hope.

So, with a few tears and lots of hugs he settled again and began planning his shopping adventure for candy.

“Can I have ten packages of chocolate?”  He asked. “And some gummy worms and bubble gum?”

“Yep, yep and yep!” I answered.

Things were wonderful after that.  I love being able to fix what isn’t working in his life.  If only it was all this easy.

All by his Own

My little guy is turning nine this summer and he’s getting to be no longer a “little guy”. The child is nearly as tall as me and his feet just surpassed mine…if I try to bum a pair of socks from him they flop off my feet, all stretched out.

He has reached the phase where he wants to do everything by himself, or as he says “all by my own”.

One day this spring Colt came to us and asked if he could take swimming lessons.  We instantly figured that he didn’t understand what ‘swimming lessons’ actually were, as his sensitivity level to loud noises and commotion is very high.

We went to the local YMCA and got a membership so the lessons would be included and we could still have family swims in the pool…play around in the gym, that sort of stuff.  I took him down to the pool while lessons were going on and pointed.

“Colt…THAT is swimming lessons.  You see what those kids are doing?”

“Yes.  Swimming lessons.  That’s what I want please.”

“Okay Colt but it’s going to be loud…”

“That’s okay with me.”

“…and it’s going to be busy and you’ll have to go in alone…mom can’t come with you.”

“That’s okay with me too.”

“Okay then, let’s get you signed up.”:I said as we walked to the front desk.  I was sure he’d chicken out or change his mind before we registered but no, he didn’t.  He actually walked up to the counter and addressed the clerk.

“I would like swimming lessons please?”  He said, so politely.

So…he’s taking swimming lessons.  We started him with the little kids in the very first group and although we got a bit of pushback from the lifeguards, they understood when they tried to talk to him that he wasn’t even grasping the concept yet.

After two lessons, he was floating on his back.  Now, he’s learning the front crawl while wearing a life jacket.  He works hard to get it right, listens very carefully to the instructor, and when she is working with the other kids in his class, he practices his newly learned moves.

This child, who used to panic when the shower water sprayed *anywhere* near his face, is now diligently practicing the lessons he’s learning so he will be able to swim.

*big smiles, happy tears*  I didn’t know if this day would ever come….  This is the first instance of Colt making a decision, asking for help to execute that decision and then sticking with it looking forward to the achievement of his goal.  (sigh of relief)

He’s such a cool kid.  I learn so much about life, through his beautiful blue eyes.

The Shower Trick

One thing that Colt loves, more than anything, is surprise treats brought home for no reason at all. His dad is wonderful like that, always stopping here or there to grab something small and delicious to bring a smile to Colt’s face.  It’s often a healthy snack too…we’re lucky that Colt LOVES fruits and veggies so a surprise fruit tray or veggie platter is met with the same joy that ice cream or chocolate cake.

Last night while in negotiations to get the boy into the shower, D pulled me aside and told me that he had bought some little Italian ice treats which he hadn’t mentioned aloud yet.  He decided to use this as bait.

“Oh hey Colt?”  He said

“Yeah dad?”

“I forgot to tell you, I stopped at the store on my way home and picked up a yummy treat for your snack after bath!”

“WOW!!  WHAT IS IT DAD?”  Colt bellowed, instantly excited.  “Is it a watermelon?  Is it candy?  Is it a chocolate bar?  Is it a smoothie?  Is it a waffle…?”

D, being smart, wouldn’t tell him what the treat was.

“You can have one as soon as you’re done in the shower” he brilliantly added.

Let me tell you, there has never been a faster shower in the history of eight year olds.  The child tore off his clothes, jumped into the tub but then seemed to hesitate.

“MOM!?”  He yelled even though I was standing about 4 feet away.  “Um…so you have to get in the shower too.”  (He was afraid I’d get to the treats before he was done).  lol..I promised not to even peek in the freezer until he was washed, dried, and ready for bed.

He flew through his shower and jumped out, not even bothering to dry off before pulling on his PJ’s…lol…wet spots sticking to him everywhere.  He took my hand and lead me to the kitchen where we finally got to see what it was.  (I say finally but understand it was about five minutes after the whole episode began).

“OH.  MY.  GOODNESS!” he grinned so wide I thought his head might split in two.  D pulled out the box of ice treats and when Colt saw that they came with candy spoons he just about dropped from sheer delight.

We sat together, his leg pressed to mine, and enjoyed our snack in the living room.  Every third scoop was shared and he didn’t stop saying “mmmmmmmmmmmmmmmmmm” the whole time he was eating.

“Don’t I just have the best dad ever?” Colt asked me quietly after we had finished our snack.  Were comparing blue lips and tongues at the time.  “This was the best day of my entire life!”  He concluded.

I love this life.  When a five dollar box of ice and sugar can put such a beautiful smile on a child’s face…  Just makes me thankful to be here, to be his mom, and to be the one who gets to love him.  I feel so lucky.  So loved.

Who could ever want for more?