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George And The Silent-E Machine

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It’s been more than a few days since I last posted here. I could give you all kinds of reasons for this, like lack of sleep, lack of energy and lack of time. Ultimately, the reason for my mini-hiatus can be traced back to one thing: the silent-E machine. Known to most people as the dishwasher.

My son George is the one who started referring to our dishwasher as the silent-E machine. He is a big fan of the Leapfrog movies. If you have young kids and you don’t know about Leapfrog, Google it. The movies are fun and educational, and entirely appropriate for youngsters learning how to read or count. Anyway, one of the movies features the Leapfrog characters in the Letter Factory learning about how silent E’s can change the way a word sounds. The silent E’s are manufactured by a machine called – you guessed it – a silent-E machine.

After George watched this movie several dozen times, he decided that he wanted a silent-E machine of his own. He grabbed one of his fridge magnet E’s and placed it on the dishwasher, and hey presto! We had a silent-E machine.

George is very particular about routine, and part of the essential routine is that the silent-E machine be turned on right around bedtime. Usually, he will quite happily go to bed and drift off to sleep with the silent-E machine running in the background. And this is fine. If he wanders out of bed from time to time to check on the progress of the cycle, I’m OK with that. He likes to make sure that all is well in the world as he knows it.

About a week ago, the silent-E machine started to act up. I started running it only at times when I could keep a constant watch on it. Which meant running it outside of George’s regular schedule. Most autism parents will bear witness to the fact that this is a recipe for disaster. The entire household applecart was severely disrupted, and all of us started getting a lot less sleep.

Then, on Mother’s Day, we reached a point of not being able to use the silent-E machine at all. We had to start lugging dishes up and down the stairs so we could borrow my mother-in-law’s dishwasher, and this meant that her dishwasher was being run at the wrong times.

Oy.

It got ugly. Now George was staying awake more or less through the night, crying about his beloved silent-E machine, and running up and down the stairs at odd times of the night to inspect my mother-in-law’s dishwasher.

I am hoping that it will all be fixed tomorrow. The problem seems to be nothing more serious than a clogged pipe, and I have acquired some chemicals to pour down it.

Wish me luck, friends. It’s been a rough ride.

What happens when normal routines are disrupted in your house? Is there chaos or does everyone go with the flow?

(Photo credit: kevin dooley. This picture has a creative commons attribution license.)

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More Than Just A Toy

It is snowing outside, but it is almost too warm in the speech therapist’s office. None of us really wants to be there. Not me, not George, not even, I suspect, the speech therapist. George – three years old and non-verbal yet defiant – has refused to remove his coat even though he must be getting toasted under all of those layers.

He sits down unwillingly, and I position myself between him and the door to prevent any escape attempts. I settle in to watch what will undoubtedly be yet another fruitless session. We’ve been coming here for almost a month now, and George has not responded to a single thing. His speech is no further along than it was to begin with, and although I like the therapist very much, a part of me is wondering what the point of all of this is.

As usual, George is making niggling whiny noises, not-quite-crying noises, little sniffles and moans that make it abundantly clear that he does not want to be here. He doesn’t care for any of the toys that the therapist is producing out of nowhere, like a magician. He doesn’t care for toys, period, but the therapist patiently insists that it’s just a question of trying until we find the one thing that will work.

As George starts to noisily rock his chair back and forth, I sigh inwardly, but following the therapist’s early instructions, I do not say anything. I am tired. I am sad. I am frustrated. I suddenly find myself having to blink back tears that threaten to spill down my cheeks.

And then… a miracle.

The speech therapist puts Mr. Potato Head down in front of George.

It is love at first sight. Instantly, the rocking stops and the whiny noises are replaced with a stunned silence. I can literally see my child’s eyes filling with wonder. It’s like witnessing a rain shower on a parched desert.

Instinctively, I hold my breath and stay completely still. I just know that something special is happening, and I don’t want to ruin the moment.

George reaches out shyly and touches Mr. Potato Head. Then his entire face – his entire soul – erupts in the biggest, most beautiful smile I’ve ever seen.

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From that moment, George started making progress at his speech therapy sessions. Thanks to Mr. Potato Head, his vocabulary started to explode. Not only that – he finally had a toy he was interested in playing with. Not staring at, not lining up according to colour, but actually playing with. When friends and family members asked what they should get him for birthdays, we had something we could tell them.

Six years have passed since that day in the speech therapist’s office, but George’s devotion to Mr. Potato Head has never wavered. He collection takes up two large Rubbermaid tubs – and those are just the Potato Heads that are not adorning his desk, his bed, and other flat surfaces at various points throughout the house. He has Mr. Potato Heads, Mrs. Potato Heads, Baby Potato Heads, Darth Tater, Indiana Jones Taters of the Lost Ark. There’s a hockey player Potato Head, a pirate Potato Head, a doctor, a fireman and a sheriff. George has an entire Potato Head community that keeps on growing.

Earlier this week, Mr. Potato Head celebrated his 61st birthday. This is one of the most iconic toys of the 20th Century, right up there with Barbie and Lego.

But to George – and to his grateful mama – Mr. Potato Head will always be more than just a toy.

(Photo credit: Kirsten Doyle)

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Guest Post: You Never Know What Their Quirks Will Become

Today’s post started life as an email that my friend Jacquie sent to the autism parenting group that we both belong to.

Jacquie is the mom of two boys, aged 8 and 16, who both have special needs.

Her older son, Eric, has autism. He has his challenges, but as you will see in this post, he is finding his way in the world. I will not say any more – I will let you read for yourself.

8-year-old Justin has RAD (reactive attachment disorder), autism and intellectual delay. He is one of those unreasonably good-looking kids who you just know will be making girls swoon as soon as he (and the girls) hit puberty.

And Jacquie? Well, she’s just a fabulous friend and a fantastic mom. I am immensely grateful to her for allowing me to share this story of Eric. To special needs parents like myself, this is really a story of hope.

Without further ado… over to Jacquie.

Eric

Eric

 

When Eric was a baby, the only way you could soothe him was singing.

When Eric was a toddler, he used to stand in the windowsill of his bedroom’s gigantic window and listen to a cassette of kid’s songs sung by kids over and over.  When the tape ended, he would scream until someone came and turned it over and pressed ‘play’ again.  Then he’d scream until we got the hell out of the room.

When Eric was a preschooler, he’d sit in front of Windows Media Player and watch the visualizations you could choose to go along with the music that was playing.  He’s spend hours just watching these graphics move and change with the music.  God forbid you try to distract him.

When Eric was in kindergarten, he developed a musical crush on Shania Twain.  I still shudder to think of that year.

When Eric was in grade school, he started to make music using free music programs like garage band.  It was awful.  I didn’t have the heart to tell him he sucked.

When Eric got to high school, he asked for a professional-grade music-editing software suite, so we gave him that for Christmas. Subsequently we began seeing him only for meals and The Big Bang Theory.

When Eric had a little experience with production, he asked for a Mac, which has superior music production capabilities.  He was taking guitar lessons, piano lessons, and music classes at school, so we thought it was probably worth it.  Subsequently we began seeing him only for meals.  There are days’ worth of The Big Bang Theory episodes on the PVR that have never been watched.

When Eric was a week younger than he is right now, a Danish music promoter contacted him and, based on the free content Eric has put out on music sites and on the the contests he has won with his compositions, offered him a 6 month contract.

When Eric was 12 hours younger than he is right now, we signed.  Eric is now represented by a dance music label in Denmark.

His songs will go up for sale on iTunes, Spotify, Juno, and Amazon.  This company will help him design his logo, refine his sound, and establish a presence in the market.

When Eric was a little boy, we mourned the way music took him away from the world.  Now he’s bringing his music to the world.

(Photo used with permission of Jacquie VonHunnius).

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Prince Of Dreams

One of my assignments for last term’s writing class was to write a poem about two characters interacting in a situation of conflict. I baulked at this more than a little. I love to write, and I like to think that I’m good at it – but I absolutely suck at poetry. I struggle to read it, and I struggle to write it. Four hours before the midnight deadline, I was trying to figure out what the hell to do with this assignment. At the same time, I was locked in a power struggle with George, who was just refusing to go to bed. Eventually – EVENTUALLY – he went to sleep, and I returned to my dilemma. As I sat there sipping a glass of Merlot, the poem I had been searching for came to me. This is what I wrote…

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Beautiful mind, gentle soul
The boy is different, yet strangely whole

He speaks with movement; he talks with his eyes
His spirit is pure; he tells no lies

He seems to be fragile, but has a strong will
Potential, desires and dreams he’ll fulfill

Tonight he won’t consent to be led
His mother cannot get him ready for bed

She coaxes, cajoles and softly convinces
He declines with a sigh, the most regal of princes

A thousands breaths later she lays down her child
By now he is sleepy, so tender and mild

She keeps watch by the bed and watches him sleep
The feeling of love so profound, so deep

(Photo credit: Kirsten Doyle)

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Running for Boston: Toronto Yonge Street 10K

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There is something very strange, and very uplifting, about standing at the start line of a race less than a week after a marathon was targeted in an act of terror. Especially when you are one of several thousand participants, most of whom are wearing special bibs declaring their support for the city that the bombing happened in.

To say that the atmosphere at Sunday’s Toronto Yonge Street 10K was amazing would be a gross understatement that does not begin to describe what it was really like. Start-line energy is phenomenal enough as it is. Add in the fact that thousands of runners are all banding together in solidarity for those affected by the Boston bombing, and you have something truly spectacular.

For that reason more than any other, I was mentally ready for this race. I should have been nervous, considering that my worst race ever was just two weeks in the past. I had not exactly had a resounding start to the season. But instead of being nervous, I was excited about this race for days. Judging by the fact that you could almost reach out and touch the atmosphere at the start, my 6000 or so fellow runners were excited as well.

Not only was I mentally ready for the race, I felt physically ready as well. Just a week before the race, I had gotten my training back on track, and I had also moved back to a cleaner way of eating. I was realistic enough to know that I probably wouldn’t make a personal best time, but I thought I had a shot of beating a pace of 6:30 minutes per kilometre, which would have given me a time of 1:05:00. That would be enough to set me up for a good solid few weeks of training leading up to my next half-marathon.

As is my custom, I placed myself quite far back in my corral, and so when the race started, I found myself boxed in by runners slower than myself. For the first kilometre or so I kept having to slow down and dodge around people. I didn’t mind – in fact, I counted on it. If I didn’t get slowed down at the start, I would go out too fast and run out of gas before the first aid station.

As it happened, my first couple of kilometres played out exactly as planned from a pacing point of view. Sometime during the second kilometre, I found my space to run and I settled into my pace. In spite of the fact that most of the first 7km or so are downhill, I deliberately held back for the first half of the race. Downhill running can be easier from an exertion point of view, but if you’re not careful, it can be absolute hell on the knees and quads. Apart from that, I feared that if I went nuts on the downhills, I wouldn’t have anything left for the last 3K or so.

I made the halfway point in a little less than 32 minutes. I was happy with that. I was going at a pace I thought I could maintain for the second half, and I was on track to beat my goal time. I had a buffer of a minute or so, which would come in handy if I started to fade near the end.

Instead of fading, though, I ran the second half faster than the first. I was tiring physically, but absolutely uplifted mentally. The crowd support along the route was fantastic. There were little kids holding out their hands to high-five passing runners, people cheering us on by name, and folks holding handmade banners that said things like, “Run for Boston!” It occurred to me that coming out to support the runners in the aftermath of the Boston bombing was as much of a big deal for these people as running the race was for me. In a sense, I was running for them, for these wonderful folks who were showing solidarity with the running community, and I couldn’t let them down.

And so I sped up. I smiled and waved at everyone who cheered. I high-fived the children who stood there with their arms stuck out like traffic policemen. I gave a thumbs-up to the people holding banners. I drank in the positive energy that they all offered, and before long, I was sprinting for the finish line, where spectators and runners alike were cheering loudly, not only for the victory of runners crossing the finish line, but for the triumph of a community absolutely united against violence and fear.

In the end, my time was 1:02:48 – more than two minutes faster than my target, and only 68 seconds off my personal best. Not a bad showing at all.

During the winter and the early weeks of spring, my mojo went into hibernation.

I’m pretty sure it’s awake and ready to go for another season.

(Photo credit: Kirsten Doyle)

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What Kind Of Flower Am I?

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“The flower that blooms in adversity is the rarest and most beautiful of all.”
- Mulan -

Today’s prompt in the Health Activist Writers Month Challenge is to reflect on this quote and say whether or not it applies in my life.

The quick answer is “no”.

I am not a flower that blooms in adversity. I’m not like those cacti that I’ve seen in hostile deserts, that sprout the most beautiful, colourful flowers even though it hasn’t rained for 40 years. Although I’m hopefully not prickly like a cactus, I’m tough, and I’ve survived some pretty intense stuff over the years. But I haven’t bloomed all through the process. I have, at times, been completely denuded of flowers and leaves. I have been shredded as I’ve been blown around by storms, and I have found myself having to take root in places other than my natural habitat.

I’ve always survived, though, and there is some merit to that. I haven’t always bloomed, and I haven’t always been beautiful – but I’ve always survived, and I’ve gotten stronger through my journey. I have always been – and probably always will be – prone to vulnerability. I used to think this was a bad thing, but I am starting to learn the value of being vulnerable.

Because if I wasn’t vulnerable, I don’t think I would be capable of feeling love with such intensity. I wouldn’t be able to tap into my son’s world as well as I often do, and I wouldn’t have the gift of empathy.

Am I a flower that blooms in adversity? I would have to say no.

But I am a flower that can withstand anything.

(Photo credit: Elsie esq. This picture has a creative commons attribution license.)

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5 Signs That I’m Approaching Burnout

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If you’re anything like me, you occasionally reach the point where your mind and body just shut down to prevent you from overburdening it any further. It’s always better, in my experience, to slow down and take a deep breath before reaching that point. I’m not always good at recognizing the signs,though, and when I do, I don’t always have the ability to prevent the train wreck that’s rapidly approaching.

The tell-tale signs may be different from one person to the next, and I would suggest that at a time when things are sailing along just fine (in other words, don’t wait for the crisis), everyone take a few minutes to reflect on what those signs are. Here are mine:

1. I lose the ability to make decisions. I’m not even talking about big stuff, like whether to move my kid to a different school, or whether to change jobs. I’m talking about stupid things, like what to cook for dinner. Any time I have to decide anything, I’m overcome with a feeling of panic that varies in intensity, but always makes me feel somewhat immobilised.

2) I lose interest in the things I like. If I stop caring about running, or if I don’t want to write, chances are that I’m approaching burnout. There are few things that scare me more than having to force myself to go for a run.

3) Little things annoy me. Things that I wouldn’t notice under normal circumstances make me want to jump up and throttle someone.

4) My relationship with food goes all out of whack. Either I stop eating entirely, apart from the odd nibble here and there to stay alive, or I go nuts and eat everything in sight.

5) Three consecutive hours of sleep counts as a “good night”.

What are your signs of burnout?

(Photo credit: bark. This picture has a creative commons attribution license)

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Before…

Today’s prompt in the Health Activist Writers Month Challenge calls for bloggers to post a “vintage” picture of themselves, along with a description of where they were in their journey when the picture was taken.

I don’t know whether this picture classifies as vintage, but it was taken when I was on the cusp of moving from one life to another. George was not yet born, but he was certainly making his presence felt. You can probably tell from the fetching attire that I was in hospital, and I was in the throes of labour. That expression on my face may look like a smile, but really, it was a grimace of pain.

George made his appearance about four hours after the picture was taken. My life has never been the same since, and the life I have now is infinitely richer and more beautiful because of the presence of my two children.

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A Mom’s Shameful Regret

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He’s been needling me all day.

It’s a cold, rainy day and I didn’t get any sleep. The weather is too miserable for me to go outside for some invigorating fresh air. I’m trying hard to hide the fact that I’m irritable, and for the most part, I’ve been succeeding.

Just another hour to go…

Just sixty more minutes until I tuck him in, turn the lights out and kiss him goodnight. He’ll sleep well tonight. He usually does when he’s been fussing all day. Irritation and anxiety take a lot of energy out of him.

And there has been a lot of irritation and anxiety today. He’s kept on wanting stuff but not knowing how to ask for it. He’s been frustrated by my failed attempts to understand him. He has been pushing his little brother around, because he just doesn’t know what to do with the frustration. Sheets have been ripped off beds. Toy boxes have been turned upside down. Hampers full of clean, folded laundry have been upended. There’s a new hole in the drywall from a headbanging incident.

I’ve been taking it in my stride, talking in low, calm tones to soothe myself as well as him. Earlier I escaped to the shower for a much-needed ten minutes. I’ve been keeping myself going by taking this difficult day in five-minute chunks, by guiltily counting down the minutes until the kids’ bedtime, by promising myself a relaxing glass of wine as soon as the kids have dropped off to sleep.

They’re in their pyjamas now, and I’m preparing their bedtime cups of milk.

He comes up to me and yells something unintelligible. I sigh inwardly and look at him.

“What did you say?” My question comes out more sharply than I had intended.

He walks over to the door, and opens it for the express purpose of slamming it as hard as he can.

And just like that, I’ve had enough. That one small action has been enough to send me over the edge, to be the proverbial straw that breaks the camel’s back.

“I’m SICK of this!” I scream, surprising even myself. “Why can’t you just be NORMAL?”

Instantly, I realize what I’ve said and I feel like the worst mother in the world. This is my son, my beautiful boy. He hasn’t been difficult today on purpose. It’s not his fault he has autism, and he hasn’t enjoyed this anxiety-filled day any more than I have. And I have just yelled at him for not being normal.

I’ve done something terrible, I think to myself.

I look at my child, who I absolutely adore, who I have just thrown such dreadfully hurtful words at, and I wish I could have the chance to take it back.

I didn’t mean it. I wouldn’t trade you for anything in the world.

I sink down onto the couch and dissolve into tears. I am full of self-loathing, and every fibre of my being is wondering what damage I have done, and how much I have set back my child’s progress.

As I sit there sobbing, with my face buried in my hands, I feel a small movement next to me. I look up and he is there, looking at me with a combination of confusion and concern.

“Go give Mommy a hug,” he says softly, and wraps his arms around my neck.

And that makes me cry even harder.

(Photo credit: butupa. This picture has a creative commons attribution license.)

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Wordless Wednesday: Word Cloud

Word clouds are super-cool things, and my favourite word cloud site is Tagxedo. You can play around with colour themes, shapes and fonts, and have a lot of fun. This is the result of my playing around.

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