I'm Not an Idiot

I love this quote. I read it early on in our journey with autism and it did not mean as much to me then as it does now. I will try my best to remember it each time I speak to my children...

This is taken from the Doug Flutie Jr. Foundation for Autism website:

""Jeffrey Lurie, the owner of the [Philadelphia] Eagles, had a brother who was autistic who didn't speak his first word until he was 35. He told Jeffrey, 'Don't talk to me like I'm an idiot.' "

This quote not only reminds us to respect the people who are Owen and Will, but it also inspires us to know that even at 35, there is hope that words will come.

225 More Spots for IBI in Ontario

Autism is back in the news again in Ontario.

"McGuinty Government Investing In More Services For Children With Autism"
(Source: Ontario Govt. Ministry of Children and Youth Services - News Releases)
Jan. 18, 2007

So I've had quite a few calls from friends back home, who have asked me "do you regret moving out there now that Ontario is increasing its support?". Our answer is an unequivocal NO!

225 new spots in all of Ontario would not have come close to our spot on the waiting list (which we gave up with the move). You'll also note that the article says "We are moving quickly to fund Intensive Behavioural Intervention (IBI)...". I'd be interested to hear how many spots have actually opened up since this announcement. 225 out of a remaining 1280 children still on the waiting list, does not seem to make much of a difference in the big scheme of things.

Our favourite autism-advocate/political player, Shelley Martel (non-autism related politics aside).. said it succintly when the news was announced:

"Autism Announcement Is A Drop In The Bucket..."
(Source: ontariondp.com)

My happiness for those families whose children were one of the 225 is heartfelt. I often think about the kids that have not yet had opportunity to benefit from any sources of support to address their needs. I haven't forgotten those families and even though we are 'livin' the life' out here in Calgary, we have not turned our backs on them. We'll continue to bitch and complain about this crappy system and hopefully someday I'll have a post to announce a federal autism strategy that will address the needs of ALL Canadian kids with autism and not just 225 of them.

Sleepless Nights with Wild Will

No fun pictures for today's post. Just some whining and complaining. Can't help it. When your head is filled with cotton, you can't help but waanh a little bit.

Autism or not, I know there are parents everywhere who have kids who don't sleep well. You can tell which families have got'em. They're the ones with the heavy bags under the eyes, the shirts that are on inside-out, the permanent coffee cup glued in their palm. They snap too much at their kids, they choose tv over playing at the park and they generally look like hell. I sympathize. We've got one. Sometimes two (and on those days we don't even make it out of the house in the mornings for people to see if we fit the description).

We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with Jake and wondering why it wasn't working with Owen and Will. I'm not saying that there IS a reason for their insomnia, I'm just saying they were different. I assumed it was because they shared a room and woke each other up all night, or because they had some digestive issues that caused feeding issues that caused them to wake up to feed more often that caused our sleep deprivation that caused our insanity........ Okay, I can't go back there. Many of you can remember those days with me and will recall that it was definitely not a memorable experience to be with myself or Jonathan during that first year and a half. 1 to 3 hours of sleep for 18 months would destroy the strongest of men. We somehow survived it.

But that's my point. I thought that those newborn days were long over. I was wrong. Now I don't have a newborn whose mewlings cries may have been annoying at 3am, but are not nearly as anxiety-ridden as when your bedroom door gets slammed open at 3, your lights all get turned on, your taps are running full, your other 2 kids are crying because they were awoken the same way. You follow the trail of lit lights downstairs to find a bag of bread torn open with its slices all over the floor and your water cooler depleted of half of its contents. Oh! Is that your sleeve of newly developed photos floating in that 6 x 6 ft giant puddle on the floor? The Wiggles are blaring full blast from the tv, your back door is wide open - freezing air blowing in and where is the culprit?? He's got one foot on the front steps after having figured out how to unlock the front door. Middle of winter. An Alberta winter. It means cold. And if I hadn't woken when I did, Will would probably be on his way to take a dip in the freezing Bow River.. his runaway destination.

There are periods that can last a couple of months where I think "we are so lucky that our kids don't have sleeping issues". When the world is right. When we get 7 to 8 hours a night and our kids hop into bed happily by 8 o'clock and sleep right through. How could I have forgotten that those times can quickly disappear and turn into this?

We are now going on Week 3 of Will's insomnia. Sometimes it shows its ugly head at bedtime. Hour after hour of listening to Will kick the wall and vocally stimming his "oo-oo's and ee-ee's" all night long that can suddenly turn into screaming or crying. Seeing his light flick from underneath the door. You can't help but laugh when you hear him knock on the door from the inside. The worst of it is, you can't check on him. If you do, he knows that you'll come back again and again. So you try to stay out. But if you don't check, you're running the risk of finding a bed or a heating vent full of poo (sorry for the weak stomachs out there) and that usually means a huge cleanup and a bath. You may also risk missing a near accident like the other night. Jonathan abruptly opened Will's door because he heard that he was making a ruckus. Will panicked and leaped off the 6-drawer dresser he was standing on, smacking his cheek. -We somehow avoided a trip to emerg for that one.

But the worst is definitely the wake-ups in the middle of the night. You think you've escaped it. After a long day, the kids have been in bed since 7 or 8 because they couldn't keep their eyes open and you crawl in around midnight. 1 o'clock and BAM! The lights go on and so goes the rest of your sleep. When Will wakes up in the middle of the night, it's not a situation where you can cuddle with him in bed until he falls back into la-la land. Will is up. It's like his brain thinks it's daytime. You can guarantee that you'll be up with him at least until 4 and maybe you can catch a few more hours before the rest of the house has to get up. Just like the newborn era.. Jonathan and I usually argue every single night about whose turn it is to stay up with Will. It's a miserable time. Being a reader, I wouldn't mind the extra time to sit up with a book if I knew I didn't have to chase Will. But you can't sit still with that boy because he destroys everything. He won't sit still and he won't stay in one room for longer than 5 minutes.

Last night was the worst. And the reason for this complaining session. Jonathan was out of town and Jake was out for a visit at Sally and Greg's for the evening. I was looking forward to spending some quality time with Owen and Will. As soon as their therapy ended, no later than 5 minutes after, Will took a leap off the coffee table and knocked his hip off the wood. He yelled so loud! The poor little man bruised himself (yet again) and I felt pretty bad for him. The upset from his hurt turned into a full eruption of a tantrum that lasted an entire hour. There was a point last night, when I was kneeling on my kitchen floor, trying to keep my balance as Will threw his whole body weight against me, clawing at my eyes and mouth, trying to bite my hand, all while trying to butt his head up under my chin.. all at the same time.. I had a pot of Kraft Dinner overflowing and sizzling on the stove beside me.. Owen sitting at the table - crying because he wanted his dinner (yaay! as an aside- at least he wanted to eat!).. I looked into Will's eyes and it was like he was torn between wanting me to console him while wanting to take out his anger on me at the same time.. I suddenly saw him 10 years from now. 10 years stronger. 10 years bigger. 10 years angrier. It scared me. I am grateful right now that the tantrums at home have significantly decreased since we moved out here. But when they happen, it's a reminder of how strong and aggressive Will can be. Hopefully as the years go on, he'll learn skills to help him cope with his frustration so that I won't be lying flat on my kitchen floor.. 10 years from now.. after being knocked over by him. Or Owen. Or Jake. Scary.

But as I was saying. The tantrum lasted quite a while and after figuring out that a really, really deep pressure hug was doing the trick to subside his sobbing, Will finally got a hold of himself again. He disappeared in a flash and I assumed he was off for some time to myself. By this point, Owen had huge alligator tears rolling because he could see his box of Kraft Dinner sitting on the counter, but couldn't understand why it wasn't in his mouth. I decided to leave Will be and feed Owen. It's always a trade-off. Could Will be doing damage while I'm sitting here with Owen? So after Owen ate (a whole bowl!), I went up to check on him. Couldn't find him anywhere! Finally realized that the pile of bedding on his bed was Will sound asleep. I wish I had taken a picture. He was so peaceful.

Now here presented the real problem. It was only 5 o'clock. I decided to let him sleep. I thought that I could handle a 3 or 4 o'clock wake up if that was going to be our fate. So Jake went to bed, Owen went to bed. I cleaned up and thought I would get myself to bed as well so that I could get some precious hours in before the wake-up when BAM! 9 o'clock and guess who's up?

I realize this story is way too long and boring, so I'll cut it short. As long as you get the gist of what a night in the life of Stacey and Jonathan is like. It's not sexy and it's not glamorous. It's cleaning poop out of heating vents, it's cleaning up minor floods, it's coaxing Will down off of the top of the wall unit and it's staying up with him from 9pm to 3am, only to have Owen wake up for his day at 4am. Nights in this house are hell.

So again.. excuse my whining and complaining. But I'm back in newborn mode. And for those who were around back then, you probably know to steer clear this time as well. :) It's 7 o'clock.. gonna try for a bedtime and a full night sleep. Wish me luck!

David Kirby Recants "There is no Autism Epidemic"

Now THIS is interesting. One of the most surprising pieces of news I've heard in a long time from the world of Autism...

David Kirby wrote the now-famous and well-circulated book entitled "Evidence of Harm, Mercury in Vaccines and the Autism Epidemic - A Medical Controversy". It formed the basis of many legal arguments, debates, ads and water cooler conversations. His 'evidence' was referred to on nearly every American talk show and news program and it is and thousands of parents of children who have autism thought they had found that one person who seemed to have all the answers.

Look what he's saying now:

"There Is No Autism Epidemic"
(Source: huffingtonpost.com)

Here is some of the backlash from the blogging community:

"David Kirby and Sour Grapes"
(Source: posted by Orac - scienceblogs.com)

"David Kirby Plays the Segregation Game"
(Source: Left Brain/Right Brain - kevinleitch.co.uk)

"David Kirby on "There is No Autism Epidemic" and Autism Vox on his rhetoric"
(Source: Kristina Chew - autismvox.com)

More Christmas Concert Clips

Snow Cake & Autism

Over the holidays, Carol, Sally and I were lucky enough to have a night out at Calgary's Uptown Theatre to catch a viewing of Snow Cake. I hadn't heard much about it, but once I did.. I read up on it right away and was interested to see what it was about. Any film that shows a depiction of autism appeals to my interest and the story of a woman with autism who is herself a mother, really had me curious to see how it would be portrayed.

I personally thought the movie was wonderful. It's not your box-office draw and is quite simple in its story. If you're up for an art-house comedy drama that might offer you some insight into the world of autism, you'll also get your money's worth in seeing Alan Rickman's performance. I really thought it was worth seeing. Check out some of the info I found on the web:


"Sigourney Weaver hopes film will offer fresh autism insight ..."
(Source: 24dash.com - Hereford,Herefordshire,UK)


"Snow Cake: Rickman Takes This Cake ..."
(Source: thestar.com - Toronto,ON,Canada)

There were certain parts in the movie that had me nearly sobbing out loud, but given my emotional involvement in the story, I'm sure not everyone will be so distraught. It really leaves you feeling good about the world and about people. Please check it out.

update on O's feeding program

For those of you who read a previous blog entry (or saw the video clip) of Owen doing his feeding program, here's a little update.

For a child like Owen, he has a genuine fear associated with food and with the whole feeding experience. We are not entirely sure how much of it could be fear based on experience, or sensory aversion (getting freaked out by smells, textures or colours of food), but all we know is that he doesn't eat. His diet right now, is restricted to 5 foods, if that.

He only drinks milk and fortunately for us, after nearly 6 months of trying, we are now able to add 2 1/2 oz. of Ensure to his milk so he is getting at least one can a day. If it weren't for that, he would be severely malnourished. Since the Ensure, he has put on weight and his general health is pretty good compared to before we moved here. He is currently being supervised by a pediatrician and we are waiting for our appointment (6 months) into the Children's Hospital Feeding Clinic. We've spent the last couple of years seeking advice from doctors, pediatricians, occupational therapists and a nutritionist. Suggestions have ranged from giving iron supplements which would boost appetite, reduce the milk intake, force the food on him, hide food within what he already eats, add Ensure, etc. Nothing has worked. With Owen, you can't rationalize anything with him - he doesn't understand. So bribery doesn't work. You can't hide food in the food he likes, because the SECOND you try, he knows. The result is that he will never go back to that food again. He now has a distrust of it and of you. Forcing food on him is torture. His cries are not an issue of compliance, but of genuine fear and upset. Forcing food or vitamins, or medications, means that he will no longer let us touch his face or head (even to wipe his mouth), rest a hand on his head, brush his teeth, etc. We've lost his trust. And if you force medication on him, he will then starve himself for weeks on end afterward. Unlike another child, who will eventually give in or quit being "stubborn", by eating whatever is available, Owen will not. He will stick with the milk and may even reject that. You can literally hear his little stomach growl while he eyes the food on the table, and gagging at the sight of it, all at the same time.

I have had so many people tell me what I should be doing about this. I appreciate the suggestions, but honestly, we are now at a point where he is finally eating the few foods he does like and he is putting on weight - this in itself is a HUGE accomplishment after watching him whither away to skin and bones.

It may not make a lot of sense to most of us, to have a child 'play' with food in order to work towards having them eventually eat something new. It is a painfully slow process (as was the introduction of Ensure.. milliletre by milliletre, day by day). Each day during Owen's therapy, his aides bring him into the kitchen to play. Foods such as yogurts, jellos and juices are what they have started out with. There was a time when Owen would not even tolerate it being on his placemat. Over the last 4 months, he has moved on from adding food colouring, burying and retrieving articles in the substance, finger painting with it, using a spoon to scoop and touch it to his nose, his cheeks and finally his lips. Just last week Owen was introduced to grapes and he is even allowing it to enter his mouth (without touching his tongue). There is zero expectation for him to taste or eat the food, but just to familiarise himself with it. To get comfortable with it. On Fridays at their nursery school, every child takes a turn to bring in their favourite snacks for the other kids. Needless to say, in a class of children who all have autism, there isn't a lot of variety on these snack days. Owen is definitely not the only one with feeding issues. This experience, however, has enabled the kids to touch each other's food, to watch their friends eat and the hope is that eventually they might want to copy them and try it out themselves.

Owen will gag at the sight of a lot of food and even tools in the kitchen. I don't think I really noticed it before. Until we started this program with him I don't think I had ever really presented him with many opportunities to 'play' in the kitchen before, so I never noticed. His aides now have him spreading peanut butter on bread and stirring juice mix. It's very exciting for us to watch.

I am trying to make more of an effort to include Owen and Will more in the preparation of food. ONLY if they are willing. Jake is already my little helper (funny how it's usually only when there is baking involved!). Before Christmas, we baked some cupcakes. Owen wasn't keen on touching any of the ingredients, but he was very proud of himself when he discovered that he could play a small role in placing the cupcake liners in the tray - over and over again. I am proud of him and his aides and can already see the great gains he is making in this area.

Fondues at Grizzly's!

I can't let it go unmentioned that when Diane was here a few weeks back, Jonathan and I were lucky enough to sneak away for a night to Banff. With all of our trips back and forth to this village, we had never really had an opportunity to enjoy it ourselves without having to drive people around.We stayed at Brewster's Mountain Lodge. It's the perfect location because it sits right in the middle of everything dowtown. It was cozy with its huge fireplace going in the main lobby. Our room was perfect, with a nice view of the mountain (can't remember which one).

Our weather when we arrived, was a bit blistery with blowing snow, but the following day it was gorgeous out with blue skies. We spent a few hours strolling through town, checking out all the shops and picking up a few last minute Christmas gifts, we even managed to stop at a British pub and Jonathan got them to put on the soccer game (naturally). There's a great energy to this place. It's not just about the sights and the shops that cater to the tourists. Nor is it about the fact that you are surrounded by such beauty - the whole town is encircled by mountains and it's a rare occasion that you go to Banff without seeing an elk or two walking around. It's the fact that it is such an international meeting place. Young adults (or those who don't want to grow up!) from all over the world come to Banff to pick up a casual job so that they can earn enough money to hit the slopes on their time off. You can tell from the interactions between the locals that you won't find too many stressed-out employees in this place.

The best part of the trip was that we had some much needed time to ourselves with lots of quiet! No kids jumping off wall units, or throwing heavy objects down the stairs. Jonathan and I spent a couple of hours just reading and napping in our room and it was probably one of the nicest gifts we've had all year. Thanks Diane!

For dinner, we treated ourselves to a feast at the Grizzly House Restaurant. Oh my gosh. One of the best meals I've had in ages. Steph had been bragging for ages that she once got to eat here, so we finally got to try it out for ourselves. We enjoyed a delicious meal with a cheese fondue, beef & lobster on a hot rock, finished off with a chocolate fondue. Our waitress turned out to be an absolute sweetheart and we ended up telling her a little bit about our life. She made our special night out that much more special because she was so kind and so much fun. If she's reading this now.. we'll see you again soon!

The highlight of the trip (for me) was that Jonathan got me the best Christmas gift. On all of our previous visits into Banff, Jacob and I had been checking out a gallery that caught our eye called Editions Gallery. It is full of paintings of wildlife, the Rockies and our favourite.. a collection of Max Jacquiard's art-on canvas depictions of steam engines in Canadian settings. If you love trains, Jacquiard is regarded as the finest collectible artists in this genre.

Royal York Hotel and Union Station

Water Stop at Red Pass Junction -- this one is our favourite. When the lights are dimmed, it almost looks like the moon is glowing and that there is a tiny light behind the canvas, coming from underneath the front of the train.

Sitting in the window of the gallery, was a beautiful painting called Faery Tales by an artist named James Christensen. Jake and I spent over a half hour in front of it, trying to find all the hidden fairy tales in the scene. It's beautiful. Jonathan bought it as a family gift to hang in our future library room!

All of his work has such a fantastical and spiritual element to it, I'm totally hooked. If I could ever afford it (in my dreams), I would love to add these two to the collection:

Men and Angels

The Responsible Woman

As we drove home the next day, our trip was completed perfectly by the image of 40 to 50 elk that were grazing in an open patch of land along the Trans Canada. It was a great time.

Face Plant

The night of the twins' Christmas concert ended with a bang:




It seems that Will didn't think that one dose of facial trauma was enough for the month (see toboganning). We were invited to attend Kimberley, Keely-Shae, Rob and Harrison's Wine & Cheese after-party at their home. It was a lot of fun and it was so nice, yet again, to have all the boys together. Lisa, Craig, Ella and Owen were also there. After some yummy munchies and a couple glasses of wine, not to mention Jake, Ella & Keely-Shae's 'concert' that they put on for us, Will bolted out the front door to run to the car. Needless to say the run didn't go smoothly. Poor little guy. I thought for sure he broke his nose, but no bruising. The scars are nearly healed!

many thanks

Before I brag about my boys, I have to say a huge, huge Thank You! to our nursery school girls:

From left to right: Courtney, Pam & Erin

This is a funny (for lack of a better word) situation to be in. Your kids are exposed to so many other adults in their life through their activities and schooling outside of the home and I am sure that all of us parents are grateful to them. Especially to those who make an impact on our children's attitudes, development, skills, achievements, etc. We say thank you to those people and try to show them how thankful we are by saying so, or even giving a small token of our thanks in the form of a gift or card. It's what we do. (Okay.. so it's something that us MOTHERS do). It really takes a special someone to take yet another step up the podium to be regarded as a part of your family, or as someone who - had it not been for them, our kids may have not been who they are today.

When you have a child (or children) with special needs, your associations with adults, quickly become mostly comprised of support workers or professionals whose job is to provide assistance to your children. They are paid to help. Soon your kids begin to rely on these individuals as permanent fixtures in their day to day life, who they not only look to for the support that they are trained to provide (ie. an ABA aide, nursery school teacher, speech therapist, respite worker, etc.), but they also lean on them for an emotional connection and/or love. At least I believe that my boys do.

Families of kids with special needs probably see the faces of these support workers, more often than 75% of their friends and family! One of the tough challenges that I have found in our experience of the past year, is how to define our boundaries with these individuals. Do we keep it entirely professional and no-nonense? Do we keep it cool and casual as you would with a friend? Or do you accept them into your home and lives as you would family? -they are probably already going through your refrigerator, chasing your kids into your bedrooms and playing matching games in the bottom of your closet, so how could you not accept them in that way? -I think the answer to that is to follow their lead. They too, are in a tough position. With my experience working in group homes with developmentally disabled adults, I remember how difficult it was to not form strong relationships with the clients. You needed to maintain a professional distance in order to save the client's and your own heart, when there will inevitably be a separation at the end of the shift, or at the end of the job. You don't want to be taken advantage of by the individual or by their families and you certainly don't want to get so emotionally involved that you take it home with you.

Well, I have to say that whether it is healthy or not, whether it is fair or not.. the people whose lives have touched ours so profoundly in the past year and a half are definitely those who shed a tear with us when Owen and Will have accomplished something new. They don't cry out of pity, but because they themselves are proud because all of their hard work with our kids has paid off. They know and may even have a glimpse, of how much it means to us as a family, that they have given us hope. They have helped Owen and Will discover skills that they never knew or thought they would have. They have developed their confidence, increased their sense of self and are moulding creative, little free-thinkers. The boys' personalities are shining through what once seemed like a foggy mist. They have given us Owen and Will. We are so grateful.

Tadaaaa!

I feel like such a bad mom. I've had Jake's Christmas concert posted for quite a while, but haven't yet done the same for his brothers. The nursery school held their Christmas Concert on December 21st. We all dressed up for the occasion and you could tell that Owen and Will were even excited leading up to their big performance. Grandma & Aunt Sally were our special guests and we were so happy to have someone there to share it with us. As you watch the many videos, I apologize for my brutal voice-overs but I honestly couldn't contain myself. I'm surprised that the camera held steady at all because I was blubbering so pathetically!

Jake behaved beautifully and sat alongside his friend, Ella to watch the show. **Please note that dressing our kids up in the same outfits as Owen and Ella was accidental. Lisa and I shopped together, but we didn't plan on dressing them the same that night! -Oh well, it made for cute pictures.

Here's what you've all been waiting for... the fabulous reindeer twins!

Aptly-named Owen as "Cupid" and Will as "Dasher"


"It's Time to Say Hello!"


"Will - S.A.N.T.A."

"our Owen - S.A.N.T.A."

"our friend Owen M. - S.A.N.T.A."




Cupid and Dasher make a dramatic exit on their sled

Owen is thrilled to be the center of all the attention!



"our friend Harry as Rudolph... check out his moves"

"take a bow, boys!"

There are still more videos to come, but I haven't yet uploaded them all. Can you understand why we are so excited?! The nursery school put in many, many hours of practice and it showed. It really felt like a magical night. The staff had invited their own families and friends and I think that it made the evening that much more special. To know that they were proud of what they had achieved, and wanted to share our boys with them, made me very happy. The extra people provided the perfect audience for all four boys to "turn it on" for them.

It's an amazing thing to see Harrison, Owen M., our Owen and Will, find such joy in watching other people's happiness in the form of their applause. There is no shyness, no ego, no stage fright. It's simply "do I wanna, or don't I" and fortunately for us, they not only wanted to put on a great show, but they were thrilled to be doing it.

I have taken such joy in having my three sons. There are moments when your heart feels like it might burst because you are so overcome with how happy you are and this night was one of them. One look at Owen and Will's faces when they leapt to their feet to clap for themselves or their classmates, was a glimpse into pure innocent joy and it's another reminder of how lucky we are to have these kids.

Happiness