Spring is in the Air - Easter on the Brain

It is difficult to be motivated to get on the computer to blog when it has been so nice outside lately. Calgary has finally had a dose of spring. Sweet revenge after having to deal with snow while Ontario went through their mini heat-wave. The birds are in full force in our backyard, their singing wakes me up every morning before 5am, but I don't mind. What I do mind, however, is how our longer days are affecting Will's sleeping habits. It's nearly 9:30pm and it's still fairly light out. Will is still up. I suppose it's better than a 1 or 2am wake-up, but it has messed up our schedule. As the nights will take longer and longer to darken, I anticipate that Will will take longer and longer to fall asleep. Oh well. That's a whole other blog topic.

This dose of spring weather has me feeling like it's time that I hurry up and post our stuff from Easter. So this is Easter Sunday, part 2.

(Sorry about the smudge on my camera lens) Owen M. loves posing for my camera

Lisa, Craig, Owen & Ella enjoyed us for a lovely day. We sent the men to hide some pre-stuffed plastic Easter eggs in the playground (5 doors down). Each of the kids had their own pre-determined colour of egg to search for, not that they followed the rules and the idea was that the colour-specific eggs were also specifically filled with stuff that each child preferred. Our Owen, for example, does not eat candy so his egg was filled with cotton balls, feathers and the like - all things that appeal to him.

I wish I had taken a photo of Owen holding Greg's hand as we walked to the playground. Owen really seems to love Greg and it's really sweet to watch.

We were joined by Sally and Greg, who arrived with a bag of springtime goodies - perfect gifts for Easter. Sidewalk chalk, kites and bubbles. You can see that the bubbles were a hit.

Jake's friend Kirkland happened to be at the park with his little sister and father, as were our next door neighbours and their little granddaughter. It made our time at the playground that much more fun.

Little Miss Ella-Belle is a smart girl - she already has the boys working for her!

Truth be told, the eggs were fun but weren't nearly as appealing as the swings or the slide. Will is always a worry when he's near the swings. He likes to play a little unconventionally.

There is a lesson to be learned after a day like this. Kids don't need lots of gifts or loads of candy to enjoy a holiday. A day in the playground under the shining sun is enough to give them a memory that they won't soon forget.

Happy & Will Knows It

Diane has been visiting with us but she goes home today :( We are always thrilled to have her with us and you can tell by the boys' smiles and giggles that they love their time with her as well.

Check out Diane singing Happy and You Know It with Will. He loves his music.



Don't worry Courtney- (the boys' aide from school)- he still loves your singing just as much.



Note the white wet stuff falling from the sky- that was Friday. You might also notice Will's obsession with keeping his sleeves pulled up.

The Things Jake Says

The kid cracks me up. Today we drove into the mountains and went for an amazing little hike around Johnson Lake. Johnson Lake is in Backcountry Banff and is right near the Minnewanka interchange off the TransCanada, right before you head into the town. But this isn't about where we went. I'll get to that later. So before we went on our little hike, we stopped to read an information sign/display that showed pictures of points of interest about the area. Jake was especially preoccupied with the pictures from a fire that occurred in the area in 2003.

Jake on top of the hoodoos, overlooking the TransCanada Hwy, facing East towards Canmore

As we were hiking up one of the trails, Jake turns to me and says "Mom. Did anyone die when there was the fire?" and I replied that I wasn't sure because I hadn't read the sign. Jake stopped in his tracks and says to me "MOM! Didn't anyone tell you that you're supposed to read the fine print!!!"

He's pretty good at making me feel like an idiot. But because he makes me laugh at the same time, it's all good.

One Proud Cookie Monster

Okay. This is another post about food. I apologize if you find it boring to read about a little boy eating a 1x1 cm nugget of food. But if there is anything that we have learned in the last few years of parenting these little boys, we have learned to celebrate every achievement. For Owen's family and his team of therapists (Erin, Marci & Lindsey).. we don't just celebrate, but we like to brag as well.

The other day during Owen's therapy, Erin worked with him on a new 'assignment'. Baking cookies was on the agenda. Cutting the dough, placing them on the tray, putting them in the oven, having to wait and watch the timer until they were ready.

The most challenging step for Owen would have been to spread the icing (this would typically repulse him), then to decorate the cookies with candy.



There were never any expectations for Owen to eat anything. Again, this effort was just another piece of the program to help Owen to become more comfortable working in the kitchen, with food. Check out how Owen exceeded our expectations:

Owen surprised us all by grabbing one of the cookies and helping himself. Erin (on the left) really was cheering inside. Marci (on the right) will never know how far Owen has come with this because she just started with us, but she was happy as well.

Do you know how hard it is to have not cheered when he was eating that thing? We had to play it cool though so that we didn't make a big deal of it and scare him off. SOO HARD.

It's so hard to believe that this is the same little boy from last September. I dare you to tell me that he doesn't have the awareness to feel proud of himself. Look at that face.

The grand finale is Owen serving everyone in the house the product of his hard labour. Any time there is an opportunity for any of my boys to feel like they are contributing something to the whole family, it honestly warms my heart. Because in the past, these moments were more than hard to come by. I can't say thank you enough to Owen's team for helping Owen to find a new way to connect with the rest of us. It might just seem like nothing but cookies, but every baby step is a step closer...

...and let's just ignore the fact that Will could have cared less about Owen's generosity, he only had eyes for those cookies...

Chocolate for Breakfast

Happy Belated Easter! I think this is becoming a habit.. this 'belated' business.

I'm too tired right now to back these pics and vids with words.. I promise to update it tomorrow for you. Enjoy!

This is what Owen likes to do during the Easter Hunt


I swear that Jake has clothes that fit him

Spoiled rotten by the Easter Bunny

Forget searching for more.. let me eat these one treat at a time

Will playing with blocks that the Bunny left for him

Tastes Good! - Apple Gingerbread

It's a daily struggle to find foods that everyone in the house will like. That battle is so much harder when you've got kids with sensory issues around food. Both Owen and Will are low in iron and a year ago, Owen was so anemic that it prompted a personal phone call from a technician who was working on our blood samples for an Autism study.

Lisa gave me this recipe after seeing that Will enjoyed it as a snack at pre-school one morning. Owen still won't go near it (because it crumbles & makes him throw up to touch it), but Jake and Will are gobbling it up. What makes this recipe so good is that it's healthy, it's a total comfort food and it has a great boost of iron from the molasses. It also makes your kitchen smell nice while you're baking it....


Apple Gingerbread
Preheat oven to 350 degrees F (180C)
13- by 9-inch (3.5L) baking pan, greased

2 cups all-purpose flour (I used whole wheat) 500mL
1/4 cup granulated sugar (I used raw) 50mL
2 tsp baking powder 10mL
1 tsp baking soda 5mL
1 tsp ground ginger 5mL
1/2 tsp ground cinnamon 2mL
1/2 tsp ground nutmeg 2mL
1/2 tsp salt 2mL
1/2 cup butter or margarine 125mL
2 eggs
1/2 cup molasses 125mL
1/3 cup 2% milk 75mL
1 medium apple, peeled and grated

1. In a bowl combine flour, sugar, baking powder, baking soda, spices, and salt. Set aside.

2. In a large bowl with an electric mixer, cream together butter, eggs and molasses. Stir in dry ingredients, a little at a time, alternating with small additions of milk. Fold in apples. Pour into a prepared baking pan.

3. Bake in oven for 35 minutes or until cake tester inserted in center comes out clean. Cool on a wire rack before cutting into 15 pieces.

Kitchen Tip: Serve with applesauce, sweetened whipped cream or Caramel Sauce.

Nutritional Info: Energy Protein Carb Fat Calcium Iron
Per Piece: 173Kcal 2.9g 23.7g 7.6g 12% CDV 27% CDV

Enjoy!!!!!!!

Yes.. We Watched It

I wrote the title of this post hours and hours ago, but left it blank. I thought I would come back to it later this evening, full of opinion and personal commentary after watching Oprah's show on Autism. But now here I am, it's already 12:30 and I've put it off all day. The show has really put me in a funk. A feel sorry for myself and for our family funk and I just don't want to talk about Autism anymore today.

So yes, we watched it. I thought it was a great piece for awareness and I'm grateful that Oprah finally did a show on the topic. But watching it has messed up my head a bit and stirred up thoughts and feelings that I'm too tired to think about. So I'll sleep on it and I'm sure tomorrow I can detach myself enough to talk about the show.

I still have plans to someday catch everyone up to speed on some big stuff that's been going on since Christmas, but this blogging thing isn't as easy as it looks. I've got a long list of things I want to post on here, mostly to document it for us. But instead of waiting for the perfect day when I have to time to post what I want about the twins' 4th birthday (which happened in January).. I'm just going to put up one of my favourite videos from that day, without all the other stuff to go with it. Next time.

Owen, Will & Owen M. enjoy the Ball Popper

More Autism In The News

This news item is not only exciting for its content, but I was excited to look it up online and see Will's image on the screen. It seems that Global and CTV news are still using Owen and Will's film coverage from back when we did the press conference:


Senate committee urges national autism plan
Updated Fri. Mar. 30 2007 9:10 AM ET

Canadian Press



OTTAWA -- Canada should develop a national plan to deal with autism, including new measures to help families saddled with huge bills for therapy, a Senate committee said Thursday.

A report of the upper chamber's social affairs committee said Ottawa should convene a federal-provincial-territorial conference to produce a national plan to deal with autism and to decide how much money Ottawa should contribute to the campaign.

The plan should include a public awareness and educational campaign, money for a national research network and tax breaks and other help for families.

"We feel it is time for the federal government to move on this issue," said Senator Art Eggleton, the committee chairman.

He said there are almost 50,000 children and 150,000 adults with autism in Canada.

"This is simply too many people to ignore."

The report said the families of children with autism especially need help because medicare doesn't pay for the intensive therapy used to treat the problem.

"The behavioural therapy for autism is very expensive but the results can be significant, particularly if the treatment is available at an early age and is intensive," Eggleton said. "This comes, however, with a considerable price tag.

"We must do something to relieve the financial burden which this places on families."

The report said families may end up paying as much as $60,000 a year for therapy. Some lose their houses as they struggle to foot the bills.

The most intensive therapy goes well beyond normal health care to include medical practitioners, psychologists, psychiatrists, speech -language pathologists, occupational therapists and special education providers.

To help with that burden, the report said, autism should be classed as a disability for the purpose of tax breaks and federal aid.

The committee heard testimony from health professionals, researchers, advocacy groups, families and autism sufferers themselves.

Eggleton said the latter group offered "profoundly moving" testimony.

The report says autism is a troubling condition because there are disagreements over how to define it, how to treat it and how prevalent it is.

"This highlights the need for a strong foundation of autism research," said Senator Wilbert Keon, deputy chairman of the committee.

He said there are many questions still to be answered.

"Has there been an increase in the rate of its appearance?" asked . "We're not quite sure whether there's just better diagnosis or an increase in prevalance.

"As well, the cause or more likely the causes, of autism remain unclear. Although we have identified a genetic component, this is clearly not the end of the story. A lot more research is needed."

Autism In The News

Well this is frightening to think about...

"Autism a lifelong burden, study shows
Because few adults with the disorder can work, the economic costs continue
ANDRÉ PICARD

From Tuesday's Globe and Mail

Each child diagnosed with autism will accrue about $3.2-million (U.S.) in medical and non-medical costs over his or her lifetime, according to a new study.

The most expensive components are lost productivity and adult care, not medical costs and behavioural therapies that so many parents crave for their children, the research shows.

"Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," said Michael Ganz, an adjunct professor in the department of society, human development and health at Harvard University in Cambridge, Mass., and the lead author.

Earlier research estimated that autism costs the U.S. economy about $35-billion annually, and the Canadian economy $3.5-billion.

The new study, published in today's edition of the Archives of Pediatric & Adolescent Medicine, takes the analysis further, examining how these costs are incurred throughout the lifetime of a person with autism.

The study showed that direct medical costs were high in the first five years of life, at about $35,000 annually. That is when most behavioural therapies are offered. The indirect costs to parents, in large part due to lost income, are also quite high in the childhood and adolescent years, averaging $43,000 annually.

But, as a person with autism ages, the costs of non-medical care soars, and so do productivity losses.

Because there are programs for autistic adults, these are paid out-of-pocket, with costs averaging $27,500 a year. Many people with the disorder do not work and their parents still need to provide care, factors that translate into economic losses averaging $52,000 annually, according to the research.

Susan Bryson, who holds the Jack and Joan Craig Chair in Autism Research at Dalhousie University in Halifax, said the research is important because it draws attention to adults with autism.

"The data we have tell us that only about 5 per cent of adults with autism are self-supporting," she said. Yet there is a paucity of adult programs, and this creates a life-long burden for families."

Dr. Bryson said it is not clear if investing in behavioural therapy like ABA/IBI in childhood will ultimately result in adult autistics who are more able to be independent and to work.

"But we need to ask the question: Does investment early on have significant economic benefits later?" Dr. Bryson said.

Dr. Ganz said recognizing that a child diagnosed with autism today may become an adult who is unable to work and who requires specialized adult care should awaken parents to the need for financial planning.

"Parents of children with autism should seek financial counselling to help plan the transition into adulthood," he said.

To conduct the research, Dr. Ganz looked across the lifetime of a hypothetical group of individuals born in 2000 and diagnosed with autism in 2003.

Only costs directly related to autism were included, with no medical or non-medical costs incurred by individuals with or without autism included.

Autism and related conditions are development disabilities known under the catch-all term autism spectrum disorders.

They have become increasingly common in recent years.

The soaring numbers are due to a combination of factors, including greater awareness, changes in diagnostic criteria and, perhaps, more children being born with the disorder.

The Autism Society of Canada estimates the incidence rate in this country is one in every 286 births. The condition is about four times more likely in boys than girls.

It is not clear what causes autism spectrum disorders, but there are many theories, including exposure to environmental toxins, diet, a malfunctioning immune system and paternal age.

(There are those who also believe that autism can be caused by a mercury derivative that used to be found in childhood vaccines, but that theory has repeatedly been debunked.)"

More Owen.. this time Singing

We'll try to make tomorrow's posts all about Will, in case he's jealous of all of the coverage his bros. are getting.

I can't help sharing these two videos. They both highlight Owen's efforts at speech as well as his attention to the songs that are being sung. Jake is an amazing brother to Owen and Will and we love him for how hard he tries to keep them involved and entertained.

Enjoy!


Erin works with Owen on some speech. Listen to Erin and Owen sing "Puff Puff Toot Toot!"



During a recent visit, Grandma got to snuggle with Owen & Jake on the couch while having a sing-song.

Owen Eats! -Dinnertime

Wow.

Looking back over the last months, we've come a long way from the days of counting Owen's ribs and cheering him on because he actually ate an 1/8th of a banana. Since Owen's feeding program began back in October, with Erin's gentle and persistent encouragement, we have watched Owen transform from a little boy who gagged at the sight of most foods, who might throw up when touching a food that jiggled, who wouldn't drink any liquid besides milk, or who could scream bloody murder if he was forced to sit at the table with a plate of food within his line of vision.... to a confident little man who will experiment and taste almost any food put in front of him. Owen now at least 'nibbles' freely from a list of nearly 20 foods that includes asian pears (apple-pears), the white of a hard boiled egg, grapes, strawberries, yogurt, pretzels and even suckers! -This is a kid who never eats anything sweeter than a banana. He also drinks 2 1/2 oz. of Ensure in every bottle of milk and this has definitely helped to add some weight.

In the course of five months we discovered (in passing) that Owen didn't know how to bite, therefor chew - his food. In working with Owen's aide and speech path, they have been helping him to work the jaw muscles and actually use his teeth to bite his food. How we didn't notice before is beyond me. But this new 'skill' has greatly increased the amount of food that he eats.

We also discovered that Owen can't, or won't, bend his neck backwards. We always noticed his little oddities of laying on the floor to drink his bottle, or the way he cocked his head to the side to look up at us, but it never occurred to us that it was because he couldn't tilt back his head. Jonathan noticed it one night while playing monkey in the middle with one of the boys. Owen sat in the middle, giggling and squealing with every ball toss, but whenever the ball flew overhead and not along his line of vision, he didn't follow it. With this discovery, we presented it to O's physical therapist, who proposed some exercises to build strength in his neck muscles. We're also pretty confident that the problem is not necessarily simply a p/t thing, but he definitely has proprioceptive issues.

*Proprioceptive System: The proprioceptive system refers to components of muscles, joints, and tendons that provide a person with a subconscious awareness of body position. When proprioception is functioning efficiently, an individual's body position is automatically adjusted in different situations; for example, the proprioceptive system is responsible for providing the body with the necessary signals to allow us to sit properly in a chair and to step off a curb smoothly. It also allows us to manipulate objects using fine motor movements, such as writing with a pencil, using a spoon to drink soup, and buttoning one's shirt. Some common signs of proprioceptive dysfunction are clumsiness, a tendency to fall, a lack of awareness of body position in space, odd body posturing, minimal crawling when young, difficulty manipulating small objects (buttons, snaps), eating in a sloppy manner, and resistance to new motor movement activities. (http://clsf.info/Articles/Sensory_Integration.htm)

...after a few months of exercising the neck and building trust to allow Owen to feel comfortable enough to let his neck relax enough to let it fall back a little, we are finally starting to see the subtle improvements. All this is to explain that this is partly the reason why Owen has never drank out of a cup. Besides the fact that he is attached to that darn bottle. Drinking out of a cup is being worked on in his program now as well as the re-introduction to other liquids such as juice and water.

What is so amazing to me is the difference in Owen's attitude around food. He is as comfortable eating new foods as he is spreading peanut butter on toast (that he toasted), mixing, stirring and cutting. Just look at this photo taken at the beginning of his program back in October. His expression clearly shows his disgust (although he was still willing to try), at dipping his finger in coloured yogurt.

Now check him out:

We are so proud of him and we're so grateful for all of Erin, Glen and Lyndsey's hard work. Thanks to them, meal time is much more enjoyable.

Dinner Time in our Household now:

All of this progress doesn't mean, however, that my job is any easier. It's actually harder. 4 different meals to be prepared at every sitting. But I grin and bear it (try to, anyway). Seeing Owen smiling at the table is our reward.

Dancin' Leprechaun

This past weekend marked the introduction of Jake's Happy Feet to the world of Irish Dancing. Jonathan and I signed him up for this activity for a few different reasons. Number one being the fact that it was only a one minute drive away. Number two because Jake loves to perform. And number three because the instructor is a friend of Sally & Greg's daughter and she just got home from performing for two years with the Lord of the Dance tour.



It's only been a couple of months into lessons and he's having a good time at it. You might not be able to tell from the photos and vid, but I assure you that it's merely a reflection of the "6 is the new teen" 'tude when you're too cool for everything.

Jake requests that everyone refrain from asking for autographs. He's exhausted from the dancing.

Happy Anniversary!

So I just realized that this week marks my 1st year anniversary writing this blog. I'm pretty proud of myself that I've stuck to it. I'm not nearly as dedicated to it as I would like to be, but I do my best. Not to mention the fact that I still have the big events from Christmas until now to post about (and I still plan to because we've got some great pics and videos to share).

Blogging takes up a lot more time than I thought it would. It's not so difficult to just throw out a few words every couple of days, but those words carry consequences. I need to be mindful of who might be reading them. I need to remember to be respectful of the readers (does my minister read this? old employers? old teachers? the kids' teachers?). I also need to be respectful to my boys. There have been some crazy things that have happened in my household that would make for a very entertaining story, but will my boys hate me for sharing it?

This week the boys are all off for Spring Break. Jonathan is off for the week. Owen and Will still have therapy going on in the afternoons, but there is no school in the mornings. This means a bit more time for me not having to drive all over the city, which means maybe some more time to blog. I want to try to do some reminiscing this week and maybe figure out how to pull out my favourite blogs of the past year so that they can be highlighted on the side panel of this page.

If we have any regular readers out there (or new readers).. could you do me a favour? If you remember any particular posts that really stuck out in your mind over the past year, could you drop me a comment to tell me which ones? I have decided that in honour of our 1st Year, I'm going to mail out prizes to the first 5 people who comment on the blog. Even if you can't think of a favourite post, drop us a comment to let us know you're out there! If through your comment, I don't have a way to contact you, please also drop me an email at staceyfh@hotmail.com so that I can get your mailing info for your prize.

Thanks for your support this year!