Will's makes a cute crocodile.

By the way...

I've changed my job title. I'm no longer a stay-at-home mom, or a domestic engineer, or a house wife.

I'm a professional parent. With a fifth child on the way I'm also an executive professional parent.

I don't get why the government will pay a stranger to look after my kids, but they won't pay me to do it.

Hmmm.

fall beauty

Here are the newly redone urns at the front door. Why do I record these types of things? I guess it's because I want to be able to look back and know I really didn't live in the laundry room, or the car, or the kitchen sink.

Here is the view out front. We look over a cemetery. You would hardly notice that with all those huge and changing trees.

Removing boundaries.

When we brought Will to our very first meeting with a geneticist Will was only days old. As he sat contentedly in his car seat an older doctor told us things we had already read and then gave us a hopeful message that Will might one day bag groceries, or work in a funeral home, "because they are so comforting."

I wish we could have met someone like Ben Majewski that day.

Back to school means work for mom

Look at these happy back to school kids. It reminds me of the Staples commercial about "The Most Wonderful Time of the Year". It wasn't really Mitchell's first day, but he is on the leadership committee at school and was to be on hand to direct the grade 9 new comers around the sprawling school. Will is in grade one now and spending a whole day there now. Jack is happy with his grade 6 teacher and Olivia is looking like such an excited 9th grader, don't you think?

As has been the case for each year Will has attended some form of school (since he was one!) September usually brings a few hitches of some degree that require ironing out. This year is no different and small meetings about lunch/recess/toilet breaks have taken place. Most of my energy has had to go into dealing with the buses though. Today is designated letter writing day for me and I will be putting together an advocacy letter to send to the director of the bus company, the school trustee and the school superintendent. It seems that the regular bus cannot stop 50 feet from it's usual "set in stone until we say different" bus stop and let Will off on our driveway. We live on a road with no sidewalks and in the winter, snowbanks force the kids onto the road to walk home. Long story short, it is a recipe for disaster in my opinion. The bus company's only solution was to send out the "short bus" (We can see that budgetary constraints mean nothing when pride is on the line at he bus terminal. How much more is sending a bus on an additional trip twice a day for an entire year, as opposed to stopping a bus 50 feet from where it normally stops?) If the only solution to ensure my son is safe is to segregate him, we are moving backwards. How is taking a "special bus" going to help him develop important independence skills? What message does it send that the automatic default for people with developmental disabilities is to separate them from the rest of their peers?

So today it's me and the computer and some well chosen words to a few important people.

Monica and David

I learned about this movie through a diversity and inclusion conference happening in New Orleans for HR professionals. Mark received an email about it and was happy to see this movie about a married couple with Down syndrome included in the email. The story of Monica and David is a timely one for parents of younger kids, as it gives us an opportunity to see potential and set goals for independence. I would love for the staff at Will's school to watch this, to give them an idea of the vision our family has for Will's future. Will can only be bolstered by a community that has in mind a future with more options for him, instead of less.

I also was interested by the families of these adults who could admit that they are unwittingly participating in setting up boundaries for their children. I suppose when you envision a future for your child that involves limitations, you are suprised to arrive at a future where there is more possibility than you imagined.

Conny Wenk is at it again

capturing children and families in the most intimate and beautiful ways. I can't believe the talent Conny has with a camera. She was obviously born with the ability to focus in on a person's spirit and uses her camera as a way of conveying her gift with us.

Here is her new website dedicated to the beautiful spirits of children born *with a little extra*.

I'm going to bookmark it and visit often. It certainly is a day brightener, :)

Yes, I know the new school year is around the corner...

...but I thought better late than never for the June graduation pictures. Please don't hold my bad timing against me. It actually just seems like last week Olivia was all dolled up and looking like the lovely lady she really is. She graduated from 8th grade and looked so suddenly grown up. Both dad and I were so surprised and proud when she won the "Good Samaritan" award. Please notice the pink shoes. Olivia will want you to observe how ultimately cute her pink, peep-toe pumps are. She loved those shoes so much. We are trying to think when she will ever get to wear them again. It won't matter if she ever does wear them again, she'll find a place in her room to display them. She might even redecorate her room around them.



Here is the whole family, assembled and colour co-ordinated right down to the book-end purple accent children. We had to really rush the photo session because hello, the dance was about to begin and the dance took priority over posterity apparently.

Here is Will with his wonderful teacher and lovely aid under the graduation arbour. The very same arbour that big sister Olivia marched under the night before. Yes, our clan got a lot of use out of the beautifully decorated school gym this year.

Will, holding the ever important kindergarten graduation certificate. I don't know if they really let you into grade one without it.

It was during the kindergarten graduation that Mrs. B, Will's wonderful teacher interviewed each graduate and asked them what they wanted to be when they grew up. I was a little nervous as it involved an actual working microphone and a gym filled with staring and unblinking eyeballs all trained in on the interviewee. Will, the second interview, without missing a beat, loudly and confidently proclaimed he wanted to be a firefighter. Not even a "fireman", but the PC approved term "firefighter". Not every kid in the class was up to the task of the interview, but that day, Will certainly was. The audience was comforted with the fact that there were also 7 dentists, a police officer, 2 dolphin trainers and an astronaut coming down the pipe. Here is Will playing with his Little Village fire station. For Will, it's all about the firefighter right now. He loves watching Fireman Sam and reading the two measly fire fighter themed books we have over and over again.






Closely following the firefighter theme around here is Will's obsession with his guitar. Well, his guitar, and dad's guitar and big brother's guitars and dad's electric, do-not-touch-ever-if-you-know-what's-good-for-you, fancy Rock'n'Roll Hall of Fame electric guitar. He sings and strums and performs his travelling minstrel act throughout the house. Here, an open door allowed the neighbourhood to have their own private concert.

And here is my little punkin and me snuggled up at the cottage on a cool day. It looks like he won't be my littlest punkin for too much longer. He's going to be a big brother come January. Yes, my last little punkin will graduate out of grade 8 in 2025. Looks like we'll see a lot of that graduation arbour.

Happy Earth Day!

Easter fun

It was the most beautiful Easter in recent memory. Some thought it was freakishly warm, but any interview with a person with more than 15 Easters under their belt brought reminisces of warm Easters past. We were all enjoying the chance to actually wear Easter type clothing at Easter! We travelled on the Saturday and again on the Sunday to enjoy TWO wonderful feasts. Will enjoyed the egg hunt on Saturday (and again on Sunday morning at home.) The Easter Bunny has pared down his usual bounty of chocolate and goodies, which seemed just fine with everyone here.

Will knows to check out all the nooks and crannies for eggs.


Look at the booty!


Jack enjoyed rounding up a few for himself too.


As with all of our family get-togethers, some sort of physical activity becomes competitive and most partake in showcasing their prowess. This year a few egg-hunt skipping ropes were pressed into duty for an all-out skills competition. There was group skipping, singles, double-dutch. The older ladies (like me) participated with remembering old skipping songs. I took lots of pictures, but I think that some of my non-kid relatives would kill me if I posted them here. Let's just admire the height Jack can get when he skips:

Hershey's Better Basket Blog Hop

I've been kind of shirking my blogging duties over the past year or so. I've sat back down and started to be a little more productive, started snooping around at familiar old blogs and discovering some new and exciting blogs. Because of this absence I can't wait for someone to send me a lovely virtual Easter basket from Hershey's, I'm just making one myself to forward along in the blogger world I haven't been a part of for so long.

Anyway, the point of this is to raise money to the Children's Miracle Network, which benefits children's hospitals across North America. For each blog that forwards a nice Easter basket, Hershey's will donate $10. to CMN.

Here is my yummy and entirely calorie free basket:

Well, OK, why stop at a Easter basket when they have invented such a thing as an Easter hamper? Here are enough Easter treats for all the kids and your extended family who are coming over for dinner.

To participate in this fun fundraiser the rules are as follows:

HERSHEY’S BETTER BASKET BLOG HOP RULES

-Copy and paste these rules to your blog post.
-Create a blog post giving a virtual Easter Basket to another blogger – you can give as many Virtual Baskets as you want.
-Link back to person who gave you an Easter Basket.
-Let each person you are giving a Virtual Easter Basket know you have given them a Basket.
-Leave your link at BetterBasket.info/BlogHop comment section. You can also find the official rules of this #betterbasket blog hop, and more information about Better Basket with Hershey’s there.
This started as a meme of Hershey donating $10 per each blog participating to the Better Basket Blog Hop to Children’s Miracle Network up to $5,000 – but after so many bloggers participating, Hershey decided to donate a total of $7,000 honoring the kindness of blogger community .

Now for the fun part...sending off my Easter Hamper. I wonder if these folks will remember me?

Melissa at Banana Migraine

Christina at Prince Vince Meets the World

Somebunny's ready for Easter.

Laundry room project.

All through the winter a skilled handyman has been working away on creating my laundry room vision. He is a firefighter who likes to fill his off hours with odd jobs. Odd jobs are usually something I can come up with, so we embarked on the project without knowing exactly where it was going to end up. It was odd to jockey piles of laundry around my trusty handyman, I never knew exactly when he was going to show up, so there would be inevitable piles of clothes strewn across the room each time he arrived.

After a couple of months it is finally finished and we are both pleased with the results. After contemplating a number of different types of counter tops I settled on stainless steel. I did this because a) I was on a house tour and saw a laundry room with stainless steel and liked it. b) It was cheaper than some of the alternatives I was considering. c) What could be more practical than stainless steel? I was lucky that my handyman new a sheet metal worker who bent the steel for him and charged us cost for the single sheet of stainless I required. Had I gone through a kitchen remodeller it would have been an entirely different story. I knew I wanted white cabinetry because it has a clean look and it is a dark, windowless room. This is the room lit with flourescent bulbs, which don't seem bright enough for me, especially for a workspace such as a laundry room.

We can all be a Patron of Art :)

Spring fashion show

I totally missed World Down Syndrome Day on the 21st. My very bad for sure. We did celebrate by having a wonderful dinner with two other families that are very dear to our heart. They always swoon over Will during our visits, so I think that qualifies as some sort of WDS day celebration. (They all totally celebrate Will...but they do everyday of the year. That's kind of the point isn't it?)

I love how Conny Wenk celebrated World Down Syndrome Day...by attending a fashion show *with a little extra*.

You must visit Conny's blog.

A trip to Whistler.

Mark and Mitchell and Jack had a few days of male bonding out at Whistler. It was nice that March break coincided with the Paralympics. Everything was sold out so the boys had to be happy with medal presentations, which they could stroll to in the village apres skiing.

climbing high above the tree line to the top of Whistler.


Mitchell and Jack at the top.


The gondola ride over to Blackcomb.


Mark, Mitchell and Jack.


Awards ceremony in the village. There were lots of screens to watch the action which was good because the guys were way at the back of the crowd.


This is how Jack does apres ski. Looks like he is struggling to keep the peepers open.

What do you do when people FIGHT for the right to insult your child?

Family Guy. Admittedly I have never watched a single episode of it. I made the presumption that it would be the same as picking out a seat at the back of the school bus. The spot the sixth and seventh grade kids like to occupy. I'd go to the dentist's chair before that bus seat.

It has come to my, and just about everyone's attention that in the latest episode, written by Seth MacFarlane, featured the voice of an actress with Down syndrome to play the part of an animated woman with Down syndrome. The writer of the show slyly used Andrea Friedman to lob a bomb at Sarah Palin, and her son Trig. Andrea played the part of a date to one of the Family Guy's main characters. Here are the words to the song played on the show, to give you a better feel for the episode:

“You’ve got to look your best tonight, you tubby little parasite
‘Cause there’s a lovely lady and she’s waiting for you.
And though her pretty face may seem
A special person’s wettest dream
Before you get to see it there are things you must do.
We’ll try a tie, and boutonniere of yellow.
A rose that shows that you’re a classy fellow.
With a posh panache of Jefferson at Monticello,
Busting out a mile with style.
I know you just can’t wait to stare
At all that luscious orange hair
But boy before you touch a single curl
You must impress that ultra boomin’,
All-consumin’, poorly groomin’
Down syndrome girl.
On any normal day you reek
As if you’re on a farting streak,
Your fingers up your nose and you are dripping with drool.
But if you want a lady’s love,
You’re better off by smelling of
A gentleman’s cologne instead of sneakers and stool.
A squirt, a spurt of something just for Ellen
And you’ll see that she will find you so compellin’.
And she does because the only smell that she’ll be smellin’
Won’t be comin’ from your bum.
You want to take that little whore
And spin her on the dancing floor
But boy, before you do a single twirl –
You must impress that effervescing,
Self-possessing, no-BS-ing
Down syndrome girl.
Her eyes are emerald portals to a secret land of love
And her smile is like the sweetest summer flower.
Her kiss is so inviting, and her hugs are so delighting.
And what makes them really nice is that they’ve got a little spice
Because they’re tighter than a vice and they go on for an hour.
My boy, between the two of us we’ll get you on that shorty bus.
And then you’re going to take it for a whirl.
Now go impress that super-thrilling,
Wish-fulfilling, Yoo-Hoo-spilling,
Ultra-swinging, boner-bringing,
Daily singing, ding-a-linging
Stupefying, fortifying,
As-of-Monday-shoelace-tying,
Stimulating, titillating,
Kitty-cat impersonating,
Mega-rocking, pillow talking,
Just a little crooked walking,
Poorly pouting, boobies sprouting,
For some reason always shouting,
Fascinating, captivating,
Happiness and joy creating
Down syndrome girl

Sorry.

Don't you feel uncomfortably juvenile after that?

This is just the latest in an ongoing media battle with Sarah Palin. We all know that the media will find a tender spot and do it's worst. Apparently Trig is the open door for the media fanatics who disagree with Sarah Palin's politics. Unfortunately the media types are unaware that moms of kids with DS have been complaining about the r-word ad infinitum for years. There are hundreds of articles and blogs and organizations and self advocates that denounce the use of the r-word. Why is Sarah Palin not allowed to?

Well, she is. Just like any mom of a child with Down syndrome, it is her duty to. But the media is going to use Trig, just like the writer of Family Guy used Ms. Friedman, to take down Sarah Palin. It's too bad for all of our kids that the media's modus operandi has to come at a cost to all of our kids. You may dislike Sarah Palin, but how can you not despise the media for how they are dealing with this? Ms. Friedman defended her role in a statement to the NYT.

I guess former Governor Palin does not have a sense of humor. I thought the line
“I am the daughter of the former governor of Alaska” was very funny. I think
the
word is “sarcasm.” In my family we think laughing is good. My
parents raised me to have a sense of humor and to live a normal life.

Supposedly she went on to add:

My mother did not carry me around under her arm like a loaf of French bread
the way former Governor Palin carries her son Trig around looking for sympathy
and votes.

I have a hard time believing those are Ms. Friedman's thoughts. Maybe they are, but they are ill-conceived. I have a hard time believing that Ms. Friedman dismisses her own mother's love and support as part of her own success. Her words belie her role as a self advocate when she says "...looking for sympathy...". If the very appearance of a person with DS evokes "sympathy" to Ms. Friedman she hasn't come very far has she?

As I mentioned, advocating for people with Ds has been around a lot longer than Trig Palin. Parents of kids with Ds pick up the torch the moment they realize that in a world that supposedly embraces tolerance and diversity and acceptance, kids with disabilities get the chump change leftovers after homosexuals/blacks (and other liberal pet diversities) get their pieces of the tolerance pie first.
What kind of mother would I be if I did not stand up for my kids? My son’s siblings might also have something to say about the elementary school humour (scratch that, of all the schools my kids have attended, they have never heard such demeaning, low-brow humour).

There is no hay to be made with this type of humour, just political points. If this is MacFarlane’s politics then let everyone know. Let the world know that this is the currency of the left, to marginalize and manipulate, to belittle and condemn. Make that the headline here, not that Sarah Palin is writing the exact same thing that parents of kids with Ds have been writing/publishing/blogging about for YEARS.

I suspect that Friedman is unaware of how she has been used by MacFarlane. I fault her parents for that. Self advocates who have Ds have spent tireless hours raising awareness, raising expectations and demanding respect for people with differences. I can’t imagine they look upon the Friedman family’s tradition of humour as anything but a slap in the face.

Nevermind though, parents like us will keep fighting to raise the the bar in a world that embraces the most base thoughts. Some of us parents blog away to an audience of a dozen, some of us write to an audience of millions. God bless us all.

Superbowl

You probably don't ever have the cause to call your cousin to ask to borrow a trap, but that is what I did on Thursday night. Olivia is working on a history project in which she is George Simpson, trapper, governor, businessman. She needs to come up with a pizza box "suitcase" of the person she studying. Luckily I have a cousin who took over the family trapping business from my grandfather and he could spare a trap and a muskrat pelt.



You probably don't ever have cause to call your cousin to ask to borrow a trap and it turn into a Superbowl party either. Things happen like that in families, and we we happy to have the house filled with relatives. There, of course, was lots of food and a pre-game trip to the pond for some hockey (in Canada it can't ever not be about hockey right?) It was very cold out, but the sun was strong enough to melt a small section of the surface of the ice. Will joined the exuberant hockey players, but stayed off to the side lest he be checked by the big kids.


Jack plays goal.


Game on!


Will faces off!


Will and cousin Kelsey go for a ride thanks to Olivia

Taking the time to....

...Enjoy the Small Things.

We are all in for a treat when we visit Kelle at Enjoying The Small Things as she is a new mommy to a beautiful little girl who was born *with a little extra* and an awesome photographer. I so loved reading her account of little Nella's birth story as so many of her observances seemed very familiar to me. It's been nice for me to have a reminder of Will's arrival in our life. This hugely momentous occasion had a funny way of fading into history. At the time Will was born I thought that my world had changed so much is was permanently shifted on its axis. Months and years float by and when you think to take stock you realize that everything has realigned back to normal and squeezing an orthodontic appointment in before the kindergarten bus arrives is now your life's drama.

Congratulations to the newly expanded family at Small Things. :)

This is my first post of 2010!?

Well, I can say that life has not slowed down at all with the new year. I am basically a single parent Monday-Friday while hubby works in the States and that is a tough role to fill. Now I will never take Mark for granted knowing how much easier things seem to run when he is here.


I have had trouble getting Christmas pictures posted because Will has learned where the tiny little trap door of the camera is that hides the memory stick. We found the camera abandoned upstairs, minus the memory stick. I have just found it and downloaded it and for some reason I cannot find the pictures anywhere in the computer. I'm sure Will is responsible for that too. ;)

Before I post any pictures I just have to let you drool over this picture of my friend's house in Ohio. She did not give me express permission to post it here, but I can't be the only one to drool jealously over it!

How gorgeous is that? I hope she makes it the front of her Christmas cards next year!

I don't even think I took a picture of our house this year. I usually do, to mark our journeys and Christmases at various homes. I did take a few pictures inside though (not as many as Will did...when we found the memory chip he had been busy taking over 100 waist-height pictures all over the house.) Most of them were wasted shots of baseboards or close ups of furniture, but some of them were really good!

Here is a quick picture I took of the kids by the tree.



Can you spot Will, one of the three kings to visit Jesus and Mary and Joseph in the manger? Will really enjoyed his role in the kindergarten Nativity play.




Here are Jack and Will helping in the barn when they visited the farm over the holidays. Some of the cows were freaked by the appearance of strangers coming into the barn. They seemed right at home with Jack though, who is a miniature version of his Papa, so they let him walk up and down the alley to give them some hay.

The holidays felt like real holidays this year, with more time to linger at home and much shorter trips to make to visit family and friends. We ended the year with a fun family bowling match with two other families. It was a lovely evening that ended at our friends home with good company, food and a great Canadian Junior hockey match on the TV.