Happy Heartiversary, Aidan!

Yesterday marked the 5 year anniversary of Aidan's heart surgery. We made a cake together, complete with bandaid:



We sang, "Happy heartiversary," Flintstones style.  Then we all helped to blow out the candles.  Afterall, we were all in it together. 

 Aidan clapped...but wouldn't eat any of the cake.  Or taste the icing. 

We will continue to celebrate as much as possible, because everyone out there who's gone through something like this, knows it is pretty much life changing.  Being in the Pediatric ICU for that little amount of time was the most humbling experience of my life. 

Liam, the middlest of billy goats, was playing piano on the weekend.  He was playing a medley of songs that he knows.  During the Buffalo Hunt, he said, "this was how fast my heart was racing waiting until Aidan had his heart fixed."  Then he moved into Somewhere over the Rainbow - "and this is how joyful it felt when he was done."

Amen to that middle billy goat.  Amen to that.

How do you do?

Picture this:

A circle of moms chatting outside the school doors after the classes have filed in.  Aidan marches into the circle and proceeds to shake hands with each mom.  Insert a cute little chuckle attached to a blond-haired, blue-eyed, sweetie boy.  He knew he was being charming. 

Aidan's accomplishment?  Wrapping my friends around his little finger right along with me.

(BTW - the photo is an old one - but I love it!)

Kinder visit

Aidan and I are venturing into unknown waters next Friday.  He will have his first day of kindergarten at the same school his big brothers attend, and I will be off to teach my first class at the university.  It is truly fitting that we are sharing our first big day, as he was born on my birthday - and has truly become my sidekick over the past five years. 

On Thursday we went to visit with the kindergarten teacher, and I just wanted to highlight a few of the beautiful things she did to welcome Aidan (and me) into her classroom.  Why do I want to do this?   Because we (parents) often express what teachers are NOT doing right (me included). . . rarely do we shout their praises - and I think it's important that we have a model of excellence out there in the blog world.

One.  Mrs. F. greeted Aidan and got down to his level (which he promptly copied and crouched down too).

Two.  Mrs. F. said how excited she was to have Aidan in her class, and how she was busy preparing her classroom with things that would be developmentally appropriate for him.  She showed us a few of the items and Aidan had an opportunity to engage with them.

Three.  She had a gift for him wrapped in red tissue paper.  Not that I believe teachers need to give gifts to their students, but the way she gave it was really nice.  It was a gift for him to open and keep at the classroom.  Something to share with the other students.  BTW - Aidan played with the paper, shredding it and throwing it in the air.  He couldn't have been happier.

Four.  Mrs. F. asked me how I was feeling about Aidan starting school.  She reassured me that he was going to be very loved, and that he already was loved by her.  She shared a story of her own attachment to her daughter, now in her twenties, and of her own feelings of separation.

Five.  She told me that if I ever saw something that she was missing in her teaching of Aidan to let her know. 

Including Aidan - and things that keep me up at night

I recently spoke to an elementary special education class at our local university as a follow-up to the viewing of the documentary:  Including Samuel.   I was invited as someone at the beginning of the school journey; and, was joined by two other moms whose children had been in the system for a while. The professor had this poster outside of her office door:

I must say, I smiled wide when I saw what (and whom)she'd added to it. Funny, but when I first saw this poster, it was in the hallway at our local elementary school, and I remember thinking, "that's interesting, we should make a similar poster with Aidan on it."

Then, during our discussion, one of the guest speakers spoke about "normalcy" and not separating our children with special needs out.  She is an advocate for as complete inclusion as possible.  Her daughter is not pulled out of the class for most therapies - those are done at home.  She spoke about how important it is to her that we NOT make our children the "poster child" for disabilities.

Hmmm.  Suddenly I had to re-think everything I've been doing since Aidan was born.  So far his photo has been on the side of a bus, in the paper, and he's been on television three times (twice about Music Therapy, once for the Telus Flight with Santa).  I post his photo all over our flickr family page, and have joined three flickr groups about Down syndrome, and started one myself called Down syndrome in the Family.  Not to mention blogging about Aidan and Down syndrome in the 31 for 21 challenge, and posting on Facebook about Spread the Word to End the Word campaign.  I even went so far as to have my on-line friend Erin make this poster for me:

Why have I done all this? 
For advocacy, ironically. 
To show the world how much we love Aidan; and to show the world just how amazing and capable he is.

Now, have I been inadvertently achieving the opposite of what I set out to do?  Have I been moving Aidan backwards instead of forwards?  Have I kept Aidan in the box on the shelf labeled "disabled?"  Have I opened the doors for inclusion to happen naturally and effectively, or have I placed hurdles in Aidan's path?

I have to keep thinking about this.  It's good to get different perspectives, and it's good to question ourselves sometimes. 

At any rate, these are the thoughts that keep me up at night.

Aidan and the Great Pumpkin Patch

Aidan's Preschool class went for a trip to a local farm to pick a pumpkin out of the pumpkin patch.  He was quite the trooper...a lot of walking, a lot waiting, and a very bumpy hayride.  The woman in the third photo is Aidan's integrated service worker.  She's amazing, warm and lovely, and all the kids in the preschool love her. 

A Whole Whack of Love

That's my cousin Sharon.  I used to be the little kid listening to her tell stories to the adults about teaching on a First Nations Reserve.  I probably looked like I wasn't listening, because I was playing with Barbie Dolls, or colouring; but I was.  I grew up wanting to be like Sharon.

In '93 I moved out to Saskatchewan and got to know Sharon from an adult's point of view. Nothing really changed, I still looked up to her.  I wish I could be a fly on her classroom wall, 'cause I think I could learn a whole whack about teaching from her.

See the guy holding Aidan in the photo below?  He was only two when I moved to Saskatchwan.  I lived with Sharon for a couple of months helping to look after her kids while the school year ended.  They lived in the middle of the woods, and I used to be afraid that a bear would eat him.

I am so proud of Daniel.  When he holds Aidan, you can see the kind of person he is.  Caring. Kind. Sweet.  One of the good ones. 

Mon petite billy goat

My goodness...I've been a bad, bad blogger. So much going on, but not writing it down.

Okay, here is a little glimpse at a tiny scene of the day...

Today at preschool Aidan followed the arrival procedure without a fight. We waited outside until the duty kids rang the bells. Then, we entered the little red schoolhouse, hung his bag and coat up. Changed shoes, and washed hands. Then he put his name on the fridge door (without being guided to do so) before proceeding to play

Today was day 5, and during all of our previous visits I have had to hold him back from running in to play so that he could learn the routine. Previously he cried, twisted, turned, and made me feel like an evil, bad, horrible troll that wasn't letting him cross the bridge to get to the other side.

Today things clicked. I was so proud of him.

Today I was a very happy troll.

View from the potty

We're trying, really we are. . . to take Aidan to the potty more regularly.  We've had a few successful moments, like two days ago when he pooped and clapped and cheered for himself.  Then yesterday he sat on the potty with his diaper still on and pooped.  Clapped and cheered still.  I guess you couldn't say he was wrong, but...not as I expected.

Today I watched as he sat on the potty, then picked up his pants and put them on.  Then he stopped. Looked down at the floor and saw his diaper.  Took his pants back off, and tried to put his diaper on.

Things are clicking, I went out and bought pullups tonight.

Glasses for a Day

Finally, finally, finally.  Aidan wore his glasses while watching Elmo.  Aidan wore his glasses while eating.  Aidan wore his glasses while sitting on the deck enjoying the flowers.  Aidan wore his glasses.

Then.  Mommy. Stepped. On. Them.

Oh the shame. 

Going to make a visit with the optical dispensary to see if they can be fixed...and will order a second pair.  Maybe in neon yellow so they don't blend in with the hardwood.  Good idea, no?

Lovin' that music

Last month we worked at a booth at the mall to raise awareness about our local Down syndrome society.  There was live music, and Aidan grooved out:

Make an on-line slideshow at www.OneTrueMedia.com

My only regret is that I talked during it...oh well.

Little Celebrity

So, Aidan was on the TV not once, but twice this week.  Both times for the Music Therapy program.  The Ronald McDonald House Charity just donated $30000 to build a multi-sensory room for children with critical illnesses to have a studio to relax in. 

While Aidan and his friend Sarah are not critically ill (thank goodness, touch wood...), Johanne asked that they be at the media event to help accept the cheque.  Aidan and Sarah will be able to use the room if they are having a bad day or simply needing a calming space (the therapy room is quite stimulating with all of the instruments).  I think she chose our kids as opposed to someone who is terminally ill to go on camera as it would be less stressful for them.  Everybody is different, but I know that when we were in that horrible time of waiting for heart surgery, I would have found the act of speaking to the media too emotionally charged to handle.  My nerves were raw...

Thankfully, thankfully, we've come through the other side of that stress and now can experience the joy of putting it all behind us.

Glasses Day

Well, Kieran got his new glasses today, and he's so proud. They look a little big in this photo - but in real life they look better.



He showed us how he cleans them (which he did about 20 times already), and how neatly they fit into his flip-top glasses case. James and I were quite surprised at how strong the prescription is. Poor kid, we had no idea.



We took Aidan with us as we wanted him to get interested in putting glasses on his face. I have been carrying an order for his glasses around in my purse for over a month. Every time we are near a glasses dispensery we go in and I encourage Aidan to try them on. Today was the furthest we got with him. The young woman working with us was so good with him:


Aidan just loved her. So much in fact that he actually put them on his chin, which is a big improvement from throwing them over his shoulder.

I'm so grateful to this young woman for her help. We didn't order the glasses yet - she invited us to keep coming in until we find the right pair for him, and to help get him comfortable putting them on.

Maybe between Kieran (being so happy and proud with his pair) and this very helpful and friendly professional we'll get him wearing glasses before long.

A mom can hope.

31 for 21 - Skipped more - Day 25: The sadder side

I don't know, I've been trying to think up something positive to write about - but I keep thinking of a few of our sad realities. So, if you don't feel like a bit of a depressing read: Stop. Reading. Now.

Before I had Aidan, I had no idea about all of the health concerns that go along with having an extra little chromosome. I didn't know that roughly half of the babies with Down syndrome have a heart problem. I didn't know they were more susceptible to leukemia, thyroid problems, digestive problems, respiratory problems and vision and hearing issues. I wasn't in the loop. On the day he was born I was handed the book: Babies with Down syndrome: A New Parent's Guide, and read the checklist that scared the crap out of me.

Now I'm in the loop, and we have regular doctor's visits and many, many blood tests. Aidan's already been diagnosed with an underactive thyroid and takes medication to help with that. He has food sensitivity issues (milk and soy), glasses that he refuses to wear, and I've already mentioned the three holes in his heart that are now fixed (thank God for that).

What I just learned, from James last night, is that Aidan's life expectancy is currently at about 55 years. My heart sank. How can this be? James said, "but that's better than just 10 years ago, so we've got that to be thankful about."

Still, it felt like I was kicked in the stomach. I had pictured Aidan becoming a sweet old man.

31 for 21- Day 10: Walking around the lake

We went for a walk in the woods today. Around a lake and back again. Happy to spend Thanksgiving in the crisp Fall air. Life is good.

If only we got our middlest billy goat to come with us - but he wanted to stay home close to the turkey. My oldest billy goat did a great job of keeping up with us, and seemed to really enjoy being out with us without having to compete with Liam for attention. It's at moments like this that I realize how important one-on-one time is for our kids.

This was Aidan at the half-way point. So peaceful. I'm not sure if you can see in this picture, but he sleeps with his eyes open a little bit.

This was one of those days when I didn't really think about Down syndrome. It wasn't an issue. All the family that came for supper know Aidan. And love Aidan. We've had conversations about Down syndrome, but I think we've moved past a need to talk about it. Everybody notices how he's developing, but there's no pressure. Aidan is developing at his own pace, we're here to help him develop in the best way possible. So, today wasn't about Down syndroem, (though you might argue that I'm talking about it now), it was about being together as a family and being grateful.

Some days are like that.

31 for 21 - Day 9: Other way around

When Aidan first came into our lives, a few people said, "God gives these kids to special families." I didn't contradict them, but I think they had it backwards - and I know I've said it before: we're the lucky ones. We benefit every day from having Aidan in our family. I would not give him up. Ever. Thankfully we live in an era where keeping our child seems to be the norm.


Aidan after his heart was fixed.

But norms change. And I really fear that mothers are persuaded a little too much to have testing done, and are encouraged a little too often to think that there is something wrong with their child...before they're even born. Sometimes they're persuaded to terminate the pregnancy in the early stages - and I feel so sad for the doctors who think this is best. They obviously don't know anyone with Down syndrome. They haven't had that bond...yet.

Why we bought a dog

Aidan's speech blossoming

Today, as clear as day, Aidan said, "I love you Charlie."

Well, the "Charlie" word wasn't very clear, but it was pretty great nonetheless, and the other 3 words were clear as a bell.

I do believe Charlie loves him right back - last night, Charlie the Velcro Dog (always stuck to me) wasn't behind me like I thought. When I went to look for him, I found him asleep beside Aidan's crib (Aidan was also asleep). I'm pleased, Charlie knows who drops the most cheerios :o)

Of Tide Pools and Other Stuff

We're on holiday - enjoying the ocean at low tide and the warm tide pools that come with it. Aidan splashed happily in one yesterday, sharing it with little sea creatures like the tiny crabs that were the size of my fingertips. Aidan likes to clean things up, so he was throwing bits of sea weed away from him. He polished a clam shell against his chest, and watched as kids raced about trying to keep upright on their skimmer/skimming (?) boards.

Five minutes into our tide pool adventure a teen girl with Down syndrome came and joined us. She said hi to Aidan, and he waved back. Then she went about collecting bits of shells from the pool. I was curious, as I always am. Does she recognize that he has Down syndrome too? I wanted to chat with her mom, but as her mom stayed back and didn't come over, I didn't push it.

Still, of all the gin joints - I mean tide pools.... perhaps I should have gone and introduced myself anyway. I'm not usually shy to talk to strangers, but I seem to becoming more reserved as I get older. Maybe it's a Canadian thing?

Curse me and my spontaneous moments!!

Today was amazing. A morning playdate with another family that went well. After lunch, Liam was off to Kindergarten and Aidan and I decided to go for a drive to the wharf.

It was a beautiful day - the sky was amazing with clouds that begged to be painted. But it was sunny and warm too. Lots of people were out enjoying the spirit of Spring. They were friendly to one another, it was the kind of day where you just knew that nothing bad could happen.

Aidan and I walked along the wharf, admiring the floating houses. Wishing we could buy one of the three that were for sale. What for? Well, admitedly, not to live on it. I've just always wanted a place like that to escape to. A writer's studio of sorts. If I win the lottery, that might be on my to do list.


photo courtesy Corciega on Flickr

We discovered two seals that make their home at the wharf. You can buy fish to feed them. They actually jump out of the water if you hold the fish up for them. Aidan was thrilled. The seal looked at him with such a beautiful look, I was giddy with joy.

photo courtesy molajen on Flickr

Giddy, and without a camera. Curse these spontaneous adventures where I'm unprepared to capture the beauty of the day. But, thankfully Creative Commons Search saved the day - and I borrowed some graphics, legally (I think).

What the Little Stinker has been up to. . .

This week has brought a real change in Aidan's behaviour. He has turned from our sweet, lovable, agreeable little billy goat into a full grown, stubborn, ranting ram. I'm shocked. I really am!

He has been having tantrums at supper time for the last couple of days. When I try to put him in his chair, he arches his back, lashes out, kicks, and yells like a banshee. His yell shakes my world, it truly does. Yesterday he kicked his bowl of applesauce which landed all over me. Tonight we gave him his first time out. In fact we gave him 6.

We removed him from the table, told him he was going into a time-out for yelling and kicking. He screamed all the way there. When he wanted up I asked, "will you eat now?" "Will you sit nicely?" "No kicking?" When he nodded to each of my requests I picked him up and tried again. It took 6 trips to time-out. Then finally, the pay-off! He let me put him back in the chair without arching, screaming, thrashing out. We all praised him, "oh, good boy, sitting nicely, nice feet - no kicking"...etc.

He clapped, said, "Yay" and ate his supper with lots of cheers and smiling going on.

I must say, it was a real battle of the wills tonight, and boy can he be a stinker when he sets his mind to it!