Monday, April 30, 2012

In the News - April 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of April.

Legend:


AUDIO indicates an audio clip
BLOG indicates a blog post
EVENT indicates a scheduled event - NEW!
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread - NEW!
VIDEO indicates a video



Understanding and Treating the Cognitive Dysfunction of Down Syndrome


Sensory Integration for Children with Autism:  Proprioception System Explained

Outrage as sister with Down syndrome barred from Canada

Employers welcoming people with Down Syndrome with open arms

Why So Many Babies are Still Being Born With Down Syndrome

Mother's Down Syndrome Memoir on Sale Today

Popcorn Success Story highlights disability summit
BLOG Look at me while I misunderstand you: an Aspie/NT morning


'Roo's a lucky boy then?  Baby Kangaroo forms amazing friendship with Down's Syndrome Teen

My Baby with Down Syndrome:  Finding Beauty in the Unexpected


Scientists find First Definitive Genetic Links to Autism
BLOG Good Article in Defense of Extended Breastfeeding

Teenager with Down's Syndrome targeted by "Internet Trolls"

BLOG
Anti-Bullying Reading Recommendations for Children and Teens
EVENT Down Wit Dat's T-21 Blog Hop
BLOG Mosaic Down Syndrome -  Still Learning
THREAD I am the Mother of fraternal twins, one who has Down Syndrome.
BLOG Just the Facts

BLOG
21+21+21 =?
Pageant celebrates spirit of girls with disabilities

How to Teach the 5 Senses to Kids

Special Dreams Farm offers life skills to special-needs adults
EVENT
Speaker at Holland Bloorview May 10th

Kindergarten classmates find Gretchen Coon is a lot like themselves
EVENT To "I Wish I Didn't Have Aspergers": An #AutismPositivity2012 Flash Blog Event

BLOG
10 Things You should Know About Your First Week of Breastfeeding

BLOG
Things You Should Know about a Heart Mom

Defying the Odds

Facebook Blocks Account over Special Olympics Photos

Down Syndrome Prom King Wins by Landslide

BLOG
"I don't care what I have as long as it's healthy"

Even if it takes awhile, love finds a way

A Theater Class where All are Able

How to Teach Kids About Matching Numbers
BLOG Sibling Love
VIDEO The Frog Princes

Down Wit Dat hosted the second T-21 Blog Hop on April 21.  Don't miss our next one on May 21!


...And that's the news.  Keep the stories and information coming!

Tuesday, April 24, 2012

Peace, Love and Transformers

My eldest is turning six this week.  It's a bit of a landmark age as he is decidedly no longer a baby and definitely now a kid.  At four I could tell myself he was still baby-ish and at five I could be totally in denial, but six... six is grade one.  Six is BIG.  Six is well beyond "where the hell did the time go" and entering the city limits of "holy crap am I old".  Six.  Wow.

My husband and I do this every year (and now, twice a year!) to ourselves.  What are we going do for his birthday party?  Last year, when the babies were still very tiny and barely home from the NICU we took Quinn and his friends bowling.  It was awesome.  They did the games, the food, the loot bags... we just brought cupcakes and our wallet.  Sha-ZAM!

Like a lot of people, we are now down to one income and looking for ways to save money.  We are also slackers and realized that we had two weeks to pull this all together (and that left a lot of kid friendly reservations out of the question).  As it turns out, we also seem to have short memories as we have forgotten what it is like to have a bunch of kids thundering through the house.  Let's have it at home, we thought.  But what kind of party?  Recently I tie dyed two pink shirts for Quinn for Pink Shirt Day and it was so easy, Sean offered "why don't we do a tie dye party?"

I'm not an artist but there definitely is a part of my soul where the colours dance.  "Yeeeaaah!"  I answered, "that is an AWESOME idea!"

We priced out the materials and sent the invitations.  I did my research and figured out exactly how I was going to [try to!]  keep six 5 to 6 year olds from dyeing each other.  This would work.  This was do-able.  This was going to be fabulous!

I figured the party favours would be no-brainers.  Peace signs, flowers, doves... things that said "groovy" or "far out".  Not exactly rocket science.  The people at the party supply shop were a different story, however;  after running around the store in a panic, I approached a nice young man who looked like he would know what I was talking about as, lets face it, even his hair looked stoned.  I got a blank "Ah-wha'?" for my troubles.  A second, very caffeinated person that my very mellow friend conferred with, looked at both of us with scorn and asked "you mean 60th BIRTHDAY?!"  At my head shake and attempt at an explanation I found them both staring at me, mouths slightly open.  It was then that I realized that Austin Powers was over 15 years ago and that I was really bloody old (and quite possibly completely daft).

The day of the party dawned cloudy, but the sun came out and warmed it into a nice day.  The kids trickled in, one by one.  A few parents (that we also happen to be good friends with) hung around and my Mom visited us for the day.  We had to throw the shirts into the washing machine as they all had to be damp for the best results, so as we were waiting, we did our craft.  I had forgotten that most of them were daycare kids and therefore, preternaturally crafty.  They were all super fast and done before I had a chance to think again, so I put their shoes and coats on them and threw them outside with some chalk to decorate the fence.  I got enough time to get the shirts out of the washer and wrap up our shirts and show the parents what I meant when my girlfriend opened the door to what we thought was screaming.  Turns out, it was chanting: "Tie Dye Par-TY!  Tie Dye Par-TY!".  This should have been heeded as what was to come (and this is before sugar). They all galloped in and we got ready to tie up our shirts.  

The kids had a fabulous time deciding what they wanted to do to their shirts.  Once everyone had a arranged their rubber bands, I has them come out to the yard one by one. They picked their colours and critiqued my technique.  One of my friends had brought a giant smock that they were in turn wrapped up in and I had picked up some small gloves for them to work with.  I think they thought that the rubber gloves were the coolest thing ever, as they all stood there like mini surgeons with their hands up until they had to point something out, which they did proudly, all the while admiring their gloves.  The kids were amazing.  They told me all about rainbows and the sky and their take on the Earth (Sunday was Earth Day as well). Again, this was before the snacks.  As I was finished each shirt and explained to its designer that it had to stay with me a bit longer, I told them to go in and get something to eat.

I'm so proud of my little artists!
You may be surprised to learn that we are not big on processed sugar around here (at least, when it comes to the kids).  They had their choice of 100% fruit juice (no added sugar), milk or water and veggies, fruit and chips/party mix to eat (it's a party, you need some junk). There was still a lot of natural sugar to be had, so they were all happily bouncing around screaming playing in the basement. One of the Dads kindly volunteered to supervise and had to switch out with another parent due to sensory overload (and that's with him having only partial hearing)!  He told them he had to go check on the adults and (creepily) in unison, they answered "Good!  It's too quiet up there!"

It was no where near time for cake, so I thought I'd grab a snack and chill for a minute. I was jolted from my veggies and Pepsi (I get the added sugar) by another chant, this time: "CAKE!  CAKE!  CAKE..." that shook the floor.  Well, I'd better get that cake rocking then. After my small mishap with cake sparklers (don't ask...), the kids gallumphed upstairs and we sang Happy Birthday to Quinn. 

About 20 minutes later both the sugar and the following epiphany hit:

Giving children sugar is exactly the same as giving adults alcohol.

It's true.  Compare the birthday party to the average adult party.  I use boys as an example but trust me, it is the same with girls.  It starts off easy with the mutual friend introductions.

Host: "This is Bobby, he is my school friend and this is Johnny and we swim together.  Both of you like Transformers!  Yay!
Bobby: "I like the Autobots!"
Johnny: "I like the Decepticons!  Let's play!"
Bobby: "Roll out!"

Host: "This is Bob.  He and I went to uni together.  This is Jean, we work together.  You both are hockey fanatics.
Bob: "Boston?"
Jean: "Nope.  Montreal."
Bob: "Cool.  Beer?"

As both parties go on, they get louder and louder.  "Cake!  Cake! Cake!"  "Chug! Chug! Chug!".  Finally, as things are winding down, the refined sugar cake and ice cream comes out.  For grownups, there's shots.  Suddenly, what was previously a fun time, is not.

In both cases, something gets knocked over, spilled or broken.  Everything is really loud and boisterous and inevitably, someone is crying.  Finally all it takes is one bad look and this happens:

Bobby: "Autobots are the best"
Johnny: "Decepticons RULE!"
Bobby: "TAKE THAT DECEPTICON!"

Bob: "Guy LaFleur.. oh yeah, there's an athlete!  How much did he smoke a day again?
Jean: "Prob-bab-lee less, den dat twat, Bobby h'Orr!"
Bob: "☠☠☠☠ YOU!"

...And in both cases, it is ON!

Eventually, people start going home.  In our case, we still had a bunch of boys and one girl left in the basement, holding her own in what was rapidly becoming The Lord of the Flies.  Thankfully, it was pretty easy with the kids:  we separated the Autobots and the Decepticons and peace and love was restored to the universe.  With grown ups, it usually doesn't end until somebody calls the cops.

No one got hurt and everyone now has a piece of wearable art.   At least for the majority of the afternoon it was a celebration. Quinn got what every kid really wants too, to play with his friends.  We had a little more to celebrate than usual as my Mom and Quinn share a birthday (hers is a milestone number this year as well).  Zoe got her first taste of potato chips as she cruised everyone's plates and later got a burst of sugar herself when she got a lick (or two) of icing.  (She later flumped into a heap in the middle of her crib and did not wake up until late the next morning).  Wyatt decided that it was a perfect day to sit up all on his own, which he did and surprised a whole room of adults.  He has yet to repeat his performance, but it was enough to make a room full of parents happy.

The next week or so is full of appointments and tests and all sorts of medical things for Wyatt.  There will be anxious feelings and sleepless nights.  There will be planning and sorting and organizing until we are exhausted and crabby and don't feel like talking any more.  This entry, for the most part, isn't about Wyatt or Down Syndrome or the usual things... so much so that I considered posting it on my other blog.  It is however, about family and the people in it.  Sometimes we take the front seat, sometimes we take the back.  This week is all about Quinn and his birthday.  Soon, it will be all Wyatt again.   In the meantime, we will celebrate what a wonderful big dude Quinn is becoming and the great guy he will one day become.  This week is about changes, happy thoughts... and cake.

Peace and Love, Baby.

Roll out!

Saturday, April 21, 2012

Splish, Splash

We guard our sleep fiercely in this house.  I'm not kidding.  Every bedroom has a blackout blind and regardless of the time of day, we have the ability to seal out the light and hope to get a few minutes rest.  Last Sunday night was uncharacteristically warm which gave us a chance to sleep with the window open (a real treat this early in the spring).  Not surprisingly, Monday morning greeted us early with the rising sun. We awoke to the birds and the gentle hum of morning traffic. 

Perhaps it was the soft breeze or the smell of Saturday's rain still in the air, but there was something about this morning that suggested more than normal mornings.  There was something here.  This morning had potential.  We meandered through our morning routine;  coffee, eldest ready for school, bus stop, computer.  The twins continued to slumber and with that, I found myself having time for a rare "late" morning shower before they awoke.  I was in our bedroom gathering the things I needed when I glanced at the window.  Whatever it was, was still there.  Maybe it was the way the light hit the curtain, who knows?  "There is magic in this morning", I thought to myself as I looked for clean clothes.   I soon found myself having to mentally push myself to keep going;  "I have to shower", I thought.  "They will be awake soon and I have so much to do today".  The breeze waved the curtain a little more and I found myself drawn to my comfy leather chair.  As I sat down, the chair made delightful leathery crunches and I listened to the murmur of the passing cars and birdsong.  The breeze smelled of warming grass and spring flowers as it ruffled my hair.  A wind chime tinkled away in the distance.  I was content in my quiet contemplation.  It was only the stirring coos on the baby monitor that pushed me from my serenity.  Regretfully I got up and headed to the shower.

Once I returned, the magic had passed.  The light on the curtain had changed and the traffic sounds had more urgency.  The babies were now fully awake and their back and forth babble was starting to get an edge to it.  Those few moments however, stayed with me for the rest of my day, like a calm hand on my arm.  That awareness, that stillness... it gave me inspiration.  Bliss even, from a left-open window, a bit of breeze and a splash of spring sunshine.

It may sound silly, but I have to take my inspiration where I can find it.  A trickle of sunlight here.  The scent of grape hyacinths drifting from the vase on the kitchen table.  Whatever works, whatever gives me a little bit of tranquility or comfort.  That is what navigates me through the rough waters.

My children provide a lot of inspiration too.  Don't get me wrong... my house is just like yours.  There are shouts and slammed doors and instructions that have to be repeated to infinity behind gritted teeth. There are also incredibly insightful works of art.  There are fart jokes. There is a ton of laughter and snuggles.   I'm not sure how they do it, but the kids always seem to share exactly what is needed, when it is needed. 

Quinn, our eldest, is quite the little character.  He has turned into an excellent big brother and willingly helps out with the babies.  He is always ready to make one of them laugh or give them kisses. It has been a distinct transition for our wee man;  he went from being the only child to a big brother of both a sister and a special needs brother overnight.  For the most part, he has adapted well.  There have been moments however, where he has acted out or expressed some difficulty or frustration with his situation.  It's all to be expected.  In one of our many recent purges, Sean stumbled on a 'temporarily misfiled' gift card for Toys R Us (that had been given to him before he left his job).  It was a pretty timely find:  although he has a birthday coming up, we wanted to do something as 'an aside', to give him a little treat for being such a good helper.  Armed with our card, we headed out to every kid's favorite store.

In the hour and a half we were there, we looked at all the toys that a 5-6 year old boy would probably sell his own parents for.  He looked at the Lego, the cars, the bikes, the scooters... you name it, he looked at it all.  We had a $50 limit as well, so he could have gotten just about anything that he wanted. 

He didn't want any of it.

Sure, this one or that one rated a cursory glance, we even got a "cool" out of him once or twice.  Otherwise, nada. 

He had 50 bucks to spend and all he wanted for his "house" (kitchen set) was a $13 pretend pizza making set. No stuffed animals, no trucks, no new art supplies.  A Pizza making kit with pretend mushrooms so that he could make his favorite pie.  That's it.  We grabbed a giant OBall for the babies, a Frisbee and headed home where he spent a glorious two hours making slices for us.

That's really typical of him, actually.  The Christmas that I was pregnant,  uber-sick and anemic, he asked Santa Claus for "a big piece of beef so that Mommy will feel better".  Last year when we asked him to make out a Christmas wish list, he did so... and listed all the things that he wanted to get other people.  My eldest is his own person.  He is a kind, caring, loving soul who habitually thinks of others before himself.  He is wildly creative and can spend a blissful afternoon drawing and making 'crafts'.   It may be temporary as full time school is looming on the horizon.  However, for now, he is completely content with who he is and completely full of awesome.  He inspires me daily with an outpouring of creativity and compassion. 

Now Zoe... ahh Zoe.  My little warrior princess.  She is a force of nature.  Her determination is outmatched only by her energy.  She is a toddling tsunami in Robeez. It is amazing.  Her vitality, her sense of humor.  What baby has a sense of humor?  Zoe does.  At 14 months she mugs and pulls faces to get a laugh out of you.  I hope this persists as a great sense of humour will see her well through this life.  She is loving and adorable and totally free.  Her spirit quenches me after even the most marathon of 12 hour shifts.  She is simply fabulous.

Wyatt is my little bum-bum.  His smile.  His eyes.  His laugh, so infectious, will wash away any blues.  His sheer determination is often my motivation. Wyatt doesn't quite commando crawl yet, but he 'reaches'.  He can pull himself forward on one elbow and extend his other arm as he desperately tries to touch a desired object or toy.  He repositions himself and then extends himself again, his mouth open and his hand as wide as possible to maximize the surface area when he finally makes contact.  I have seen him pull himself slowly across the floor to reach a desired toy.  It is phenomenal.  His body and muscles do not work or respond the same way as other children.  Not only does he have to work really hard (to overcome any fatigue from his heart and the hypotonia) but also it takes him longer as the nerve impulses do not flow at the same speed.  Despite all that, he gets there, time and time again. No matter what obstacles are in the way, eventually he adapts and overcomes.

He has taught me many things, including the depths of the human heart.  He inspires me to write, to learn, to be a better person.  This blog?  The energy streams from him.  Whenever I think "I'm too busy to write this week" or "someone else will post this", I look at him and remember why I am doing all of this.  I remember too, the sad, lonely, frustrated Mom that couldn't find resources, who felt that she had nowhere to turn as she didn't fit into the right clique.  I don't want anyone else to feel that way.  I don't want another baby with Down Syndrome robbed of any quality time with their Mommy or Daddy because they are swept away with grief.  I cannot change what is past, but I can help others shorten that process.  I can help others feel included, no matter what their education, nationality, ethnic background, age, sex or religion.  Wyatt inspires and fills me with courage.  Wyatt is my muse.

My whys and hows are pretty obvious to me. I don't have an inner serenity pool to tap into, so I find my moments where I can.  My friends (both IRL and virtual) are a constant source of encouragement.  All the grief counseling/therapy/self-help nonsense in the world cannot do what one comment from one of my readers does.  That's why I post the best ones on "The Wall"... to share the positivity with others. I cannot overlook the rivers of support I have from both my friends and fans.

I am very thankful to have so many positive influences in my life.  The world is a very negative place, especially towards people with an obvious learning disability such as my son.  It grates on you some days and can wear you down if you are not careful.  You have to take your inspiration where you can find it, whether it be a baby's smile, a carefully drawn and lettered picture or a bit of sunlight out a window.  It's out there;  you just have to tap into it. 

There is a quote from Vivian Greene that, if I was craftier, I would probably put on a sampler or something:  "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain."  It's these little moments of inspiration that guide my feet, it's my little family that lifts my arms to the sky.


Join Down Wit Dat on the 21st of Every Month!

Wednesday, April 18, 2012

Wordless Wednesday: Springtime Fun

(Clicky to embiggen)


Dandelion
Wy laughing My boots look FABULOUS
Zoegirl What the heck is this?
NOM NOM NOM!
Wy Laughing his ass off Snorgles Yargh
OMG
Sneeks


Silent Sunday
Related Posts Plugin for WordPress, Blogger...