National Down Syndrome Awareness Week

Aside

walk

National Down Syndrome Awareness Week. I have to first apologize for it taking so long to get this out.  Life as take priorty to my sharing.  On November 4th, our family was lucky enough to have those closest to us take part in our first Annual Down Syndrome Awareness Walk.    It was cold and windy but be all manage to make the hike.

http://www.youtube.com/watch?v=COvJzj8uvc0

I was overcome by all of these people who piled onto our court that day – all for our son.  He is a lucky boy to be surrounded by so much love.

And we can’t wait for next year – since we have so many new friends to be walking for!

Love to all who took part,

April, Jamie and Declan

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Look At Me

When I look back at old pictures all I see is love.  I really do have a hard time seeing Declan’s physical features in most of them.  I’m not sure if that makes me a bad mom for looking for these things or wondering if others do too.  So the other day while searching around, I came across something that reminded me it isn’t the features that make him who he is, it’s what’s inside.  I’m not sure of the author, but it’s titled the Down Syndrome Creed

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I’m no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace

Today as our family heads out on our 1st Annual Down Syndrome Awareness walk, I’m hoping everyone will see Declan for who he is.  It’s really about acceptance.  And although Declan may have only the one crease on his hand or a floppy tongue because his muscle just aren’t strong enought sometimes to hold it in – he is a Boy.  A Boy first, who just happens to have Down Syndrome.

HAPPY NDSAW WALK DAY!  WE CAN’T WAIT!

Inspiration is my Medicine

 

My brother-in-law shared this video with me.  There is only one word to describe if – INSPIRATION!http://espn.go.com/video/clip?id=8450488

For a musician, inspiration can come from heartaches and misfortunes.  For an artist, it can be as simple as a drive through cottage country.  For me, as a parent of a child with special needs, it comes from him.  Before Declan, I was under the impression that all I ever needed was a little motivation and determination to get the job done.  The door to Inspiration hadn’t even been unlocked.

I’ve come to learn, I couldn’t be more wrong.  I watch son struggle with what may come easier to most.  I’ve watched him resist as the therapist tries for one more time to get him to stand for a few seconds longer.  I’ve listened as he cries in frustration to get to his toys and he can’t quite figure out how to roll over.  And I’ve felt as we walk into that room of strangers and even more strange noises, as his senses just reach overload – and he panics.  Much like today during our monthly get together with local moms and other kids with Down Syndrome.

As I looked around that room this morning, my heart was full of happy tears.  I was awakened to what matters.  From little ones who have mastered sitting up to those who can now climb down off of chairs!  They all have worked so hard to get to where they are.  Each took their turn showing off their new tricks.  And all of us moms smiled back because of how proud we are.  But deep down I believe it’s because we all knew we’d be leaving there today with more that what we planned – a little more Inspiration!

 

Down Syndrome Then vs Now

People with Down Syndrome enjoy life.  They have relationships, take pride in the jobs and display their talents like any of us would do.  They are PEOPLE!  A new friend I’ve met since I’ve joined this club shared her thoughts about this week:

Dear Friends,

November 1st to 7th marks National Down Syndrome Awareness Week in Canada. During this special week of awareness I invite you to join me in being an advocate for individuals with Down syndrome. Importantly, I also ask you to take to heart this year’s campaign theme: ‘See the ability.’ And to focus on the wonderful strengths, talents and abilities individuals with Down syndrome offer to society.As some of you may know, rather coincidentally, it was exactly two years ago during National Down Syndrome Awareness Week I learned the beautiful baby I was expecting would be born with Down syndrome. I am the first to admit that life has indeed changed with the addition of our youngest daughter – but I challenge any parent to contest that their life hasn’t changed following the welcome of a new baby to the family, ability or disability aside.Since this time I have learned an awful lot about Down syndrome and have had many of my own misconceptions and assumptions rightfully corrected. I also have had the pleasure of meeting and building wonderful friendships with many individuals with Down syndrome and their families. I am grateful in many ways to have been inducted into this exclusive club – that of being a parent or relative to someone with Down syndrome – and feel fortunate that I continue to have my eyes opened in ways that allow me to focus on the important things in life and to better appreciate its little miracles.I’m an advocate yes, but a mom first. My hopes and dreams and fears for my youngest daughter are the same as for my oldest, and I assume they are similar to what any parent wishes for their children. I want my daughters to love and be loved. I want them to be educated and fulfilled and to lead healthy, happy and productive lives. Is this so different?Yes, my youngest daughter does face some challenges. And yes, she often has to work harder to achieve many of the tasks that come so easily to ‘typical’ kids. But she does and will continue to successfully meet the challenges put before her. What more, she is a blessing to our family in every way and is so fortunate to be surrounded by such amazing champions and supporters who help her reach these milestones and who will push her to realize oodles of other accomplishments and successes in the years to come.This week, I ask you to join me in celebrating National Down Syndrome Awareness in Canada. I also encourage each of you to really ‘See the Ability’ – in those with Down syndrome, yes. But in ALL individuals you have the pleasure to meet.Feel free to pass along, and please do what you can to spread the news about Down syndrome Awareness Week in Canada.

Well said!  Here is Nicholas’ story.  He is the spokesperson for this years campaign.  http://www.cdss.ca/ndsaw/day2-2012.php

Happy Friday!  And don’t forget to spread the word – SEE THE ABILITY!

National Down Syndrome Awareness Week 2012

Today, November 1st, marks the beginning of National Down Syndrome Awareness week.  Last year at this time, I was still living in a bubble, trying to come to terms with and accept our new reality.  Today I am proudly embracing my reality!

This week is a time for celebrating,  which is exactly what we plan to do on Sunday during our First annual Awareness walk. It’s a time for opening the eyes of others who may not know or understand what it means to have Down Syndrome.   My hope at the end of this week is share with you the things I’ve learned in the last 14 and a 1/2 months about Down Syndrome. That you too can take the journey to a place I never thought I’d go.  Down the road I never imagined heading, that I fought so hard to turn around on.

I can’t believe I ever wanted to turn back.  Because this road has brought me to the place where I’ve discovered who I am, what I’m meant to do in this crazy world – but most importantly it’s allowed me to see that life is a blessing, a gift, and you should enjoy it while your here!

And – maybe, just maybe,at the end of it you will understand how I’ve transformed from

THAT mother with a son who has Down Syndrome to

I get to be a  MOM to a son who has Down Syndrome!

Happy National Down Syndrome Awareness Week – be sure to SEE THE ABILITY     not just in those with special needs or inabilities but in everyone you meet!

http://cdss.ca/ndsaw/

Technically Speaking

A few weeks back we had an appointment for his Speech Assessment.  Although we had no idea what to expect, we knew all the tricks and accomplishments we were ready to share.  The session was play-based and full of a tonne of questions. “Does he do this?” or “Have I seen him do that?” were mostly followed by an excited “YES!” from us.  Check, check, side note, check – I watched as the therapist filed through the questionnaire.  As I sat there and watch Declan play with his new friend, I was thrilled with how well things were going.  The therapist walked us through how the assessment worked – the new standards allowed for a comparison of Declan’s accomplishments against himself instead of against the generalized benchmarks being used in the past.  Perfect!!  I wasn’t ready for the “POP” in my bubble that came next.  “So Declan is functioning for the most part at a 6-9 month range and shows some skills in the 9-12 month range”.

I don’t think I can articulate to most why this saddened me so much.  We finished up and headed home.   The drive: that dreaded drive home – alone with my thoughts.  It was beyond discouraging to get that news. We work, and we practice and we work again – All just to go to bed and wake up the next day and start over.  And through most of it, Declan whines or even cries in protest.  “I’ve had enough!” he probably thinks but we don’t give up instead we push him a little further.  It’s exhausting; it takes its toll on all of us.  Most would say not to worry, he will get there someday, or that I’m sure he will catch up.  But that’s not the case – we already know that Declan will have challenges and delays and may never do some of things most of us do.  So we work and we practice and we work again.  And just when he’s at the end of is rope – we work some more.  Now imagine this is you – and at the end of all your sweat and tears – you are told your efforts have produced results that are something less than mediocre.

I know the therapist never actually uttered those words.  But walking out of that room that day, it’s exactly how I felt.   I wasn’t sure I had it in me to hear what the next group of therapists had to say.  So this past weekend we made ourselves comfortable on the mats on the floor with Declan’s Physical Therapist and I was ready for the defeat.  Gloves were dropped, sweatband was on!   I found myself rhyming off all the things he could do but followed up each with what he wasn’t doing.   “He can sit up on his own, but he can’t get back up once he falls over,” I shared.  “This is typical” she said.  As the therapist scrolled down her checklist we landed on the topic of food.  I could see Jamie was dying to tell her, “He feeds himself with a fork!” I bragged about how all of Jamie’s’ hard work day in and day out at the dinner table paid off when he finally picked up the fork a few weeks ago and put it in his mouth.  “Wow, he’s advanced” she blurted.  And with that came the kick I needed to set me back on track.

Technically speaking, Declan will have difficulty with things that come easy to most.  Working hard to get things done will be his norm.   And at the end of the day, he may not be where he needs to.  But it’s not in vain.  He may not be the best Soccer Player but he will know how to bake the best cupcakes in Town (just like his mum).  He may not be able to tie his shoes as quickly as his cousins, but he definitely will be the most fashionable when all is said and done (just like his pa!) He may not be able to always TELL you what he wants and needs, but he will always show you like he does today with his hugs for mommy and kisses for daddy.    Technically speaking, that’s all that really matters!

National Down Syndrome Awareness Week Nov. 1-7th

http://cdss.ca/ndsaw/

The first week of November is National Down Syndrome Awareness week.  Our family has decide to host a walk through our community in the hopes that all of our neighbours become more aware and are able to “See the Ability” of Down Syndrome.    

If you have a chance, take the time to read the link for the Canadian Down Syndrome Society. 

And for those of you interested in the details of the walk – message me. We’d love to have you join all of us in creating awareness!