Happy 3-21 !!

Happy World Down Syndrome Day!!  3-21 - March  (03) 21!  The day we get to celebrate all those individuals living with an extra copy of the 21st chromosome!
Amidst all of the chaos posted these days, I thought I should enlighten your scrolls past COVID-19, and maybe bring something joyful to read!
BUT .....  Holy jumping!!  Has it seriously almost been 3 years since my last post?!  My apologies!!  Obviously, that must mean its a good thing, as there hasn't been much to report - but I'm sure theres new news.  Im trying to think back to the 8th birthday (my last post)... He's currently almost (wait for it.....) "11" folks!   Currently in grade 5!  He started a new school in grade 4, and the transition went well.  Next year Parker will get to join him at the "middle" school!!  He is in a classroom with a little over a handful of other kids, and is getting the support he needs in there while learning life skills,  math, science and literature at his level, as well as being integrated with his peers for french and occasionally gym (he's stubborn...)  He has a love for cooking, and does really well with following recipes! (what a help!!!)
I still can't get over how fast time flies!!  While Parker (who's almost 9) would sooner not be seen with his mom (im still cool... i keep telling myself that anyway)...Lincoln allows me to hold his hand and bring him to his classroom everyday.  Which is an experience on its own.  We have to walk up stairs, past the cafeteria, down the hall to his locker, and he has a different fist pump with so many different people.  "who's that Linc" id say... followed up with "just my bud"  Its so warming.  Often my parents will say the same - if they take him to town when they're visiting... can't go out without someone saying "hey Linc".
He's such a lover, and reminds us far too often (ok, maybe not) that he loves us.
He has a few routines that NEED to be followed, and we get reminded of those OFTEN.  He knows what days what is supposed to happen - eg.  Monday and Thursday Parker goes to Karate,  Friday is chicken wing and french fries night - as well as watching a movie in bed.  Every night after dinner, he has to go in the hot tub, and on Saturdays he can have POP - or, basically everyday now since theres no school... but hey - live a little, right??  Onward with the POP story, its true, he has started to like sweets - and i mean started.  He likes pop, (only ginger-ale or sprite) and, he likes apple crisp!!  Thats new.  His dad requests a homemade apple crisp every year for his birthday (which just passed) and we convinced him to have a bite... while he quenched, and said it was "delicious" ... he did manage to help dad finish the rest of the pan!
He can often be found occupying himself.  He LOVES his "man house" i made him a couple of years ago, and colouring colouring colouring.  This past summer, we took a road trip with camper in tow to Alberta and back.  So, basically - this current self quarantine has been nothing if you consider we spent 2 weeks cooped up in a truck and camped out in walmart parking lots along the way... anyway, he coloured so many colouring books!

We love skiing (although if you asked Linc, he's say "no, I hate skiing" but he'd smile and sing the whole way down the hill EVERY.SINGLE.TIME.


Otherwise, Im not sure theres much else to say!  He's healthy, happy, and loving life!
And we're loving every minute along side with him.  (And his brother of course)

Thanks for reading!  I wish nothing but the best on everyone these coming weeks/months!
xo

Michelle - Lincoln's mom

The 8th Birthday

Dear Lincoln : Today you turned 8, and I can't believe it. They always say time flies when you're having fun... And... clearly... we must be having a blast!!  8 years with you in our lives has taught us so much, and we are oh, so proud of you. You are working so hard to accomplish things, and you don't let much stand in your way (besides your stubbornness.) Your personality could light up a room, and i'm sure you're the class clown. You love attention, and making people laugh. You have the warmest heart I know and you can never give enough hugs. When you're the first to say "Good night, I love you TOO" even before we do, we are certain that you feel how loved you are. Keep being you, because we can't wait to see what the future holds.
Love : Mom

Saying Goodbye To Summer

That time of year has come again.  Everyone says it.... but seriously!!  WHERE DOES THE TIME GO!!!   And in a blink of an eye, Lincoln is in grade 2!!!  And Parker already in Senior Kindergarden!!  I'm still trying to wrap my head around this!


We've had an enjoyable summer!  The weather was perfect, the beach was beautiful, and our days were eventful! We cut, split and stacked 2 tandem loads of logs, and although the days were hot, and the work was hard, my little "leaver boys" were a huge help!! (and always eager to make a little spending money.)

We got to spend most of our weekends at the beach, enjoying some company and relaxation.

We got to try some fun too!!  Tubing, Paddle boarding, sand castles, and just relaxing in the water.

So, we've had a bit of a fun summer i guess you could say.    Although we're sad to see it go, I know summers cant last forever, and the learning must go on.


This morning as we went about our lost routine of having a time limit on everything, I wasn't too sure where my head was at.  Grade 2 is kind of a big deal!  The other kids in Lincolns class just tower over him!  I'm happy with his teacher, but I cant seem to comprehend the lack of EA (Educational Assistant) support in his classroom.  Although Lincoln has never had a full time EA, there has always been one present in his classroom, until this year.  Grade 2.  I understand that He is a capable, well behaved child, but he is still behind his fellow peers when it comes to learning things.  He does have an IEP, but i can only imagine that somewhere during the school year, someone will be missing out on learning.  Whether it be the other students while the teacher attends to Lincoln, or it will be Lincoln because he cant keep up.

I'm sure that there is a rhyme and reason for this, and I can only hope that if and/when it comes time that he needs an EA back, it won't be much of a fight.  Its only fair.  For the meantime, I'm thankful for inclusionAt the end of the day, i'm happy to report their first day back was a success, and i'm sure bedtime will be a breeze.  Lincoln didn't chew a hole in his shirt (which he tends to do when he is overwhelmed),  managed to eat his whole lunch, wore the same clothes home as he did to school, and picked up some books at his teachers desk when things got to be too much for him.  He had one on one time with his teacher, and has followed the new routine with ease.  
I hope to report back with the same news.

HAPPY FIRST DAY BACK EVERYONE!!

Seeing past the "cute"

Today, March 21 ( 3 / 21 ) is World Down Syndrome Day.  The reason for this, as you may know, is because of the 3 copies of the 21st chromosome that make up the genetic condition called Trisomy 21 (also known as Down syndrome).  Today is a day we join people all over the world.  We raise awareness, wear funky socks, and take the chance to educate others on what Down syndrome really is... and if you're lucky, you'll see lots of cute pictures and posts about people who have Down syndrome.

Here is a picture of Lincoln, climbing a rope at the park the other day.  Cute right?
I love cute pictures of kids with Down syndrome.

As Lincoln's advocate, I enjoy sharing on his cuteness because cute is the first step.  Cute gets noticed.  Cute helps you get past your stereotypes.  I love that people look at Lincoln, maybe notice Down syndrome, and then smile.

But then what?

All kids are cute, and easy to smile at.  So you notice, your eyes light up, and you walk away. You are no further educated than you were before he put a smile on your face.
So, I'm writing this because I want to raise awareness, and I want to change perceptions.  I want people to see Lincoln, and to know that our life is beautiful.  I want people to know that I am happy.  That Lincoln is happy, and We, as a family, are happy. The truth is, and I can say this because I am experienced... Down syndrome is so much more alike than different.  The impact of joy he has put in our lives is immeasurable.  Sure things aren't all rainbows and butterflies, but the positivity and energy and joy he has brought into our life far outweighs any of the challenges we have been through.

I share, and raise awareness because I don't want you to be like me.  I don't want it to take half a life time, and suddenly realize you're not the same person you were before Down syndrome entered your life.  I am 32 years old, and it took me that friggin long to learn what empathy really is.   I never actually put myself in the shoes of another person to understand how they feel. You see, before Lincoln was born, I didn't know what Down syndrome was.  I didn't educate myself, and I didn't care to.  But today, if you ask me what Down syndrome is - i could go on and on about the beauty, the loving, compassionate, rewarding, heart warming, charming, annoying, pestering, stubbornness, loving life impact that it has seriously had on my life.

Lincoln plays an important role, not only at home, but in his community.  I believe he has far more friends than I do.  We don't go anywhere - and I mean ANYWHERE without someone saying "Hi Lincoln"  and I love that.  Sure most of who say hi are kids, and kids are oblivious to Down syndrome at this age, BUT - its inclusion, and thats where it starts.  Its getting past the cute face, and the grin that gets him out of trouble time and time again, and seeing the ability.  Seeing his life has value and that just because he may be a little bit different, he is just as much the same.

So get past the cute face.  Learn a little.  Educate yourself.  Educate others.   Because I am convinced that with enough awareness, we can make a difference for the future.  So go on - and LOVE on Down syndrome.

Lincoln's first Track Meet!!

I write today with a heart full of pride. 

As I sit back, and look at the two ribbons on Lincoln's red school shirt, I can't help but to smile.  Today was Lincoln's first track meet.  

 And although i'm not too sure he really knew what was going on...

 He did great - and gave it his all with a smile.

 He participated in ball throw, 

 and ran the "special needs" 50 M dash.

 His brother accompanied him.

 Hand in hand.

 Lincoln's smile was PRICELESS!!

 He started cheering for himself even before the race was over!!  They crossed the finish line with the other participants, and got a first place ribbon!!!  (they came in second)

The reaction from Lincoln's personal fans, and from those who were along the sidelines was totally amazing.  

Even though the race only took a total of 22 seconds,  it was 22 seconds of ear to ear grinning, lumpy throat smiling, and a memory that will last forever. 

Way to go Lincoln!!!!! (and Parker too of course!!!)

Inclusion ROCKS!!

Inclusion rocks, and I just love it.  In the past 6 years, I have witnessed it.  In two different area codes.  Countless hours apart....   This tells me that things are not the way they used to be, and I couldn't be happier about it.

When Lincoln received his academic award at his old school - i really started to realize that inclusion was "in".  When we re-located,  and had to leave the school where everyone knew Lincoln, I was sad.  I was sad because I didn't know if we would ever get to witness something so amazing again in his new school.  I was sad because we had to leave all of Lincolns new friends who accepted him for who he was behind.  The truth is, I was sad because i was scared.  Scared of what to expect, scared of the un known, and scared of not having the same inclusion that we had previously experienced.  But, with all things, good things take time.  Last week we got to see Lincoln receive another award at his new school.   Character Role Model Award.  He was recognized for his important help in developing character - for making an impact in his class, school and community to make them a better place.  This.is.just.awesome. !!

I'll be honest with you that the sadness I felt after re locating stuck around for quite some time.  We went a couple of months of dropping him off, and picking him up, without anyone really acknowledging  him (or so it seemed).  I know I should have never expected him to fit in at the drop of a dime, besides, all the kindergarten kids had already made their friends at the start of the year - Lincoln was the 'new kid'.  It was a change.  He used to have kids line up waiting for him to get dropped off, kids who would help him off the bus and make sure he made it down the steps without falling and carry his back pack, followed by "BYE LINCOLN"  That was heart warming, and made the day to day thoughts of 'what ifs' disappear from my mind.

As we have been in this town for 5 months now, people are starting to get to know him.  We go to the park and the kids know Lincoln, we go to the grocery store and kids say hi to Lincoln.  His teacher takes the time every day to write down his daily activities, and always says good morning with a smile.  Kids pass by him in the hall and say hi.  Kids yell out of their car windows to say bye.  Kids is where it starts.  I truly feel everyone gets to benefit from having Lincoln around.  He welcomes us to know that just because you may be a bit different, doesn't mean you're not capable of being included.

I know it might not be easy to understand, but when your child is 6, and is hard to understand, and needs extra help doing certain things his fellow peers can do independently, inclusion is kind of a big deal.  and I love it.  You're only as different as you make yourself.

Thank you to everyone who is part of Lincolns life - for including him for the true joy is brings to life.

Keep on shining Lincoln.  You light up my world more than words can ever say.

What Living With Down Syndrome Has Taught Me - WDSD 2015

Its almost World Down Syndrome Day!!   March 21 marks World Down Syndrome Day (WDSD) every year  (because March is the 3rd month, and on the 21st day - 321 - 3 copies of the 21st chromosome).  Everyone around the world takes this day to celebrate the individuals who live with Down syndrome.   So we will be celebrating.  Celebrating all that Lincoln has taught us.  Celebrating differences, celebrating abilities, and just celebrating everything that he is and has to offer.  

Lincoln has taught me oh SO much during his short little life so far.  Most of all, patience.  I used to get "rushy" or "pushy" when it would take him forever to do something I know he can do, but I've come to terms - that thats what is actually slowing him down.  Don't rush him.  Just don't.  Simply because... you can't.  He has always stood on that top step, gathering his balance, singing a song - or contemplating something in his head before he takes that first step down.  Not only that, but he takes his time coming out of school, takes his time going to the bathroom, takes his time getting in the car and walking from point A to point B... just to name a few.   I have patience.  And a great deal of them.  I have invested hours and hours of time just waiting.  But that's ok.  The amount of time Lincoln has invested in and walking and talking and everything else he tries extra hard going, gives me even more reason to have these patience.  Besides, now we literally get to live in, and enjoy every single moment.

Lincoln has taught me what family really means - unconditional love.  If you would have asked me 6 years ago, if this was the family I had envisioned,  I would have said no.  It may not be the life I dreamed of, but its way more beautiful than the life I had in my dreams.  The joys we endure, and the things we accomplish as a family far out weigh the pain we have ever had to go through.  We have a real kind of love, and its deep.

Lincoln has taught me acceptance...and with acceptance, it leads to awareness.  When we accept one another as equal, our perspectives become real.  We can learn from one another.  We can listen to one another and respect each other.  We can allow ourselves to be aware of others experiences - instead of judging by what we see.
Its taught me not to stare at the child having a tantrum in the grocery store.  Not to stare at the person in the wheel chair.  And not to stare at someone who may look a little different to you.  We all deserve acceptance.   Learn to love everyone or at least tolerate it.  Everyone deserves a chance to be happy.

Lincoln has taught me to never give up.   He is such an inspiration to be the best and bring the best to everything.  He has worked so hard to get to where he is today.  His determination to do things he wants to do has not only inspired me, but many other people around him who have been with us on our journey.  His life has impacted so many other lives in his young 6 years.  He inspires others to do good.  He shows the world how full of light and love he is.  He brings happiness to not only to us, but to those he is around.   He has honestly pushed us to be better people.  To see that the grass isn't greener on the other side.  Its all in what you give.

So, Lincoln... I want to thank you.  Thank you for teaching me patience, acceptance, unconditional love, and to be the best me I can be.  Thank you for teaching me the things it sometimes takes people an eternity to learn.

So, on March 21, I am inviting you to help celebrate with us.  Wear your funky socks, share an article about Down syndrome, read something about it.  Tell someone how Lincoln has impacted your life - or someone else you know who happens to have Down syndrome.  Acceptance starts with us.   And celebrating is a great start.

HAPPY WORLD DOWN SYNDROME DAY!!