Daycare Handout.

When I let the daycare know that October was Ds Awareness Month, the director asked me to make a handout. So, here it is. In case you want to use it. Or in case you yourself wanted some information.

Hello friends!

October is Breast Cancer Awareness Month, but it is also Down Syndrome Awareness Month. You may not know me, but my name is Everleigh Gilbert and I have Down syndrome. My mom made up this little fact sheet for you! I am currently in the infant room, but should be moving up to the toddler room soon.

 

·        -Down syndrome is medically called Trisomy 21. It is a third copy of the 21^st chromosome. Although the chances of having a child with Down syndrome increases with maternal age, 80% of people with Down syndrome are born to mothers under 35

·        -John Langdon Down was the man who characterized the condition, but he did not have Down Syndrome, and therefore there is no apostrophe in the name (such as Parkinson’s or Lou Gehrig’s Disease)

·        -There are 3 types of Down syndrome; non-disjunction, mosaic, and translocation.

·        Mosaic and translocation are more “rare” and can be genetically passed down. Non-disjunction is the most common kind and does not have a genetic link. 90% of people with Ds have non-disjunction, just like me!

·        -People with Down syndrome are more alike than different.

o   We like to run and play.

o   We like to colour and read.

o   We like to sing, dance, jump etc.

o   We can attend and graduate from high school and college.

o   We can have a successful career.

o   We can fall in love and get married.

·        -People with Ds can do most (if not all) the same things you can do, it just may take them a little longer to do things like sit up, walk, talk, write, read etc. They will learn to do it on their own time.

·        -People with Ds have a higher probability of being born with heart defects, gastrointestinal problems, eye problems etc. But with advancing medical care, we are able to live almost as long as a typical person.

·        -Fundraising efforts called Buddy Walks are held all over the world, and all monies raised go towards the local region where it is held, with a portion going back to the Canadian Down Syndrome Society.

·        -Although the word ‘retarded’ is still used in medical terminology, it is no longer socially acceptable to use as a synonym for stupid, silly, etc.

·        -Spread the Word to End the Word is (www.r-word.org) is a website with an online pledge, and lots of information on how using this word affects people and families dealing with a disability.

World Down Syndrome Day 2012

(First off....see that header up there? The one for WDSD? My very talented friend Beth designed it. I just supplied the pictures. Thanks Beth! <3)

Just a few minutes old.

Everleigh Ashley-Louise was born April 30, 2011. I had no idea when she was born that down syndrome was going to be anywhere on my radar. After all, that sort of thing only happens to older moms, right?
The nurses never mentioned anything that I can remember. Then again, everything was a blur. My mom was one foot out the door, on her way to a vacation with the family as Everleigh made her debut. Thank goodness Grandma stuck around just a few more minutes. 2:06am.

One month old.

Approx 24 hours after she'd arrived, the on-call pediatrician asked if her dad was Asian. I hesitantly replied no, with my heart in my throat, wondering where this was going. I don't remember words. I just remember hearing down syndrome. And being mostly in denial, but slowly feeling my world start to crumble right then and there. Blood tests were ordered. And I had to figure out how to tell my family, who were basically halfway around the world on a cruise, news which I couldn't even comprehend myself.
I know I had friends around me. Auntie Howlett was there. Erica (my mom's friend) was there. My aunt was there. But still, I felt like an island in the abyss.

Ev (1wk old) and Erica

When I got the blood test results back, I kicked into researcher mode...which was the only way I knew how to deal with what I'd been given. I was told all sorts of things she would never do....breastfeed, walk, talk, learn to dress herself, be potty trained. But for every negative thing I came across, I found blogs of parents (mostly moms) who were saying "look at what my child with down syndrome is accomplishing!". I have been welcomed into this community with open arms and open hearts.

5 Months

You know what? Everleigh didn't breastfeed. That's fine. I was told she never would, and I gave up early. But she's thriving. She rolled at 3 months, sat independently at 9.5 months and is well on her way to crawling. She feeds herself with some success, eats like a champ, and has two teeth at the moment. She was born weighing 5 pounds 12 ounces and currently weighs 16 pounds 2 ounces.
Her first birthday is coming up soon. The 2011-12 year has been a year of firsts. But I wouldn't change the people I'm on this journey with. When I stumble, they help me up. When I need a ear, they listen. I couldn't imagine a better world for Everleigh to grow up in. I have such high hopes for her.

How could I not?

Spread the Word to End the Word

Tomorrow is Spread the Word to End the Word day.
Basically what this means is you take a pledge to remove the word retard or retarded from your vocabulary. Because even though you didn't mean it that way. Because you weren't talking about my child. Regardless of how you meant it, it hurts.

Two mamas I know have said it much better than me:
Beth over at Snaps Of Our Life and
Michelle over at Big Blueberry Eyes

Society needs to realize that using the word retard or retarded is hurting millions of people with intellectual, emotional and/or physical disabilities and their families and friends. There are a ton of other words you can use: stupid, annoying, frustrating, silly, messed up, weird etc.

Originally, the word retard means (as per dictionary.com):

verb (used with object)

1. to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.

verb (used without object)

2. to be delayed.
and in french, retard means slow.

But nowadays, retard conjures up a painful stereotype that society has generated about our kids, family and friends. That they're worth less because they learn differently, look differently, act differently, think differently, speak differently. Even when you don't mean it "that way", it still stings. It still reminds us that our children are not the same in everyone's eyes. Please, take the pledge at www.r-word.org to remove this word from society's vocabulary. Not just today, but for every day.
Because our kids deserve to grow up in a world of respect and love. Not snickering glances and hushed tones.

Grief and Suffering?

So I was looking back on ALL the pictures taken today and there is one general theme in all of them...happiness. My daughter is not suffering from Down Syndrome. She is not afflicted with some disease that is decreasing her quality of life.

Is this a face that is suffering??

The fact that there is a new blood test (which will be available next year if I'm not mistaken) that can tell a woman whether or not her unborn son or daughter has an extra chromosome is a HUGE medical advancement. One I wish I'd had when I was pregnant. I wish I'd had amniotic testing made available to me. Not because I would have aborted, because I wouldn't have, but because I would have been able to prepare for this world, this journey that I'm now traveling.

Materni21 (the new blood test) will be able to tell a family 100% if their unborn child has Trisomy 21, or Down Syndrome. Currently, there is only amniocentesis available for testing, and the false positives produced from this test are still fairly high. Only 1/10 families who receive a positive diagnosis of T21 will choose to keep their child.

There is so much false information being passed around, even in today's day in age. I personally have had commenters telling me that Everleigh won't live to a decent age (fact: people with Ds have a lifespan of 60+ years), or that she'll be retarded (fact: T21 can have an impact on mental ability, but each individual is different), or that she'll never learn to walk or talk (fact: kids w/Ds will learn to walk and talk, but on their own time. Parents who have a child w/Ds need to learn to throw the "typical" timelines away and go by their child's own timeline). 

Everleigh laughs (as you can see up there), she cries, she poops, she sleeps. She pulls hair, she spits up, she breaks hearts, and she brings families together.

She can scream with the best of them LOL

So, the next time you see a person (child, adolescent or adult) with Ds...smile at them. Introduce yourself. Play with them. They are still a person first and foremost. Sure, they have a little bit extra but it's not something contagious. It's something more special. It doesn't make them less of a person, but more.

Things that Everleigh is/is not doing

At 7 months 1 week here are some of Everleigh's are and are nots...

Everleigh is not sitting up on her own
She is not making any purposeful noises (mama, dada, baba, papa etc.)
She is not pulling to stand (or even beginning to)
She is not pushing up into a four point crawling position (hands and knees)
She is not drinking from a sippy or straw cup (and sometimes shows signs of confusion between spoon and bottle)
She is not showing that she comprehends any of the signs I'm trying (milk, more, all done)
She is not doing any hand to hand transfer and does not like to hold items



Everleigh IS response smiling (and her smile lights up the whole goddamn room)
She IS sitting with assistance
She IS eating pretty much anything I put in front of her (minus peaches, bananas and apples)
She IS rolling front to back and back to front, both ways (to left and to right)
She IS purposefully reaching for things (including necklaces and Grandma's hair!)
She IS weight bearing on her legs
She IS able to hold a 4pt position (hands and knees) for a few seconds at a time
She IS able to pull things off her play mat with intense strength (her butterflies NEVER stay velcroed where they're supposed to)
She IS able to sit in her highchair and bat at things placed on the tray
She IS able to fit a whole hand in her mouth and gag appropriately on it (LOL)
She IS able to worm her way into anyone that comes across her's heart
Most importantly...
She IS able to learn to do all the things that she is not currently doing. She will get there.

31 for 21 - Welcome to Holland

Once Everleigh was born, I had people from all over telling me to read a poem entitled "Welcome to Holland". Only, since I'm not really much of a poetry person, I never got around to it. Well, just recently, I decided to sit down and read it. Originally written for autism, it seems to pertain to raising a child with any sort of special need/disability. Here it is for you to read along with me:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

And it really is so true. Okay, so I really did have to mourn the 'loss' of the baby I thought I was going to have (a boy. His name was going to be Noah. I was convinced), a baby who was 'perfect' and had nothing wrong with them. That was my Italy. But instead, I ended up in Holland. With a little girl, Everleigh. 10 fingers, 10 toes, 2 eyes and ears etc. She's got all the bits and pieces she's supposed to. AND, she has a little bit extra. That third copy of the 21st chromosome. You know what? I was so upset that I ended up in Holland when I was expecting Italy, that I never stopped until recently to realize that there is nothing wrong with Holland. There are similarities, there are differences. But the most important part is that they are both geographical locations. That is the most important similarity of all.
Everleigh may not be "typical". She has 47 chromosomes instead of 46. She may have to work a little harder to achieve the same milestones that other kids do. But she'll get there. And really, what difference does the journey matter when the end result is the same?

31 for 21 - Day 4

Again, another day with nothing really decent to post. I think it's because I'm SO exhausted from work last night. Not only have I not had to work since February of this year, but I haven't done overnights in almost a year and therefore my body is kinda "wtf"ing me right now. My knees hurt, my back hurts, and I'm pretty sure trying to get back into the habit of sleeping during the day is hard when you know your daughter is at daycare. I called to check up on her today (something I said I wouldn't do) and as usual, she was doing great. Way to go momma, what were you worrying for?

Auntie Winter came over the other day to take some pictures of Everleigh...and out of all the ones she took, this is my favourite:

I absolutely HATE pictures of me (my brain is going "holy fuck, you have huge arms. Lose some weight, do some toning, you're disgusting) but I love it nonetheless. I don't have many "artsy" pictures of Ev and I, so this one does well.
This is my other favourite:

It's hard to believe she's come from this:

To this:

In only a few short months. My heart, it's overflowing.

31 for 21 - Day 3

I don't have anything mind-blowing to post right now. Everleigh is at daycare for her first day today, and this momma? Well I tidied up our room, folded and put away laundry and now I'm going to crawl into bed and try to get some sleep! (I start overnights tonight. Hopefully it goes well!)
I'll leave you with some snapshots of beauty:

Sleeping on the couch

Something on my mind today

Statistics. Stats are on my mind today. ONE stat in particular.

Approximately 90% of pre-natally diagnosed babies with Down Syndrome are aborted.

1 in 800 babies are born with something a little extra.
80% of babies with Ds are born to women UNDER 35.
Yet prenatal testing is most often only offered to women OVER 35.

It makes my heart ache. All those babies that never got a chance. Did you know that there are websites devoted to children with special needs? Here is one that is well known in the Down Syndrome community. Why don't you go take a look? Who knows, someone may move something within your heart, and you may be able to help a child find their forever home.

It baffles me how someone could think they have the ability to play God and take away someone like Everleigh's chance to live.

31 for 21

So today is the beginning of 31 for 21 - Down Syndrome Awareness Month.
I had a couple ideas for what to write earlier in the day and now I can't remember what they are.

Down Syndrome is the chromosomal abnormality characterized by an extra copy of the 21st chromosome. Hence the term, Trisomy 21. "Normal" people have two copies...one from mom and one from dad. 1 in 691 babies are born with this syndrome...so I guess that makes me pretty special for being blessed with Everleigh! And while at first I was afraid of the unknown, I'm slowly becoming much more accustomed as I learn all the different things she WILL do. We are more alike than different after all!
I leave you with a video that a mom of twin T21 angel boys made: