Awareness.

So I’ve been sitting here trying to figure out how to kick off Down Syndrome Awareness month. I intended to participate in 31for21, which is where you blog every day of October to promote Down Syndrome awareness, but I’m on night shifts and I totally let sleep take prescience last night instead of devoting my time to blogging. So here we are, kicking it off on October 2nd. Oops.

I sat here thinking and browsing other people’s blogs, trying to think of how to start. And then it hit me.

Yes, we need to promote awareness. But WHY? I mean, everyone I know has been really open and welcoming. Since I’ve gone back to work, everyone has been amazing and interested in how Thatcher is doing, and has told me how adorable he is (I agree!). It seems like, in my life, awareness and acceptance are already running rampant.

Except, it’s not like that everywhere. I still read articles on Huffpost or Upworthy about Down Syndrome, and underneath the heartwarming post, there are comments about how kids with Down Syndrome… kids like mine… should have been aborted. About how they are a burden on society. About how they shouldn’t be allowed to live normal lives, be included in “typical” classrooms, or have jobs. And I look at the abortion rate of babies with a prenatal diagnosis (something I plan to cover in a separate blog): 80%. EIGHTY PERCENT. Eight out of ten families who find out that their baby has Down Syndrome, abort them. Just because of one extra chromosome. So, clearly, awareness must be raised. Acceptance isn’t here yet. We are far from it.

But with this blog, I wanted to get into how far we have come, and how proud we should be of our forefathers, who raised amazing kids with DS despite adversity, and helped us to be where we are now. Without them, Thatcher wouldn’t have received the care he has. He wouldn’t have been set up with physiotherapy at two months old. We wouldn’t have our local Down Syndrome Association. Without them, nothing would have changed.

You might wonder what I’m talking about. Maybe some of you are old enough to remember those times. Maybe, like me, the only injustice you recall for kids with DS was that they were in the “special needs” class in school, where they were totally segregated and made to feel like outcasts by us, the “normal” kids. And yeah, that’s pretty bad. But it’s not nearly what I’m talking about. I’m talking 60, 70, 80 years ago. When people with Down Syndrome weren’t even treated as people.

I had a conversation a few weeks ago with a lady at work. The topic of DS has come up a lot at work, because people have a lot of questions about it (which is great, and I appreciate it! The more you know, the better!), and because we have a few patients right now with Down Syndrome. The conversation I had with this woman both sickened me and made me thrilled that we have come so far. She told me that her father, who must be in his 70’s or 80’s, had a soft spot for people with Down Syndrome. The reason being, every day when he walked to school he would see a little girl with DS sitting in her bedroom window. The girl’s siblings went to his school, but the girl never left the house. She had a room upstairs that she wasn’t allowed to leave; the parents would come in and feed her and change her, but that was it. And back in the day? That was NORMAL. Some people with kiddos with DS would ship them off at birth, pretend they never even knew they existed, pretend they died. It was shameful to have a kid with Down Syndrome. It wasn’t acceptable in society. One in 600 live births is a child with Down Syndrome. But somehow it was something to be ashamed of.

I feel for those parents. I wonder, if they are still alive, what they think of how things have changed. Are they glad to see that people like their daughter have normal lives, go to inclusive schools, graduate, go to college, get married? Do they feel sorrow for the life their kids could have had, if things were different? I imagine they must, although I know how hard it must have been for people to go against the grain and fight for education, fight for healthcare, fight for rights. It’s a fight that may not be as obvious today, but it’s still being fought. It’s being fought because of the abortion rate. It’s being fought because of the trolls on the internet who think that my child doesn’t deserve to be here, to have an education, to have a job, to have a normal life. And it’s a fight that I will continue to fight, not just this month, but every day, because I never want to be the parent that looks back in sixty years and thinks, “I should have done more.” My child will never be locked in a proverbial room. He will be running around that neighbourhood with his brothers and sisters, walking home with that neighbour boy, who will still, when he grows up, have a soft spot for people with Down Syndrome. But the soft spot will be because he knows and loves Thatcher, not because he never had the chance.

Spread the Word.

There are two sides to the “being a parent to a child with Down Syndrome” coin.
There’s the side wherein you don’t want people to view your child as “the kid with Down Syndrome,” “the Down Syndrome kid,” or, worst of all, “the Down’s baby.”
And then there’s the side where you want to shout it from the rooftops, to normalize Down Syndrome, to make people ‘see the ability’ and know that Down Syndrome is common, it’s out there, it’s not scary, and that our kids are capable of anything.
I toe this line, and which side I’m on depends on the day.
Today, I’m shouting it from the rooftops.
Today, I’m letting everyone know. Because of one word. The R-word.
Yup, the R-word AGAIN.

Now, I’ll be 100% honest. When I was a teenager, my aunt worked with people with disabilities. She would tell me time and time again not to use the R-word. And I didn’t listen. Yeah, I tried. But it wasn’t important to me. She just told me it was offensive to people with disabilities, and I didn’t really get why.

Well, that damn word came up again today, and it won’t go away, and I feel the need to explain again why it’s offensive.

So, here’s what happened. I was in a professional setting, where I was a client, and I was talking to the person working there. She was asking me about Thatcher. I said he was growing up way too fast, and her response was, “I know! It’s retarded how fast time flies!” I stopped her right there. I told her that yes, time flies, and that is many things, but it is certainly not retarded. I told her that the R-word is a word that we no longer use in our household, because of my son, who has a disability. Her answer? “Oh right, he’s Down Syndrome.”

Actually, he is NOT Down Syndrome. But yes, he has Down Syndrome. Two totally different things. Down Syndrome does not define him. It’s not who he is. It’s a part of him, yes. But he’s Thatcher, thank you very much.

Fast forward my story, I posted about this professional to a group on social media, and while most people were also appalled at what had happened, one person told me I was being a hypocrite for being offended and for educating this professional. About a month ago, I had referred to Michelle Duggar as an idiot. Yup, a celebrity who willingly puts her life in the spotlight is apparently not allowed to receive criticism on a public forum. A celebrity whose claim to fame is spitting out J-named offspring, and petitioning against the rights of transgendered people. Let’s see. I’m standing up for people with disabilities, but that’s hypocritical because I hate homophobic celebrities? I can 100% see the logic here, can’t you?

Anyway, this got me all riled up, and let to yet another Facebook broo-ha-ha. A lot of friends of mine stood up for me. There are probably some people out there that were pretty angry with me. A lot of stupid things were said from all sides of the argument. And the point? Totally lost.

So what was the point? Why was I so upset by this situation? Because even when the R-word isn’t used to describe Thatcher, it’s demeaning him. Let me explain:
The word “retarded,” at the very root of things, means “slow” and “delayed.” It’s a medical term, albeit an antiquated one. It was used to describe people who were developmentally delayed. So if you were to call Thatcher retarded, and you were a doctor, you would be from the middle ages, perhaps, but you wouldn’t be wrong.
Here’s where it goes wrong. Nowadays, we use the word “retarded” to describe things that are stupid, or ridiculous. So for example, the professional I saw today used it to describe how ridiculously fast time is moving.
So, what’s the problem with that? Simple. You’re taking a word that describes my son, and you’re making it a bad thing. You’re making it something stupid, something ridiculous, something crazy. You’re making the word mean something else, something bad. So now that word that describes my son, that word is a bad thing. By association, my son’s delays are now a bad thing.

Do you get it yet? If not, I’ll use another example. Take the word “gay.” It’s used to describe someone who is homosexual. There’s nothing wrong with that, right? But you take that word, and you use it to describe things that are lame. Maybe you are homophobic. Maybe you’re not. The misuse of the word “gay” certainly started out with homophobes and spread from there. So you take the word “gay” and you use it to describe things you think are lame, and things you don’t like. You don’t like that movie? “That movie was SO gay!” …. see what you just did? You just took the word “gay” and made it something bad. By association, if a person is gay, they are now bad, too. You don’t have to call a person “gay” to make it offensive, you just have to use the word in an offensive context to basically insult every homosexual person on earth.

The R-word is the same. You’re taking a word that describes my son, and you’re making it bad, making it wrong. It might have started out as a slur by people hating on people with special needs, but even if you know or love someone with special needs, your hateful use of the R-word is them. That’s why we need to Spread the Word to End the Word. We need to stop using this word, period. You’re never using it “in a non-offensive way.” It’s always being hurtful, whether it’s intentional or not. Maybe you think I’m a hypocrite. Maybe you don’t. I don’t care. I just care that you think about your words before you speak, and you think about what those words mean and who they might hurt, intentional or not. I’m doing my best to, as well.

And if I correct you, or point out your use of the R-word? I’m not trying to offend you. I don’t judge you. I know it just slips out, because it used to slip out of my mouth, too. I’m just telling you because the more we can spread the word and educate people on why the word hurts, the faster we can eradicate it. The faster we can eradicate antiquated ideas on what kids like mine are, what they can do, and what defines them. The faster we can make people realize what people like Thatcher can do, rather than focusing on what they can’t.

That’s what side of the coin I will always be on. Thatcher’s side.

Half Birthday

So Thatcher turned six months old today. It’s hard to believe that half a year has gone by already. More than half of my maternity leave is over and I can’t imagine not spending my days hanging out with my favourite little bird. I’m trying not to think about that fact yet.

Instead, I’m thinking over the past six months and how our lives have changed. Before Thatcher was born, I thought I knew how our life would look. We’d have 2.5 children, get out of debt, buy a house, start saving for their university educations. They would move out at 18, get married and we’d become grandparents while bragging to our friends and neighbours that our daughter finished her PhD and our son just accepted a new teaching position in some country in Europe.

Now? It’s mostly the same image, with a dose of reality. Life is probably not going to be ordinary. It might not live up to the high expectations that I set when I was 15 and thought that I was going to be the most successful person ever and own a tiger and live in a custom-built home (Really. Those were the things I thought I’d have). Instead, life is going to be extraordinary. It’s going to exceed my expectations in the best of ways, and be full of so much love it still brings me to tears occasionally (blame the hormones.. can’t I still blame them?!). It might be full of therapies, or blood work, and specialist’s appointments, but it will be amazing.

In his short life, Thatcher has taught me to be stronger than I ever imagined. He has taught me that I can be a strong advocate for those who need it (like when I pushed and pushed to not give him bottles or pacifiers or formula, and adamantly swore that I would make breastfeeding work… and eleven pounds later… it obviously did!). He has taught me to love fiercely and unconditionally. When he was born, the first thing I saw was his Down Syndrome. Now all I see is Thatcher. He is smart, he is strong, he is handsome, and he is good. It has become our mantra and I tell him every day. He is not a child with a disability. He is a child with SO MANY abilities. He will do amazing things. He will teach the world that different can be amazing, and that everyone is capable of doing things if they believe they can.

When I was decorating Thatcher’s nursery, I made four pieces of wall art. They are all E.E. Cummings quotes, with little nautical images behind them. It’s really funny, the way things work out. I chose four quotes that I liked, but I didn’t think 100% about how they would impact us. My favourite of the quotes is as follows; “to be nobody but yourself in a world that is doing it’s best to make you somebody else, is to fight the hardest battle you are ever going to fight.” Obviously I chose it because I feel strongly in being yourself and being what you want to be when you grow up, but I think now that it is so much more than that. Thatcher is who he is. He isn’t who I thought he would be, but he is exactly who he is supposed to be, and I will always encourage him to be himself and only himself. He might be different, but different is phenomenal. Nobody can change him, and nobody should. I think it’s something we should all live by.

Another thing that I have been thinking about a lot lately is Down Syndrome awareness. When Thatch was first born, I wasn’t into it. Don’t get me wrong, I am all for inclusion and rights for people with disabilities. It’s just that I didn’t want people to see Thatcher as “the kid with Down Syndrome” and I didn’t want us to be seen as the family with the child with Down Syndrome. I wanted us to be a “normal” family. What I didn’t consider was that that will never be us. And that’s okay. Case in point: This week I went to the community pool with Thatcher, a friend, and her daughter. The pool is attached to an elementary school who happened to be ending for the day as we were leaving the pool. As we were walking out the door, there was a group of kids with their caregiver leaving the building. Out of five kids, my eye was drawn to one girl. She was probably seven or eight, with red hair and adorable purple glasses. And she had Down Syndrome. Now, maybe I notice people with Down Syndrome more often now because of Thatcher. Or maybe I would have noticed anyway, because she didn’t look like a typical child. Either way, I noticed her. And I thought, what an adorable little girl. I didn’t think anything negative. I just noticed, that’s all. So… maybe people will notice Thatcher. They might think he is different. But damn if I won’t do everything I can to make sure that when they notice him, they also notice how smart he is, how strong he is, how handsome he is, how good he is. They will notice all those things that are my mantra. They will see that he is different, maybe, but they will see all the ways that he is just like everyone else, and even all the ways that he is phenomenal. If everyone was aware of what Down Syndrome is, and what it isn’t, that’s what they would see. They wouldn’t feel sad for us, or say “I’m sorry” when I tell them about his extra chromosome. They would ask us questions to further their understanding, but they wouldn’t think for a second that there was anything wrong with him, that there was anything that he wasn’t capable of.

So, what does this epiphany mean? Will I focus on Thatcher’s extra chromosome? Absolutely not. But will I shy away from questions, or close myself off from people who want to learn about what it all means? Nope. I will do my best to educate my friends and family, and to advocate for Thatcher and push him to do his best and explore the things he loves to do as he grows and discovers new likes and dislikes and hobbies. He will be the best that he can be, and do the things he loves, and I will stand by him through it all.

This Tuesday, we get to meet one of our biggest inspirations, T from Happy Soul Project and her amazing family, including Pip, her beautiful one-year-old daughter who happens to have Down Syndrome.  We are meeting them for a story on Global News about their family and T’s amazing job of advocating for Pip and helping to educate the masses and get everyone to see how different is beautiful. I am so psyched to meet them as they have been such an inspiration to our family… they are paving the way for people to see Down Syndrome in a different light. By all means, if you are somehow reading my blog and haven’t checked out Happy Soul Project yet… do it now! You will not be sorry, and will start following on Facebook just to see the daily, adorable Pip photos.. I know they brighten our day!

All in all, if you are still with me here, this has been totally random ramblings of my brain, just wanted to recount my thoughts recently… a lot of them have just been due to reminiscing over the past six months. If you are reading this and you are at the beginning of your journey with your child, whether they have Down Syndrome, are typical and have no health issues, are a preemie, whatever the case is… The next six months are going to be hard. Some of us have more challenges than others, but I think it’s hard for everyone. There are sleepless nights, hormones, etc on top of any medical issues going on, and some days you’re going to think it’s more than you can handle. It’s not. I’m not religious so I don’t buy into any of that “God doesn’t give you more than you can handle” business per say, but what I do believe is that you are stronger than you think. When I was pregnant, I worried that I wouldn’t know how to raise a child. When Thatch was born, I worried that I wouldn’t know how to raise a child with Down Syndrome. But you get through it. You learn with your child, you and your first born learn together. You teach them, and they teach you more than you could ever imagine. My life is nowhere near where I pictured it when I was fifteen. But it is so much better, so much richer, filled with so much more love than I could even imagine, and I wouldn’t change it for anything.

So happy half-birthday, my little bird. I can’t wait to see all the ways that you will change the world.

Labels

Okay so.

My last blog was started September 19, 2013, and last updated September 29. Then I forgot about it for over three months. Whoops.

I’m going to continue that one because it’s something that I would like to reread in the future, and I still want to post it, but I wanted to apologize to everyone who said they were going to follow my blog, only to have me stop blogging after one post!

I will finish my original post tonight, with a break between when I started and now.

We got a new computer for Christmas, so I’m hoping that makes it easier to spend some time on here, and Thatcher actually has a good bedtime routine happening, so I should start having some time to blog in the future.

I can’t promise what I will blog about. There are a lot of blogs out there about Down Syndrome, and I guess that’s kind of what mine will be about. Except that really, that’s not all that my little family is about. I have found that in my four months of being a mama, the thing that annoys me the most is when people send me articles, posts, blogs about kids with DS. Now, close friends of mine might send me things sometimes, and that is okay. They screen them and figure out what I might like. And I have a few blogs I like to follow, about families with kids with DS. That is also okay. But what really grinds my gears? When people I went to high school or college with send me links about kids with DS, and they haven’t even talked to me in five years! What is that?!

I have a hard time getting into words what I think is wrong with this, but I will try.

Basically, there is a Facebook group I follow called Lose the Label (https://www.facebook.com/Losethelabel). Their campaign is basically about how people with Down Syndrome are just that – people. They happen to have Down Syndrome, but that is not their defining characteristic. They are just regular people first and foremost. I feel like, when randoms who I haven’t talked to in a zillion years message me links and photos and videos, that they have forgotten this, or that they are not aware. They don’t know that we are just a normal family. Thatcher is a normal baby. Does he have Down Syndrome? Yes. Is he different than any other baby? No. We do normal mama/baby things all day. We get up, we snuggle, get dressed, do tummy time, eat. He has his bath every night and I sing a ridiculous song I made up that makes him laugh, and he goes to bed. Everything in between is normal too. Yes, we have an OT come to our house every few weeks. And we have seen a few specialists. But honestly? That’s once in a while stuff. In our every day life, we are boring, run of the mill people. Just a mama and her beautiful baby bird, who amazes me every day with the things that he has accomplished and the strength and personality that he has. No matter what his chromosomes say, that is what we would be. We are not different, and I don’t expect to be treated that way. I don’t appreciate being labelled “That girl whose baby has Down syndrome.” I am the girl with the beautiful baby with slate/blue eyes, and wonderful, gummy smile, and the chubbiest cheeks in the world. That’s all.

So, now that I’ve been lost on a tangent, yes, I might post some things about DS. I might post some things about my crazy dogs being lunatics. I’ll post places we go, things we see. But mostly, I’ll just post about my beautiful, bouncing baby bird.