Friday, March 22, 2013

Can You See My Child?

I watched this video this morning and just enjoyed watching two young people with Down syndrome do ordinary things. Then it got to almost the end of the video and the young lady said, "Even though I have Down syndrome, I still think of myself as a real person." and my heart broke and tears came.

I'm glad that she sees herself that way. It made my morning to see that she (and the young man in the video) seems to have a lot of confidence in herself and her capabilities, but she shouldn't have to even clarify that she thinks of herself as a "real person". She IS a real person, first and foremost, Down syndrome comes after that fact and is just a part of what makes her the person that she is.

Yesterday on Facebook I saw a post from an acquaintance on an encounter she'd had with a young man with Down syndrome and how it had changed her perspective. She went from pitying those with "that disability" to admiring them because this young man "prophesied" over her son and was "filled with wonder and excitement". Her post and the comments of others pointed out to me how people with Down syndrome are either seen as "less" human or "special" human. I did comment to the effect of how I hope my daughter will be seen as simply HUMAN and I was going to let it go at that. But, now that I've watched this video and gotten stirred up I just can't let it go.

*I do want to say that I don't hold anything against the young woman who posted the Facebook post or anyone who commented. I feel like sometimes people think I am just a mad Mama out to get anyone who doesn't agree with me. That's not it. I'm just a Mom on a journey. I'm learning as I go and I'm hoping that the rest of the World will want to learn along with me.*

Now, with all that said,  here's where I've been going with all my "stirring up". I'm not eloquent and my tendency towards ADD doesn't allow me to expound on all my little thoughts and ponderings like I'd want to. So, I'm gonna lay it out in bullet points and hope that others will come along and help me answer the questions or even raise more. That's how we learn best, right?
  • What if the young man my facebook friend met hadn't been a Christian? If he'd just said "what a cute baby" and then talked about other things? Would she still have had her perspective on people with Down syndrome changed?
    • My guess is no, and that makes me ask- "Why does he have to have that in common with you in order for you to see him differently that you would have?" (maybe just human nature...?)
  • Why can't people see that having the attitude that those with disabilities are "less" or "super" human is what leads to them being marginalized in education, health care, employment, etc?
    • I shouldn't have to fight against these attitudes to get Liza included in Kindergarten! Dammit!
    • I shouldn't have to tell folks who work at a hospital for kids with special needs that using the word "re*ard" is not something they should do! Dammit!
  •  What is society doing to people with Down syndrome (and other disabilities) when the messages that they get are that they are either a "special" person or a "lesser" person?
  • What is it going to take for us as advocates to change the way society sees our kids? To get them to see them as people?
I'm not by any means an expert on inclusivity (is that a word? maybe it should be.) or accepting everyone who is different from you. I catch myself at times being judgmental due to some stereotype, and I hate myself every time I realize I've done it. Or being "too nice" to correct folks when they say something about Liza like, "Oh, it's ok that she hit me. I think it's just her way of saying she loves me."

I just want to grow and learn. Is it too much to ask that the rest of the World grow and learn with me? If you're stirred up too or you just want to learn how to really change your perspective on people with Down syndrome or other disabilities please check out Down Syndrome Uprising.

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Thursday, March 21, 2013

3/21: Big Hugs & BedHead

I love this picture of Liza. Her and her bedhead. This is pretty much what it looks like every morning when she gets up. It's the one consistent thing about her mornings, cause I never know if she's gonna hop right up out of bed with a smile, bat me away and pull the covers back over herself, or just stay sleeping no matter how much I poke/prod/cajole.

This morning was one of those "happy" mornings. She woke up with a smile and then wrapped her arms around me and laid her head on my shoulder. Then, after taking care of "morning business", she needed to be held some more and she patted my back as I patted hers. I really love those mornings.

Today on World Down Syndrome Day, 3/21 for the 3rd copy of the 21st chromosome, I feel like I should be posting about Down syndrome in some way or another, but all I can think about this morning is how this little girl, who greeted me with a sleepy smile and a big hug, just two years ago was a terrified, half-neglected orphan. Two years ago I was pretty sure she did not like me and I was scared that maybe she never would. I won her over, thank God!

I think for WDSD I hope that advocating for acceptance of people with Down syndrome as simply PEOPLE will mean that less children will be abandoned to orphanages or foster care because they are born with Down syndrome. That parents whose children are diagnosed in the womb will not have fear and false information thrown at them.

That's it, my hope for today. 

Wednesday, March 20, 2013

Liza Meets Carissa

The other day Liza and I were grocery shopping in a nearby town (that has more than one grocery store) and we ran into Carissa. I was so happy to see her again. She's always got to know how I've been and how big The Boys (aka The Brothers) are now. It's just nice to run into someone who is genuinely interested in you and your family no matter how long it's been or where life may have taken you since you last saw each other.

This time I was excited to introduce Liza to Carissa. I know that they aren't going to be soul friends just because they both have an extra chromosome, but I am a silly, sappy woman and I feel like Carissa is part of the reason that I knew Down syndrome wasn't something to be scared of, and that adopting a child with Down syndrome could be a beautiful option. So, I wanted to introduce them to each other. Here's what happened:

Me: Carissa, have you met my daughter? Liza?

Carissa: yes (I didn't remember that they'd already met but if Carissa says they have. They have. I know for a fact her memory is better than mine! Must've been last time I saw her at WM.)

Me to Liza: Liza, say hello to Miss Carissa.

Liza: *throws a small container of fruit out of the buggy at Carissa's feet*

Me: Liza, stop that!

Carissa: She's being bad, huh?

And, that's what happened when Liza and Carissa met. No stars falling from the sky. No instantaneous connection.

There have been times when Liza has met someone who also has Down syndrome and seemed to immediately connect with them. Maybe I was expecting that? Or maybe those other times it was the other person who recognized that Liza was "like them" and for Liza it was just another person who she got close enough to to hug before I could stop her. My rose colored glasses do tend to help me see things the way I want them to be.

I'm kind of glad that her's and Carissa's interaction was just that of a naughty little girl meeting her mom's old school friend. That's perfectly all right with me.

I just hope next time they meet Liza can refrain from throwing things.

Tuesday, March 19, 2013

Oh NO! Meg's Pet...

I swear I tried to figure out how to shorten this video of Liza. Not just so it wouldn't be 5 minutes long but also so you wouldn't have to listen to my annoying self as much. But, I promise, it is the cutest thing. Errr, at least I think it is.

Don't you just love the way she says "Oh no!"? I just want to squeeze her to pieces every time she says it. So cute!! LOL

Also, please forgive me in advance for the fact that the "Meg's Pet" song will now be in your head for days. You're welcome! ;o)

Tuesday, March 12, 2013

What Did She Say?!

Pay no attention to the cluttered table.

Liza has been working so hard on learning to really speak over the last two years. In case I never shared before or no one remembers, she could say "net net net" (Nyet or NO NO NO) when I gave her a bath or brushed her hair and that was basically it when I first met her. She also did a lot of babbling and made what we called her "piggy sound" by sucking air somewhere into the back of her throat, it's actually a really cool and unique vocalization and I hope she doesn't forget how to do it. Other than that, when she left the orphanage she couldn't speak. She learned to sign really quickly and for the longest time that was her only way of communicating with us because she wouldn't even try to say words.

*And here's my small PSA for the day: If you're child is non-verbal, teach them to sign! If you're adopting a child who speaks another language, teach them to sign as you transition to your language. If your child is typical and was born to you, teach them to sign. What could it hurt?! Seriously, I am a huge advocate of signing now that I've seen how well it works in helping a child transition from one language to another. Signing also gave Liza the confidence to actually try to speak the words that she was hearing spoken all around her. Now, she repeats almost everything she hears. Including words I sometimes say that I shouldn't.... oops!*

These days Liza can say SO many words! I don't even know how many cause I haven't taken the time to actually think about it and count them up but she is learning to talk and is no longer shy about it and that's what's most important. I can ask her a question and ask "yes or no?" and she will tell me which one she prefers. IE: yes to these shoes, no to those. Yesterday I asked her if she was going to be a good girl and before I could even ask her "yes or no" she answered back, "Ess (yes)". So proud of her! She can put multiple words together and does so with a lot more frequency just in the last few months. 

For a little girl who basically had no verbal/expressive language two years ago, and only understood Russian, I think she has come a long way! And, she's still moving ahead. Gaining her confidence and determined to prove wrong anyone who may have thought that she couldn't do... well, anything "they" thought she couldn't do. She amazes me!

If you made it all the way through this, here's a funny little nugget for you that I shared on Facebook. First, the backstory. Liza has learned to say "flick", and she's also learned to flick things/people/animals but that's a different problem. So, she says "flick" but she's not really got a great grasp of the /f/ and /l/ sounds when they're put together. Are you getting it yet? It comes out sounding like a naughty word. Uh huh..... Now you're getting it, right?

Actual Facebook status from yesterday:
Remember how I shared that Liza learned to say "flick" but it sounded, ahem... naughty? Yeah well, today at CVS she said it about 5 times and I just kept shushing her. Then I looked up and this big dude sitting near us is trying not to laugh and the lady beside me is horrified. Gotta love that kid...
I swear, sometimes I really believe God gave her to me to cure me of my tendency to be easily embarrassed. And, it's working!

Thursday, March 7, 2013

Things I Ponder: She'll Be Coming 'Round the Mountain

She'll be coming 'round the mountain when she comes, (when she comes).
She'll be coming 'round the mountain when she comes, (when she comes).
She'll be coming 'round the mountain, she'll be coming 'round the mountain, She'll be coming 'round the mountain when she comes, (when she comes).

We'll all go out to meet her when she comes, (when she comes).

We'll be having chicken n dumplins when she comes, (when she comes).

She'll be coming 'round the mountain when she comes, (when she comes).
The other day I was singing the above old folk song, "She'll Be Coming 'Round the Mountain", to the little boy that I nanny for. You ever sing a song you've known your whole life and then start listening to the words and wondering, "what the heck does that mean, anyway?" That was me.
  1. Why was she driving 6 white horses? Why not brown horses? 3 gray and 3 black? 4speckled, 1 white, and 1 black? etc, etc.
  2. Where'd she come from? Why'd she go round the mountain in the first place?
  3. Who is she? And who are the "WEs"?
  4. Who's gonna make the chicken n dumplins and are they better than mine? ;)
Google and Wikipedia came to my rescue! Hooray... I didn't know that the song was thought to be about Mary Harris "Mother" Jones and her work to promote formation of labor unions in Appalachian coal mining camps. I always wondered who Mother Jones was. That takes care of numbers 2 and 3. I guess I'll never know the answer to number 4....

The best thing that I learned was that there's a Scottish version of this song. I thought it was hilarious and I'll probably be singing it from now on. Poor granny .....
Oh ye cannae shove yer granny off a bus
No ye cannae shove yer granny off a bus
No ye cannae shove yer granny, 'cause she's yer mammy's mammy,
Ye cannae shove yer granny off a bus!
Ye can shove yer other granny off a bus
Oh ye can shove yer other granny off a bus
Oh ye can shove yer other granny, 'cause she's yer daddy's mammy,
Ye can shove yer other granny off a bus!

Wednesday, March 6, 2013


Today, please take the pledge to remove the word "retard", or any variation, from your vocabulary. Every time I hear this word used as a way to describe something/someone that is seen as dumb or ridiculous I cringe. I don't want to "police" the word or badger anyone who uses it. I've used it myself in the past. But, now that I know what I know I'll never use that word in that way again. And, I hope that others who learn what I've learned will decide the same.

I actually had a family member unfriend me on Facebook once over this word. She used it in a comment to me and I simply asked her not to do it anymore because I didn't like the word. She got offended and unfriended me and stopped talking to me for a while. I honestly spoke up because 1. I DON'T like the word and wanted her not to use it, and 2. because I know others who would have jumped all over her for using it and I wanted to speak up first before that happened. It's sad how words can be so polarizing and hurtful.

If you need more convincing than what I can give, I suggest reading Meriah's post, A Simple Matter of Words, on the subject. She has some links to other really well written articles on the subject, including this one, A Word Gone Wrong, from the New York Times. My favorite excerpt from that article? REasons why the word is hurtful from someone who's felt it's affects:

Here is John Franklin Stephens, a man from Virginia with Down syndrome who serves as a “global messenger” for the Special Olympics. He has written op-ed articles giving lucid voice to thoughts you may never have heard before: 

“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.” 

“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.” 

Would you be able to look into the face of my little girl and tell her that she is "not someone of your kind"? If your answer is no then, please, stop using that word.

Saturday, March 2, 2013

Music and Life: There Were Clouds in My Coffee

Way back before TSwift was even thought of Carly Simon wrote a song dedicated to some guy who is really vain and must have really ticked her off. When I was a kid I remember every time this song would come on the radio I would say to my mom, "This song makes no sense! Of course it's about him. And who is 'he' anyway? " and she would just say something like, "That's the point" and "No one knows who it's really about." I just couldn't get it. It seemed silly to write a song about someone being so vain they thought the song was about them when it was obviously about them.

Now that I'm grown, I get it. The point is that if he really is that vain he's probably been driving himself crazy all these years wondering if it's REALLY about HIM, right? And, on top of that, she could be driving more than one dude crazy at the same time. I now think Carly Simon is a freaking genius! Oh, and TayTay ain't got nothing on her when it comes to using a song to exact revenge on an ex.

I heard the song in my car the other day and the first thing I thought of was the conversations I had with my mom about it as a kid. I love how music can bring back memories - sometimes good, sometimes not. Then I realized that I really like the song now and I listened to the lyrics. For the next couple days the line, "I had some dreams - there were clouds in my coffee, clouds in my coffee" kept running thru my head. I finally had to look up what she meant and this is what Carly herself had to say:  

"Clouds in my coffee" are the confusing aspects of life and love. That which you can't see 
through, and yet seems alluring...until. Like a mirage that turns into a dry patch. 
Perhaps there is something in the bottom of the coffee cup that you could read if you could 
(like tea leaves or coffee grinds). Carly Simon 5/17/01 

Huh?  Okay, I can go with that.

So, are there any songs that have "grown on you" as you've grown up? Any memories of your own that this song brings to mind for you? Or maybe you have a "vain" ex you secretly dedicate this song to every time you hear it?