Thursday, September 30, 2010

October is...

Cooler weather
Fall break for the boys
Columbus Day
Down Syndrome Awareness Month

Oh, wait, were you shocked by the fact that I was actually posting and didn't read the list above? (I know, 2 1/2 weeks without a post is a long time in blogging world) Let me repeat the list...

October is:

Down Syndrome Awareness Month

Yes, I think that out of the entire list, the only thing that really matters is that Ella Bella has an entire month dedicated to raising awareness for Down syndrome. That rocks.  We need more awareness. Not just for the general public but for us, her family as well. Here in Ella Bella world, we get so caught up in how adorable she is, we tend to forget that we need to focus on our sign language lessons with her, our reading on her development, our commitment to the Down syndrome community. October is her month. October is my month to get my goals on track.

I also decided that I am committing to 31 for 21. 31 days of blogging for Trisomy 21.  I am going to do it. I am not alone, there are lots of great parents who are doing it and well, I am sure you all can't wait to see what I have to blog about for 31 days straight.  On day 20, you might read about what I made for dinner and who I flipped off while driving, but this 31 for 21 thing is a real mission that has been going on for many years and I want to be part of it, so starting tomorrow, it's on.

I had a really good blog for tonight, but like any good business person, I need to make sure I deliver on my 31 for 21 pledge, so I will see you tomorrow on day 1 with my really good post! :)

Share my blog, let people know that for the next 31 days I will be posting everyday. Tell them that Ella is cute. :)


Monday, September 13, 2010

Semantics matter to some...

I almost didn't post this one...

In the past 6 months I have met people and read blogs about others who have children with Down syndrome.  Some of them are people I would be friends with even if our kids didn't share an extra chromosome. Some of them I wouldn't be friends with even though our kids share an extra chromosome. What I have discovered is this...

Semantics really matter to some people.

The term "semantics" refers to linguistics and the meaning, form, and interpretation of words, signs, sentences, etc.
People most often use phrases like, "Let's not argue over semantics." This usually means that the general meaning (of a word, phrase, sentence, subject, etc.) has been addressed, and the conversation has stalled on small points that have no bearing on the overall/main subject matter.

I am finding that no matter how I say "Ella has Down syndrome" I am making someone angry.  It is always someone who:

1. Doesn't know me or my family
2. Doesn't know Ella

These someones email you in the middle of the night telling you how you are wrong to call it Down syndrome, there are new names for it that don't use the word "Down". These someones post on your facebook wall that you are bad for calling it special needs, it is special abilities. These someones tell you that if you put the Down syndrome before the noun (baby, Ella, cutie pie, etc) you are defining the child and therefore, ruining its life. These someones make you feel like you pretty much suck at dealing with a child with special needs even when you think you are doing A-OK.

These people try to pass their comments off as advice or help from someone who has been there / done that, but really, it comes across as "if you don't agree with my way of thinking, then you are stupid and ruining your child".  In their minds, there is no room for my way of thinking or my feelings. I don't like this. I take everything I read, everything I am told, everything I hear, into consideration. I might not agree with your view point, but I don't think you are wrong for thinking it. I just need to find my own path and follow the ways that make sense for my family.  Why is that bad? Who are they to judge us, or anyone for that matter?

This is how my mind works..  Good or bad, it is how I feel about my situation..

I don't get why they want to change the name of what Ella was born with.  Why can't we call it Down syndrome? When we go to the dr. or meet a therapist, they call it Down syndrome. As Ella grows up, her peers, her teachers, the school bullies, they will all call it Down syndrome.  They won't change the name to make her feel better about it, they won't sugar coat it. She needs to be able to respond in an appropriate way. She can call it whatever she wants, but she needs to know what others will call it and why it is called that.  Ella will learn, as she gets older, that it is called Down syndrome after the name of a person, not after a defining trait of the syndrome.  She will be empowered to teach people, in her own way, about her extra chromosomes. It doesn't matter if we change the name, it still is what it is. 

Ella also has special needs.  You can disagree all you want, but she has special needs, not special abilities.  She is not Superwoman, she can not see through walls or leap buildings in a single bound. Those would be special abilities. In fact, none of my kids have special abilities. I don't either. Some children excel in one thing over another, but in the grand scheme of things, the only people with special abilities are superheros.  Why can't Ella have special needs?  Is it the word special that throws people off?  If so, we should call it different needs, but we should keep the word needs.  We all have needs, some of us just don't have needs that far off from the needs of the general public, but some of us need a little more than the general public, and guess what, I am happy that we have systems in place to address that. I am glad that her special needs mean she gets therapy and extra help when she is in school. Letting the world know Ella has special needs means the world can help Ella with her special needs. If someone takes the words "special needs" and turns that into something bad, then I will educate them why it isn't bad, just different. If they choose to not listen, they aren't worth our time anyways and no matter what I called it, they weren't open to hearing it.

I didn't accept Ella having Down syndrome for the first 24 hours of her life.  I convinced myself they were all wrong and I would wake up the next day and next to me would be my dr. She would apologize for the wrong diagnosis, ask how I was feeling and go about her rounds.  That didn't happen.  Hour 25 brought a social worker and signing up for state programs to help Ella.  At that moment, I accepted Down syndrome and her special needs. I accepted all of it just as it was, no special names, no sugar coating the road ahead for all of us. I had to accept it to make sure everyone around me accepted it.  If I call it something different, aren't I showing Ella and everyone else that I don't accept it as it is? I don't have to like it, there are days I hate it. There are days I want a different life for Ella, but I accept the life we were given.  Shoot, there are days I want a different life for me, or my boys, or anyone going through a tough time, but I accept that it is what it is, no matter how we try to dress it up. How we react to what we are given is what matters, not what we call it.

OK. Off my soap box. 

Here is a pic of my special baby..  :)