Okay, another thing I have to get off my chest...
So, today, the office jackass (think Dwight only way more annoying, and wearing high waters...actually, I think Dwight might do that). Anyways.... the office jackass (nicknamed POD for Prince of Darkness or SOS for Son of Satan depending on who you ask) was talking to me about something ridiculous. I honestly can't remember how it came up. But he was getting on my case about how I have nothing to worry about because I don't have any responsibilities.
I said that I have PLENTY of responsibilities, my job, family... he tells me to hold up, my sister is 9 and can take care of herself. Okay, here is the thing. I DO NOT PLAY THE DOWNS CARD UNLESS I HAVE TO. I like to think of my sister as a normal member of society, but occasionally it becomes clear that she is at a different pace. Of course, I think she's brilliant, adorable, and any other adjective that connotes awesomenicity.
I explained to him that it is different, becuase she has Downs, and its just part of my life. I said "it" is here to stay. Meaning the Downs, and we are all aware of it.
He says to me "I don't ever want to hear you call "it" again.
Here is the thing. How DARE he tell me that! I was never referring to it as my sister. I am the one who has to deal with it day after day. Just because you watched Life Goes On a couple of times in the 80's that gives you the right to tell me what I can and can't say about a genetic disorder that affects my family on a daily basis. The sheer audacity of this asshole, to tell me how to feel and how I a person that knows about all of this from the daily struggle of coming to terms with everything and being the one that my parents depend on most, telling me what I can and cannot say about a syndrome that has changed our lives.
Now, I want to be clear. I wouldn't want AK any different. Okay, it might be awesome if she didn't have the pathological need to knock things off the couch arm into the basket (those of you who have been to my parents house over the years know what I mean). I love my sister very much, and it really hurts me when people who pretend to be righteous tell me how I should feel. It hurts that I know things aren't going to be easy and haven't been. I think about what she is going have to deal with in junior high and high school. I think about what it was like for me as the new kid. Being a little bit heavier... how traumatizing that was, and how it will pale in comparison to what will happen with her. And that, honestly, is what kills me.
When I hear him tell me that I can't say those words or express my feelings towards this syndrome - it makes me so angry. I wanted to hit him right there and scream at the top of my lungs: "WHO DO YOU THINK YOU ARE TO TELL ME WHAT I CAN AND CANNOT SAY ABOUT SOMETHING THAT AFFECTS ME AND MY FAMILY ON A DAILY BASIS. JUST BECAUSE YOU HAVE A LITTLE ANECDOTE ABOUT A FRIEND OF A FRIEND WHO HAD A BROTHER WITH DOWN SYNDROME DOES NOT MAKE YOUR AN EXPERT. STOP CORRECTING ME ON WHAT I CAN AND CANNOT SAY. This is real, this is not an after school special.
This is a very emotional topic for me, and when people pretend to know what I went through, and continue to go through, and try to give me life advice about it when they clearly do not know... it makes me so incredibly angry.
I don't try to hide that this is a struggle my family has. If somebody asks me questions, I am more than happy to talk about it. But to come down on me, in a way, when I am trying to describe how difficult it is, is very disrespectful to me, my parents, siblings, and the entire special needs community.
I know I shouldn't be so sensitive about this, put when somebody attacks you on what you carry with you in your heart, there is this primal need to fight back. I understand what they say when mothers will lash out to protect their young. While on a biological level, AK is not my child... I feel that she is, and I feel that my parents, brother, sister and I are raising her.
I wish that people wouldn't feel this need to come up with something clever to say when the DS issue or special needs issues in general are brought up. If you don't know what you are talking about ask questions - we invite them; but please don't correct us if we accidentally choose the wrong words when we are talking about a subject that has rocked us to our very core.
