Friday, April 26, 2013

"Sweets"est IEP Meeting I Never Had

Last night I dreamed that we were having Liza's IEP meeting for next year. Not sure why I'm dreaming about it because I am NOT prepared at all. One of my other children, one of the male persuasion who doesn't like to be mentioned much on "Mar's" (that's Mom for those of you without nutty teenage boys) blog, has a somewhat serious health issue going on and that's been my major focus for the last few weeks.

No worries about the kid. He's doing ok and they say that once he has surgery next week to remove the problem that we shouldn't have to worry about a recurrence of this particular issue. Thank God for that! But, it has added some extra stress to my already usually hectic life. I think he's a little stressed about it but mostly he makes jokes and uses it as an excuse to get out of chores. Example -  Me: What's up with you not doing your dishes? Him: I've been deathly ill Mar! Me: *eyes rolling all over the place*

This is my life.

So, back to my dream.

The school personnel, (the usual suspects: Assistant Principal, Reg Ed Teacher, SpEd Teacher, Speech Therapist, Psychologist) and I are all sitting at the table and I tell them that next year Liza IS going to be included in Reg Ed more than she was this year and if they can't figure out how to make it happen I will get an advocate to come to every meeting with me and take it even further if I have to. They all look at me like they can't believe I would say that to them. 

Then I say, "It's nothing against you all. I really do LIKE all of you but I LOVE my daughter!" then they're looking at me like I've really just  hurt their feelings. Like, why do I love Liza but not them?! LOL (my brain, she's nuts!)

That's when the School Psychologist, Lance Sweets (you know, the baby-faced psychologist from Bones) says to them, while smiling his cute little Sweetsie Smile at me, "That's actually very logical." and I know that he means EVERYTHING I just said and not just the part about liking them but loving Liza.

Then I woke up.

This one stands right up there with my All-Time Weirdest Dreams Ever. Anyone care to interpret?

Monday, April 1, 2013

Better Off Hidden Away?

 I woke up this morning at 6:00 AM because that's when my alarm goes off every weekday morning. The "problem" is, today is the beginning of Spring Break so I should have been able to sleep in. It's ok though, cause I got a shower all to myself, no little girl crowding in on me. I also got to do a little yoga and now I'm sitting here blogging, drinking my coffee, while the house is quiet except for Liza trying to decide if she wants to wake up all the way now, or later.

I also woke up thinking. A lot about the Ethan Saylor case. Mostly I just keep thinking about how it seems no one cares except for those of us with close ties of some kind to the Down syndrome or disability community. That makes me sad, but it also really makes me angry. A perfect example I can think of is a woman I had a little discussion with on racism, she thought it was racist that Trayvon Martin's shooting got so much publicity but the shooting of little Antonio Santiago didn't (according to her). I told her that what she was actually doing and saying was racist and then told her if she really wanted to get angry about an injustice she could add her voice to those of us who were signing a petition asking for an independent investigation into Robert Ethan Saylor's death. Not once, but twice, I suggested this to her. Up until that point, she was arguing back with me but once I gave her a real outlet for her righteous indignation all I got was crickets. Of course.

And, it seems like, if it's not coming from our own side, that's all we're going to get. Oh, and we're not getting a great response from some on our own side either (you may notice there was no mention of them discussing or requesting an investigation). It's really pissing me off!

Why can't people get mad about a young man being killed over a $12 movie ticket?! Doesn't it sound so simple? If that's all you heard about the whole story wouldn't it make you angry? So why is it when we say, a young man with Down syndrome was killed over a $12 movie ticket, do people just keep on scrolling and not giving it a second thought? That's discrimination, isn't it?

Now, it's 11:30 at night and I'm just tired. Angry and tired and a little worried about the World my daughter is growing up in as an individual who happens to have Down syndrome. Sometimes I think about the Ukrainian Judge who worried that, maybe, Liza was better off living hidden away in orphanages and institutions. Places where the outside World couldn't belittle her and mistreat her just because she's a little different. I'm NOT saying I agree with this judge, I'm just saying that I can see how easy it is to get to that way of thinking when you know stories like Ethan Saylor's and Antonio Martinez's (Martinez was pepper sprayed and beaten by police). But, it's not the ones who are different who need to be hidden away for their own good. It's the ones who would refuse to accept and include them who need to change. For their own good? Well, yes, and everyone else's too.

If you want to help get justice for Ethan Saylor please sign the petition asking for an independent investigation. Down syndrome did not kill Ethan, the ignorance of three off-duty police officers did. Then call the Department of Justice at 202-307-5138. The DOJ wants to "gauge the public reaction before taking the next steps", so just let them know your reaction to a man being killed because a few cops couldn't have a little patience and common sense. Then feel free to post about both of these ways to help on your blog, Facebook, whatever. Just don't keep scrolling and forget about it because "it doesn't effect you". It effects all of us. This is a HUMAN rights issue.

If you want to know more I'd suggest reading these blogs: Down Syndrome Uprising, With a Little Moxie, Green Tea Ginger, and Words Hurt or Heal. There are many more really great blogs and activists out there and you can find quite a few of them at the Down Syndrome Uprising Facebook page