Yesterday was an interesting day. I woke up. Early. 5:30 or so, and yes, on a Saturday when NO ONE had to be ANY PLACE. But such is life with kids sometimes. So as usual, I got my coffee, prepared Kevin’s morning Greek yogurt with his Depakote and sat down to both the computer and the TV. And, I saw/read several stories about this “Night to Remember” event. And, as a blogger who has a platform for brain dumps, I sat down and blogged about it. I didn’t think too much about it at the time–it truly was a couple of eye rolls followed by a brain dump. Saturdays are typically slow for blog traffic and it felt good to get that stuff out of my head, so….on with my day.
I took my 6-year-old to 2nd and Charles to trade in a few games and it was then that my phone started blowing up with notifications. Lordy, lordy, did I ruffle some feathers with that post. And, at first it was civil. I responded to each comment. I felt that since they took the time to let me know how they felt, I should respond. But, my feelings and words were misread, I was either voice texting on my phone or typing too quickly…and before you know it, I was receiving comments that were extremely derogatory to me, my (apparent) parenting skills, and then…I was called a bitch.
So that ended that. You are entitled to your freedom of speech. However, I do not have to provide the platform and the bandwidth for your freedom of speech…so I deleted and closed the comments. I certainly wouldn’t come into your living room and call you names, so I appreciate the same.
But, it didn’t stop there. That was when the emails and private messages on Facebook started.
What is interesting to me though…is the extreme divide in the comments/reactions to the post.
From my completely unscientific poll….
- Most of the parents who have adult children with disabilities felt I was wrong, misguided and/or naive.
- Most of the parents who have younger children (not adults) agreed with me.
First, let me concede. I think that the events that transpired that evening (at most venues) was not AT ALL what the media described, nor even that similar to what is described on the website. So, for that I apologize–I am the first to bash the media for incorrect or inaccurate coverage, and this is no different. Yes, I should have investigated what was the real story before posting. However, my overall sentiments remain the same–that I disagree over the term “special needs prom” and it’s use (and thanks to all of you who sent me definitions!) as well as fawning over a celebrity who “pities” us. Even if you did not feel pity that evening, to me, that is what is implied in many of these news stories. But, I don’t want to necessarily rehash yesterday’s thoughts and post. I agree I was incorrect in some ways, but still hold on to my main idea.
That being said…all the email and messages I received was disheartening. Beeeeleeeeeve me, I am not naive. I have been in enough IEP meetings, JPO hearings and who knows what else….I know what our kids get. Also, I’ve written a zillion times about how 40 years of IDEA and 25 years of ADA have done NOTHING to change outcomes. Then, I look at my son. I am well aware of what my future holds, even if I have not experienced it yet. If not having experienced it yet makes me naivé by your standards, I’m ok with that, really. Labels don’t mean much to me unless they are needed to get services.
But in my mind, the naivé argument can get thrown out the window. One of my special needs mom friends said this to me, privately: I think the comments show how incredibly far away we are from any semblance of inclusion, especially for teens and adults. So sad.
There you go. There you have it. We know that inclusion, for the most part, does not exist. When it exists and is a true model of inclusion, it makes news. And then, by the fact of it making news, means that it’s not inclusion…if that makes sense.
But this it the tone I did not like. Even if we are not “at inclusion” I was told repeatedly that what I had posted was basically a “pipe dream” because “we all know that inclusion doesn’t exist.” So, you’re not mad about what I posted, but overall think it’s unnecessary because, since inclusion doesn’t exist, why bother, save your breath. It was a “Hey, don’t rain on our parade because this is the only parade we get.”
Well, that’s where I disagree. I want to go to the normal parade, I don’t always want a separate parade. Mind you, at times, the separate parade is a nice reprieve…but I will never stop fighting for our kids. Even if my family attends the segregated parade and has a good time, I will still fight for inclusion in the regular parade.
At least that’s the plan.
So while I will apologize if I offended anyone (though it was not intentional), I will not apologize for wanting more and better for my kids. Not now, not ever. I will not apologize for wanting my child to be included, to be accepted. For all of our kids to be accepted and included, rather than a community service project. If that bothers you, then this isn’t the blog for you.
I’ve done other posts that I will care about this until my last breath.
I only hope, as I have commiserated with other friends…..I hope that I am never so jaded that I don’t want to fight for my child. That I’m so disappointed in people that I give up. Ever. Because even though I didn’t hear from them yesterday, I do have many special needs mom friends who are doing great things–running for or holding political offices, running non-profits, fighting for inclusion. Those are the women who I will continue to model and look up to. Not the ones who write to me with a message of “we tried, it didn’t work, leave us in peace, please. Oh, and by the way you are a miserable bitch for bringing this up. Why can’t you just appreciate what some people are doing for us?”
Nope. And it’s sad to me that some of you have stopped expecting inclusion. The path from naiveté to being jaded exists…we all know that. For now, I am planning to take a different path. I love reading old blog posts and seeing how far we’ve come. I cannot wait for 10, 20 years to come back and read this one. Or not. Time will tell. We can only go with what you know. And this is what I know, here, today. When I look at my kids’ faces, I cannot imagine giving up.
So, that’s all I have. That’s my brain dump for this morning. Please enjoy your Valentine’s Day and celebrate love and friendship. That’s my plan.