xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: September 2013

Sunday, September 29, 2013

Why I Blog

Tonight was the series finale of Breaking Bad, a show I've been glued to for some time now. I won't give you any spoilers except to say that the writers did a perfect job of ending that show. I have gotten closure! And it reminded me how I felt when Lost ended, which was not even a tiny bit satisfied and FUCK I HATE THE WRITERS OF LOST SOOO MUCH. I had written a post about it, it was about 2 weeks after I had created this blog. If you go there you'll see I have 2 comments, and one of them is my husband.

I read through this post which I hadn't seen in over 3 years and I thought "this shit is FUNNY. I used to be so funny! What the hell happened??"

What the hell DID happen, because I certainly don't write posts like that anymore. That post is an example of the reason why I started this blog, so that I could go off on my random curse-filled rants about things that are only important to me. So that I could crack myself up because holy shit I'm clever! (Seriously, that dude's shirt IS FUCKING BLUE. Why does nobody care about that????) I have a child with autism, but it was never my intention to be An Autism Blogger. It was never my intention to be any kind of blogger, just somebody who pulled shit out of her head and wrote it down. I used to say that I'm not a writer, I'm a brain-bit spewer. I pull random crap from my brain and I write it down. That's all I ever wanted to do here.

But the years have gone by and now I'm just not what I wanted to be. For one thing I just can't write the way I used to. Somebody once told me I could write about an old shoe and make it funny (and did I prove THEM wrong!) and I actually believed them, but I can't do that anymore; it's not that I don't want to, it's like... I just can't. I no longer have it in me to pull that off. I don't know if it's because I can't write, or so much of the time I'm doing things that aren't really very storytelling worthy and they don't even amuse me enough to want to make them funny. I miss that, being able to write about pound cake and make people laugh. That, plus I don't think about this place as much as I used to. It used to be that everything I did was possibly something I could write about here, but now I write a one line Facebook update and I don't even consider writing a post about it. People suggest that I need to blog about my dead rat story, but I just can't make it happen. I'm still expected to be able to make dead rats funny and I don't think I can do it, so I don't try to.

Another thing, perhaps just as important as that last reason, is now I've got this audience. I have An Audience; a formal title. It's no longer my husband and my mom, it hasn't been that for a long time. I have a ton of people who read what I write, and even though 99.99% of you guys will tell me "fuck it all, write what you want" it's like I feel some kind of responsibility to do more than just rant about a TV show (at least here on the blog, Facebook is a whole nuther story). I'm supposed to say Important Things and talk about Important Issues and most things that actually go through my head are too trivial now for me to devote time to it on these pages. I'm apparently the head of some elitist autism blogger cult (at least that's what the rumor mill tells me) but I never even wanted to be an autism blogger, how can I be the leader of an autism blogger clique?? But if that's what I am, even though I never sought out that position, how am I supposed to also talk about dead rats? (Just in case you wanted to know, I found a dead rat in my bed after coming home from a vacation. It wasn't funny. AT ALL).

I'm considering turning off comments, partly because this is just so fucking Woe is Me but also because I know what you guys will say. I should do whatever I want, people will love me regardless, I should write from my heart, I shouldn't care about these things, I'm too hard on myself; and you're right. I agree with that. Those things you haven't even said. It's just that I don't think I can do that. I think things have changed too much, and even though I created this blog to rid myself of brain bits, and no other reason, I just don't think I'm capable of it anymore. I've been saying repeatedly that I want to start writing here again and then I keep starting and then stopping, but maybe I just can't do it. Even if I were still able to extract my brain bits and write them down, this place just isn't that dumping ground for me anymore.

I don't know what my point is. I'm certainly not planning on throwing in the towel. Or is it hanging up the towel? Towel metaphors confuse me. Whatever it is you do with a towel that means you're done with something. I'm not done here. I'm not going anywhere, this blog isn't going anywhere. I don't know what I'm saying. Just brain bits, I guess.

Saturday, September 28, 2013

Is the DSM5 being used to deny services?

It was always my biggest concern with the changes to the DSM, that the changing of the definition of autism to remove Asperger's disorder and PDD-NOS would be used to deny services to kids who need them. Apparently that has now started happening. Please see the link I have posted below. I'm not sure what, if anything, we can do about it now, though.

Autism Action Network

Monday, September 23, 2013

Helping Child 1 with his homework

Child 1 needed to make a primitive caveman-esque tool out of things we had at home.

So he and Hubs made this paintbrush out of bamboo and cat fur.

Sunday, September 22, 2013

For updates on Kelli and Issy

I case you guys were wondering what was happening, one of Kelli's close friends has taken over her blog at The Status Woe and you can check there for updates. She has also created a page for folks who want to help contribute to Kelli's legal fund.

For updates about Issy, please continue to check the Team Issy page on Facebook.

Thursday, September 19, 2013

Elevators are not toys!

Lately Child 1 and I have been spending a lot of time riding elevators after school. I think this is how he helps himself process a new school with new teachers and new people so I've been dragging my ass happily obliging by taking him to various places in the afternoons. Honestly, it's not my most favorite activity in the world, but it makes him so happy that I will endure it for him; hopefully not forever, just while he adjusts. His favorite spots (this week) are the elevators at the BART stations. (For those of you who don't know, BART is the subway system here in the SF Bay Area).

Yesterday I was standing outside the elevator at the El Cerrito Plaza station (he tells me where he wants me to stand, he doesn't want me inside with him). The doors had just closed, sending Child 1 up to the platform, when a woman came running over and said "you're not going up?"

"No," I replied. "I'm just standing here while my son rides." I was looking at my phone and not really paying attention.

"But I need to ride this elevator," she said, she seemed very annoyed, and she punched the button a number of times. This got my attention.

"Well. When the doors open next you can get on!" I said. Horray! Okay, that was rather sarcastic but I don't actually think she knew that.

"What do you mean your son is riding the elevators? Nobody just rides elevators." She said.

"My son does," I answered.

"Do you mean he's playing with them... like a toy??" She was horrified.

"Yes." I said.

"Elevators are not toys!!" She was really getting mad now.

"Well." I thought about how to phrase this. "They are to him."

"I can't believe you're letting your son play with elevators like a toy." She said. "That is just really bad parenting."

Now you've stepped in it, lady.

"Oh, and you would know?" I asked.

"Yes, I would know. My children are very well behaved and I would never allow this."

"Well, that's kind of sad." I said. "I feel sorry for your children."

She went on a bit more about how horrible it was, what I was doing, and she looked around as if she wanted to alert the authorities about this awful act of parenting she was witnessing. As she looked in the direction of the station agent I wanted to dare her to try and bust me (I didn't) because not 10 minutes earlier I had had a conversation with that station agent. I told him that my son was autistic and he loved riding elevators. I explained to him that even though Child 1 was taking the elevator up to the platform level, he wasn't going to ride the train, he just really liked the elevator. I also told him that I would be standing outside the doors the whole time, that we have safety rules and my son knows them very well. The station agent pleasantly agreed that riding elevators was a fun activity my son would be allowed to enjoy.

Finally the elevator doors opened and there stood Child 1 (one of our safety rules is that he must be standing there whenever the doors open). I called for him to come out, and naturally he asked me why, as he does about everything I tell him to do. As they passed each other I told him "because this lady here is very mean and I don't want you in an elevator with her." He was totally unfazed by the whole thing but no way in hell was I going to let her trap my kid in an elevator and lecture him on the ride up. He can wait for the next one.

I was talking to my mom about this later and she asked me what the big deal was; after all elevators are not, in fact, a toy. (She's right, of course, they are not). The big deal was this woman's attitude. She comes up on me with her lecture about what good parenting is and how I'm not doing it, not even stopping for a moment to consider an alternate viewpoint. Never mind that elevators are REALLY FUN for kids, it's all just "this is what I think and you disagree therefore you are wrong," and I am just so fucking sick of that. I'm so tired of other people's opinions, and other people's attitudes, and other people's words. There are so many incredibly selfish and unhappy people in the world, who only care about themselves and their own thoughts, both online and in the "real" world, and if I never had to encounter any of them ever again I would be really really happy.

I didn't mention autism, and I suppose I missed an opportunity to create a "teachable moment," but like I told my mom: It's none of that lady's fucking business. It's none of her business who my kid is or what motivates him to do what he does, it's not like he's bothering anybody. He's quietly riding the elevator AND being very polite to all the people he rides with. He steps out of the way for bikes, he presses the buttons for them, he holds the door open while they board. The only person who needed to know details about him was the station agent, who would have told us if what we were doing was inappropriate. I do not owe her an explanation about our activities, after all she engaged me. Now, if she wanted to be cool about it and ask questions, I would have been thrilled to have a conversation with her. We could have talked about how he loves the elevators and I don't really understand it, either, and yeah, maybe it's a little bit unusual to spend the afternoon playing with an elevator like a toy, but it just makes him so happy. I would have been glad to talk to her about our daily activities, all she had to do was just be a little bit cool, just seem a little bit interested, just not be a sanctimonious bitch.

But I had no interest in "teaching" at that moment, anyway, because it was so refreshing to have somebody actually confront me for once. So much of the time there is just silent judgment, or people whisper behind your back, or a blog post is written, and I so rarely get an opportunity to actually respond to something somebody says or thinks about me. To say "you don't know me, you don't know my kid, all you know is yourself and your own experience and I'm not interested in what you think so just keep it to yourself." To tell them to go fuck themselves and I don't give a shit what you think of my parenting. Well, I didn't get to say all of that, but still. It felt good.

I'm just pissed I didn't say that I bet all her kids are in therapy now; I hate it when you think of those great lines after it's too late. Well, we'll be back to that BART station probably next week, maybe she'll be back, too.... *fingers crossed*

Thursday, September 12, 2013

The Dive Bar Welcomes: Damaged Goods

I don't write Dive Bar posts, they are written by folks who need a safe place to speak their hearts and have no other outlet. For more information see the tab above. The author chose the name in the title. Let's give her lots of hugs today.

23 years ago this week you died. You had been hit by a car that was speeding as you walked across the street. You were 19 and I was 13. I should have been devastated and cried a lot. I couldn't. I wished you dead so many times. You tortured me and our sister daily for 10 years. You hid in my closet and jumped out during the night in vampire costumes starting when I was 4. You held our heads under water when no adults were looking til the point where we almost drowned, but didn't. When you got caught, you would laugh it off. You pushed our faces into the snow until they were frozen and I could scarcely breathe. I HATED you so much. I used to wish you would never come home. You stole my childhood from me. Our mom was working full time when I was 5 and I had to come home alone to a house with you. To a house where I never felt safe. I went anywhere, everywhere to avoid being home with you. You were so angry and mean and hated me and our sister so much. I babysat and was a mother's helper from age 8 on and had to give you all my money I earned. I would pay you not to beat me. Or give you $5 to go to 7/11 for candy and for 20 minutes while you rode your fucking bike to 7/11 and back, I was safe from harm. You made my life a living hell.

Then you died. We got the call your freshman year of college that you had been hit by a car and were in critical condition. Our mom dropped our sister and I off at friend's houses for a few days (like she always did because she had no time or interest in being a Mom) I remember that night my friends mom fussing over me, asking was I ok? I was numb. I felt evil and guilty because I was GLAD. You had beaten me up every day for 10 years and for 2 weeks you had been in college and for the first time in my life, I started to feel a little bit safe. I didn't feel like throwing up when I saw our house and knew you were in it. I knew you were 8 hours away at college. I didn't want you to ever come home.

I blamed myself. I thought I caused this by wishing it so many times. Later in life, my sister would tell me she wished for it all the time too. You were our torturer, our abuser and I wanted to be free from you. I spent 10 years terrified and the last 23 I have struggled with crippling anxiety and so many fears. We had no dad around. He had left to start a new family. Our mom was too busy socializing and blaming us for her not getting remarried, and blaming us for the divorce, and telling us "You ruined my life" and "Drop dead" on a daily basis.

I watched my mom languish in her bed for months after you died, handfuls of sleeping pills and narcotics friends had given her. She threatened to kill herself every day so our sister and I slept in shifts for MONTHS watching her so we wouldn't have to go live in foster care. What we had wasn't a family and it wasn't a life, but we had each other.

I see now how angry you were. Our dad left you when you were 12 and had never really been around before that. Our mom treated you like shit and blamed you for everything. You took your anger out on us and made our sister and my life a living hell. I see more clearly now that you were crying out for help and attention that you never got. You would do anything to make our Dad want you back, or want to be a part of your life.

It doesn't excuse any of it, but I see you differently now. I wonder what kind of a person you would be now at 42. A 42 year old man. Would you have changed and grown into a nicer person? Would you have been sorry and apologized for taking our safety and for all the years of abuse? I will never know. You have been dead several years longer than you were ever alive. I don't miss you at all. But each year at this time, I allow myself to wonder "what if?" What if you had survived? Would we have a relationship now? Would you be a good uncle to my children?

Every year September 12 is just another day for me. I can't cry for you. I have tried and nothing comes. With each year I understand a little more why you were so angry. I have a lot of resentment towards our parents too. You were a kid and maybe you were just a really, really angry one or maybe you were evil and would have become a criminal. We will never know. And for that reason, because all I ever knew of you was TORTURER, ABUSER, SADISTIC, CRUEL, I am not sorry you are gone.

Tuesday, September 10, 2013

Pain, anger, and remembering my purpose

Well, this last week has been a bitch, hasn't it? Myself, I've been feeling like I have a hole in my chest that will never heal. There is so, so much hurt out there as we all try to deal with what's happened. A friend asked the other day that they say it's too soon to talk about "why," but why is it too soon? Why can't we talk about it now, while it's fresh? I think the answer is that we're all in too much pain to be rational. It hurts too much, no matter who you are, and that kind of hurt makes it almost impossible for us to have a productive discussion about why. I know that I'm nowhere near rational at the moment. Somebody on Facebook yesterday accused me of "being defensive LOL," and yeah, I'm fucking defensive. I'm a raw bundle of pain right now, I can't have a reasonable discussion, I don't feel like I'll ever be able to. I can't imagine that I'll ever even want to.

See, the thing with me is that I'm fiercely loyal to my friends. If you are my friend I will put my body in front of yours to protect you from what's coming, and I don't even care that my issues aren't yours; you're my friend and I've got your back no matter what. And it's just so hard to remain loyal to a friend that has done a terrible thing. I don't know that I'll ever be able to come to terms with this.

I've tried to stay out of the "discussion," but of course I still hear about things. I've been raked over the coals for so many things that I never said; all these people are refuting an argument that I never made. There's no point in trying to defend yourself against words that aren't yours, so I keep clear of all of that; it just makes me angry and I have enough of my own anger at the moment, thank you very much. I'm happy to have a conversation about the things I've actually said, though, so if anybody would like to talk about MY words, I'm at jillsmo@gmail.com. I can't promise that I won't be really defensive, but I can certainly try. (Or I'll try to try. Bart Simpson reference? Nevermind.....) However, if you blog or post about me, I assure you that I will not see it.

But anyway, in times like this, when things get so ugly and out of control, I force myself to stop and remember what my purpose is. Despite previous attempts to the contrary, I am not here to try to influence public discourse. I've said this many times before, my purpose is not political: I'm here for support and advocacy. I was once in that scary place where my child was autistic and I had nobody to talk to and I want to help other parents find the help they need. I don't want to argue issues, despite the fact that I constantly get caught up in that (I'm trying not to, I really am!!! Okay, and failing miserably most of the time. Sorry.) I want to make friends and help them make connections. I want to help parents feel less alone.

So: remembering my purpose; remembering what's really important to me. I'd like to go there for a minute....

Right now I'm worrying about my friend Lizbeth's daughter, who is very sick with an acute mycoplasma pneumonia. I'm thinking about my friend Lexi, whose daughter Abby is likely about to get an autism diagnosis, and who has recently begun to "escape" from her house (and OH MY GOD is that child gorgeous.) I'm thinking about my friend Greg, who isn't expected to live past Christmas and who I will be seeing in person in a month, along with 15 other friends I've never met. I'm thinking about my friend Stuart, who created the most wonderful thing for autistic kids, and how I can help him turn the project into something sustainable and lasting. I'm thinking about my friend Bec, for no reason other than I just love her a whole bunch. I'm thinking about my friend Emily, who deleted her Facebook account a few months ago and who I just heard from again and she's okay!! YAY!!

And I'm thinking about my friend Kelli, who did a terrible thing to herself and to her daughter. And I'm wondering how in the world either of them will recover from it.

Saturday, September 7, 2013

Where were you?

If you have any connection to the autism world, by now you have heard about Kelli Stapleton. Last week my friend Kelli tried to kill herself and her daughter Issy. As I write this, Kelli is now in jail and Issy is still unconscious.

I'm not going to talk about how I feel about this because, honestly, I'm not handling it very well. I'm not going to try to explain or make excuses, because I just don't understand. I've been trying to stay away from Facebook where it's all anybody is talking about, but things still manage to make their way to me. I kind of feel like a powder keg ready to blow and even though I was trying to keep out of the "discourse," there are some things I just can't stay quiet about anymore.

These are the few things that have made their way to me: There's a change.org petition out there to have Kelli charged with a hate crime. And there's a hashtag on twitter called #JusticeForIssy. I don't actually know who is behind these things, because going and finding out would probably push me over the edge, although I could write a list of people I suspect are involved, and likely be right. I haven't read any blogs but I'm sure the usual "the mom is a monster" posts are out there, and, of course, all those fucking Facebook posts and comments....

This post is for those people: Those autistic self advocates who are currently running their public information campaign about Kelli and how much of a monster she is, because I have a question for you.

Where were you?

Where were you back in February when Kelli was desperately pleading for help because their funding had been cut off for Issy's residential treatment program? Where were you when the rest of us were writing posts and spreading the word to try to get Issy the help she needed? Did you contribute to the Team Issy fund? Did you lend your support to Kelli in any way? Did you even "like" the fucking Facebook page?

Well, I'll tell you where you were: you were sitting on your fucking high horse, pretending it wasn't happening, because a violent autistic child who regularly sends her mother to the Emergency Room just doesn't fit with your nicely crafted talking points. You were watching it unfold and you were doing nothing but criticize Kelli's parenting, as if you could do better. You were calling her an attention whore. You were making up reasons to make sure that this was all still Kelli's fault (Kelli was criticized for "posting videos of Issy in distress," even though she never did that). You were sitting there quietly, hoping it all just went away.

And now? You don't care about getting fucking "justice" for Issy, you care about yourself, and how much blog traffic you can generate by capitalizing on this tragedy and using it for your own personal, political interests. If you cared about Issy, you would have been there, with us, back in February, trying to get Kelli some help. If you cared about Issy, you would have done something back then. But you did nothing.

And what are you going to do for Issy now, other than trying to make sure her mother is incarcerated for as long as possible? Nothing. You will do nothing. She's just a public information campaign to you, you don't actually care about her well being. Issy is nothing more to you than a step ladder to stand on so you can talk about yourselves.

So, where were you? You were hiding. Now go back into your hole and stay there.

Sunday, September 1, 2013

Things I Find In My House #18

It's like somebody sat there, petting a cat, and thinking "I think Jill needs something to blog about. Hey it's a plate of discarded cheese slices! Let's make this happen for her!!" At least that's what I assume is the explanation for this plate I discovered in my TV room.....