Category Archives: Autism

Busy Girl

Today was IEP day for my youngest kidlet. It went well, as it usually does, but that doesn’t mean I’m not a twist of nerves and flooded with research in the days leading up to it. There’s a lot going on with him and, even though he is getting better at speaking neurotypical, he’s not there just yet. There are still things he needs a little bit of help with. I’m fortunate to be in a district willing to work with me, even when my ideas maybe aren’t the most orthodox ones. I know a lot of other parents have had problems working within the system, even specifically this system, and I am so grateful that I have had such a comparatively easy road for both kids.

I’ve also been helping my stepmom go through my dad’s things. Some things hit me harder than others. I was doing pretty well with the whole thing until I started looking through his slides. He was a phenomenal photographer who had such an amazing artistic eye for framing and focus. I may be looking into what it will take to do something interesting with some of those – maybe pairing his art with mine. I wish I’d seen some of these images before – I’d have suggested this project directly to him. But it’s a long way off and there’s a lot I’ve got to do before I can do a project like what I’m thinking about.

There’s one image in particular that I’m just struck by. We were in Spokane, WA then, I think I might be four in the picture. I’m wearing a bright red winter coat and it is the only real color in the image. I’m feeding the ducks and swans in Riverfront Park with the pavilion and the clocktower in the background. There is no one else in the picture. Not the old lady with the bag of breadcrumbs. Not a single soul on the grass on the other side of the river. No one on the bridge. I cannot remember a time when there weren’t people milling about everywhere there. It was always one of our favorite places to go on his weekends, puttering around with those birds. Oh, how I loved those swans. It’s a striking image and I really want to do something interesting with it. But I suppose I need to get a print first as it is only a slide.

I’m not getting a lot of usable writing done – it’s all a little too maudlin right now – so I’m doing more editing. I’m polishing up a few things to get ready to send out. I think being in this weird zone is actually making the editing easier because I’m not being drawn to five or six other projects I want to write also.

Dad’s Nikon is a lot different than my Pentax but I think I’m going to dust them off, load them up, and teach the kids how to take proper pictures this summer. If I knew how to do developing, I might just do the whole shebang but I’ll settle for lighting, color, and composition matched with shutter speed, exposure lengths, and that sort of thing. I think it’ll be a nice thing to be able to pass that along. Plus, we’ll maybe figure out if the cameras have any appreciable difference in quality.

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Filed under Autism, Books, kids, Life, Memories

Sometimes People Suck

I wish I had not gone on Facebook instead of adding a few more words to Crow Queen. I wish I hadn’t been struck by my own stupid curiosity to see what made one of the writers I admire and respect so totally pissed off. Alas, I did. Now I’m going to share my pissed off, Jim Hines‘s pissed off, and some outside observer’s absolute idiocy. Because this woman who wrote this thing has NO CLUE about what she writes.

Actually, Hines sums it up better than I can. Read his response to a terrible woman who has no clue here. (and this way, I don’t have to link to the actual article! Bonus for me!)

I just want to add that I have children, one of whom is officially autistic and currently struggling to define what that is for himself. He comes home from school and tells me that autism isn’t an illness which tells me that someone at school is telling him that it is. He is working on finding stims that don’t scare the new puppy or make other kids stare. He is learning to speak and act neurotypical because he wants to. I’m of two minds on that – on one hand, he is awesome but on the other, like speaking French in Paris, speaking NT certainly will help him in life.

My situation is not terrible, in fact, my life is pretty freaking awesome. My kids are a large part of why that is. We learn to work around things, find different ways to get to the same place, and help my son navigate a world with people like this horrible woman in it. Maybe sometimes we have to take the longer or rockier path but who doesn’t sometimes?

I have been told, more than once, that my kid isn’t autistic enough for me to understand what other people go through. They’re sort of right, I guess. His autism presents in a manner that I can understand and even translate. I know how lucky we are for that. I also know that Carly Fleischmann found her own way. Naoki Higashida found his own way. Others find their own ways of communicating all the time. Different is not less. I think some people need to fall down off their very high rocking horse (because it isn’t a real horse when you aren’t actually personally involved in the situation).

Now I’m going to get back to the words I need to write today.

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Filed under Autism, Life, Parenting

Lucky Girl

I am an incredibly lucky girl to have met and married a guy who gets me. He doesn’t always understand and sometimes he thinks I’m pretty silly but, where it matters most to me, he absolutely gets me. There are some people who I have never met but who have effected me in ways that probably sound pretty silly to people who aren’t dorks/geeks/nerds – whatever title they choose on any given day. For my birthday this year, I now own two of their autographs. One is pretty much the best present I’ve ever been given by anyone ever and totally made me cry. I’m fairly certain that there is no way that my husband can ever top this birthday.

As of today, I’ve met two of the three actors who ever actually scared me and both were so kind and sweet. I doubt very much that I’ll ever get to meet the third but two out of three is pretty damned awesome. Jump scare type things may startle me, but it takes a great deal to scare me and the first time I watched Candyman, I covered all the mirrors in my room for almost a month.

Tony Todd is really wonderful. Youngest son was waiting with me in the autograph line and pretty much on the edge of the convention being too much for him. He was stimming maybe the hardest I’ve seen him outside our house – but Mr. Todd took it all in stride, talked to him, and kidlet even handed him the squid he carries everywhere which sounds odd but is a great honor.

The Steel City Con is crowded (less today as it’s friday) and there are a ton of people and things to see. It could easily be overwhelming but the people there – the vendors, the artists, the stars – they’re all super kind and awesome and it makes going there fun (even if I always come home with too much stuff!).

 

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Filed under Anxiety, Autism, Comics, Convention, Geek

It’s That Time of Year Again

April is again upon us. I imagine most people come into April looking forward to Spring, flowers, and beautiful weather. I love April (my birthday arrives, Steel City Con runs their April show, it’s beautiful out but the kids are still in school so I can get work done). I am less fond of having to explain why I will never support Autism Speaks over and over again.

If you’re new to me, to this blog, you might not know that my younger son is autistic. It is my hot-button issue. I don’t talk religion or politics in polite company or online. I don’t touch on much of anything controversial on this blog because it isn’t worth the aggravation for me to do so. Autism is too important to me and my family so this one and all the things that go with it I talk about, rant about, and maybe get a little bit het up about.

My son has his difficulties and his stims and sometimes his constant recitations of current internet memes get to be a bit much for me but he is awesome. I wouldn’t change him for anything. He can tell me the best route to take to get almost anywhere. He can tell you where various routes begin, end, and intersect each other. He can answer nearly any question you might have about Saturday Night Live (did you know that Steve Martin was not actually a cast member?). What does it matter if he won’t eat bread or his hands wiggle or he rocks?

There are so many good autism groups out there that I do not understand how anyone can support an organization that is a thinly disguised hate group. They are the only foundation I know that discounts, ignores, and dehumanizes the disenfranchised people they say they were founded to serve. Autism Speaks raises money not to help autistic people but to fund their swanky offices and lobby politicians and make horrible “documentaries” where caregivers talk about the urge to harm these kids with the kids in the damn room. People are going to have thoughts and feelings but for the love of everything, keep it away from kids!

This month, if you want to donate money to any Autism group – look them up, find someone local, or really look at the options out there. Please don’t give blindly to just anyone.

I have a lot of words to say about autism and I’ll probably be doing it a lot over the course of April as this is the month when schools do their fancy presentations and every other store is shilling for Autism Speaks and irking me something fierce in doing so.

I am trying to be the best advocate I can be for my son until such time as he can advocate for himself. I am trying to protect him from the harmful rhetoric out there that is telling him that he is broken, damaged, and less than the rest. I need for him to know that all that is bullshit. He is awesome and he absolutely gets to ignore anyone who tries to tell him otherwise.

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IEP Season

Every year about this time, parents of special ed or gifted kids start re-reading old IEPs, Googling measurable goals, and making lists of questions for the annual meeting about the modifications to their child’s education plan. I’ve been doing this for a very long time but I always get nervous anyway. So far, knock on wood, I’ve been very lucky and only had one cantankerous meeting that, because I was prepared wasn’t actually an issue at all in the end.

I’m at the advantage because there aren’t many services my son needs – some flexibility in the classroom when he needs to stand up or wiggle a bit, a safe place to decompress if he is having a really bad day, and a teacher who isn’t a “quiet hands” sort of teacher who redirects an obnoxious stim rather than scolding him for it. A lot of families I know need a whole lot more than that and it’s a fight for them in ways I’ve never had to deal with.

I’ve been dealing with IEPs for a long time, I even did a weekend seminar/class to be better able to deal with them not just for my own kids but for the families I’ve come across with my support group. I think when you know what you’re dealing with – the language, the pretty standard format, and very few deviations from the standard protocol, you’re able to go into that meeting with confidence. During the Wrightslaw seminar (if they are in your area and you deal with IEPs or 504s it’s worth the time and money to go – you will never regret it) they talk a lot about separating your emotions to be a better advocate for your child and I’ve never gotten better advice. If you leave your emotions at the door, it’s a lot easier to work with the give and take there has to be in a situation like this.

For me, this year was a bit more fraught than usual as we’re transitioning toward middle school and that’s an enormous change. There are so many new things to worry about and so many changes and I’ve heard so many horror stories that all begin in middle school. Fortunately, I have a great team and very little was changed from last year so we’ll just have to see how it goes. The best part of an IEP is that we can always change it if we need to. If what we have put together doesn’t work in practice, we can reconvene and try again. Hopefully we won’t have to but it’s nice to know we can. Now I can get back to my normal work writing stories and such now. Relief is the word of the day.

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Filed under Autism, education, Parenting

All the Acronyms

My life is full of acronyms: ASD, IEP, IDEA, SPD, and they’re all quite useful, if you know how to work within the system. Unfortunately not everyone does and the system makes it as difficult as possible to get anything done. I am constantly surprised by how easy I’ve had it. I’ve never had a contentious IEP meeting. We’ve had some teachers who weren’t suited to dealing with my kids but honestly, super easy go of things and I am so very grateful for that.

But apparently my situation is more unusual than it should be. I’ve heard horror stories at my support groups (online and real life) about schools that refuse to do what they’re supposed to do. My kids have it easy because I know the vernacular, the law, and how to talk to people and because I don’t work a standard job, I have the availability to be at meetings, to pester with phone calls, and touch base with email. It makes me wonder how many kids slip through the cracks because their parents do have jobs and can’t be on top of the school all the time or fight tooth and nail to get the evaluations and services their kids need.

The system should not be so difficult to navigate and the plan should not be so difficult to enforce as it can be. Yes, budgets must be taken into account and parents need to be reasonable too but not at the cost of the child’s education. We are losing some bright minds along the way by treating them like problem children or behavior issues rather than people and that’s got to stop. I don’t have any answers or solutions but it all makes me so sad to see.

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Filed under Autism, kids, Life, Parenting

Some people are awful

I read a thing today I wish I hadn’t read. In San Francisco there is a lawsuit basically trying to get the courts to declare a 9 year old boy with autism as a public nuisance. He may be ten now, I can’t quite tell by the article. I’m about to rant about this article that you can read for yourself here: Autism Society San Francisco.

Things you should know – I have a 9 year old boy who is autistic. If it were my neighbors filing this awful lawsuit, I can only imagine how livid I would be. I know we only see one side of this lawsuit but it really reads like stuff that any little kid might do, not just a kid with autism.

I can only imagine what our neighbors think when we’re in full meltdown at our house. I want to find this family and hug them and comfort them and tell them that their kid isn’t the problem – awful people just can’t help being awful. Perhaps that will someday be known as a disability. We’ll send them to empathy therapy and manners classes instead of OT or PT.

 

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The sound of words

I have two wonderful children. I really do. Even when they go out of their way to irritate me. This week, it’s the words… We were talking about words – specifically the fact that my youngest likes to repeat specific words ostensibly because he likes the way they feel to say. Honestly, I imagine it’s a part of his autism that me and my older son also share. We discussed words we enjoy saying – we all agree on discombobulated. I love Irksome. Youngest loves words with more than five syllables. Oldest loves ten dollar words, regardless of their syllabic count (he’s old enough to enjoy showing off his vocabulary and young enough to still think it doesn’t make him look arrogant and obnoxious – I can’t say much, I was of that type myself once upon a time).

Of course, that conversation ends up on the other side, with all the words we don’t like to hear. I made the mistake of weighing in on this and now, my youngest child is singing the Bill Nye the Science Guy theme song saying my most squicky word where the word Bill should be. If I hear the word Moist one more time this summer, I might cry.

What are your favorite words to say and most squicky words to hear? For the record, I imagine squicky words to be the verbal equivalent to a nail on a chalkboard, shivers down the spine, hackles raised, and a slick heat in the brain that just says ewwww.

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Filed under Autism, Interesting, kids, Parenting, Weird

It’s the little things

Kids and Chewie at Steel City Con

Kids and Chewie at Steel City Con

Today, the whole family went to the Steel City Con. I haven’t been to many conventions. In fact, I’ve only been to this one and this is the third time. I like this convention. It’s big enough to draw some really cool guests and small enough to not be overwhelming. I did a real write up of the convention for The Geek Girl Project that you can read here: Steel City Con – April 2015. This post is about something else.

My youngest son has autism. His symptoms, characteristics, tics, and stims aren’t super detrimental and some people wouldn’t even notice. When we took our oldest child to this convention in December, we left the youngest with relatives. He was very unhappy with us for that. We promised we would take him and now we have.

We were concerned going in how he would react to being in a space with so many people all jammed together in some pretty small places. We explained going in what he should expect – that there were a lot of people, a lot of noise, and sometimes people would bump into him and some of those people would be in costumes. We explained about the lines and that he’d sometimes have to wait. Even though he doesn’t like waiting, he was excited enough about the whole shebang that he seemed willing to do it.

We got there a few minutes before the doors opened. By the time we reached the end of the line, it was already moving so we could not have timed it better. We might have been in line but it was a moving line so it didn’t feel to him like waiting. That first hour, I went off to talk to people and get some signatures and my husband took the kids through the vendor room where everyone found a toy they wanted. By the time I met up with them, they’d gone through about a quarter of the room. When we reached the half way point, it was starting to be a little much for him so we moved to the artist alley. Either the aisles are bigger in there or people move more quickly but it doesn’t feel so crowded. My son then went on to introduce his brother and himself to pretty much everyone he came into contact with. I’ve never seen him do that before and it was adorable and all the artists were very sweet.

As good as he was being, it was starting to wear on him a bit so we took a break. I’d packed a lunch as there isn’t a lot available at the convention center and nothing at all my youngest would eat. We went out to the truck, ate lunch, figured out the game plan for what we still wanted to do and made our way back in.

I left the husband to keep the kids so I could head for the photo opp for Elvira. She was one of the people I most wanted to meet. She was one of my idols a long time ago. I wanted to be either her or Morticia Addams when I grew up. I was very excited to meet her. Unfortunately, for whatever reason, she arrived at the convention later than scheduled and her photo opp was moved to later in the day. I knew I wasn’t going to get that much time out of my kid so I will just have to hope she comes back to Steel City Con another time so I can try again.

By 1pm, the kid was done. He seemed headed for a meltdown, getting upset if anyone so much as brushed past him, getting louder, and at one point, putting his hands over his ears and yelling because I wasn’t doing what he wanted me to. We headed out before he hit an actual meltdown but now we know we can take him to an event like this. After he settled down, I know he had fun. He even says he wants to do it again. That works for me because if he wants to go, that means I get to go too! That makes this geek mama quite happy.

 

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Filed under Autism, Convention, Geek, kids, Life

World Autism Awareness Day

Today is World Autism Awareness Day. I disagree at the most basic level with everything autism speaks stands for so the ‘light it up blue’ campaign doesn’t work for me but awareness is important. It matters. Not as much as acceptance maybe but it matters. When people are still saying stupid things like how my kid doesn’t “look autistic,” awareness and education are still very much necessary things.

My kid is awesome. He is who he is and I wouldn’t change him for anything. I’ve been told a time or two that I can’t understand what “real” autism is because my kid talks and his tics and stims are minimally observable. Because I can’t fall in line with the Autism Speaks way of thinking that he is a horrible burden on everything. My son has issues you can’t see and we’ve worked damned hard to be where we are. He has come so far and it flat out amazes me how awesome he is. No one gets to tell him that he’s a burden  or somehow less than anyone else. Certainly not some organization that spends more on their offices than services for people who need them.

Autism is everywhere. It knows no gender boundary or age limit. No one knows for certain where it comes from and I’m not getting into that debate here or anywhere else online. There was a time when being left-handed was considered a terrible thing to be. I’ve known some pretty awesome left-handed people who are about as far from terrible as you can get. I have never met someone who didn’t have something different about them. It makes for an interesting life. I think the world would be awfully boring if we all thought the same. Certainly, we wouldn’t have made some of the discoveries and advancements we have if everyone thought the same way.

I don’t wear blue today but I educate people on autism as often as I can in hopes that their awareness leads to acceptance.

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