You Are Not Alone

Dear Readers,

This summer I will be able to get back to regularly scheduled blogging.

Meanwhile, I have been able only to answer emergency private messages. 

Something struck me about a majority of my answers in these things, and I wanted to say something about it here, because I can write it quickly and give it to the world, even if I am having various difficulties at the moment.  It is this: one of the most important things I can ever say to anyone is that you are not alone, and finding community changed my life.

I want to give you these resources for parents, and also disabled people (largely Autistic, in the case of these resources, because of the audience for this blog) because in them you can find a wealth of like-minded parents and also other Autistic and other disabled adults who are the kind of people who want to reach out to parents in fellowship and share experience, strength and hope.

First, PACLA, which stands for Parenting Autistic Children with Love and Acceptance. This is a Facebook Community group in which you can put up a question and specify if you want it to be answered by only Autistic people for an insider experiential view, or the community at large for the kind of interactional experience or systems understanding or group support that knowing people who have the same things in their lives can bring. From what I see of the people who write to me, most people would love this group and I always send people there privately.

Here, to see what PACLA stands for, is a link to the inaugural magazine they put out: PACLA Magazine, First Issue. I love this magazine. The editors are parents of Autistic kids and Autistic themselves! It is an honor to be part of it. The word 'magazine' doesn't even come anywhere near doing justice to the awesome, and these two claim it is their first time. The only reason I believe them is because I believe them, not because of the evidence. :)

Like what you see? Here is a link to the Facebook Group for PACLA RIGHT HERE. One of the people who started it, Alyssa Hillary, is a fabulous young Autistic activist scholar, a good friend of mine in person. Many parents and autistics are involved, too, in addition to the ones who started it, and the movement is growing.

Next, look at the archives of this blogging collective in which I sometimes participate, and so do many others. It is called We Are Like Your Child and can be found online HERE.. The point of this blog is that we talk about difficult issues within, and how we create workarounds for these things, to make things doable notwithstanding. The disabled people who write here are all people who, like me, care about Autistic and other disabled children and their whole families. All of us are reaching out for a better world. This is another place to find people who will make you notice you are never really alone. They are part of my personal lifeline. May they (we) be the same for you and yours.

Thanks so much for your patience and I will see you in June!

Love,
Ib

Today Is World Autism Awareness Day

Today is World Autism Awareness Day.

A couple of days before this day, I was at University of Michigan, giving a talk called Autistic Activism in an Age of the Blues.

If you click on the name of the talk, above, you can see my description of it that the Department of English Language and Literature put forth for people to use in order to decide if they wanted to come.  The basic idea was to explain the background, or rhetorical genealogy, of lighting it up blue, starting with the onset of puzzle piece as a shorthand way to represent our people.

None of it has much to do with our actual people, or anything real about us. 

The turnout was first of all so many people I was surprised! And second of all--this part is not so surprising because I am getting used to paying more attention to real life than to media representation--full of lovely people. To hear the ad campaigns and the news and the researchers that get funded by the right kind of corporations tell it, everyone thinks I'm a tragic burden from fearsville, pityland.

In real life, I go around in the world keeping meeting a diffuse divergent kaleidoscopic spectrum of the wide world of wonderful.

Rock on, real life.  Especially Michiganders.

One of the many Rockin' People is the emerging technologies librarian Patricia F. Anderson of University of Michigan, and I'm mentioning her in particular (hi there :) ) because she made this wonderful thing, a Storify, where you can read the things I was saying at the talk that she and others picked up and Live Tweeted by writing them quickly on Twitter right when I said them. Multi-tasking Heroics! AND THEN! She put links to the real things we were talking about, like Tone It Down Taupe, so you can easily look it up.

Also when you are on there on her Storify page you can see other talks she went to and did this. It is fun.

Here's that link now, in case you want to see more details about what we talked about: The Awesome Storify Narration of the Michigan Talk.

So the lovely people and I talked about all sorts of things, like neuroqueering, and being a mother, and our own families, and school, and subversive ways Autistics deal with stigma, and how all the ways of being neurodivergent are not that different from one another...and so much more.

Take that, Stigma Awareness. I'll be aware of Acceptance, Appreciation and Awesomeness instead.

Love,
Ib

Candlelight Vigil Tonight

Today is a day of remembrance, a Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering. If you click on the link, you can join us in the virtual vigil group on Facebook. Please do.

We come together today to mourn those who are gone from us. They cannot be brought back, but they will never be forgotten.

While the issue is complex, I know it is something many more fear, whose loved ones are not gone, but might become gone; and if this is you, or someone else you know, I invite you to consider reading a post I wrote on the topic last June. It may have no application, or it might.

My heart goes out to the families and friends of those we have lost.

[Pic of a candle in cupped hands, in the dark. Words: Loss leaves a heartache no one can heal; love leaves a memory no one can steal.]

Love,
Ib

What is Autism?

What is Autism?

Click here for a short, reliable, definitive description.

Nick Walker wrote that, and I'll be glad forever.

Thanks, Nick Walker!

And thanks to all of you who click on it!

Love,
Ib

Stop Combating Me

Congress is getting ready to reauthorize the Combating Autism Act, and I hope they don't. I'd rather have them write a real thing that does what people meant for this one to do when they accidentally voted it in, back in 2005.

I'm tired of politicians and fake charities tricking everyone.

This act says it helps us and our families.

But if you ask my mother, she will not say preventing me from being born would have helped her. My father is glad I was born, too. I think my brother and sister are also pretty happy about this thing of me existing instead of being never-born. Don't get my wife started on this topic, unless you want to find out what an irate Scot looks like.

However, the vast majority of research money for "Combating Autism" under this act is ear-marked for prevention of us. Preventing families doesn't really help families, when you think about it.

If I had not been born, my children would not have been born.

Autistic Self Advocacy Network reports:

Of the $217 million NIH spends on autism research, only 1.5% goes towards the needs of adults and 2.4% towards improving services. We can do better. Will you help by signing our petition telling Congress to reform CAA and to stop combating people on the autism spectrum and families? You can find it HERE. (Please click and sign!)

Some people think "Combating Autism" is the wrong name for this act, because they say it is helping us instead of fighting us. But I think it is being pretty honest about what it is.

It is fighting against us instead of trying to help us.  I can respect the honesty. But I would prefer respect and real help for real people. I prefer being treated as a real person.

Please, readers, will you sign the petition and ask them to stop combating me and people like me?

Love,
Ib

I Am A Mother (Part 2)

Checking in... the ABA project was a giant undertaking for someone who has such a hard time writing! Thank you so much for your patience!!

Here is a thought that came to me today, this morning, as I stepped on a Cheerio, and laughed.

[Image: Cheerios strewn over a hardwood floor. Not unlike what you might find in our kitchen on any given morning! Oh who am I kidding. I don't know what time of day it is, and neither do the ever-present Cheerios.]

I laughed. And then I thought: whoa. This is me laughing about Food Being Where It Does Not Go.

Before the boys were born, I "knew for a fact" this was not going to be able to happen.

Cheerios and crumbs underfoot, under my feet, going crunch, ack? It means I have a house full of cutefellas. I shrug and laugh. This is something I could never have dreamed possible.

Also it's something I think a lot of people will understand.

I am a mother.

Love,
Ib

Accidental Bully: I don't want to be that person

There is a person out there whose experience was me bullying him, but it seems like he more feels like my non-autistic friends should have been stopping me and has never come to me about it. I wish he would, because I want to tell him I am sorry for hurting him.

Let me tell you, at the time I felt like I was passionately defending my friend. I felt like this guy was being mean to her. I felt right about my self. But read further for what I have learned about this.

And here's another thing. I am not trying to tone police other people. This is all kinds of wrong.

But right now I am talking about my own self.

Intention is not magic. It does not matter if I think I was right in my opinions. What matters to me is that I hurt somebody. I got so passionate that I forgot to be COMpassionate.

Some people might know this guy I'm talking about, but not know that the bully he talks about is Autistic. It is. It's me. Please show him this, show him I'm sorry I hurt him, and the reason I haven't told him myself is because I don't know how to contact aliases. I'm not very computer savvy.

But I totally get it now that me feeling right about what I am saying does NOT give me the right to go around hurting other people. It does not.

So some moms asked me to join this flash blog against cyber bullying. And it broke my heart, because really? People's moms cyber bullying each other? What is this world coming to?

And then I remembered I accidentally bullied someone once.

Aspie Kid, I'm sorry I hurt you. I one hundred percent did not mean to, but I get that what I meant is not the same thing as what actually happened to you. This is important.

Everyone else in the world, please join me in deciding once and for all not to be that person.

 [Image description: Logo for FlashBlog, which says Don't Ignore Cyber Bullying, Mon. March 3rd 2014. It's a claymation looking guy trying to step through one of those red negation signs as in No Smoking or so forth, and he might succeed, as the slash on it is covering his chest like a sash, and he has momentum, and one of his feet is through the red circle already along with both his hands and the top of his head.]