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.]

On Being Human

Like many commuters, I listen to the radio a lot. Something hit me about the way they introduce new songs. The disc jockeys talk about the fact that a new song is coming up, and if we know the artist, they'll mention another song by this artist to jog our memories. If it's an artist they think we may never have heard of, they might say something by way of introduction, something to locate the new music somewhere in our minds, prepare us in a positive way.

Most of the songs on the radio are in heavy rotation, and they phase them in and out like this, with an occasional familiar oldie. These people know what they are doing. Why would they bother doing all this?

And I thought of this thing that happened right around the time in the middle of the eighties when I was getting myself kicked in and out of high school. It was an enormously big deal, and folks my age will remember, and I'll tell you what happened in case you are younger.

Coca-Cola tried to change its flavor to become "new and improved" and this was treated like a National Disaster. I am serious, people were really flipping out about this, and it was all over the news, for some time. It was a major topic of conversation. There was high emotion. Even Bill Cosby was somehow involved, but I don't remember his exact role, just that it was A Thing, because of his standing in the community.

At this time in my life, I believed I was not a human being, not the same thing as a person. But I was just now having this reverie about how everyone else reacts to change...

And here is another thing: people often see the sensory accommodations in my office and ask if I can help them brainstorm getting the whole workplace to be more like my office.  

People often read my writing on things like rushing and social and emotional confusion or distress and say they can really relate to it even though they are not autistic.

People often hear ideas of what can help kids like me handle executive functioning difficulties in the classroom, and declare, "I am going to try that for myself!"

Instead of not being human, what if I am very human, so outrageously human that it sometimes rises to the level of impairment? What if it is really that the things I cannot function without are things that would make everyone function better? My sine qua non might be every one else's sine qua shouldn't have to.

Love, 

Ib

Love, Not Fear

This is my entry for the Love Not Fear Flashblog. In case you are clicking from TGN directly, here is a link to the flashblog site itself, where you can read lots of others, and get yourself very happy: HERE IS THAT LINK. What I love about this is that it's organized by a loving group of people, some of whose kids are Autistic; and some of the people are Autistic themselves, and some are not, and some of them have no kids. Just a bunch of love bringing us together.

[Image: Flashblog logo of a pink and white heart made out of lacy smaller hearts with #PosAutive in it. It says, Flashblog: Love Not Fear, presented by Boycott Autism Speaks, and cites a deadline, for which I am late, of course.]

Lately I have been having a lot of trouble writing, so I will tell a story of Love winning out over Fear, in pictures.

One day a bit ago, we were having an action where we were supposed to take a picture of ourselves with a sign saying something like "I am not afraid to say I am Autistic." This was because something was making the fearmongers smear our name again, as usual, nothing really different. And I support these actions, but I have this thing of being rather precise. So, I couldn't lie. I do say it freely: I am Autistic; however, I don't say it without trepidation, especially when one of these media scarymovie frenzies is going on. This is the picture I made:

[Here is a webcam picture of me sitting on the bed, holding a hand-lettered sign. The sign says: I AM AUTISTIC AND TIRED OF FEAR.]

The boys were napping and Layenie came in and sat next to me on the bed, having finished what she had been doing really quick. She saw this thing I made and gave me a big, much-needed hug. Then she looked at her Facebook and saw a call for participation in another action that our people who love us were taking in support, having to do with This Is Autism. Layenie immediately made this:

 

[Layenie's pic here is of me with the twin boys, age about one, in the transition from baby to toddler. She has inscribed the picture with these words: "This is Ibby. Ibby is a professor, a mother extraordinaire, and a wonderful spouse. She is light, laughter, and love. She is books, trains, twirly things, and cracking up about the word underwear. This is autism, and oh boy, am I glad."]

This made my eyes leak. It also made my eyes leak to look at it again just now, and remember, and do the image description.

In a cage match between love and fear, love wins.

Love wins.

Fear can come back as much as it wants. For me, in my experience of my self, I know it will.

But I also know love wins.

[This is a meme that says "Caring and respect are better than pity and fear. People are better than Autism Speaks."]

Love is better than anything.

Love,
Ib

On What A Bad Idea Rushing Is...

I am still working on the stuff about ABA, which takes forever, and it is taking even longer than I meant for it to take, because I am trying to rush myself.

Which reminded me, I forgot to link to this article I wrote for We Are Like Your Child, about what a bad idea rushing is.

Here's the link: Please Don't Rush Me, on We Are Like Your Child.

Thanks for hanging in there with me, and much love to you all. Nobody other than my own self is trying to rush me in this instance: You all win! xx

Love,
Ib

True Answers About ABA (Part 1)

Hi Ibby! 

I am a Parent to a 3 year old Autistic girl. She is receiving OT, Speech, Music therapy and ABA. I have felt it was the ABA where the progress we've seen has been made. However, as someone who is a staunch advocate for my daughter and her Autistic peers, I want to always be doing what is best and least stressful for her.

I have seen quite a bit of controversy in the Autism community by receivers of ABA, that express having PTSD from the experience and are now staunch opponents of ABA. But what they describe going through and what many of our kids do, seem vastly different. Is there any way to clarify this issue, about just what ABA is and isn't and how, in layman's terms a Parent can avoid and identify it?

This is a topic that causes a great deal of angst, distrust and Parents feeling they are being labeled as abusers if they are using ABA...which I guess, may really not be? Any help at resolving this would be great!
Thank you!

Sandy


Dear Sandy,

Thank you so much for asking.

This question is so very important, and as you say, the things people say and do about it can be very confusing, and from where I stand, I have been able to collect more than the usual amount of information about why they have to do and say the confusing things that conflict with each other, and was wondering if I would be able to help.

I hope I can help.

I will try to keep this a little bit shorter than a big giant book by linking to other related things I wrote before, and breaking it down into parts so you can look at the pieces of the question you are interested in at any given time.

Here are the topics I will touch on:

Why are so many Autistic people who have been through ABA against it, and/or experiencing PTSD?

In that case, why would anyone defend it? What is going on there?

What do you mean by the notion that a type of treatment can be morally wrong?

But I have seen it work well, and you just gave what looked to me a whole lot like an example. Can you explain what is going on here, when it works well?

Why would that still be called ABA then? Why don’t they call it something totally else?

Can you see a solution to this thorny issue? What would it be like?

Meanwhile, before that solution happens, what are practical actions I, as a parent, can take in real life? I want to do what is right for my kids, and I also want to be a good person in the world.

I’m writing back now because I have had your letter for a longish time, I think, and I wanted you to know this is what I’m working on, and I think it’s really important, and I want to get it right. Please write back if my outline above doesn’t hit on all cylinders, but so far I have answers in my head for all the things above that I just need to translate into readable words, so that’s what I’m going for.

Love,
Ib