Thursday, November 02, 2006

Do I Recognise Everyone?

This blog is supposed to be open for comments. If somehow its not set up so you can comment, and you want to, Email me or something so I can change it.

Thats right. Im assuming that someone might want to comment on what I write. Thats new for me. You see Im shy. No really. I mean Im REALLY shy.... O.K. Ed, "How shy are you?" Im so shy....Im so shy, Im not ready to tell you about how shy I am. Thats how shy I am. But I will eventually because I think its important.

Im learning at a rate that I have never experianced. If you are a parent of a kid with autism and you want to know what treatment or therepy is effecting me so positively, you may be at the wrong site. However, you are more than welcome to stay.

Im over my head but it sure feels....It feels.... It feels like over my head. Im MARRIED! Yeh, I know. Everyone I know is trying to figure that one out. No one but me knows how far out that really is . My wife is really pretty and really smart. Im not either. I know its all realitive to different cultures and different one who knows this situation can figure it out. God probably finds it humorus, but everyone else is totally confused. ME MOST OF ALL!

Then there is this computor thing. How did it get here? How does it work? There are people in Ireland, Canada, England, and Finland talking to me about autism. Wow! I mean, is that cool or what?

Do I recognise everyone? Are you kidding? At this point I dont recognise me! But Im working on it. If you told me 10 years ago that Id be married someday, I probably would have shyly giggled. If you told me that in 2006, Id be doing this stuff on the computor.... talking to people all over the world about autism and how to celebrate the things about me and others that were just different.... I would have thought that you had been watching too many Star Trek episodes or something....

I recognise some people on the internet. Some of them recognise me. For the first time in my life I recognise the support I need and Im not planning to be shy about asking for it. Its not just that I cant afford to (although thats a big part of it). Im actually recognising that I have something to offer others.I cant be quiet. I dont think I should.

Me, pass for "normal"? I guess there have been times when Ive come close. However, Ive decied this is not even close to being the time to work on that goal. Im actually becoming quite comfortable with the idea that its no longer even an important goal at all. Ive got better things to do.

Here it is. My wife recognised something in me that I hadnt. She believes in me more than I believed in myself. I want to honor that. I want to work. I want to contribute all that I can to this marraige. Is that so hard to understand?

As Im learning from people on the internet, its starting to make sense to me. The supports that I need have been clearly identified as me as a person with autism who needs those supports. So, why should that be difficult? Ive always challenged the system. Not just because Im different, but because Im different and I refuse to shut up and go away.

Ive now got more people than ever in the system who are rocking, and spinning, and pacing, and squirming in their seats....trying to figure out what to do with me.... Let em. Thats right. I said, "Let um!"

Now, they know that Im autistic and my mother, my wife, and I have worked very hard to make sure they understand what that means and what supports I need. They dont want to give me that because they would have to change what they think (or rather what its conveinient for them to think).

Well.... Its like this. They think this way, "He doesnt want a cure for autism and we cant identify any behaviors in him to change ....Besides hes not asking for that.... We cant ignore that the guys married.... He talks about wanting to get educated and have a vocation. Technically hes in like the 7th grade.... at AGE 43!!!! but, sometimes he talks really smart.... or writes like he is....but the test show that hes not at all smart.... He really cant even read! Well he can.... but hes got some confounded method that he devised that he cant really explain how he does it ....and we cant figure out how he does it.... The thing is we cant deny that he does indeed READ.... somehow....even if we dont know how."

What can they do? Well, I know one thing. We are going to find out.

Its about time they recognised some people like me and some things about some people like me. Ive squirmed plenty. Let them squirm. Im going to work hard and Im going achieve what Ive been trying to for a long time....and its going to benifit um squirm.

....and neurodiversity and all that.


At 2:07 PM , Blogger Anne said...

Hi, Ed, it's true. Nobody knew what the future would bring, and we still don't, but ... we're going to find out! Keep us posted.

and neurodiversity and all that :-)

At 6:12 AM , Blogger abfh said...

Hi Ed. Comments are working fine. After a new blog gets started, it takes some time for people to discover it and to start commenting regularly. But when you have good, thoughtful content (as you do), people will find their way here.

... "if you build it, they will come."

At 4:54 PM , Anonymous Ruth said...

Hi Ed
I saw you coment on The Voyage and cam over here. Keep posting cos you give me so much hope. I have 6 out of 7 autistic children. I love reading about adults how have got a life.

At 6:23 PM , Anonymous Mum Is Thinking said...

Hi Ed, I like the new theme for your blog, the colours on this one are restful on the eye, I think :)

Good post! And I like your poetry...I'm curious about your method of reading, I tend to scan first then reread more thoroughly afterwards. Is that similar?

At 7:30 PM , Blogger Ed said...

Thanks Anne,
If youve got a blog let me know. I cant find it.
ABFH, I called my wife on her cell phone at work to tell her that you commented on my blog. "if you build it they come.".... words cant describe....thanks
6 out of 7 autistic kids? If you are trying to blow my mind its working! 6 out of 7? If youre attitude is anything like Sharon over at Voyage, its you whos giving me hope. How parents of autistic kids see autism is really important to my future. Thats one of the many things that Im learning lately.6 out of 7? WOW! This is almost too much for one day....
Thanks Mum is Thinking,
I dont know about the reading thing. Im not really sure that I ever really read much of anything sequentially. Whatever I do read I cant really tell which part is scanned and when, if ever, I read one word at a time. For instance if I read out loud I really couldnt get past a full sentance. I have alot of trouble with focusing on one word at a time.I wear Irlen glasses, they really help with some things but not others. I just started typing with two fingers a few monthes ago but its still very slow.The key board is really too much for me to look at all at once but Im getting better. Unfortunately, (I know I keep saying this but I think its important) my scanning method or whatever its called often leaves me missing the point. That can get frustrating when
commenting.Anyway, Im finding some better ways to do things and I appreciate youre letting me clairify if I think I did miss something like the other day.: )

At 7:36 PM , Blogger Ed said...

Ruth, I couldnt figure out how to find your blog either.Pease let me know how. Id like to read it.

At 8:15 AM , Blogger Mum is Thinking said...

I didn't think you misunderstood what I wrote so much as I left out crucial bits of information that would have clarified. That happens alot, I'm not the best writer in the world :)

Maybe our reading styles are a bit different, but I've always read more by scanning than word by word. I usually have to go over things twice (or more) to get the full meaning.

Well, what the heck, we seem to be having a good conversation even if you think you don't read well and I think I don't write well. I reckon in the end it's all ok anyway :D

At 9:59 AM , Blogger Ed said...

Mum is Thinking,
Thanks for continuing to converse with me. It really helps me alot.
If you are still reading this, if youre ever up to responding, youre more than welcome to do so.
Did I understand how maybe you thought it might be better how your son saw me and himself as just different rather than someone like a parent that had a different veiw of autism? I was hoping to show respect for what I thought your veiw was and how it ultimately benefited alot of people? That was mt intent.
I addressed somethings more in this next post.Id really like to know what you think.
I agree that everyone should speak up but Im more concerned that the minoity acceptence veiw be amplified because it IS in the minoritity and because the cure veiw of autism creates what I see as alot of barriors and even dangers for everyone.
Let me try the reading explaination again. My mother is a teacher. She taught me to read. She partially deaf. I think that influenced how I learned. Also because of lots of reasons, I have no formal education to speak of. The ways Ive adapted my reading methods over the years and educated myself are now being challanged for the first time. How could I ever know wheather what I read was accurate if I never told people what I read and had them tell me how well I well I understood it? Thats happening for the first time now! Youre helping. Thanks.
Im sure youve done alot of adapting yourself. Youre ability to write inspires me to keep trying. I think you write well.
Heck, getting married was really like learning to talk for me. Its sooo different. Im loving the challenge but its real different to most people. Anyway, seeing how you and others have adapted and are adapting to challenges is very motivating to me.Like I said please continue to talk about your story. I think its great!

At 11:05 AM , Blogger Ed said...

Also, when I said I had wrote about some ideas in my next post, I forgot there was one in between.
I was refering to the one I wrote today, Sunday.Its called, "How is That Democracy."

At 12:19 PM , Blogger Ed said...

Mum is Thinking,
One more thing. I didnt know where to make this comment because Im a little confused as to where your blog is.When I go on that autism hub site(you know the pink page) that I really just found out about maybe a month or so ago, I find one blog. When I click on your name here I find another one.
Now that Ive seen both I understand you alot better.
I really do think we have more in common than we have differences. I had actually been reading some of what you wrote some time back but didnt get that this was you....or that was you....or that they both were you.
Im guessing our reading styles are quite similar.Its hard to imagine that there might be somebody else who reads as differently as I do but Im sure theres alot of things like that that I will be learning. Im moving ahead so quickly these days and Im so far out of my comfort zone that as long my saying so doesnt offend anyone else, I just have to laugh at some of the mistakes I make.
There is this one person who calls herself Mom26kids or Mom26children.
I kept thinking how does a mom with 26 kids have time to write anything?Not that having 6 kids is any small task but it took my wife to explain to me that it meant mom TO 6 kids. I think that was pretty funny.Anway Im learning. :)

At 8:40 PM , Blogger Anne said...

Hi, Ed, I don't have a blog. I am a mom to a 20 year old autistic spectrum guy, I'm a lawyer, and I've been a neurodiversity wacko for quite a while. Some of the autism hub bloggers know me from the Autistic Advocacy Group.


At 3:19 AM , Anonymous Mum Is Thinking said...

Answering the comment from 9:59 first...yes, I think you got it well.

About our having a minority view. I suspect that perhaps we are much less of a minority that we might think. I suspect there are many who want to speak out about these issues but are too stressed or worried or even afraid. Finding others who have similar ideas and experiences can give us the strength we need to speak out. Funny that people who generally hate crowds can find strength in numbers this way. We're lucky to have the internet to help with that.

I understand you learned from a different environment (sounds a bit like you homeschooled?) That's not necessarily a bad thing. There's a good chance that how you learned at home was the best way for you to learn. I learned very little in the mainstream classes I attended, most of my learning happened on my own time. I didn't learn to read until the summer between 2nd and 3rd grade, and I guess you could say I did it on my own DESPITE mainstream education, which honestly did more harm than good in a lot of ways. If I'd skipped 1st and 2nd grade I would have learned to read sooner, how funny is that? When I got into higher primary grades I learned to read ahead on my own time because I couldn't follow what the teacher was saying. Now THAT was useful LOL! For that I can honestly say "Thank you, Public School System, for teaching me to teach myself!" So perhaps your learning experience was less different that it seems at first glance?

I had a blog on Blogspot, but I recently switched to Autiblogs. My current blog address is the one that comes up at the Autism Hub. I must have forgotten to post with my new information when I commented here before, I'll fix that this time :)

That's funny, I thought the same thing about Mom26Kids(children?) when I first saw that too. I thought...what the...?!? LOL! So it was a relief to realise she was only dealing with 6; why it sounded quite a small family by comparison :)

I've been reading the post titled "Disconnected". I enjoy that, have read it several times. It's very good. I'm feeling weary and disconnected myself at the moment, so hard to say where it led me, just that I am enjoying the journey.

At 5:32 AM , Blogger Ed said...

Mum is Thinking,
As always, continued thanks.
It sounds like our reading is similar.While its comforting to hear about our similarities thats a new kind of comfort for me.However, I do appreciate it. I am trying to make friends. I think of you as my friend. :)
Sounds like you taught yourself alot like I did. Keep telling me about your experiance on here or your blog post. Where ever....I think its productive. Im learning from it.
Im going to write a blog post (the regular kind) about my education.I just need to do that.
I wasnt home schooled.The methods I learned on my own (which was everything besides reading and writing)arent working very well in trying to get a formal education now.( My writing this here isnt meant to assume you want to read this....its just in case you do.)
I have had advantages that others havent. This is just my story.I feel fortunate that I actually have an opportunity to get an education after all these years.If I can get them to work half as hard at it as I am, Ill make it. So far its just alot of broken promises.Im fighting though!
The school I went was VERY rural.
8th grade class adveraged 120, graduating class adveraged 35. The few who went on to college were not prepared at all for that.
I was thrown out of school and my home at age 15. I was kind of in the 9th grade at that time but I missed most all of 5th and 6th. I never did any assignments, I never took test.I learned nothing in school. I hardly remember being there.My mother would have helped me if she could but there were cicumstances....
I started aquiring information about stuff in a method that I began developing at age 23.The method that I taught myself doesnt work well with blogging.
Ive been on the streets and in mental instituions etc....(many never get away from that kind of thing).I feel grateful that I am that fortunate.
Now is really my first chance to get educated.Im grateful but angry that they just keep saying that since they dont know how I learn, its more conveinient to say that I cant.Ill find a way!Im not sure how yet but I will.I aquire information by looking at some words but people who are(claiming) to be trying to teach me, say that I cant read. Im not sure its really reading either but I want to learn and Im going to.
Keep telling your story on your blog or wherever you want. Im reading it....or rather Im at least learning from it! :)

At 6:30 AM , Blogger Ed said...

O.K.just one more thing.(Like Columbo used to always say :)
Im really glad youre writing things here. I really appreciate it. Im just saying post it wherever in case theres some kind of protcol that Im not following and you want to write differently. Everybody seems to do things differntly.
My mother basically taught me like letters and first grade words.While there are sensory and visual things to consider, I think that I can learn to read.I think I just have to unlearn some bad habbits that I adapted using my own bad methods. They dont work.
Like when I was a kid I had what was called a lazy eye. Thats when one eye wonders. Id wear a patch over the other eye like a pirate.
I think there are ways for me to learn.So, I CAN do it. But for now I dont.
Ive never read one of your blog post. Ive never even read one of my own.Ive never read anything.Ive never had to. I just want to.
Maybe I can learn from ways you have adapted. Maybe many people blogging here can learn from each other.I hope so.

At 8:45 AM , Blogger Ed said...

At this point its all too much.Ill always keep working on my goals but the computer is too stressful for me.I wish I knew of better ways to do things.Im not saying anyone hasnt overcome bigger obstacles than I.Im sure many have. We just all have to choose our own paths.Im not sure how productive this path will ever be. I wish there was a way that I could participate and help others and have it benefit me but right now I really cant see how to do that.

At 3:02 PM , Anonymous Mum Is Thinking said...

Ed, I'm glad you're making so much effort to keep learning. There's no reason to think we stop learning at a certain age, though I know some people seem to feel that way. Keep it up, you're doing well.

It sounds from your last comment like you might be feeling overwhelmed at the moment? If that's the case, don't feel alone. Sometimes I just read online, or just talk to my husband about things I've read and take a break from participating. I think it helps to take some down time to process things, otherwise it gets too overwhelming. I don't know if I read that situation right for you, just that's what it sounds like from my own experience. Time to just breath deeply and process things is helpful.

At 4:31 PM , Blogger Ed said...

Yep, Thats it alright. I will take your advice. Thanks


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