A group of us (Autistic and other disabled adults) have gotten together to start a collective blog called We Are Like Your Child because we want to help by talking frankly about difficult things and how we get by, so that people can see what happens when we grow up, in more intimate detail. Some people might think our messages of hope and pride mean we don't think or admit we have problems, but that's not really the case. We totally notice. I just posted a story that happened just recently here at this conference, as an example. Please add the blog to your reading list and check it out!
We Are Like Your Child: Lost, Mistimed, and Melty.: This just happened, so it is a quick vignette which I wanted to put here as I believe it will fit in to the theme perfectly. There are dif...
Thursday, June 27, 2013
Tuesday, June 18, 2013
Wednesday, June 12, 2013
Wandering. Please Read And Spread Widely.
There have been a great many questions coming in during the past few weeks about wandering or eloping or the various things people call it, so many that it was hard to pick a particular one to answer, because of the different nuances.
Some of the questions were about my "position" on it, and some were about my experiences, and some were about whether I could help.
I have read the things that brought up some of these questions.
My heart goes out to the families of the children who wandered into danger and are lost to us now. You are all in my prayers. I have something very practical in terms of help and assistance to offer for families in similar setting situations, which is why the title asks you to spread the word. Soon I will post this brochure and contact information.
For those who wanted to know my experiences and maybe thus what I think about the idea of the "wandering diagnosis" controversy, I'll answer this a little, because the good news at this side of the story is that I totally "get" danger now at age 43 whereas looking back I was one of the white-knuckle-conducive kids that didn't have the foggiest clue about it before (sorry Mom). So, happy ending. I did wander around the water especially and there were these bridge access ladder things that, looking back, you are obviously not supposed to climb on, but of course I had to be there. The difficulty of getting on there could have been a clue, but, you know, no, because it was that much more compelling to get the perfect view of the dappling on the water. I also hung around train yards and so forth.
My thinking at the time as far as I can remember, and I have been thinking about this for a couple of weeks so I could report it properly, was sometimes more like, "Whoa, cool," as in a towards-wander, and sometimes, "Gotta-go-now" as in an away-wander, and sometimes it was wandery, but sometimes kind of zippy, like even thinking it was zippy, and even to the point of panicky. I have the zippy thoughts now, but I do not do them, and this next paragraph is why.
In the away-wandering, I actually stopped doing that rather recently maybe early in this Millennium because I found out how much it hurt people's feelings. It was not easy to stop it.
In the towards-wandering, again, I have a concept of danger now. I do not recall when I developed this but I no longer think it is an attractive idea to do whatever without thinking about it. There is another faculty that kicks in, another thought voice, that's like, you know, you're going into the street, might want to look for cars not to drive on your foot or your body. I don't know why this started.
A third wandering thing, a slower one, which is slow and in NO way do I mean it to put any onus of "blame" on any family or friends but since this one is not gone and still happens, I have to explain it too. Also I pledge right here and now to work on it. This is probably the classic, non-zippy wander, and it is neither to nor fro. It's this. Because all my life I have been someone that people think of as having the potential for kind of wandering off, I think I get the subliminal impression that people will follow me, like I secretly think I am the leader of the going of places. Somewhere in me is a belief or a trust that people will psychically find me or they will have followed me in the first place, because that is mostly true. Again, Mom, I am totally sorry. When I look back on my audiovisual memory files, especially of that day in the book store, how white with panic you looked... I really am sorry.
So to make a long story short, for me myself I am not thinking much when I go off somewhere, but the truancy from high school was more sort of an emergency, a communication like Landon was mentioning, and I couldn't talk about it because even though I am talkative, it is a new feature of me to be outgoing or really even let's say (to be charitable) coherent about emotions. So luckily, my folks thought of that at that time, because I guess it had a different flavor? I don't know. They are kind of psychic?
And remember this: I hardly ever do it any more, and I'm going to do it even less.
I forgot to say this: Sometimes when I was a youth and I got lost I did not like it once it dawned on me I did not really know my way back at all. Like, really didn't like it. More panic. Not as if I thought it was dangerous in any reasoning-about-actual-things sort of way, but as if when I newly noticed myself to be not where I normally was, it suddenly became an issue of drastic proportions and felt life-threatening for some reason when prior to that it had been just fine with me.
Now. This brings me to this.
Some people don't talk, and they are really young, or they are in other situations where they do not have a grasp of dangerousness right now, and the concept of them going out by themselves is really stressful for everyone because they could really get hurt, or dead; and it is a constant glass-in-the-guts worry for people who love them and want them safe. This is also true of some people with Alzheimer's and Down syndrome, by the way, as it does not just happen with Autism.
Where I live, luckily I am on the Mayor's Advisory Commission on Disabilities which gave me a chance to ask Marita Manning, Certified ADA Coordinator, how they handle that here. It turns out there's a wonderful grant they got here in Naperville for a thing called Fastrack where NOBODY on it since they started has been lost for even half an hour! I think that's kind of awesome. She is the one who trains with a special team of selected Police how to work with the tech as first responders in a rescue so they don't alarm the person and they would also be able to notice if something else was wrong. So the people are found within thirty minutes AND treated kindly and gently by specially trained officers.
So to make a long story shorter, I have scanned in the inside of the brochure about it here as it works in our town, but Marita told me to spread all her contact info all round the place so that people can get this program into their own towns and special teams of Police can be trained in this way.
With the technology we have now, people who wander away can be found very, very soon, and with the knowledge we have now, they can be found by Police who know how to show the kindness they feel in their hearts toward people who are innocent and in peril. Just look at the way the brochure is written and give Marita a call or e-mail to get that in your location. We can stop this danger together.
Everyone please contact Marita so much that Fastrack is available EVERYWHERE and Marita, who is totally kind, is moved to yell at me from being contacted too much. That's how much contact I hope she gets from this blog being re-blogged. Hehe. Laughing but serious. She's got a grant for this and she can tell your town how to get more grant money, too. She's brilliant.
Fastrack saves lives all the time.
Once again with the contact info:
Marita Manning, Certified ADA Coordinator for Naperville, IL, can be reached at E-mail: manningm@naperville.il.us Tel: (630) 420-6725 Cell: (630) 421-0260 TDD: (630) 305-5205
Thank you for listening.
Love,
Ib
Some of the questions were about my "position" on it, and some were about my experiences, and some were about whether I could help.
I have read the things that brought up some of these questions.
My heart goes out to the families of the children who wandered into danger and are lost to us now. You are all in my prayers. I have something very practical in terms of help and assistance to offer for families in similar setting situations, which is why the title asks you to spread the word. Soon I will post this brochure and contact information.
For those who wanted to know my experiences and maybe thus what I think about the idea of the "wandering diagnosis" controversy, I'll answer this a little, because the good news at this side of the story is that I totally "get" danger now at age 43 whereas looking back I was one of the white-knuckle-conducive kids that didn't have the foggiest clue about it before (sorry Mom). So, happy ending. I did wander around the water especially and there were these bridge access ladder things that, looking back, you are obviously not supposed to climb on, but of course I had to be there. The difficulty of getting on there could have been a clue, but, you know, no, because it was that much more compelling to get the perfect view of the dappling on the water. I also hung around train yards and so forth.
My thinking at the time as far as I can remember, and I have been thinking about this for a couple of weeks so I could report it properly, was sometimes more like, "Whoa, cool," as in a towards-wander, and sometimes, "Gotta-go-now" as in an away-wander, and sometimes it was wandery, but sometimes kind of zippy, like even thinking it was zippy, and even to the point of panicky. I have the zippy thoughts now, but I do not do them, and this next paragraph is why.
In the away-wandering, I actually stopped doing that rather recently maybe early in this Millennium because I found out how much it hurt people's feelings. It was not easy to stop it.
In the towards-wandering, again, I have a concept of danger now. I do not recall when I developed this but I no longer think it is an attractive idea to do whatever without thinking about it. There is another faculty that kicks in, another thought voice, that's like, you know, you're going into the street, might want to look for cars not to drive on your foot or your body. I don't know why this started.
A third wandering thing, a slower one, which is slow and in NO way do I mean it to put any onus of "blame" on any family or friends but since this one is not gone and still happens, I have to explain it too. Also I pledge right here and now to work on it. This is probably the classic, non-zippy wander, and it is neither to nor fro. It's this. Because all my life I have been someone that people think of as having the potential for kind of wandering off, I think I get the subliminal impression that people will follow me, like I secretly think I am the leader of the going of places. Somewhere in me is a belief or a trust that people will psychically find me or they will have followed me in the first place, because that is mostly true. Again, Mom, I am totally sorry. When I look back on my audiovisual memory files, especially of that day in the book store, how white with panic you looked... I really am sorry.
So to make a long story short, for me myself I am not thinking much when I go off somewhere, but the truancy from high school was more sort of an emergency, a communication like Landon was mentioning, and I couldn't talk about it because even though I am talkative, it is a new feature of me to be outgoing or really even let's say (to be charitable) coherent about emotions. So luckily, my folks thought of that at that time, because I guess it had a different flavor? I don't know. They are kind of psychic?
And remember this: I hardly ever do it any more, and I'm going to do it even less.
I forgot to say this: Sometimes when I was a youth and I got lost I did not like it once it dawned on me I did not really know my way back at all. Like, really didn't like it. More panic. Not as if I thought it was dangerous in any reasoning-about-actual-things sort of way, but as if when I newly noticed myself to be not where I normally was, it suddenly became an issue of drastic proportions and felt life-threatening for some reason when prior to that it had been just fine with me.
Now. This brings me to this.
Some people don't talk, and they are really young, or they are in other situations where they do not have a grasp of dangerousness right now, and the concept of them going out by themselves is really stressful for everyone because they could really get hurt, or dead; and it is a constant glass-in-the-guts worry for people who love them and want them safe. This is also true of some people with Alzheimer's and Down syndrome, by the way, as it does not just happen with Autism.
Where I live, luckily I am on the Mayor's Advisory Commission on Disabilities which gave me a chance to ask Marita Manning, Certified ADA Coordinator, how they handle that here. It turns out there's a wonderful grant they got here in Naperville for a thing called Fastrack where NOBODY on it since they started has been lost for even half an hour! I think that's kind of awesome. She is the one who trains with a special team of selected Police how to work with the tech as first responders in a rescue so they don't alarm the person and they would also be able to notice if something else was wrong. So the people are found within thirty minutes AND treated kindly and gently by specially trained officers.
 |
| Marita Manning, the Certified ADA Coordinator for Naperville, IL, is the
contact person training and liaising with our Police on this life-saving program. She is delighted to have
me spread the word on this blog and have anyone get in touch with her so
she can explain how to get this in your location. Marita Manning can
be reached at E-mail: manningm@naperville.il.us Tel: (630) 420-6725
Cell: (630) 421-0260 TDD: (630) 305-5205 |
[Image: a brochure, scanned. Update written in the cold winter maybe six months later: when I wrote this in the past summer, I did not know that screen readers could not read the words in a scanned document. There are a lot of words in the document, the most salient among them being the information that in this program, the first responder team is a volunteer team of specially trained ones who get to know the people ahead of time and are familiar with communication styles and the whole family dynamic, and they say "locating people is only half the mission" and that they emphasize relationships before the need for a rescue may arise. I think this is pivotal and wanted to make that information accessible because I am sorry that it might take me a while to find this document again and type out the words inside which I will then put as a PS at the end of this post as soon as I can. Thank you for your patience.]
So to make a long story shorter, I have scanned in the inside of the brochure about it here as it works in our town, but Marita told me to spread all her contact info all round the place so that people can get this program into their own towns and special teams of Police can be trained in this way.
With the technology we have now, people who wander away can be found very, very soon, and with the knowledge we have now, they can be found by Police who know how to show the kindness they feel in their hearts toward people who are innocent and in peril. Just look at the way the brochure is written and give Marita a call or e-mail to get that in your location. We can stop this danger together.
Everyone please contact Marita so much that Fastrack is available EVERYWHERE and Marita, who is totally kind, is moved to yell at me from being contacted too much. That's how much contact I hope she gets from this blog being re-blogged. Hehe. Laughing but serious. She's got a grant for this and she can tell your town how to get more grant money, too. She's brilliant.
Fastrack saves lives all the time.
Once again with the contact info:
Marita Manning, Certified ADA Coordinator for Naperville, IL, can be reached at E-mail: manningm@naperville.il.us Tel: (630) 420-6725 Cell: (630) 421-0260 TDD: (630) 305-5205
Thank you for listening.
Love,
Ib
Friday, May 10, 2013
Thursday, May 9, 2013
Pronoun Problems (Asides on Self-Loathing and Gender)
This may not be anywhere approaching a verbally speaking
Autistic universal, but I have indeed met many others with this feature, and it
is fresh in my mind because of last night. (This was going to be about one topic but the topic led to other asides, so I added the other topics to the title in parentheses.)
Sometimes, although I think I seem to speak fairly fluently, I call
myself “you.”
This is different from the idiomatic use of “you” as in
“y’all” or “one” to indicate a belief that I have access to everyone else’s
feelings or experience. It is an
accidental usage that happens when I am tired or nervous or upset and it causes
me to make statements I do not agree with, straight up.
Last night, on the radio, which turned out to be a lot of
fun (but I was shockingly nervous about it) I am pretty sure I said something
like this: “You need the right partner [to be able to raise kids].” This is not something I actually
believe, at all, especially since I know that Paula, who was there, is a
fabulously successful single mother, just for one example. What I do know and believe is that I need the right partner, and would not
have undertaken to have children prior to meeting my Layenie. Additionally, the question was about
me, not “you,” “y’all,” or “one.”
And so.
When I was younger, the “you” substitution happened more
frequently, and more catastrophically.
For example, I regularly used to say, in a fight, right before my exit
stage left, some rendition of “you’re crazy.” This is wrong and ableist; and in addition to that, I said
it precisely when I was afraid I was going to “lose it” and must therefore
leave the scene to avoid being viewed engaging in “S.I.B.” etc. I was talking about myself. Back then, I believed my autism to be a kind of mental illness label because it was in the DSM-III. Maybe it is or was, but anyway, irrelevant. To me it was okay for me
to be ableist and homophobic about myself, because in my own mind, I was not a
person, but an alien, so my respect for persons ethics did not apply. (This history probably contributes to why
I am so enormously upset by dehumanizing language and the like, other than the
fact that dehumanizing language and the like is heinous.) Of course, the listener had no way of
knowing I was talking about myself.
For all the world, I had just called her crazy or something equally
offensive and mean, despite the fact that I have never otherwise assented to wrong-treatment
of people with mental illness labels such as using them as if they were a slur, or anything like that. It would happen in this one type of case.
Self-loathing is a horrible thing, was for me, made me think nothing of lashing out in ways I can never agree with when I look at them as my full informed self. I see other people doing this kind of thing and it is heartbreaking so I try to be understanding but it is not always easy but I have to try since I was such a punk.
Self-loathing is a horrible thing, was for me, made me think nothing of lashing out in ways I can never agree with when I look at them as my full informed self. I see other people doing this kind of thing and it is heartbreaking so I try to be understanding but it is not always easy but I have to try since I was such a punk.
If you are reading this, any of you to whom I have done this
sort of thing, and I have not yet apologized to you, please know that I am very
sorry about it, and I hope you now know how much I regret not having been able
to treat you better then. As a kid
I was troubled and looking back I think unkind and sometimes even ghastly, and now I am happy and probably
still sort of annoying, but I do work hard at being decent.
In the nineties, when it was all the rage, I was able to
take advantage of the fad and do a lot of drilling in “I Language,” which
helped a lot with this part of the pronoun problem. But I began to notice it in other people with autism. Even in simple declaratives, such as
Pat telling me I wanted a hot dog.
Of course I did not want a hot dog, as I am vegetarian, but it was easy
and natural for me to understand his language and realize that he was not
trying to prognosticate about my state of hunger in any way.
Still there are pronoun problems receptively that have not
been drilled out, and I do not know how to drill them out, and I will talk
about them here now because people who know me well have encountered this, but
not everyone will have done. Also,
it occurs to me, this might be a problem for others, and if so, it might be a
problem for schoolchildren and thus have bearing on say reading comprehension
tests.
When my friends tell me a story with other people in the
story, if there are more than two characters, I may get lost in the pronouns. The proverbial he-said/she-said story
is often literally the best I can follow, and if there’s another he or she in
the mix, I might stop you and say, hang on, will you tell me this again using
everyone’s name and no pronouns?
This might happen even if the story is simple and obvious. I do not know why. It may not help if I know all the
people. It sometimes doesn’t even
help if the sentences start with the correct person’s name! I still can get mixed up, and keep
stopping your story with confused questions about like, wait-wait, so Jeannie
was driving the semi? Hehe no silly, Jeannie is three years old. Pronouns are not my friend.
There is a bright side to this. I will use this platform to talk about the bright side
because it can also bring awareness of a thing that is intersectional and not
everyone may know about. Grin.
Some people do not use the pronouns 'he/him' or 'she/her' to
refer to themselves. For example,
they might prefer the singular 'they/their'. There are also a form of pronoun that goes 'ze/zir' and other neologisms related to this. These exist because of rejecting binary
notions of gender. However, many
times, others do not respect people’s right to choose their own ways to
identify themselves, which disrespect is uncool, or, and I think this is less uncool, but
something I can help with here, they simply are not aware to ask about it,
because not everyone has heard of cutting edge things like rejecting the
binary.
When you are like me, and you already know you are going to
mess up pronouns all over the place, you have a lot of internal latitude to ask
over and over, and also, you don’t really mess up people’s personal pronouns
that much because you have a verbal habit of using names whenever possible to
avoid them. Grin. Bright side.
Now I would like to warmly invite other people to share
experiences related to pronoun mixups, with self or kids, if any such
experiences exist. I don’t know
how usual these problems are.
Thanks,
Ib
Tuesday, May 7, 2013
Why Do So Many Autistic People Love Trains?
In honor of National Train Day, which is this coming
Saturday May 11th, the day before Mother’s Day, I’m going to answer one of my most
Frequently Asked Questions (FAQs).
I’m doing this theme now to give everyone a head’s up because National
Train Day is only six years old now and not so well known yet. You don’t want to miss it, because your
local train station probably has wonderful free events going on (click here to see if there are Facebook invites). So this is also a Public Service
Announcement (PSA).
Why do so many
Autistic people love trains?
To answer this question, I can speak from the personal standpoint,
and also as someone who is well educated and knows a great many other Autistic
people who have filled in gaps in my own education.
I have ridden a large number of Amtrak lines and discussed
most others in graphic detail with Autistic colleagues as well as having been a
passenger on large lines in Belgium, Germany, France, England, Canada and
Scotland. As for commuter trains,
I have taken a variety of such in the aforementioned countries, in addition to the
USA, including the debut of MAX in Portland, OR, as well as BART, the Metra and
Metro, the T, the L, and the good old NYC Subway. This list is nowhere near exhaustive, but I still do not want to leave out
the fabulous EuroStar.
One last thing I will tell you here that I have not written
before is that in the 'eighties, I also rode in some boxcars on one of the Union
Pacific lines. I have since found
out that the “Piper” we would have to pay upon arrival at some particular
bridge we never actually came to cross is not a charming colloquial expression
for Conductor on a freight train.
Sorry about that, Union Pacific.
I love you forever.
For all the trains I have ridden, I have watched and
discussed many, many more.
And thus can give you my answer:
We love trains because they are excellent, and also awesome.
Love,
Ib
Monday, April 29, 2013
Tiny Grace Notes Celebrates 1000 Ausome Things #AutismPositivity2013
72 Ausome Things:
Steamengines dapples twinkles twirling light music sparkling
trains water spirals hexagons airplanes sailboats lightrail trees cars ferries
lakes clouds triangles logic dodecahedrons cats dictionaries diesels intermodal
maps cranes hummingbirds motherboards laptops bubbles propellers canoes trails
yurts books fiddles movies lakes bikes wheels encyclopedias globes mobiles art
mixers metronomes clocks helicopters freighters semis poetry numbers letters
dogs squirrels rivers leaves fish babies rocks paper sparrows octagons trucks
taxis thesauruses dinosaurs multiples of twelve.
I can only write 72 of the thousand ausome things right now
because I need to sleep, and sleep is one of them, the 71st. My friends will write about other
ausome things.
But for my part, I am saving the best for last: you. You are ausome.
Love,
Ib
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