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Wednesday, January 1st, 2020
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I've taken Mariel's old, tired web page and neatened it up a bit. It's now using frames; if you start there you'll find the original content, some additional comments (the 4+ years page), this blog, and a picture gallery all accessible. Note that if you start from her web page, hit LiveJournal using the nav bar, then click on the Mariel's Web Page link in LJ, you'll end up recursing the frames.
If you click =>here<= you'll get there without the frames. You can also get back here without the frames from her Links page.
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"Food and eating are hardwired instinctive behaviors, and an autistic kid will have to be very very VERY hungry before the need for nourishment overcomes the brick walls of sensory aversion associated with a vide variety foods that most Neurotypical people find stimulating and interesting. Let him be him on this one. There is no need to change it."
http://www.invertedsphere.com/raventones/autism/pickyfood.html
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At Davis Picnic Day Mariel got a brief lesson in fencing. I'd say she didn't do too badly, though Westley doesn't have anything to worry about just yet.
( Pictures! )
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Thursday, January 26th, 2006
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(Blake is the autistic boy we help out with; see ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) mattblakk.)
There's this guy who shows up to pick up his daughter at the same time I pick up Blake. Sometimes he brings his pet iguana, which is small (for an iguana -- something about the size of my forearm plus a tail). John and I have become pals of a sort, and his iguana likes me.
Seriously. It crawled up my arm once and settled on my shoulders, which surprised John, who says she's never done that before.
I of course claimed it was just that the ladies all love me. :)
So last week I was there chatting with John while waiting for Blake, and she crawled up my arm and was sitting on my head (on my hat probably) when Blake came out...
... and freaked.
It wasn't the iguana, not as such. He's petted her before, and in fact 5 minutes later was happily petting her again. It's just that Blake is not used to seeing John's iguana on my head. The next day one of his helpers, Cece, was talking to John about it. In Blake's perception it was probably about the equivalent of seeing John's head on my body.
Next time John shows up with her I'll try to get her to crawl up onto me while Blake is watching. It still may freak him, but at least he'll get to see the transition instead of being confronted with it all at once. Hopefully it will give him a mental connection he can use to deal with it.
- Dad
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Friday, September 30th, 2005
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Fibbing ability linked to the leetle white cellsPublished Friday 30th September 2005 11:42 GMT Pathological liars' brains are different from normal people's. The fibbers had up to 26 per cent more white matter than the honest folk, a study has found, suggesting that it is the white matter that allows people to deceive, and that pathological liars may not always be in complete control of their porkies.
http://www.theregister.co.uk/2005/09/30/liars_brains/
Yes, there is an Autism connection in this article, if a minor one.
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Sunday, September 18th, 2005
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I was in Borders with the kids (three, including two of mine and one I borrowed for the occasion) and was watching the borrowed one intently when I overheard another parent explaining to one of her children that she would be in a different section. I didn't pay much attention until I heard her stop and say, "Look at me. Look me in the eye," before starting over.
This sounds exactly like one of us trying to get Mariel's attention to tell her something important. (And she used exactly the same tone of voice we would.) "Stop what you're doing for just a moment and focus on what I'm saying" is what it amounts to. If she's looking at the book or the toy or the computer or whatever, she probably isn't listening to me. She might be, but it's problematical. If she's looking me in the eye, she's paying attention to me.
That's not something you have to do with ordinary kids.
I watched the little boy -- about 6 or 7, I'd say -- for a few minutes until he got up and ran off. I'd have liked to have talked to the mother and compared notes, and introduced her to Mariel, but there was no opportunity and while I'm virtually certain that he was an autie, it's difficult to start a conversation. What do you say? "Is your child autistic?" If you're wrong, it's a big embarrassing moment, and even if you're right, it could be awkward depending on the parent's feelings about it.
Still, he did have the appearance and mannerisms of an autistic child at about Mariel's level at about the same age. I honestly probably wouldn't have noticed if I hadn't heard the key phrase. Of course, I was more focussed on my 2 year old charge. He would have simply been yet another quiet kid sitting on the floor reading.
Mariel's new assistant Kathy has been expressing surprise at how well Mariel blends in. She is actually quite good at it. It's not until you try to talk to her that you'd notice her lack of language skills, or if you know what to look for you'll see that she largely does parallel play. Kathy also noticed that while Mariel doesn't necessarily follow all the instructions she's being given, she watches the other kids for her cues and does what they do.
She is a quite clever little girl.
Just for the record, though, these days it's not that hard to get her attention. "Look me in the eye" is rarely needed. But it's a key phrase.
- Dad
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Mom here. The following is the text of an email sent to the past teacher in PA.
Hi!
I have to say that this year's school plan, having Mariel in what they call around here an "SDC" - a Special Day Class - might have made her look good in class performance, but on the whole it's been a failure.
I spoke with the teacher Linda Cris, who's retiring this year after working with autistic children since... well, since the year I was born. :) Irvine does very little inclusion, since it doesn't have the money for the aide staff that would require.
Well, not long ago friends invited us to consider Davis, CA (home of UCDavis) as a possible place to live. I'd been there once before and it really is a wonderful little city. Not cheap to live in, but a damned sight cheaper than Orange County.
I went a few weeks ago to look at it as a possible city to live in until we knew what we were doing next. By the end of the day I started thinking of it as a place we could put down roots. (go to http://daviswiki.org) But - how were the schools?
Yesterday I was there applying for work with the school district in food services. I talked to the receptionist about the schools, asked how I would find out about their special ed/special needs services.
She made a call and said "The special ed coordinator is here. Would you like to talk to her?" You bet I would.
Shame I didn't have the IEP with me; but we talked. After asking a few questions, I said "Now I'm sorry to be so insistent, but after this past year I refuse to have Mariel in a Special Day Class. You can see (pointing at Mariel, who was climbing on a table to reach the push pins on the job posting board) how her behavior is now; it wasn't like this a year ago. If she's not spending at least part of the day with typically developing kids..."
At this point the woman interrupted me. "We practice full inclusion to the extent the child's abilities allow. We don't have any SDC classes in this district."
I almost burst into tears. After all the pain in the ass meetings and class observations and going nuts trying to resolve all this, to have exactly what I want just DROPPED into my lap... I think you understand.
So I have to get back there ASAP with the IEP, the psych evals, pretty much the whole file ("Yes, just make copies of what you need, I can go out and get a coffee for you if you like, cream and sugar?") and...
It's just that I had this gut feeling that Davis was the place to move. My family members kept asking "Why Davis?" and I had to come up with some rational explanation that would shut them up - and now I know *why* we're moving there. Oh, and the schools are good in all the other grades too, which reassured Deb. The district is about 2 or 3 times the size of Springfield Township - four or five elementary schools, two middle schools, two high schools.
I'd like to recount one more incident. After all this, I was at the big playground in Davis Central Park. A day camp session was having playtime there, it looked like 3rd, 4th and 5th graders, maybe a few older kids. I watched as Mariel grabbed the sliding handle-thing on the monkey bars, and then this girl came up and pushed Mariel along the sliding track. Mariel got down, and the girl couldn't quite reach for herself - so Mariel picked her up, and when she had the handle, Mariel pushed *her* down the track.
Oh, and the kids were playing Tag. Nothing fancy, nothing violent, nothing weird, just... Tag. Maybe I've been in Irvine too long, if I think a game of Tag is a novelty.
***
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I was awakened from a pleasant nap by the kiddo all a-glow, saying "Mom! I need help! Mac n cheese!"
All by herself, she had prepared a box of macaroni and cheese. Even drained the pasta into the colander, and poured it back into the pot, added the milk and powder...
Except you can't really fit two boxes of mac & cheese mix into a 1 quart saucepan.
Going by the kind of morning I had, you'd think I blew up. No, not me. I explained carefully why she shouldn't cook food without a grownup, I think she understood enough to start crying. I told her I wasn't angry, that she did a very good job, but the pot was too small and she had to have a grownup there in case the hot water spilled wrong and hurt her.
After she was all done crying, we finished making the mac & cheese in the 3 qt pot, and I showed her how the pot was big enough for the two batches she made today, PLUS the leftovers from last night's batch.
One of those afternoons where I feel like I did something right. Except now I know I'm not allowed to nap with her in the house otherwise unattended.
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When Deb was 3 or so, there came a time where she would misbehave in stores. My approach to this was "If you _____ again, we have to leave the store." I only had to act on this twice. Both times were accompanied by much screaming and anger, but I stayed calm and never screamed - just took Deb in my arms and left the store.
Of late, Mariel has been wandering off in stores. Admittedly I've been pretty low-key about this - she didn't usually go far, and I could find her pretty easily.
Now she just wanders off. I have been encouraging her to "use your words, tell me where you want to go!" but it doesn't work.
So now the rule is "If you walk away without telling me where you're going, we leave the store."
We did that yesterday for the first time. She had *lots* of advance warning, and I warned her that she had two chances to remember.
Taking a cute, tantruming 3 year old out of a KMart isn't all that difficult. Now try it with a healthy, strong, 70+lb 9 year old.
Good thing I'm strong, *and* that I have a sense of humor. I don't encourage Mariel to behave atypically, but I *do* get some twisted amusement out of people's reactions when she's behaving like any autistic child in conflict. I'm rarely apologetic unless appropriate - I don't want her hurt, and I don't want her to hurt other people or destroy things, which is why we left the store after she got angry.
So somehow I got her out of the KMart without anyone calling 911 to report a child abduction - I wonder when this is going to happen, as she remembers *all* the phrases from cartoons shows about kids being taken by Evil Abductors.
I put her down outside the front doors and she went absolutely *ballistic.* On the ground, thrashing like a spider on speed, she started kicking the glass on the doors. I told her she should not as she could hurt herself, and of course she got even angrier, so I moved her away from the glass, and she spat on me.
Angry little girl.
At this point someone asked if I needed a hand. A wonderful woman had pulled up, called out "Do you need any help?" I looked up and she didn't trigger my "fuck off, you don't know what's going on" sense. Right then Mariel started getting really vicious, and the woman just stopped, put on her flashers and came out.
Now, this is true of kids in general - when they feel things aren't safe or familiar, they are less likely to lose control. Suddenly this new woman was talking to Mariel, Mom was there letting her, and this woman was acting like a Teacher. Mariel went quiet immediately, answered her questions with much dramatic sobbing, and we worked out a deal. Mariel would come into the store with me, we would go to the toy department and Mariel could look for a little while.
I wasn't planning to, but I let her pick out a cheap little crown. Then we went up to pay for it, I turned to the cashier for about 5 seconds, and poof. She was gone again. She hadn't gone far, and when I got her (blowing off the purchase, yep) I pointed out that because she walked away again without telling me, we had to leave the store again.
Is there success in this? Yes. This time her crying was more crying, less tantrum. I think she was frustrated with herself for forgetting. I also think this will happen less - if we are consistent about this, do not react like a crazy parent but just quietly and firmly take her out of wherever, she'll be able to remember as best she can. I don't want to be unrealistic, but I think she can learn this new "tell mom if I'm walking away" routine.
-mom
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Three years ago at the last Seder I attended in California, while we were doing our reading rounds during the seder, when we got to the part where we read the paragraphs on the Four Sons (allegory) I ended up reading the paragraph on 'The Son Who Does Not Know How To Ask A Question." It was difficult for me, emotionally.
This year during the Seder, _catsoul_ read aloud the paragraph "The Wise Son."
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Sunday, February 27th, 2005
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Mom here.
Darling child wanted to watch TV. "After 12:00, we can put on the TV." This led to much whining and nerve-grating loud crying, which years of exposure have enabled me to stand firm in the face of. Boy, that sounded weird.
Anyway.
Crying, whining, silence. At one point the TV went on, and I called through the garage door "Turn off the TV please, it's not 12:00 yet." More whining.
Cute little head peeks through the door. "It's 12:00, watch TV?"
I looked at my clock. "No honey, it's not 12, it's 10. No TV for another 2 hours." More whining.
I went into the kitchen a little while later to grab an orange. Looked up. The microwave clock read 10:36. The kitchen clock had the little hand at the 12, and the big hand at the 6.
I think someone's been experimenting with the mutability of time.
I insisted she fix the clock. She did some amazing gymnastics to prove she was entirely too short to stand on the counter and reach the clock, and by the time she got close to reaching it I was laughing too hard to stay focused on the task at hand.
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Wednesday, February 16th, 2005
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Not only does she pull her own clothes out of the clean laundry, "fold" them and put them away WHILE I AM OUT OF TOWN FOR THE DAY...
...just now I handed her an empty trash bag to put away. She took it, ran into the house (from the garage) and came running back into the garage, taking the trash out.
She takes the trash out. On her own.
...one very boggled Mom.
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Sunday, February 13th, 2005
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Saturday, February 5th, 2005
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Wednesday, October 13th, 2004
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Dad here.
The economy has been really bad here in Pennsylvania, and I've been out of work for too long. So we've decided to pack it all up and move to Southern California. We picked Southern California for several reasons: we have friends there, we have family there to mooch off of ;), and we have a small startup business with some partners who live there.
Sorry we haven't been updating here. Mariel has been showing constant improvement, both in cognizance and self-expression. She's an amazing little girl. All the people who have been working with her are very sad to see her go. Her special course teacher in school, Mrs. Irwin, tells me that one of the other boys in her class had a melt-down on Monday when Mariel didn't show.
He's been seeing her in class for three years now. She's been a good friend and a regular fixture for him. I don't blame him.
So they took a road trip across the US, stayed over at friends' and family's places, and minutes ago arrived at my mother-in-law's house. Mariel is very excited about visiting. I honestly don't think she understands this isn't a visit, it's a move.
We'll see. She's a smart kid. Maybe she has figured it out.
OK, so now on to business. We're putting the kids into a school near my mother-in-law's house in Irvine, not near my parents' house in San Clemente. Seems like a better school district. Of course we need services for Mariel. Here's the latest on that from Mom:
Oh, just spoke to the woman at Greentree Elementary today about Mariel. There might be a problem fitting her into an autie class - you see, all the kids at her level of behavioral whatever are *much* lower functioning, and the test scores she shows on the stuff I sent express the need for a much higher functioning environment. I told her, with friendly intensity, that when the IU placed her in an environment that they felt was appropriate behaviorally with other auties, she regressed badly. I also said that I recognized that her previous class program was exceptional compared to what many other school systems were set up to offer, and that I'd be happy to help them create whatever program was best for Mariel. That was round two or three, I think, where I let them know further that we are not to be messed around with. :)
Indeed. It's not a TKO, but I think she has Greentree on the ropes.
I have to mention one of the stops. I won't say which one. The little boy who lives there was acting out -- just like a puppy who hasn't had consistent discipline. When Dad threatened a timeout -- an appropriate enough punishment -- Mariel got upset. She's still a bit confused about personal boundries, so she tends to get upset when anybody is put into a timeout. Anyway, while Dad was yelling at Boy, he slapped him in the face -- not very hard, but hard enough. Mariel got very upset and started crying. For a long time she wouldn't look at either Dad or Boy.
Mariel does not react well to other children being struck.
Good for her.
Good for us.
I'll try to keep up with this more. Her teacher has the URL for this blog and wants to keep in touch.
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First Night Out here.
It actually went very well. When we left, Mariel was doing fairly well at a maypole dance. But she does very well giving specific instructions, and there was the little girl there helping out when Mariel faltered.
I presume the rest of the sleepover was relatively uneventful, and that she had fun. The only real comment we got the next morning was that she was the best-behaved girl there, that she went to sleep first and woke up last. She did not crawl into an adult's sleeping bag at 3am. She was cheerful and didn't protest when we came to pick her up.
The clothes inside her overnight bag smelled like pee. We figured she'd had an accident during the night, but her sleeping bag is fine. I kind of suspect she didn't make it to the bathroom quite in time and quietly changed her clothes on her own.
In any case, I'd call this a rousing success. :)
- Dad
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As I write this, Mariel is at a Brownies sleepover event.
This is the first sleepover she's ever attended. She's watched her big sister go to many, but she's never attended one herself. I'm not even sure if she fully understands that she'll be sleeping there.
But she loves tents, and she's with friends, and the lady sponsoring the event has all our phone numbers. There's a little girl there who knows exactly how to "speak Mariel," loves to give her help and guidance.
This is new for all of us. Mom is chewing her fingernails and drinking beer. But really, I think she'll be fine.
Of course, she can't crawl into bed with Mommy or Daddy at 3am...
- Dad
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With most kids you can teach them a rule, practice a few times, and then just remind them occasionally. I mean rules like "look both ways before crossing the street." With Mariel, you have to be right there all the time. You can't expect her to learn it and apply it appropriately on her own; you have to stop at every intersection, every driveway, every parking lot row you cross, and repeat the lesson.
I was picking her up from a Brownies outing at a local park. We were alert on the road, but on the side road we were being pretty casual. Really very little traffic, in fact I only remember seeing one car drive through there; most people parked on the main road and hoofed it. But Mariel decided to run to a group of her friends across that side road just as a car was exiting.
Fortunately, I was alert and she is good at reacting to a certain signal. We didn't really plan it that way, but when I see her going into danger like that my reaction is to try to get her attention, and then I get urgent. "Mariel Mariel STOP!" on a rising tone. When I yell "STOP! like that, she stops instantly.
I don't know if the driver would have stopped in time. At first I thought so, but considering where they both were at the end of their trajectories, I'm beginning to think not.
Most kids catch on pretty quickly. Which isn't to say they still don't get distracted and run where they shouldn't, but they do mostly pick it up on their own, and they start getting cues from your body language and your habits (e.g. I scan quickly before crossing if I can see, and stop and look if I can't see around something). With Mariel, you have to be right there every time.
She is starting to pick it up, but it's frustrating. With most kids you have to maintain an increased level of awareness. With Mariel you have to be constantly aware. Adding this to the mix just makes my brain hurt.
But you have to set up the habit. Mariel won't think of it on her own when she's focussed on something, so it has to be ingrained as a habit right away, and that means being right on top of it all the time.
On the brighter side, last night in Brownies they were making what they called "Chinese jump ropes," which were rubber bands strung together. It's the usual method, wrap a loop around the other rubber band and tuck the end through. The den mother demonstrated once and then started explaining the procedure, and by the time she was done explaining it, Mariel had made 4 feet of rubber band rope. (Some of the other kids were still having trouble, I could here them helping each other.)
In some things she's just a natural.
- Dad
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Saturday, March 27th, 2004
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"Tiger."
"That's right, honey. It's a picture of a tiger on a man's chest."
"Brass tiger."
Wow. I surely wasn't expecting that.
- Dad
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Thursday, March 25th, 2004
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Let's see. Mariel has lately been sleeping with her sleeping bag. Not in it -- under it, like a blanket.
I've wondered many times if she prefers heavier blankets because of the pressure. I do.
I changed her bedding a few days ago because she wet the bed. I also soaked the mattress with almost a pint of Nature's Miracle and flipped it over. I pulled a blanket out of the closet to replace the sleeping bag. That night Debbie complained that Mariel had her (Debbie's) blanket. Apparently it had been washed and put away, Debbie had been using the down comforter meanwhile. So I gave Debbie her blanket back, and Mariel was very happy to inherit the comforter, presumably because Debbie had been using it.
Yeah, and there's more.
It's actually our king-sized comforter, but she was happy with it, so I let her keep it. Well, early this morning I found a dead mouse on the floor, and mouse guts on our comforter (the all-artificial one on my bed, not the down comforter Mariel was using). Thank you so much, Darcy. I gave the larger part of the remains to the snake and cleaned up the rest; the comforter went into the washer. Since we don't have a working dryer, it's outside hanging from the line.
In this weather it may take a few days to dry. So we needed a comforter. Only one left -- the one Mariel is possessing. How to get it away from her without screaming tantrums?
Well, I sat down and explained to her that Mommy and Daddy need it, why, and that she could have almost any other blanket she wanted. She gave me that blank look that gives no clue what's behind it. I pulled a blanket out of the closet that Grandma had made for her, and asked if she wanted it. Much to my surprise, she said "yes." We traded blankets and I asked if she wanted another blanket too. She said "yes" again. This time I dug up an afghan Grandma had made for Daddy years ago, and spread it over her while explaining its origin. She seemed to like both blankets.
Did she go along because she liked the blanket I offered her? Did she understand when I explained why we needed the comforter? Did she understand why, or just understand what I wanted, and could tell how serious I was?
I really didn't expect her to go along so easily. But her communications skills and social skills have been growing of late. Maybe she really did understand.
- Dad
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cheerful.
thoughtful.