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Spexxvet 09-01-2011 10:56 AM

That is really great news, Clod. Good for them. And hopefully life will get easier for you and Mr. Clod. And thank FSM for your doctor.

Sundae 09-01-2011 10:59 AM

Tiger could not have drawn that picture.
He writes well, and reads well, but cannot draw from imagination.
Give him something to refer to (he doesn't copy, but he needs someone else's imagination) and he has a very good eye for colour, shape and proportion.

If I simply requested a picture to illustrate I Like Playtime (recess) there is a good chance I would get a scribble.

I've bought him a structured doodle book for us to work through together. It has directions and examples on every page. I might be way off mark, but I really hope it will speak to his organised mind and we'll get some lovely patterns, colours and copied creatures.

Fantastic work, Clod.
Great to hear Fobette is progressing so well.
Of course she is different than Fob, but your experience with him has obviously helped you with her.

Pico and ME 09-01-2011 12:27 PM

Wow, I can relate to Tiger. I have absolutely no artistic imagination, but give me something to copy and Im not half bad. However, give me an organizational challenge and I'm a whiz - for instance, getting everything to fit in a suitcase or in cabinets when it doesn't look like there is enough space.

monster 09-01-2011 02:18 PM

fan-bloody-tastic

classicman 09-01-2011 05:54 PM

Quote:

they accidentally rang up the real price of the Entocort prescription, then undid it and put in the insurance copay.
One month's supply of Entocort for one child? $.805.95. No shit.
The real cost... $.08595.

I'm dealing with the same thing.
Total "no insurance cost" was over $2000.00 a month.
Medicaid cost, now that I finally found a pharmacy that accepts it, $0.

ZenGum 09-01-2011 08:40 PM

This thread always makes me think of Lorenzo's Oil.

Griff 09-03-2011 08:08 AM

He should draw for Hyperbole and a half.

Clodfobble 09-15-2011 09:05 AM

Well, it's happened. We got our very first "he must not have ever had autism to begin with" implication, just like I knew we would. (The comment was from a distant acquantaince, sparked by the latest progress video I posted on YouTube, seen below.)

Of course I couldn't let it stand, and I politely asked how many other kids out there with NotAutism (TM) are going untreated because their parents have been relentlessly told that their kids' disease is definitively not treatable. About 85% of the parents I have personally convinced to try treatment have seen major improvements, and at that ratio it kind of comes around full circle and becomes "children with a diagnosis of autism" again, because what other descriptors do we have? Might as well re-diagnose the non-responders instead, it would be less paperwork.

I can't wait until it turns out my daughter never had autism either.


classicman 09-15-2011 09:21 AM

Wonderful. I love seeing this after following this thread for so long.

Clodfobble 02-19-2012 09:59 AM

There's been way too much going on, I keep starting these long posts and then abandoning them because I don't have enough time to properly explain everything that's been happening. But I wanted to throw this tidbit up here.

Studies on the GI problems of autistic kids have been coming fast and furious recently, a new one is published at least once a week and there are a total of maybe 200 by now, confirming or exploring various aspects of autistic GI pathology. Now, when discussing one of the recent GI studies done as a joint effort between Harvard and Columbia, the Chief Medical Officer of the US Autism & Asperger Association has made the ballsy step of saying:

Quote:

This reaffirms the published findings in autism from more than a decade ago of such groundbreakers as Wakefield, D’Eufemia, and Horvath, all of whom the authors reference.
For a mainstream, high-profile MD to speak positively of He Who Must Not Be Named... believe me, this is huge.

footfootfoot 02-19-2012 11:20 AM

"...Yeah, I bet they can't get in the car after it goes..."

I was cracking up at this whole conversation, it sounds just like the kinds of chats I have with my kids.

Oh, and your kid is clearly a malingerer. nothing wrong with him at all. ;)

Clodfobble 02-19-2012 01:54 PM

Nothing wrong that a good whipping wouldn't fix, anyway!


Actually, that's what has us in a major frenzy these last few months. It was time to wean off the steroids, and it did not go well. Minifobette got off them okay, but Minifob definitely still needs them, and at a relatively high dose, or he regresses severely. Except being on them forever is not an option, they will fuck your shit up.

So we are now working with the doctor on a different combination of meds, including a higher dose of the non-steroid anti-inflammatories, plus a very low dose of immune suppressors, which have had good results in people with severe autoimmune disease. On the one hand, these meds are serious business and I'm scared to death of them. But on the other, there are kids who get kidney transplants or whatever, and they take immune suppressors for the rest of their lives and somehow manage. As the doctor said, "These are drugs that are reserved for very serious conditions like cancer--but frankly, in my opinion this is worse than cancer." And I agree. It was pretty damn devastating to watch him fall apart again within just a couple weeks of going off the steroids. Fortunately his teacher has been very understanding, since she now has to deal with a very different kid than she started with. We've gained about half of the ground back, but right now he is as bad as he was a year ago in most respects. Stuttering and perseverating much, much worse than he was in that last video. Very difficult time focusing, major emotional upsets over imaginary problems.

I keep remembering how Lookout went through this same thing with his son and Abilify. I have the medicine right here in my cabinet that would make him all better, but I can't give it to him because it will eventually hurt him worse than he's hurting now.

Sundae 02-19-2012 03:52 PM

Sorry to hear about the setbacks Clod.
My thoughts are with you and the Fobs very much.

It's odd, rewatching G after all this time.
I know when you filmed this it was because of his extraordinary progress, but the Autism markers stand out so clearly to me now.

I've worked with Tiger for a whole year (wow!) and still new people to school do not understand why he gets help and other more obvious (more worthy?) children do not. He loves order, and aside from calling out and needing immediate attention if he has something to impart, he is considered polite, well mannered and no trouble.

Mars on the other hand (my 7 year old) is large for his age, less responsive to interaction, more insistent and has a history of physical aggression. People give me a slightly pained grin when they realise I work with him too. I am about to start a highly structured programme of lessons with him. During time he was previously allowed to run around and blow off steam (!!!) I knew it was coming and have prepared for the change by having Friendship Time, where we play games that involve turn taking or the potential for pushing and shoving (praise if it doesn't happen, discussion if it does). I have chosen the children and decided the games, to get him used to the fact I am in control. I've made them fun, but imposed definite rules to ease him into it.

In fact I structured one the other week involving two Piggy games (Piggy in the Middle and Squeak Piggy Squeak) in honour of Mars's obsession with Angry Birds. He was allowed to choose two children himself for this knockabout fun. He walks out with the only two Muslim boys in the class :facepalm:

Of course it didn't matter - we're a C of E school - tolerant but determinedly Christian. The boys would not be at our school if their parents had an issue with Western values. Just gave me a wry smile.

I'm freewheeling with Tiger at the moment, so the planned structure with Mars will be a change in gear for me too. Think of me on Wednesday.

ZenGum 02-19-2012 04:38 PM

Quote:

In fact I structured one the other week involving two Piggy games (Piggy in the Middle and Squeak Piggy Squeak) in honour of Mars's obsession with Angry Birds. He was allowed to choose two children himself for this knockabout fun. He walks out with the only two Muslim boys in the class

:lol2:

Clodfobble 02-20-2012 08:18 AM

Quote:

Originally Posted by Sundae
I know when you filmed this it was because of his extraordinary progress, but the Autism markers stand out so clearly to me now.

Tell me about it. I can pick out the spectrum kid(s) in the room in under 30 seconds now. But there's no point in telling the parents. A couple years ago one woman excitedly told me that Minifob must not have autism after all, because her little boy did all those same things! Yeah.

Ibby 02-20-2012 08:37 PM

Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.

Sundae 02-21-2012 10:47 AM

I haven't had a chance to work with H this week - have had a vomiting bug which means I was at death's door yesterday, nauseous this morning, but not allowed into school until Thursday :sob:

Anyway. I've taken on board the idea H might really be embarrassed by an adult singing (as he perceives) to him.
He isn't on the spectrum, he's a child without an official statement who needs extra help.
But that doesn't mean he has to go along with the school ethos.

Because I loved singing and was used to singing every day it was normal and natural to me.
There were probably children in my class who felt like H - it's one thing for a teacher to lead a class in singing, and to sing along yourself, but to have an adult singing AT you is just cringy.

THRASS is a phonics system we use all the way through school, not targeted for lower ability children. So he knows the songs, uses the mat and sings along every day to the songs. And I know he loves singing, from the Nativity.

I'll try speaking the songs first. They are useful.
Example (a few words changed for copyright purposes)

Let's do the cat, kitten, duck, school hand-jive
Cat is C
Kitten is K
Duck is CK
And school is C and H

There's another bit about Queen being Q
It's phonics.

Anyway.
Things to think about.

Clodfobble 02-21-2012 06:14 PM

Quote:

Originally Posted by Ibram
Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.

Sort of. It's a catch-22 because when he's feeling good, he is definitely aware enough to know "I felt bad before, and now I feel better." But when he's not feeling good, the comprehension is lost to that critical degree where he can identify that now he is feeling bad again. We try really hard to promote that self-awareness when he's right on the cusp of getting better or getting worse, to ask him to stop, and think about how his tummy is feeling right now, and how his head is feeling, and how the other parts of his body are feeling, and he's making a little progress in that awareness, understanding when he's feeling a little bad, or that he just crossed that line into starting to feel relief. But when we're in the thick of a "rough" period, not a chance.

footfootfoot 02-21-2012 08:00 PM

Quote:

Originally Posted by Clodfobble (Post 796924)
Sort of. It's a catch-22 because when he's feeling good, he is definitely aware enough to know "I felt bad before, and now I feel better." But when he's not feeling good, the comprehension is lost to that critical degree where he can identify that now he is feeling bad again. We try really hard to promote that self-awareness when he's right on the cusp of getting better or getting worse, to ask him to stop, and think about how his tummy is feeling right now, and how his head is feeling, and how the other parts of his body are feeling, and he's making a little progress in that awareness, understanding when he's feeling a little bad, or that he just crossed that line into starting to feel relief. But when we're in the thick of a "rough" period, not a chance.

I'm gonna guess it's probably a lot like why people decide to go off their meds; "I feel great! Don't need 'em"

Uhh, yeah but aren't you feeling great because you're on meds?

Sundae 02-22-2012 05:29 AM

Been there done that as an adult, so it is a lot to expect of a wee bairn.

Clodfobble 02-22-2012 09:54 PM

Plus, it's not like he's the one who chooses to go off the meds or not. He just takes whatever pills I put in front of him. Speaking of which, Minifobette is going to do the pill-swallowing clinic over Spring Break. I am bouncing with excitement.

footfootfoot 02-22-2012 10:59 PM

Quote:

the pill-swallowing clinic
Ve haff vays...

ZenGum 02-22-2012 11:09 PM

Quote:

I'm gonna guess it's probably a lot like why people decide to go off their meds; "I feel great! Don't need 'em"

Uhh, yeah but aren't you feeling great because you're on meds?
Each summer I go to a hippy festival and help out in the firt aid tent. About a quarter of the ambulance cases are exactly this.
"It's such a wonderful loving environment, I dont NEED my anti-depressants/anti-psychotics/whatever..."

Usually takes 12 to 36 hours before they're being taken away. Silly buggers.

Clodfobble 02-23-2012 10:31 AM

Quote:

Originally Posted by footfootfoot
Ve haff vays...

Boy, do they ever. Ain't nothing so pleasantly stubborn as a behavioral therapist.

xoxoxoBruce 02-23-2012 03:57 PM

Ha ha, that insisting with a smile can sure wear you down. :D

Sundae 02-28-2012 03:10 PM

Followed advice from here with H today.
Spoke the song that would help, using the correct cadence, but not singing.
It got him singing under his breath. He sings well and enjoys it, as I said before. He couldn't get the missing word though, so it's a bust and I won't pursue it now.

We were very silly on one of his wordwall words.
Just before half-term we went through a new wordwall. What with the holiday and my sickness, we only got to review it again today, Other people have read with him, but I am mostly his wordwall monitor.

So before half-term he managed to half sound out coffee. He got coff, but gave the double ee an ay sound, and also gave it emphasis: Coff-AY.
I helped him put it in perspective, and in a few sentences but he did have a giggle about the way he'd pronounced it.

Today we got to coffee and he confidently pronounced it coff-AY. I'm sorry, it made me laugh. That's exactly how it is pronounced in a broad Leicester accent. I didn't intend to do more than grin, but I snickered. H then started giggling because he thought what he had said must be very funny.
So he said it again and gazed up at me with innocent eyes and cracked me up again.
Bad Mrs O.

Mrs J looked over to see what the joke was.
I told her later. As with you, I related it when it was no longer funny.
But I suspect H & I will be mildly amused by it for a while.

My first FORMAL session with Mars tomorrow:
Introduction
Establishing rules
Warm up
Issue being addressed
Review
Cool down/ relaxation

Nervous. Not least because I have been left to scrabble for a private space.
Might have to kick this upstairs. The people I have addressed my concerns to so far have given reasonable ideas of how to solve it, but they aren't realistic ie use a Topic Room: all booked for that time. Hall? Booked. Classroom? Not available until 13.30 (20 minutes into the session) Library? Not condusive to these sessions because people drop in and out.

That's the trouble with starting partway through the school year.
I found that with Tiger last year.
Now I'm working with TWO autistic children and yet expecting them to deal with random spaces. I have a routine with Tiger because we started this school year together. But the times and timing of our sessions have changed three times now and I've had to find us a space every change.

And Mars... we trek around the school looking for space.
No t a great start for a one-to-one.

For the first time in my life I long for summer.
Even if it's raining we can sit in the Gazebo.

Grrrrr for working hours that don't take account of timetables.

DanaC 04-20-2012 04:05 AM

Watched a fascinating documentary last night and thought of you and your fobs.

Louis Theroux: Extreme Love - Autism

Quote:

In America nearly one child in a hundred is diagnosed with an autism spectrum disorder - a brain disorder characterised by an inability to socialise and communicate.


Louis travels to DLC Warren in New Jersey, one of the most innovative autism schools of its kind, to find out how specialised intervention can help both the children and the families who care for them.

He meets Joey, whose mother Carol is finding it increasingly hard to cope with some of the more challenging aspects of his disorder. In between the ever more explosive tantrums, Louis discovers a cheeky and charming 13-year-old, but there are tough decisions ahead about his future in the family home.

Nicky is 19. After making good progress at DLC Warren he is about to leave, but the prospect of change leads to increasing anxiety and erratic behaviour. Surrounded by a loving family who say they wouldn't have him any other way, he shows Louis his novel Dragonula and invites him to share his first day at his new school.

There were a few other kids. Each very different (obviously!) and facing different challenges and prospects.

What was really lovely was how well Louis seemed to connect with some of the kids. There was real warmth.

But what was really interesting was seeing what the reality is for many parents of children on the autistic spectrum. They didn't really look much at dietary stuff or the GI problems. There's only so much you can do in a single docu. But they did show a lot of the practical issues facing some autistic children and their families. Heartbreaking in places. But also quite tender.

I did find myself sitting there thinking....nooooo don't give them that cupcake packet mix to make in their lifeskills classes... read Clod's blog damnit!

But yeah. Really interesting. Set me to wondering how your littleuns are getting on?

Clodfobble 04-20-2012 10:17 AM

Yeah, it's one of the really frustrating things, when you hear people talk about how severe autism is "just another way of seeing the world," or a gift that should be celebrated... people usually only say this when they have no experience with how incredibly, incredibly difficult autistic behaviors can be.

Nobody ever says schizophrenia is just another way of seeing the world. Yet many autistic people can physically injure others just as well as a schizophrenic can. Plus they may shit their pants while they're doing it.

Sorry, got a little maudlin there for a moment. It's been at the forefront of my mind recently because it's ARD/IEP season, which is to say, the meetings at the end of the school year to talk about each special ed student's progress and goals for the next year. This is the time when parents in denial have the school throw the facts in their face, and parents who aren't in denial get told that, sorry, the school doesn't have any money to help them anyway.

The little boy I babysit after therapy has made zero progress in the last year, has actually gone backwards in my personal opinion, but his mother was, apparently, unprepared to hear this from the school professionals. They "broke the news" that they didn't see him in any sort of inclusion scenario for Kindergarten, that he clearly belonged in a full-time special ed classroom, which is obvious to anyone who spends 2 minutes with him. But apparently she thought that wiping poop on his face and being mostly non-communicative is close to normal for a 4-year-old. Then she sadly admitted to me that she does think maybe she's seen Minifobette surpass her son in skills this last year (Oh? You think? My daughter who has normal conversations and real friends and hasn't had diarrhea in over a year?) And when she pushed me hard for details about our ARD, I had to admit that, yes, they have every expectation that Minifobette will be fully mainstreamed with no aide.... and then she changed the subject and excitedly told me about this "really fantastic" new TV show called "Touch" which presents the main character's autism as a genuinely supernatural power and implies that he is here to carry out a spiritual mission. Right... let me know when the TV show glorifying schizoprenia comes on.




ANYWAY. Yes, Minifobette's kicking it. :) Far better than her brother was at this age. Unrelated, but still adorable, her hair suddenly decided to turn curly, and over the last 6 months has gone from stick-straight to giant ringlets. This is also the child who was born with dark red hair that later turned blonde, so we have no clue what's going on with her follicles. She's been able to taper off some of her meds, but some remain persistently necessary, like the high doses of vitamin K, B vitamins, and magnesium. She's still on Pentasa and Oxytocin. She also has struggled with strep a few times, and we're dreading the possibility that the Zithromax will stop working, like it did with her brother, and she'll eventually have to have her tonsils out. But that's for the future.

Minifob is back to a good middle ground after a rough winter. The low dose immune suppressor enabled him to get off the steroids without regressing, which was the goal, and now the goal is to hopefully get him off the immune suppressor. It became clear that while the supplemental formula he was on was great for his digestion, the artifical sugars were affecting him neurologically, and given the choice I would clearly rather have his brain and work on his gut instead of the other way around. So we cut out the formula cold turkey and tightened down his diet to the same strictness as his sister. This caused significant digestive upset for a few weeks, but we got back to baseline and then beyond, so it does appear that it was the right choice, a necessary two steps back in order to take three steps forward. Overall this means the delta change from the beginning of the school year isn't terribly impressive from a behavior and speech standpoint, but he has at least been steadily gaining in academics the whole time.

The school ran a full barrage of third-party evaluations on him to see how things stand (they were required by a complicated mandate to do so, otherwise they wouldn't bother,) and the results were interesting. In math, he has trouble with low-level arithmetic but is way above grade level on abstract concepts like time, measurement, spatial relations. Reading and comprehension are above grade level as well, except he has absolutely no understanding of passive voice. As far as he's concerned, "The baby was kissed by Grandma" is equal to "The baby kissed Grandma," and he thinks we're all insane trying to explain the difference to him. He still struggles with speech because, as the evaluator wrote, "the oral motor faculties aren't able to perform at the speed at which his thought processes are moving."

Long story short, Minifob's disease still requires constant maintenance at this point, but we're getting there. Minifobette is a little better off, moving forward at a more rapid and steady pace. They're both expected to be scoped again in roughly May of 2013, two years after the first scope, to examine progress. So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines. :)

DanaC 04-20-2012 10:35 AM

Lookin' forward to that :p

And also looking forward to when both your little ones 'were never really autistic' *smiles*

Blueflare 04-20-2012 01:38 PM

Damn, I wish my parents had been this pro-active when I was a kid, maybe I wouldn't be such a screw-up now. I don't blame them or anything, I'm just saying. I guess the 90s was a different time, recent as it is.
Sorry, don't want to be a downer here... I guess I just wanted to congratulate everyone who's putting crazy amounts of effort into getting the best for their kids on here. Best of luck to you all.

BigV 04-20-2012 01:59 PM

Overall, I am so happy to hear this good report. A couple excerpts and comments.
Quote:

Originally Posted by Clodfobble (Post 807494)
snip--

Sorry, got a little maudlin there for a moment. It's been at the forefront of my mind recently because it's ARD/IEP season, which is to say, the meetings at the end of the school year to talk about each special ed student's progress and goals for the next year. This is the time when parents in denial have the school throw the facts in their face, and parents who aren't in denial get told that, sorry, the school doesn't have any money to help them anyway.

Yes, that season again. Maybe I just don't get out and mingle with the other parents like you do, but I never really got to see the reactions of the other parents, or I just didn't notice them. Although, upon reflection, I can see (now) a lot of what you describe in Tink's actions when it comes to parent-teacher conferences/interactions/meetings. Some people just don't take adverse news well.


Quote:

Originally Posted by Clodfobble (Post 807494)
The little boy I babysit after therapy ...snip...Then she sadly admitted to me that she does think maybe she's seen Minifobette surpass her son in skills this last year (Oh? You think? My daughter who has normal conversations and real friends and hasn't had diarrhea in over a year?) And when she pushed me hard for details about our ARD,

nosy? or just comparing notes? This woman is a frustrating and annoying puzzle to me. It's like she recognizes the magnitude of her problem and the corresponding responsibility she has and upon realizing it, runs screaming (back) into unreality. A tv show? orly?

Quote:

Originally Posted by Clodfobble (Post 807494)
I had to admit that, yes, they have every expectation that Minifobette will be fully mainstreamed with no aide.... and then she changed the subject and excitedly told me about this "really fantastic" new TV show called "Touch" which presents the main character's autism as a genuinely supernatural power and implies that he is here to carry out a spiritual mission. Right... let me know when the TV show glorifying schizoprenia comes on.
***start***



***end***
ANYWAY. Yes, Minifobette's kicking it. :)

I love this (unboldable) part of your response to her. What a maroon, and what restraint on your part. I wonder what happened in that blank... eyerolling? big sigh? counting to ten? a hundred? Regardless--High five!


Quote:

Originally Posted by Clodfobble (Post 807494)
It became clear that while the supplemental formula he was on was great for his digestion, the artifical sugars were affecting him neurologically, and given the choice I would clearly rather have his brain and work on his gut instead of the other way around.

good choice, I would make the same choice, I'm glad together you were able to take your "five steps".


Quote:

Originally Posted by Clodfobble (Post 807494)
The school ran a full barrage of third-party evaluations on him to see how things stand (they were required by a complicated mandate to do so, otherwise they wouldn't bother,) and the results were interesting.

been there, done that, keep up the good work sister.

Quote:

Originally Posted by Clodfobble (Post 807494)
He still struggles with speech because, as the evaluator wrote, "the oral motor faculties aren't able to perform at the speed at which his thought processes are moving."

I totally know how he feels, this happens to me all the time.

Quote:

Originally Posted by Clodfobble (Post 807494)
So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines. :)

Pics or it didn't happen. Actually, pics of giant ringlets would be even more welcome, if you're amenable. :)

Sundae 04-21-2012 09:53 AM

Glad to hear your update Clod, especially the progress Fobette is making.

I can't write any updates about Tiger at the moment.
Suffice to say I do write them and delete them.
All is not rosy in my LSA garden. There is someone that needs a kick in the cunt.

Clodfobble 04-21-2012 10:18 AM

Quote:

Originally Posted by BigV
Yes, that season again. Maybe I just don't get out and mingle with the other parents like you do, but I never really got to see the reactions of the other parents, or I just didn't notice them. Although, upon reflection, I can see (now) a lot of what you describe in Tink's actions when it comes to parent-teacher conferences/interactions/meetings. Some people just don't take adverse news well.

Yeah, it's the mingling that does it. I really hate this phrase, but I'm "active in the community." Messageboards, a couple groups that meet in person, and aside from the carpooling I see all the other parents at our particular therapy clinic every day before and after. And because autism often prevents parents from leaving the house with their kids at all, it's very isolating, and so we all cling to each other and pretty much talk about nothing but autism crap all the time. Which is good, but not good, too.

I actually came to the decision awhile back that I simply won't attend ARDs anymore. It is deeply unhealthy for me. Mr. Clod has no problem with confrontation, and no problem being the passive-aggressive negotiator. I can't do that. I fumble when put on the spot, I get emotional, and then I spend the next 6-9 months fuming about all the things I should have said to those people. The kicker was the ARD for Minifobette that was, unfortunately, scheduled for the exact day last year that my kids were doing their cleanout for their colonoscopies the next day. So I was already frazzled that morning, having to deny my kids anything but clear liquids for a day, and then the advocate that we'd hired to fight this particular battle for us screwed up and had to only be present over the phone, which is like not being there at all. They had brought in an upper-level biatch to stonewall me, who is known for deliberately saying infuriating things like, "As a parent, I completely understand how you feel," because she knows damn well that if she can get you to scream at her (as I know for a fact that three friends of mine have done) that her kids aren't disabled and she doesn't know a damn thing, that she's gained the upper ground in the negotiations. Anyway, first I sobbed, and then I started inappropriately sharing the difficulties my daughter was having at the time and why no one in that room could even understand, and ultimately I completely checked out and gave everyone a dead-eyed stare for the rest of the proceedings. Her teacher hugged me afterwards and apologized so many times, because of course she was powerless too and had to just sit through it like the rest of the people who actually want to help these kids. And I went home and told Mr. Clod that he's doing them from now on, period. I will not go. And he's really good at being a quiet, unperturbable bastard, so it works out for everyone. :)

footfootfoot 04-21-2012 02:52 PM

Do you think minifobette is doing better because she started the regimen earlier than her brother?

xoxoxoBruce 04-21-2012 04:51 PM

OMG, added to Clodfobble's accomplishments... she's Frieda's mother. :lol:

The mother of the boy doing badly, is she the one you talked about that was in denial saying he'll grow out of it?

Clodfobble 04-23-2012 11:42 AM

Quote:

Originally Posted by footfootfoot
Do you think minifobette is doing better because she started the regimen earlier than her brother?

Yes. She was actually on a path to be much more severe than he was. Generally speaking, the later the regression happens, the worse they are. But she was gluten-free and dairy-free even before her big regression hit at 12 months (compared to Minifob, who was showing significant symptoms by 3 months--significant in retrospect of course.) She lost everything, all awareness, speech, and eye contact; whereas he always kept pretty good levels of all of those.

Quote:

Originally Posted by xoxoxoBruce
The mother of the boy doing badly, is she the one you talked about that was in denial saying he'll grow out of it?

He's the one who poops on my carpet, and his mom vacillates between "he's very close to normal" and "he's completely different and unique and that's a good thing."

DanaC 04-23-2012 11:45 AM

Quote:

Originally Posted by Clodfobble (Post 808069)



He's the one who poops on my carpet, and his mom vacillates between "he's very close to normal" and "he's completely different and unique and that's a good thing."

Yeah...maybe, like he's just an Old Soul ;p

Clodfobble 08-17-2012 11:27 PM

New newness on Minifobette's front... We've suspected since she was 18 months old that she has vision problems. I was in glasses by the age of three, so the genetics were ripe for it. They have neato machines now that can just scan the topography of your eye and tell you your prescription, not like in my day where you couldn't even test a kid until they reliably knew the alphabet. But she's always passed the basic vision tests just fine, and her scanned prescription was a little nearsighted, but not enough to justify glasses for a toddler. Still, she squints constantly. But they always told us to come back when she's older and more responsive to testing.

Well, she is now. And after a full barrage of tests by the developmental optometrist, the results are that her focus is still basically fine--but her eyes have a tendency to wander independently instead of working in tandem, and she is suffering from significant double vision at most distances. The doctor showed me how she could cover one eye, and after a moment pull it away, and her covered eye would have drifted off to the side and have to return back to the middle to see whatever the other eye was focused on.

At its root, this is a muscle tone problem, which is a universal thing with her. But I've been told by the optometrist as well as other parents that "vision therapy," which is to say exercises similar to what they do to correct lazy eye, will help dramatically, and will likely improve her eye contact and general demeanor as well, since constant double vision is assumed to be causing headaches and a certain amount of daily frustration.

So that's one more recurring doctor's appointment to add to the schedule for the foreseeable future, but at least we've found another problem that has a definitive solution...

Sundae 08-18-2012 03:33 AM

Quote:

Originally Posted by Clodfobble (Post 824950)
So that's one more recurring doctor's appointment to add to the schedule for the foreseeable future, but at least we've found another problem that has a definitive solution...

One problem at a time. Good for you and Fobbette.

BigV 08-18-2012 07:26 PM

tags:

autism, food intolerance, and now eye push ups.

poor kid.

xoxoxoBruce 08-19-2012 09:29 AM

But when she becomes the first Miss America with three PhDs, it will be worth it.

Clodfobble 10-05-2012 04:31 PM

Most terrifying hurdle for Minifobette yet.

She's started engaging in self-injury. It began with one small cut on her face about 6 months ago. She kept picking at it, and it took 2-3 months to heal properly (there is still a mark from it even now.) But we thought it was an obsessive thing, not a pain thing. Then awhile back she got a handful of mosquito bites while we were outside on a humid day, and she picked at those until they bled, then picked the scabs off the next day, and is still picking at those same scabs even now. Recently she's added another couple of bug bites to her collection, and also two small scrapes on the tops of her feet from tripping at the pool.

She picks at them all constantly, and when we've tried to stop her she gets furious and screams "I need to hurt!" And even if we force the matter and stay on top of her every minute of the day, when we get her up in the morning her sheets are dotted all over with blood. She pulls off bandages, rolls up long sleeves, and hides where we can't see her in order to tear all her scabs off.

I don't want to put a fucking 4-year-old on anti-anxiety meds. I also don't want to see my daughter's face streaked with blood every day. And I know that the process is addictive: the more she substitutes physical pain for emotional stress, the more she'll need it. So there's something to be said for nipping it in the bud now. But Christ.

orthodoc 10-05-2012 05:12 PM

My second son (autism spectrum/Asperger's, early onset bipolar, PDDNOS, the diagnoses changed with doctors and time) went through that process - you're right, it's obsessive behavior and very hard to redirect. It may need some temporary meds to help break the cycle at night, but hopefully you can work out a way of redirecting in the daytime that will help ...?

These things are tough. Sorry it's going on.

Griff 10-05-2012 06:21 PM

Quote:

Originally Posted by Clodfobble (Post 833159)
But Christ.

Rough deal Clod, sorry.

glatt 10-05-2012 06:24 PM

Our daughter in 8th grade has been having trouble with picking scabs, and although she hasn't given any signs that she likes the pain. It's just some sort of compulsion. She couldn't stop herself from picking, and felt self concious with a dozen bandaids over all the bug bites.

We ended up getting liquid bandaids and applying it every day or a couple times a day. She would still pick at the liquid bandage, but the scab underneath would have time to heal. The liquid bandage was basically a sacrificial layer. I'd suggest trying the liquid bandages. It's kind of a long shot if she really is looking for pain, but it might work.

Clodfobble 10-05-2012 06:47 PM

Thanks. I do have some of that stuff, I'll try it tonight.

BigV 10-05-2012 08:24 PM

Clodfobble:

heard this recently, especially the part about skin picking.

http://www.npr.org/blogs/health/2012...st-a-bad-habit
Quote:

Mathews specializes in pathological grooming — a group of behaviors that includes nail biting, hair pulling, called trichotillomania, and skin picking, known as dermatillomania.

"They are behaviors that stem from normal grooming — the kind of thing that most animals do and is evolutionarily adaptive, right?" says Mathews.

But in pathological groomers, those behaviors go haywire. Instead of being triggered by, say, a hangnail, the pathological nail biter is triggered by driving, reading or feeling stressed out. "After a while, the behavior becomes untriggered," says Mathews. "It becomes just an automatic behavior that has no relationship to external stimuli at all."

Until recently, the DSM treated pathological grooming a bit like an afterthought and put it in a catch-all category called "not otherwise classified." But the new DSM proposes to lump together pathological groomers and those with mental disorders like OCD. That includes people who wash their hands compulsively or have to line up their shoes a certain way.

These behaviors have a lot in common. In both cases, it's taking a behavior that's normal and healthy and putting it into overdrive, doing it to the point of being excessive. But in at least one way, OCD and pathological grooming are also very different.

"In OCD, the compulsion is really unwanted," says Mathews. People with OCD don't want to be washing their hands or checking the stove over and over again. There is no fun in it. There's fear — fear that if they don't do something, something else that's very bad will happen to them.

But from her pathological grooming patients, Mathews hears a very different story: They enjoy it. "It's rewarding. It feels good. When you get the right nail, it feels good. It's kind of a funny sense of reward, but it's a reward," she says.

Lamplighter 10-09-2012 09:01 AM

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Today's news...

Spexxvet 10-09-2012 10:52 AM

That's sad, Clod. When I was young, I scratched mosquito bites til they bled, then picked the scabs, because it relieved the itch. Not only do bites itch, but healing itches. I wonder if she was not expressing herself accurately, and meant that she wants to stop the itching.

glatt 10-09-2012 11:04 AM

I've read good things about the Therapik, and am very tempted to buy one. It supposedly takes the itching away from mosquito bites by breaking down the protein with its heated tip. I understand the sooner you use it after being bitten the more effective it is.

Reminds me of someone here talking about running very hot water over poison ivy rash to make it feel better.

limey 10-09-2012 11:07 AM

Good luck, Clod. I hope you find the right solution.

Clodfobble 10-09-2012 11:58 AM

Quote:

Originally Posted by Spexxvet
When I was young, I scratched mosquito bites til they bled, then picked the scabs, because it relieved the itch. Not only do bites itch, but healing itches. I wonder if she was not expressing herself accurately, and meant that she wants to stop the itching.

I picked at my scabs too, though only from injuries that scabbed over themselves, I didn't claw at mosquito bites until there was a scab. The problem is that after the scab is off, she keeps digging. Most of the wounds are getting bigger over time, not smaller.

We did try the liquid bandage stuff. It helped in the sense that it prevented her from picking at it as much as she wanted to, but it's not feasible in the long-term because she absolutely hated having it put on, and it takes a few minutes to dry. It was a two-person job to pin all four limbs and blow on the various sites until they all dried sufficiently, which means it could only be applied once a day at best. On the upside, I have gotten her to stop picking a few times by threatening to "paint her owies" again.

At least she has figured out that she can get away with more picking on her arms and legs, if she'll just leave the one on her face alone. We also have some small hope in the fact that it's finally getting cold here, and when she has jeans and sneakers on she can't get to half her scabs all day long. She can push her long sleeves up, but if they have snug cuffs she can't get them high enough to get to the ones on her upper arms (and she hasn't figured out she could reach down through the neckhole yet.) I can live with the forearms, if she'll just let her face and her feet heal.

glatt 10-09-2012 12:54 PM

Sorry the liquid bandage didn't work well. At least it gave you threat material. :p:

I think the key might be to avoid having a site she is tempted to pick or scratch in the first place. I'm hoping next year that if I get the Therapik I mentioned, it helps stop the cycle from starting again with my daughter. Stop those bug bites from itching in the first place and there might not be scratching.

We started the liquid bandage thing in early August, and the wounds healed for the most part by the first day of school in early September, and now, a month later, she still has multiple scars where she had dug deep holes into her skin from the picking. They look pretty bad. I hope they fade with age. She's only 13 and hopefully her skin can still regenerate a bit. She doesn't care much about her looks yet, but I know that will probably change pretty soon.

DanaC 10-25-2012 06:10 AM

That skinpicking thing is something I still do. Have done since I was around 3. It is an absolute compulsion and probably a large part of the reason my eczema infects so often. I have mulled over seeking help with it for years, but it is coupled with a slight revulsion or expectation of revulsion in others, so never have. Just something I try to not be seen doing.

The worst possible thing to do is treat it like aberrant behaviour and draw attention to it. Difficult, given you also want to try and avert the behaviour. My parents mishandled it, not that I'd ever tell them that :P Their response was to pointedly draw my attention to how it looked when I did it and tell me off in an attempt to stop me doing it. Instead it just sent it into a secret behaviour and probably escalated it considerably.

Bless them they were doing their best.


That's not why I came in here though :

Saw this on the BBC site and thought of you guys. Brilliant idea.

http://www.bbc.co.uk/blogs/ouch/2012...making_th.html

Quote:

The foyer of the Cottesloe at the National Theatre is buzzing when I arrive, as groups of disabled and non-disabled people bustle about, organising tickets and purchasing drinks. We are all here to see a dramatized version of Mark Haddon's highly successful 2003 book, The Curious Incident of the Dog in the Night-time.
The sell-out play tells the story of 15 year old Christopher Boone who has Asperger's syndrome, an autistic spectrum disorder. Those with the condition are typically high functioning, can have social difficulties and are often very sensitive to light and sounds.

The author of the original text did not have Asperger's and neither do any of the actors, but today, many in the audience have autism or a learning disability of some kind. I am at what's known as a "relaxed performance", which is summarised on the National Theatre's own website in a very friendly and inviting manner: "The atmosphere in the auditorium will be relaxed to provide a more supportive environment - a bit like the quiet carriage on the train ... but the opposite! Audience members will be free to come and go as they please throughout the performance and make noise if they want to."

Relaxed performances at other theatres have had a chill out room where people who need quiet time can go before, during or after the show. Some even relay the play on a big screen, so that if someone needs to leave the auditorium they can still follow the story. Today, the Cottesloe foyer has been designated as a quiet space.
Quote:

To prepare audience members with autism who find surprises uncomfortable, a letter was sent out in the weeks leading up to the performance. It reassuringly explains precisely what we can expect from the day, including at what time we can enter the auditorium, when the show will start, how long it will be and the length of the interval.
Quote:

all theatre-goers will have received "visual stories" or storyboards, a couple of weeks before this relaxed performance, so that they already know the narrative and feel prepared for each bit as it comes along.

Clodfobble 10-25-2012 07:28 AM

In Austin there is a movie theatre that has monthly "Sensory Friendly Films" events, showing whatever kid movie is out at the time. They keep the lights up, the volume down, let everyone bring their special diet food into the theatre, and don't care if anyone has a meltdown. It's a pretty neat thing.

Re: the skin thing, our current half-solution when we see her picking is to get her attention, start picking our own skin, and let her tell us "No, no!" She thinks reversals of authority like this are hysterical in general, and it's usually enough to temporarily distract her, if only for a few minutes.

DanaC 10-25-2012 07:31 AM

Genius.

Griff 10-25-2012 08:15 PM

That is brilliant. I have 2 pickers in class this year. I never saw it before.

ZenGum 10-25-2012 09:07 PM

1 Attachment(s)
Quote:

Originally Posted by Griff (Post 835787)
That is brilliant. I have 2 pickers in class this year. I never saw it before.


These two?

Attachment 41370

BigV 10-25-2012 10:17 PM

No, them are grinners.

ZenGum 10-25-2012 10:23 PM

1 Attachment(s)
Why can't they be both?

Attachment 41371


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