You just get these kids

[nightengalesknd]

A couple of weeks ago I was down in adolescent clinic waiting for the patients to not show up (apparently teenagers don’t come to the doctor when the weather is nice) when my favorite attending walked over from the resident’s clinic in the next hall. They had a six year old boy over there with autism who had come back to clinic with continued aggressive behavior. He was on a medication at the maximum dose anyone in primary care clinic felt comfortable prescribing and both the senior resident who had seen him and the attending were at a loss. Would I be able to come over and talk to his mother and see if I could do anything?

I was skeptical. He had already been diagnosed by the experts. People who had many years experience and training on me. What exactly did she want me to do?

“I don’t know,” she said, “but I’ve seen you talk to parents of kids with autism before. You just GET these kids.”

Well OK, it’s comments like these that make her my favorite attending. And the thing is, lack of training and credentials aside, she’s right. On some level, probably not enough but certainly more than most physicians, I do just *get* kids with autism.

My formal training in autism is pretty scanty actually. Some of the kids at Perkins School for the Blind behaved in ways that seemed to me, then and now, as characteristic of kids on the autistic spectrum. I was there for five weeks and given no official insight beyond my own perceptions. Some of the kids at the Variety Club Camp had “high functioning autism.” Again I was given little formal training or officially told which campers these were. My years of teaching biology was with teens with severe ADHD, although one did have an Aspergers diagnosis and in my (again, untrained) opinion, a few others might as well have. And then there were my two precious months of developmental pediatrics, one in medical school with a developmental pediatrician and one here in residency with a developmental psychologist. Both months I saw quite a few autistic children. Total didactic hours? Perhaps three.

So I’m pretty much self-taught. From what I’ve cobbled together from the kids I’ve known over the years. And of course from what I’ve read. I’ve read books written by parents of children with autism. I’ve read books and blogs written by adults with autism. I’ve read books giving instructions on various ways to treat autism. I’ve read the ABA manual and I’ve read some Greenspan, which are about as diametrically opposed theories out there, although I feel they both have their merits.

My interest in autism, I think it’s important to point out, is not as old as my interest in physical disability. I was asking questions about sign language and deafness from watching Sesame Street while still a preschooler myself and was reading children’s biographies of Helen Keller, Thomas Hopkins Galludet and Franklin Delano Roosevelt around age six. FDR was in Annie, after all, which I saw on Broadway at about that age. And my read of Dr. Spock, cover to cover but with an especial focus on the chapter on disability, occurred just before I turned eight. That’s just about twenty-four years ago this spring.

I was closer to ten when I first read about autism. The book was called “Please Don’t Say Hello,” and featured a child whose new neighbor was autistic. The boy did jigsaw puzzles upside-down, I remember vividly. I read it over and over. There were black and white photos and I think it might have been based on real kids. I can’t remember what else I had encountered about autism, besides my mother’s pitying comment about a distant cousin who had it, before I met the Boston Children’s Hospital Child Health Encyclopedia. Dad’s copy is autographed 1988, so I imagine I first picked it up then or a year later. 721 pages, all of which became good friends from our first meeting around the age of 12 to the last time I leafed through the pages, many then quaintly outdated, a year or so before I entered medical school.

Over the years my self-diagnoses from this book included allergic conjunctivitis, asthma and cerebral palsy. I hauled it out in college when I had cough and fever, looking at bronchitis and pneumonia. I ran for it at school when we accepted a kid with celiac disease. My headmaster had never heard of it, and all I recalled was the chapter in the Health Encyclopedia. And there, in between “asthma” and “back pain,” is nestled “autism.”

The copyright is 1987, and the prevalence listed as 2 per 10,000.

Last year I saw an estimated prevalence of 1 in 154. Sometimes I feel like saying “autism I knew you when. . . “ which is a bit absurd for someone of my age, even if I did start young.

So I got my hands on this book and voraciously read the description, which describes five areas of difficulty. “Relating to other people” “understanding and communicating with language” “processing and reacting to sensory stimuli” “adjusting to or initiating changes in environment or routine,” and “maintaining an even rate of development.” And I remember telling my mother and other adults about my reading, and my exact comment was “except for the language problems, this sounds just like me!”

Well you can imagine how that went over. Like a ton of bricks, really. The general idea was that if a person was able to read about autism and put together, in language, such an introspectful thought, of course that person could not be autistic. Besides, there was no such thing as autism except for the language problems.

Did I mention this was 1988? The Boston Children’s Hospital Child Health Encyclopedia had never heard of Asperger’s Syndrome. I don’t know as the psychologist and neuropsychiatrist there, several of whom evaluated me at about that time, had heard of Aspergers syndrome. The DSM III, in use at the time, hadn’t heard of Aspergers syndrome either. One wonders who, besides Hans Asperger, had heard of this syndrome where children have advanced language and cognitive skills in a setting of severe or profound social deficits. Aspergers reached the DSM IV in 1994, the year I entered Bryn Mawr, and did not trickle down to the lay press for another half-decade or so. By the time I met up with Aspergers syndrome, I had gone to college, volunteered at Perkins, worked at the Variety Club Camp, met all these kids who struck me as autistic, started working with kids with severe ADHD some of whom also struck me as somewhat autistic, and was applying to medical school.

And so around age 22, I read through the diagnostic criteria of Aspergers and once again my first thought was “this sounds just like me!” Or at least enough of the criteria sound just like me to raise suspicion.

Marked impairment in nonverbal behavior I make eye contact one-on-one but get lost in a larger group. This was noted in my evaluation at age 9 and is present today. I can do a kid and an adult in a room but put a second adult in there and I’m never quite sure who to look at. I can read tone of voice but facial expression much less reliably.

Failure to develop peer relationships appropriate to developmental level. The only time I have made friends well was at Bryn Mawr. Growing up I had no friends at all from ages 12-16 and there were other times when I had two or three friends while every other person my age spoke to me only to ridicule. Got along OK, not spectacularly while teaching, and we all know what a social fiasco medical school was for me. Given a choice between my classmates and a tuning fork I preferred to communicate with the tuning fork.

encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus See the rest of this entry for but one example. Even when I have mainstream interests I don’t seem to have them normally. At work I join a conversation about ER, House or Grey’s Anatomy, only to find everyone else seems to care about who is sleeping with whom, and how hot the actors are. I’ve analyzed the medical improbabilities or memorized whole patient scenarios and hunks of dialogue.

apparently inflexible adherence to specific, nonfunctional routines or rituals Well I happen to think my routines are very functional. . . seriously I think the way I react to unexpected schedule changes counts in here. I can’t even handle an unexpected day off.

stereotyped and repetitive motor mannerisms I rock. If I don’t wear my hair up I play with it constantly. And yes, occasionally I spin objects. . . I don’t know as I do any of these things to an abnormal degree taken in a vacuum, but this is not a vacuum we’re talking about here.

persistent preoccupation with parts of objects Not parts of objects, per se, but the joke is not only do I not see the forest for the trees, I don’t even see the trees. Or the leaves. I get bogged down with the light and dark reactions of the chlorophyll embedded in the membrane of the chloroplasts. I’d excuse it by saying I’m a microbiologist, but I think this is one of the reasons I AM a microbiologist.

The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning Well there’s the rub, isn’t it. Do I have clinically significant impairment? Sort of borderline, I think.

There’s other stuff too that isn’t in the DSM but is characteristic of the spectrum, like the way I toe-walk that is only partly explained by my CP pattern. I can’t tolerate pants or sneakers. As a kid, I preferred the feel of chapped lips and sunburn to the feel of chap stick and sunscreen. And then there’s my visual learning deficits, where I only learn visual tasks by talking about them in full sentences in my head. Non-verbal learning disability and Aspergers have a ton of overlap.

I don’t know if I have autism or Aspergers. I’m actually not sure I care. As I’ve often said, the two reasons to seek a diagnosis are for changing management (medications, therapies, school or work accommodations) or for peace of mind. At this point, knowing wouldn’t change anything except the size of my pocketbook and I already have the peace of mind. I’ve had the peace of mind for two decades, in some ways, after all.

I don’t know if it’s my own traits that draw me towards working with kids with autism, or just my prolonged interest or something else I can’t describe. And I don’t pretend to understand every person with autism. That would be just as foolish as claiming I understood every person without autism, after all. And I’m not claiming that my own tendencies give me a ton of extra insight into what a kid with autism might be thinking or feeling.

But I do think it gives me a little extra insight into the idea that people with autism perceive the world in a way that makes internal sense, even if it doesn’t make external sense. And then people react to their perceptions. Actually I think everyone perceives the world in an internally sensical way and then reacts accordingly, it’s just that for non-autistic people (sometimes called neurotypical) there’s more of a consensus on what makes external sense and a more standard repertoire of acceptable behavioral reactions.

The other extra insight I think I have is that I place a lower premium on standard behavioral reactions than many do. Safety is non-negotiable but otherwise, well, if a kid is happy rocking, why shouldn’t a kid be allowed to rock at least some of the time? If a kid finds chewing on things calming or fun, shouldn’t the emphasis be on finding safe things to chew on, not in eliminating the need to chew? Many professionals and parents work vehemently to make children with autism, especially those with Aspergers or who have relatively adept verbal and cognitive skills, appear more like “normal children.” Unless fitting in is a priority for the child in front of me, I just don’t place that high a premium on the façade of normalcy.

So when I see a kid with autism (as opposed to considering the diagnosis of autism) I try to figure out what makes them tick. What they like, what they dislike. What seems calming and what seems disturbing. Getting the kids is not the hard part. Then I look at the parents, often exhausted, often frustrated and I try to figure out what they want and need. That’s the harder part.

Sometimes I can make suggestions about school placement or toilet training strategies. Since I try to stay on top of current “alternative” strategies, even now I can address the gluten-free diet (no evidence of benefit but anecdotal success and low risk) and chelation (no evidence of benefit and evidence of risk of harm) in a way that most general pediatricians cannot. Sometimes I try to serve as a sort of translator from autistic to neurotypicese. Sometimes it is difficult for me to remember that I’m assumed to identify with the neurotypicals - the non-autistics - in the room.

I spent about half an hour with that little boy and his mother, mostly watching him and talking with her, listening to her concern that he hit her and his sibling for no reason. I made no attempt to examine him. The senior resident had warned me the little boy might try to raid my pockets, but he pretty much ignored me unless I interacted with him directly. He did not communicate with any words or specific signs or gestures that I understood although his mother said he had several words he used when he wanted to. He wandered around the room, only interested in any one thing for half a minute or so. I could quickly see how wearying this could be for his family, even without aggression thrown in. He bashed into the walls, and his mother described similar behavior at home. Greenspan popped into my head as I tried to explain sensory seeking behavior, tried to explain he seemed to like the pressure and perhaps would enjoy other, safer activities that gave him similar pressure input. Urged occupational therapy with a sensory integration component. I gave him a tongue depressor to see what he would do with it, and he started chewing on it. His mother said that he put everything into his mouth at home. I suggested his school occupational therapist might be able to send home some of those safe chew beads for him to chew on during the day.

He liked to turn on the water tap, and each time he did his mother rushed over to shut it off. Once we let him leave the taps on and he played happily with the water stream for at least five minutes. I couldn’t explain why, except that there must be something he enjoyed or found calming or otherwise interesting that was apparent to him even if it wasn’t apparent to us. I suggested to his mother that perhaps if he found things like that calming, it was worth letting him pursue at times. The trashcan lid banged and he moved away quickly. “That’s the look he gets on his face,” his mother said, “right before he hits me.” He also hated music. My theory was that at least some of his aggression was in response to sounds that didn’t bother anyone else. I’m not sure this theory got anywhere towards cutting down on the aggression, but I was hoping it would at least give his mother something to look out for.

I’m not sure I got through to her. I’m not sure I got through to either of them. And I later learned my recommendations for therapies and for help in the home have been tried in the past to little avail. I hope I helped even a little. I know I was able to offer more than that clinic visit would have otherwise and I felt pretty good about that. But I’ll tell you, I can’t wait until I have the actual training and experience to help us out, so that years of outside reading, identification and instinct can supplement rather than substitute for structured knowledge. Getting the kids is not enough. But it’s a necessary first step.

Comments

[aries11.livejournal.com]

Yeah, I'm sure "getting" the kids isn't enough, but I'm sure it helps the children, the parents and the medical staff to know you have a certain kinship to those kids from all the research you've done and even thinking you might have similar problems.

Speaking of someone you might "get", I have another LJ friend that you might be interested in talking to. You mentioned a while back how much you enjoy meeting kids who have CP and/or are diabetic, but it's kind of rare for you to meet someone who's both. Well, I know someone who is! Her name is Teresa, but her LJ name is concertina419. I think she might actually be Type II diabetic because when I told her I was, she made a point to tell me she wasn't on insulin. Still, you might enjoy talking to her. :)

[nightengalesknd.livejournal.com]

Oh neat I'll have to introduce myself!

[windsornot.livejournal.com]

I was very interested in your take regarding Asperger's, as it's something that we've been exploring for the past year, debating whether Drew has it or not. It's really borderline. Many of those descriptions that you gave apply, but kind of don't either. We just visited Drew's dev ped last week, and we talked about where there's been a lot of improvement, and where there hasn't been or little improvement. In my amateur opinion, and my experience with myself and Drew, is it possible that you display a lot of Asperger's symptoms but aren't Asperger's? For example, I know the definitions and diagnoses for ADD/ADHD have change DRASTICALLY since I was a kid (and I'm a lot older than you). Looking back with current criteria, there's no doubt that I had-- and still have to a much lesser extent-- ADHD and sensory issues. Part of ADHD also has to do with social relationships, and when I saw that, and saw how there are some ADHD kids who are "late bloomers", it definitely clicked. Like you, I really did make my closest friendships until I hit my college years. The dev ped's comments about Drew, who is unmedicated because his father refuses to do it, is that we needed to keep up with the pragmatic and social skills, but he was really REALLY needing more sensory input and therapy, and his OT is not addressing it at ALL. Of course, I've been saying this all along, and the fact that he's doing better despite that is a testament to him. So, while I think the child you described is certainly autistic, I think you are right to pick apart some of the symptoms. For Drew last year, if he had his "job" to do-- when he'd be having a meltdown, he was sent to the OT room, put on a timer for 5 minutes, and just jumped on a mini-trampoline or bounced on a big exercise ball, and when he was done, he got that "sensory buzz" as I like to call it, so he could focus and concentrate better, and it worked just about every time. And yes, there are times he likes loud noises, and other times he freaks out from them. I'll admit I do too. That's all the SID. So, it's worth thinking that it's possible, like Drew's current diagnosis, to have a LOT of Asperger's symptoms without actually having Asperger's, since some of the main components are either hazy or not there at all. It really can be confusing. But I think if you address any of the symptoms, you have to come out on the better end to some degree.

[prydera.livejournal.com]

One thing to keep in mind with Drew is that SID is occasionally placed generally on the autistic spectrum (so is non-verbal learning disability which I'd suggest Drew get checked for in a couple years if he's having any issues academically as in my experience most people with NLD have SID and visa-versa). It's on a list of things that I've always just figured they don't know what to do with. I'm not saying that it is an ASD, just that sometimes it gets placed there. I don't have Asperger's but I probably have SID (not formally diagnosed, but suggested) and have LDs that are very close to NLD and every once and while end up on a website that suggests that NLD & SID are on the autistic spectrum.

[orawnzva.livejournal.com]

Well, remember that it's a "spectrum" — there's a list of quirks, ways a person can be different from the "norm", that occur together often enough that they must have a common cause. However, what we call that common cause is determined more-or-less by how big of a deal the quirks are in a person's life. If it's this much of a problem, we call it "Asperger's syndrome" (where a "syndrome" is, simply and literally, a list of symptoms that occur together), if it's that much of a problem (and in a slightly different way), we call it "autism".

So, what if you — like me — have all or most the quirks on that list, but they aren't giving you enough trouble to amount to a medical diagnosis? Well, then, you wouldn't get a medical diagnosis! Nevertheless, you'd pretty clearly would have whatever the common cause turns out to be, and that might be a useful thing to know.

Actually, you and I do have a medical diagnosis for our quirks: ADHD. And that makes sense because there's a level of quirkiness-in-that-way which seems to tend to result in the quirks corresponding to ADHD being objectively problematic and the other quirks just being notable.

[nightengalesknd.livejournal.com]

Yup exactly. Which is why I don't really care if I have it or not. Thinking about my aspergers traits helps me understand myself and my patients better. If the amalgamation of traits = the whole diagnosis is sort of beside the point.

I read a book a couple of years ago called the ADHD-autism connection. Except for being almost totally devoid of any scientific content whatsoever and a bit too spiritual for my taste, it was the first place to raise the similarities I'd noticed. I'll be curious to see if neurotransmitter biology ever comes up with anything more definitive one way or the other.

[lilituc.livejournal.com]

That's interesting. My brother has been diagnosed with ADHD and medicated since he was young (he's 17 now), but imo he seems very typical Aspergers, not ADHD at all. Of course, when I suggested this to my parents, they freaked out at the "a" word and immediately denied it vehemently. I guess he's done okay anyway, though.

[museumfreak.livejournal.com]

I suspect I have only SID and ADHD and NOT aspergers. I wish I knew where to get testing for the SID because so far the aspergers testing has been money prohibitive, and I really don't plan to change my case management.

[nightengalesknd.livejournal.com]

Yeah and I left off the diagnostic criteria that don't fit me (lack of sharing interests, for example) And there's a great chance I have a ton of Asperger traits and don't have Aspergers. It all comes down to just how impaired I am, which is a rather subjective term. But whether I have Aspergers or not, I do have all these traits and can think about myself as such.

The whole point of labeling that kid (or any other person) autistic, in my opinion, is so the correct services can be arranged. But there is way too high a danger in just lumping "autism" all together and not adressing individual differences. Same with ADHD for that matter. It's a shame that in our current educational and medical climate, we can't adress symptoms without that all important label. I mean, any kid who needs extra sensory input should just be able to get it, in my ideal world. Right?

[windsornot.livejournal.com]

But there is way too high a danger in just lumping "autism" all together and not adressing individual differences. Same with ADHD for that matter.

That was exactly my point. While I agree that very often kids are labelled with that just to ensure that they have the services they need, and as parents we are told, "don't worry about the label, as long as they get the services they need", part of it is that "stigma" attached to such a label. Yes, if my son was labelled with Asperger's, he may or may not get certain services, but then he'd always be labelled even if a symptom resolves. I guess it's good where I am with his school services (where he gets all his therapy), in that they said that all the things he has in place would apply whether he had Asperger's or not-- it'd be the same. Of course, I need to push for more sensory input stuff, as for some silly reason they don't think it has educational merit. (I know, my reaction too is, "WHAT???", because he focuses better after getting said input, and doesn't that help him learn better? Yup, we need to work on that one with them.)

[plasticsturgeon.livejournal.com]

There's also PDD-NOS--Pervasive Developmental Disorder Not Otherwise Specified; a lot of the time people with some but not all qualifying symptoms get that diagnosis.

[moonspark.livejournal.com]

Very interesting entry.

Have you read "Thinking in Pictures, Expanded Edition: My Life with Autism" by Temple Grandin? It's worth a read. She is very, very, very visual to the point that she had difficulty learning language. But she wrote this book.

[nightengalesknd.livejournal.com]

Yup. Good book. Read it years ago. Need to re-read.

Her perspective fascinates me because I can't think in picutres at all. I need words to explain the pictures. Yet in other ways I identify with her descriptions of the world a lot.

[moonspark.livejournal.com]

Interesting.
I actually identified pretty strongly with her because I'm a highly visual person. I mean, I can think in words, but I can think in pictures too.

[tirerim.livejournal.com]

On the façade of normalcy: just speaking as someone who isn't "normal", I found that I was much happier in late high school than I was in middle school, much of which (I think) was due to figuring out how to act "normal", though I don't think I realized at the time that that's what I had been lacking. Then, of course, I got to college, and didn't have to pretend to be normal anymore, and that was even better. I feel like what this says is that, in an intolerant environment, the façade of normalcy can be pretty useful, but it's better to just find a tolerant environment, at least from the perspective of the person putting on the façade. I don't know what it says about the utility of actually trying to teach people to put on such a façade, though, given that children in general are often a pretty intolerant environment.

[nightengalesknd.livejournal.com]

I think it really depends. There are kids who desperately want to fit in and can't figure out how. Those kids do greately benefit from social skills classes, someone explaining to them what clothes are cool, what slang is in, how to respond to sarcasm.

And then there are kids like me whose new 7th grade teacher called home after a week at school asking "why can't you get your daughter to dress more like the other girls?" She was taking the clothing as the cause and not the symptom of my social problems that were so quickly evident. They could have put me in the same outfits and I would have STILL be just as obviously weird in ways I couldn't change, plus exponentially more miserable in the pants foisted upon me. The scarlet W would still have been just as visible. I was much happier in late high school not because I had gathered more normalcy but because I was among techies who didn't value normalcy as much as they valued the ability to hang lights and paint sets.

What I don't get is, the other kids are the ones who are suposedly able to learn interpersonal skills more easliy than I am. Why can't we teach THEM to be more tolerant instead of putting the onus on the kid who doesn't learn those things as readily?

[plasticsturgeon.livejournal.com]

Why can't we teach THEM to be more tolerant instead of putting the onus on the kid who doesn't learn those things as readily?

That is EXACTLY what I've been asking for a while now. It's obviously part of a majoritist, conformist mindset...

[nightengalesknd.livejournal.com]

Yes.

I also suspect it's because, by and large, people who think like me are not the ones hired to either set or implement the policies towards schoolchildren.

asperger's vs. autism

[moonlitcirce.livejournal.com]

The only difference in the diagnosis of autism and Asperger's is that with autism, there is a 2 year delay of language. With Asperger's, there is not. This is why Temple Grandin, though high-functioning, had a delay in language skills and therefore, she has autism.

Re: asperger's vs. autism

[scibilia.livejournal.com]

Hm. My brother had a 2-year language delay (he only repeated words other people said until age 4), and he has an Asperger's diagnosis. He was originally diagnosed with autism, but that was before most people had heard of Asperger's (early 90's).

Re: asperger's vs. autism

[nightengalesknd.livejournal.com]

Yeah I see that all the time. The kid is 10 and verbal NOW and seems pretty good with language so we are asked to evaluate for Aspergers. Then we find out he didn't talk at all until age 3.

Thing is, so long as any needed services are provided for the child's current needs, the actual difference isn't all that great. Some people say Aspergers is "better" or call it "mild autism" but they are both on the same spectrum.

Re: asperger's vs. autism

[nightengalesknd.livejournal.com]

I've never heard the two years part before. For Aspergers there needs to be no clinically signifigant delay in language aquisition. And the whole Part 2 on the autistic disorder dealing with language development is not there in the Aspergers criteria.


DSM IV-TR criteria here (http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm)

This is why when we look at a verbal 8 year old for evlauation on the spectrum we have to take a good language history. Verbal at age 8 does not mean the kid has Aspergers vs autistic disorder if the kid didn't talk, for instance, until age 3.
(Reply to this)(Parent)

[wakeelf.livejournal.com]

I just learned a lot from this entry.

What struck more than that we sort of did the same thing at the same ages. When I was 10 I read my Dad's 1987 manual of orthopedic surgery. When I was 13 I read good portions of a medical dictionary, I correctly diagnosed my sister with impetigo that summer to the wonder of my parents and family practice doc. When I was 14 and in my first biology course, I read every article in existence on the biochemistry and genetics of Kniest.

I think we were simply destined for this insanity of being medical professionals. I wonder if our average colleagues did the same sort of things.

[nightengalesknd.livejournal.com]

I can tell you with confidence that no classmate or residency-mate of mine to whom I mentioned my early reading habits had ever done anything of the sort. Reading medical stuff in grade school or high school is simply wierd. Heck, paying attention to the medical rather than relational side of Grey's Anatomy is weird.

I have a couple of friends who read like I do, but they didn't go into med school. One went into public health and one went into special ed. I was really disapointed when I got to med school to learn that people who have an intense early interest in medicine - aren't the ones who go to med school.

But I was definitely destined. One of my early memories is going to work with my dad and trying to reason through how it was that he had a day off or a summer vacation but, unlike my preschool, at those times the hospital was not closed. The hospital in fact never closed becacuse there were always and would always be sick people. I remember trying to sort that one out and kind of liked the idea of being the one there for those sick people. I was 4 and a half.

luncheon meat

[squidia.livejournal.com]

about a year ago, i had to locate for a patron a particular article from 1975 about autism. i ended up reading the whole article, because i was interested, and at the end was a photo of an autistic kid hiding in a cardboard box on top a tower of chairs, and I saved it and have kept it on my fridge ever since. i really identify with the kid sometimes!! :) Also, the box the kid chose happened to be for "luncheon meat" so in the photo it looks like the kid has been labeled "luncheon meat", which also resonates with me some days! and is funny in a not-laughing-out-loud kind of ironic way!

I scanned the picture for you -- you can see it here -- because no verbal description does it justice (although with your noted need to describe images with words, perhaps in this case my description is warranted)! :)

[maurakelly.livejournal.com]

I know I'm rather late on commenting here, but, in addition to enjoying another interesting post on the whole, I just had to say...

Wow! You know Variety Club Camp? I totally went to Variety Club! Okay, it was over 20 years ago, but still. This was back when it was solely an overnight camp (for 3 weeks!) and just had kids with physical disabilities.

(Forgive me if we covered this during our one time get together at Game Night. I am not remembering Variety Club popping up in conversation, but it could have.)

Anyway, it was nice to see a familiar name.

[nightengalesknd.livejournal.com]

Variety Club was my job between college and my teaching job. By 1998, they had two overnight sessions, one for younger kids and one for older kids, who had a physical disability primarily. Some of these kids did also have developmental or cognitive impairment but it was very much a physical disability session. I had the 4th national ranked wheelchair racer in my cabin. They also had a day camp for kids with a primariliy developmental diagnosis, mostly Down syndrome, other cognitive impairments, and mild autism. There was also a third group of reverse inclusion who were day campers by schedule but overnight campers by characteristic.

I was their first ever Science Specialist. So I taught science activites as well as being a cabin worker. They had never had science before so they asked me to do the unprecidented - to work with both the day and overnight groups. I had a shoestring budget. In fact I had to borrow shoe strings. 90% of my stuff was "borrowed" from either the art teacher, the cafeteria or facilities. Teaching science activites, I had a blast! And what was especially fun for me was that some of the day camp staff, special ed teachers or aides in their regular lives, had been so afraid of science they hadn't thought they could incorporate it into their classrooms. We actually made hypothesises and then tested them out, things like floating and sinking.

The cabin was a bit rougher on me. Trying to transfer and dress kids while having (undiagnosed) CP myself. . . I wasn't always much use even though I tried. Even some of the 9 and 10 year olds were bigger than I was. I did click with one homesick little girl with some mild motor delays and some huge anxiety (autistic? OCD?) issues going on. She couldn't button her shirt, and went into a huge tantrum instead of asking for help. One thing I was able to model for her was that it's OK for adults to ask for help sometimes. She was pretty impressed when I told her I was 16 before I could tie my shoes.

See, it's been a decade, I was only there for six weeks, and I'm STILL nostalgic. . .

[museumfreak.livejournal.com]

hey I am wondering if you can help me find OT with SI treatment. I was thinking about saving my pennies to go for a weeklong adult intensive at the Ayres clinic -- but they shut down in early 2008 due to financial mismanagement. The few people who are certified to do the SI test (the only DB I could find of SI practitioners on the web) in Atlanta all seem to work out of easy transportation reach OR only work with children/for school systems.