Thursday, May 31, 2012

Thanks, Ween!

I like smart music. And, sometimes smart music can be fun. And, that is Ween. Was Ween.
From The Pod. I listened to the heck outta that cassette!

Sunday, May 27, 2012

One small step for a little girl, one great step for us

Or what ASD looks like on paper.

On Friday, Sine and Cosine moved on and out of preschool. They had a "ceremony" in which they sang about a dozen little ditties with their fellow students. Pretty cute. At one point, Sine got distracted by a baby in a carrier, and stopping singing for a few minutes. And, Cosine spent a few moments correcting a follow student on how to count into a song. I was impressed by every moment of it. Equally, that I managed not to verbal attack their teacher was impressive. Her name shall be known far and wide, coast to coast, as one of the WORST teachers ever. I think I have previously mentioned her sensitivities and skill  (lack thereof) of dealing with two beautiful, gifted, and loving girls with ASD.

On Friday, I received their "report cards".  And, it's happening all over again. Reading their subjective reviews was like reading fistfuls of report cards from my youth. They were something I used to emphasis what ASD can look like to an educator or parent if not diagnosed and intervention started when I spoke on a panel of ASD adults. Fortunately, for Cosine and especially Sine, we have started that process.

Lacking time, I will briefly list the areas where they needed "learning". However, there were ten times as many skills that they have mastered. I do not want anyone to think I don't celebrate their achievements. I have been told many times that academically they could skip kindergarten. So, it isn't so much the concrete skills giving cause for alarm. I, too, did very well academically... in subjects I found interesting. These areas of needed improvement are strictly in behavioral/social areas. Just like their momma.

Sine's troubled areas: follows class rules/routine, follows direction, plays cooperatively with other children, shares with others, waits for turns, can suppress tendency to interrupt, and displays self-control. She also was marked as unable to do a somersault. Sine expresses a bit more physical rigidity than Cosine. I have mentioned this before as like trying to fold an ironing board.

Cosine's troubled areas: shares with others, waits turns, can suppress tendency to interrupt, and displays self-control.

Some of these things seem age appropriate to me in ANY child. However, it is when patterns start to emerge and level of  their severity. I wonder how many of these things would have been better mastered if the girls had a teacher even remotely informed about ASD or somewhat interested in teaching a child who wasn't an easy product of a cookie cutter. Unfortunately, I have heard other complaints from other parents. Apparently, there were issues with this teacher in high grades. So, as the Catholic school system is so well-known for doing, they just moved her around instead of dealing with it. And, they wonder why we aren't going back.

I am very hopefully that early intervention on many levels will give the girls the tools they need to climb over obstacles. They are smart girls. I have seen changes in them already. I look forward to a fun summer with zoo classes, swimming classes, summer reading program, and a week-long nature camp for the girls. I am already finding some resources to reinforce some learning over these next few months. But, I will demand there be plenty of goofing off as well!

Another recent consideration I may write a bit more about alter, we considering buying a security system for the house. Not so much because we fear a break-in. It's because the break-outs have been on the rise. Both Sine and Cosine have taken to letting themselves out of the house. Apparently, this is symptomatic aslo. And, I remember being disciplined for leaving the house and wandering without telling anyone at a VERY young age numerous times. I spent a lot of time not being where I was supposed to be in my youth. As a parent, this is a very scary development.

Also, I recently had to take Cosine to a specialist because of her acid reflux. I didn't even know a five and a half year old could get that! It was suggested she may have a food allergy-- gluten. She is also allergic to tomatoes, making her mouth red and itchy. The physician recommended a prescription to be used daily, but I have concern about putting my child on a maintenance drug (ghosts from working in a pharmacy for years). So, we will be modifying our diets as a start. Thanks goodness we already belong to the food co-op. Sine also has some digestive issues, but her's are more southern in latitude. Again, it amazes me how cliche some of their (our) symptomatology seems. But, that only convinces me more there are universal physiological markers and processes taking place in person's with ASD. Why? How? What code is being written or unwritten to make these changes?

Friday, May 25, 2012

Chuckles!


This is definitely my brain. Except I would have "My Vinyl Collection" would replace the "memes" in my cerebellum.  I have also replaced part of  my temporal and parietal lobes with "ALL THINGS MY DAUGHTERS". This is from I F*cking Love Science on Facebook. Good for a few giggles... ok, a lot of giggles.

Wednesday, May 23, 2012

Can you smell that smell?

I've never been too terribly concerned with the social delays of my ASD/Asperger's. Well, not now that I am a 41yr old woman with a husband, two children, and a close group of friends. I will admit it does still operate like a mangled jack-in-the-box at the workplace sometimes... most of the time. But, it equates more with a having to do and tolerate things/people I don't want to. Things I don't understand. Like, why should I have to listen to you talk incessantly about your dogs. I mean, I'll give you the first few times. But, when you regularly talk about your dog's bowel movement just for the sake of talking, I've got to move on. I grew up with dogs. I understand dogs. Likewise, although I have children I live my life for, I do NOT want to hear about the plans for your baby shower. Not unless it is on the moon Europa-- that would be cool.

I don't understand how neuro-typical people can handle that. Social exchange: you tell me something about yourself and then I tell you something about myself just to fill space. People are scared of silence. I never needed that. There are times I am genuinely interested. Overly interested. And, there are times when I am  listening to you because I know those are the rules. It is kind of like how I tack on, "And, I hope you're doing well" to the end of my phone messages. Reciprocation. I figure people should just assume I care. But, they don't. I am not a sociopath or a monster-- I care. But, that doesn't change day to day, so I have trouble understanding why I need to express it everyday.  Aside, I have very rigid ideas about friends versus acquaintances. It is a concept that looks like a bull's eye. I will not call someone my friend if they are not. I'll use the words acquaintance or co-worker, but not friend. That word means something and carries weight.

 Because I saddled up with the misfits, heads, and punks during school, especially high school-- I was never forced to do much of a social waltz. I was revered for my stand-off-ish persona. Yet, I am working hard to get my daughters the early intervention because they need to learn things people call simple like: asking for help, inviting children over to play, and acknowledging children when they come over to play. These are all skills that can be integrated. And, ones that will eventually help them find and keep friends. Find and keep jobs. So, if I feel that is important for my children, it must be important overall (throwing a blanket in a sweeping gesture).

Wait! This blog was supposed to be about sensitivities. I have briefly mentioned some of mine when I spoke about turtleneck tortures and caraway seed assassins. But, one that smacked me right in the face recently? Right in the first half hour of the IMFAR conference? Odors-- positive and negative. In many situations, they are one and the same. Let me start this off with a little anecdote. People do seem to love those. I don't really. You know, like GET ON WITH IT ALREADY!

While working as a clerk in a record store (one selling used vinyl, CDs, videos, super-8s, what have you), the director Stephen Frears was filming the movie High Fidelity in my neighborhood. He did a casting call for extras in our store. Chaos! Every star in Chicago waiting to be discovered showed  up. It was good for a laugh. One of the casting people approached me and asked if I would be interested in letting them use my vintage motorcycle in a scene... and if I'd like to be an extra. I let it soak a bit, and said "yes" to the extra part. I had never done anything like that and wanted to see a movie being filmed. I said "no" to the motorcycle part. I spent two days sitting around during halted production, making minimum while some starlet got her haircut. I befriend some of the gaffers, makeup people, and other tech persons by being curious and asking questions (lots of). Soon, they were showing me pictures of their kids and getting me bottles of water. Eventually, I would get on film, playing a bartender. Big whoop. I recently bought the DVD, ten years after the fact. Because, I think it would be good ammo when my girls are teenagers and don't think I am or ever was "cool". At that point I will blow the dust off the DVD, pop it in the player, and say, "See! See! Your mom was in a movie. Now, go clean your room."

I have never been one to understand the cult of personality or people's fascination with celebrities and all things Hollywood. Of course, I have my personal preferences, but they seem to be based more on being intrigued than starstruck. For example, Klaus Kinski or David Lynch or Crispin Glover or David Cronenberg.  So, when I got to stand right next to John Cusak, I was pretty calm. I didn't approach him. I kind of watched him out of the corner of my eye. Like you watch to see if a bird can figure its way out of a house through an open window. What was the most striking thing about John Cusak, besides being pretty tall? He smelled of Indian food, spicy. That's all I've got. Not really enough to phone Entertainment Tonight, huh?

Jump ahead ten plus years of the nose knowing. Ye know too much, my dear nose! I made sure I positioned myself nicely in reference to an audio speaker, in good view of the screen, and empty seats to either side. Toward the back row, of course. Suddenly, less than  fifteen minutes into the IMFAR conference introductions on the first morning, the seat beside me was pulled backwards. What the?!?!?! Well, that is pretty clever-- so you don't need to crawl over people, interrupting them. Then, it sat. The human flesh carrier of an overabundance of PERFUME AND POWDER! Good god, I thought. Are you kidding me, I beseeched. Wouldn't perfumes and colognes be ban at a conference on autism?! Apparently, no. The woman not only reeked of flowery scents so artificial that they would kill any true flora or fauna, but she looked like a huge powder puff. I am not trying to be unnecessarily cruel here. I was immediately distracted. I pulled my jacket collar up to my face. Deep breath, whew. I can do this, I encouraged myself. Something, somewhere is placing hurtles for me to overcome, I divinely rationalized. Then, she pulled out the BIG GUNS! Well, actually, a small travel sized bottle of baby powder. It applied a fresh dusting.  For God's sake! The inhumanity! Was she doing it on purpose? Then she flipped off her shoes. My aversion to other people's feet is a different blog entirely. My karma must have been fairly decent, or maybe I didn't mask my agitation as well as I thought. She moved after texting a bit and slipping her shoes back on. I don't need to  mention the breath of the person next to me during a later seminar. I think my point is clear.

I am not trying to be overly dramatic about these things. But, I am trying to show how sensitive, how overwhelmed, and how distracted I can get. I would rather smell the garlic someone ate last night wafting from their pores than someone' musky attempt of masking their own healthy odor. I would rather you stand next doused to me in sweat, then have you hang your jacket contaminated with perfume residue next to mine. I often don't want to hug close relatives because their perfume will get on my clothes. I would go as far as saying I know what my husband, children, and friends smell like. I try to focus more on scents I appreciate like wet dirt and cardamon. Sometimes, I will keep a cardamon seeds with me to diffuse adversesituations. It's all about coping mechanisms. There is some show on American television these days based on a Japanese game show. Contestants are placed in an over-sized, wet, moving, and loud obstacle course. This is as close as I can come to a suitable comparison to my day with my five sense. If they only made a helmet for that!

Now for something complete Gary Numan

I forgot that sometimes I just like to post things I love. Like Gary Numan. 

Monday, May 21, 2012

IMFAR: day one lecture notes transcribed (1/5)

These are just SOME of my notes as I am transcribing them. I am posting them straight without commentary for two reasons:  maybe someone can connect their own dots and I will not have to type everything twice. This is just a block from the first quarter of day one at IMFAR! I will process and comment with some additional information I gather after I figure out what the heck I wrote in the first place. Enjoy this appetiser.


DAY ONE

IMFAR conference purpose: identify questions, methodology, and collaboration




Geri Dawson (Chapel Hill) Autism Speaks


• Improve lives: detect, translate, treatment, disseminate


• PREVENTION? “INVESTMENT”?


• $170million in research support


• Top –bottom research


• Discover risk factors


• Method detection


• Quality of life for adults


• Drugs (for profit and non-profit)


• Novel treatments


• Dissemination to community esp. “underserved”


• AGRE genome project


• Use of rat models


• Outcome measures


• Toddler Treatment Network (17 medical centers serving 22,000)


• 34 countries


• DSM V funding two studies effects on prevalence and diagnostics






Alan Parker Simons Foundation SFARI


• Many areas: math, computers, physical science


• Check website for news stories


• Simons Simplex Collection


• De Novo gene disruption: 7q11.23


• Simons VIP


• Making bio-collections available to others


• List of over 200 implicated genes


• Identifies variant sequences


• Protein interactions


• Strength of research on risk factors


• ??animal models??


• sfari.org




Keynote Speaker: Ruth Feldman (Yale, Israel)
Bio-behavioral Synchrony and the Development of Social Reciprocity- Implications of Clinical Practice OXYTOCIN


• OXTR oxytocin receptor gene


• Martin Cooper “Face Menu”


• Bonding is selective and enduring for survival of species


• Types: peer, parietal, filial


• Rules of social exchange are learned


• Capacity for empathy


• Studies are emerging and intensifying BEHAVIORAL


• Synchrony- collaborate and build societies like ants, schools of fish, and sharks


• 4-channel


• Behavior to biology


• Mother/parent provide bio-cues and social cues building bonds to eventual social bonds (w/in time limit early pregnancy to 1st year of life)


• Post-partum behavior essential


• Mother’s body is a bio-regulator/ function to regulate


• Grooming- relaying heavily on tactile contact translates to “social” touch


• Gaze, motherease, affect, affectionate touch, social contingency program newborns


• Infant scanning used to detect


• Mothers provide stimulation


• Looking for phenotypes- gaze synchrony, parental touch


• At 3mo active with face to face “dance-like”


• 3-9mo CRITICAL to maintain gaze and tolerance, synchrony remains (affect and rhythm)


• Basic quality of interaction set in first few months


• fathers stimulate with novelty


• Mother framed w/ gaze


• OXYTOCIN in hypothalamus: social interaction, theory of mind, stress reduction (interacts with dopamine)


• Works in loop: more oxytocin = more touch = more oxytocin etc.


• Doesn’t readily cross blood/brain


• PNS CNS


• Early studies using plasma samples not brain


• Amounts varied but stable within individuals


• Tells about “openness”


• NO difference in levels of men and women (parents)


• Increased during bond formation of pregnancy and immediately after birth


• Also seen in the first 3mo of “falling in love”


• Not significant after 3yrs (in parent interactions)


• Types: parental, best friend, romantic


• CNS PNS coordinate (effect one and or both)


• Use oxytocin nasally in studies


• ASD related to oxytocin function (reciprocity and pathways CNS PNS)


• CD38/OXTR/rs3796863/rs2254298/rs1042778 (co-morbidity w/ depression)


• ASD levels markedly lower


• When parents low, children low


• Does it effect girls consistently?


• What happens when genetic risk is identified???


• Birth – 5yrs


• Double blind research- administered to parents not children b/c of parallel effect of oxytocin (high risk infants), co-evaluation of mother and father care


• Longer gaze


• Synchrony uses mirror neuron NOT rt. amygdala, longer duration, more organized activation


• intrusiveness and gaze aversion uses amygdala not mirror neurons “choppy”


• coherent vs. disorganized anxiety


• temporal, parietal


• studies in post-partum depression











Sunday, May 20, 2012

Dibble Dibble Dop!

These are just SOME of my notes as I am transcribing them. I am posting them straight without commentary for two reasons:  maybe someone can connect their own dots and I will not have to type everything twice. This is just a block from the first quarter of day one at IMFAR! I will process and comment with some additional information I gather after I figure out what the heck I wrote in the first place. Enjoy this appetiser. Also, I had the privilege of taking all my notes in a beautiful little journal made by one of my bestest best, Nonna Clancy (psst, that's a nickname). She is a very talented book conservator and binder. And, she is generous. I am the proud owner of her work as are The Dumplings.


DAY ONE


IMFAR conference purpose: identify questions, methodology, and collaboration




Geri Dawson (Chapel Hill) Autism Speaks


• Improve lives: detect, translate, treatment, disseminate


• PREVENTION? “INVESTMENT”?


• $170million in research support


• Top –bottom research


• Discover risk factors


• Method detection


• Quality of life for adults


• Drugs (for profit and non-profit)


• Novel treatments


• Dissemination to community esp. “underserved”


• AGRE genome project


• Use of rat models


• Outcome measures


• Toddler Treatment Network (17 medical centers serving 22,000)


• 34 countries


• DSM V funding two studies effects on prevalence and diagnostics






Alan Parker Simons Foundation SFARI


• Many areas: math, computers, physical science


• Check website for news stories


• Simons Simplex Collection


• De Novo gene disruption: 7q11.23


• Simons VIP


• Making bio-collections available to others


• List of over 200 implicated genes


• Identifies variant sequences


• Protein interactions


• Strength of research on risk factors


• ??animal models??


• sfari.org




Keynote Speaker: Ruth Feldman (Yale, Israel)
Bio-behavioral Synchrony and the Development of Social Reciprocity- Implications of Clinical Practice OXYTOCIN

Paraphrased overview from program book: Cconceptual model of bio-behavioral synchrony (the coordination of psychological and behavioral response between attachment partners during social contact), theoretical and empirical framework for the study of attachment bonds and origins of social reciprocity. Study of hormonal response in the form of gaze, vocal, affective, and touch modalities. OT oxytocin provides the neurohormonal substrate for parental, romantic, and filial attachments. Various forms of close relationships express similar synchronized behavior and OT increase and is mutual-influencing among close partners. OT is linked to distinct patterns of brain activation and genetic markers. The use of OT and behavioral interventions for social disorders in early childhood are implicated in increased human affiliation, social reciprocity through the matrix of biological attunement and close behavioral synchrony.


• OXTR oxytocin receptor gene


• Martin Cooper “Face Menu”


• Bonding is selective and enduring for survival of species


• Types: peer, parietal, filial


• Rules of social exchange are learned


• Capacity for empathy


• Studies are emerging and intensifying BEHAVIORAL


• Synchrony- collaborate and build societies like ants, schools of fish, and sharks


• 4-channel


• Behavior to biology


• Mother/parent provide bio-cues and social cues building bonds to eventual social bonds (w/in time limit early pregnancy to 1st year of life)


• Post-partum behavior essential


• Mother’s body is a bio-regulator/ function to regulate


• Grooming- relaying heavily on tactile contact translates to “social” touch


• Gaze, motherease, affect, affectionate touch, social contingency program newborns


• Infant scanning used to detect


• Mothers provide stimulation


• Looking for phenotypes- gaze synchrony, parental touch


• At 3mo active with face to face “dance-like”


• 3-9mo CRITICAL to maintain gaze and tolerance, synchrony remains (affect and rhythm)


• Basic quality of interaction set in first few months


• fathers stimulate with novelty


• Mother framed w/ gaze


• OXYTOCIN in hypothalamus: social interaction, theory of mind, stress reduction (interacts with dopamine)


• Works in loop: more oxytocin = more touch = more oxytocin etc.


• Doesn’t readily cross blood/brain


• PNS CNS


• Early studies using plasma samples not brain


• Amounts varied but stable within individuals


• Tells about “openness”


• NO difference in levels of men and women (parents)


• Increased during bond formation of pregnancy and immediately after birth


• Also seen in the first 3mo of “falling in love”


• Not significant after 3yrs (in parent interactions)


• Types: parental, best friend, romantic


• CNS PNS coordinate (effect one and or both)


• Use oxytocin nasally in studies


• ASD related to oxytocin function (reciprocity and pathways CNS PNS)


• CD38/OXTR/rs3796863/rs2254298/rs1042778 (co-morbidity w/ depression)


• ASD levels markedly lower


• When parents low, children low


• Does it effect girls consistently?


• What happens when genetic risk is identified???


• Birth – 5yrs


• Double blind research- administered to parents not children b/c of parallel effect of oxytocin (high risk infants), co-evaluation of mother and father care


• Longer gaze


• Synchrony uses mirror neuron NOT rt. amygdala, longer duration, more organized activation


• intrusiveness and gaze aversion uses amygdala not mirror neurons “choppy”


• coherent vs. disorganized anxiety


• temporal, parietal


• studies in post-partum depression