Buckle your seatbelts! It's ETHICS!

Last night at work, we admitted a gunshot wound to the head. As I went out to the waiting room to retrieve his parents and his sister, I wondered if he thought of their suffering. I wondered if they thought of his suffering that lead him to his final actions. There is nothing you can say when you experience people's sorrow on that level. These are the moments I no longer share with my husband. It is too much for him, and maybe too much for me. In some ways, it amazes me how I can stare at a human being bleeding uncontrollably,  being intubated, or declining neurologically without flinching once. I can feel the lump in my throat form while watching a mother weep over her son who is being kept alive simple to harvest his organs (to help another person in great need). A stony face comes in handy, but it doesn't mean you are not aching inside or on a good day filled with divine joy.

Back to last night. When I am thinking of a few  concepts, at the same time, sometimes they blend together. Like when I am thinking about our gunshot victim and genetic testing for autism or other "abnormal" genetic markers. I am curious about my own DNA. But, it is the same level of curiosity  I would express towards taking apart a clock to see the functioning of the gears. We are complex machines. I am not a Burroughs fan (though Beats are great), I do like Robert Wyatt-- so let's say we are are complex, soft machines. I want to know what my gray matter looks like. I want to see a map of my thought process. Of your thought process. Of the thought process of a frog. HOWEVER, I do not want to change any of it. Before we can decide how to "help" someone live a fulfilling life, we need to define a fulfilling life.

All humans suffer. And, the degree of that suffering is relative. If the worse thing you have ever experienced is a hang nail. It is your worse experience. If someone else's worse experience was the new onset of MS, that would be their worse suffering. Yet neither person will understand how those situations effect the other, how debilitating or how motivating.

When I attended the IMFAR conference, I was conflicted about a handful of things. Research for knowledge sake is a beautiful thing. Understanding and growth accompany each other. But, I am not naive. I worked at a pharmacy for four years. Snake oil salesmen still exist. I wondered how long it would take for oxytocin nasal spray to hit the masses at close to $100 (if we're lucky) a pop. And, I also realized there were  people in those rooms looking to identify autism genes with the hopes of obliterating them. I am not one of those people. Sure, I want to know the names of those genes. I want to see them. But, "mutations" has a negative connotation even if we are sitting in a room full of scientists. I realize mutations got us out of the water, but I consider myself a far cry from the Toxic Avenger. Okay, semantics is another entry completely. You get it-- I am not a mutant. If someone had identified my mutant genes and altered them, I would not be me. I like me. I've had some rough times, but not without purpose. I should mention that purpose may not always be event to me. It doesn't have to be. The human experience is composed of many taut strings called people and their lives. We fit together to form a plane with the tension of a tennis racket. Time is the ball. If one string is not taut or is removed-- the ball doesn't bounce to its full potential.

Here's where I try to exercise the theory of mind so often discussed. Some parents have children who are placed on the most severe end of the autism spectrum. They see what they perceive as their child's suffering daily. They themselves suffer. They want to help their child. They want to help themselves. It is all so slippery. Why is it okay to use behavior modification on my daughters who are labeled higher functioning but not okay to alter the genetic code of  a non-verbal, self-harming individual? I don't have an answer for that. But, I should disclose I worked with a group called L'Arche even before my diagnosis. A different and what some call disabled life is NOT LESS of a life. I believe neuro-typical and physio-typical people just don't know how to integrate non-similarities into their life.

Then again, wading through the experience of life and death on a daily basis, I wonder how much is too much. How much has our technological ego enabled us to enable suffering. Quality versus quantity argument. The sick wolf leaving the pack to die argument. But, that sick wolf lived a life before its decline. It contributed, for better or for worse, to the character and livelihood of the  pack. It made the pack what it is. How could we be so bold as to try to skip steps in our own chronology? How could we feel so confident to wrench the pen out of the hand writing our collective history? Sure, some people say it is time to write that history with a typewriter. Better yet, some of us are crazy enough to think we can write it on a Brother word processor!

So, again, back to last night. If someone told that man's parents when he was just an embryo in his mother's uterus they could detect his future mental health, would they take the test? If they were told it would prevent their child years of suffering through mental health issues and horrible self-inflicted death, would they? If the test was taken and they were told modification or a terminated pregnancy could take away the suffering of watching their child die in such a way, would they? What if that child would touch countless others with his humor, relative good nature, or kindness in spite his depression? What if he created masterpieces of art that would only be discovered after his untimely death? What if he had notebooks filled with theories that could help humanity? What would they do? Everyone suffers. Everyone has their own joy-- sometimes fleeting. Are we so bold and so brazen to think we can control and, more disturbingly, profit off of each extreme?

Whew... that is just one night's worth electricity jumping around my gray matter. I think I will decompress and do some laundry.

Splitting Hairs

These are some of the situations the general public needs to understand about autism. These are situations that the neurotypical public whitewash with a shrug and a "what's the big deal" mentality. These are situations that lead to accusations of spoiled children lacking discipline or simple misbehavior. And, that breaks my heart. I know from personal experience there is a huge gap in understanding. I feel lucky I learned to try to keep my mouth shut, even if I do find it unjust. However, with my daughters, I am trying to implement the best tactics I know-- most come under the blanket adaptive behavioral therapies. However, sometimes, you hold your child by the heel and dip them in head first-- hoping the experience will lead them to be more resilient.

When Sine, Cosine, and I went to last week's IEP, one of the five teachers/faculty present asked me how I tell the girls apart, because they appear identical. I don't understand this-- because they are NOT by any means identical to me. Yet, I have heard this enough to know the majority of the people we've encountered do see them as such. I casually mentioned a possible haircut in the near future. And, Sine's demeanor immediately changed. She stiffened. Her tone of voice changed. This would not be happening she informed us. Cosine then piped up to say she wanted a haircut. I tried to defuse by saying it is a possibility but would NOT be happening any time soon. I considered this like our frequently used five minute warnings for transitions. Some day, not today.

Almost a week later, Cosine approached me about a haircut. These kids do not let go of much. Once it is out there, expect to hear about it again and possibly often. Sine began to panic. Sheer panic. I started the comforting talk and the soothing actions. However, this is when I needed to make a choice. Entertain Sine's rigidity and deny her sister an opportunity she actively wanted to pursue or keep going.

We had faced this type of grand meltdown before when we had to get Sine to break down many of the huge structures, "tents", Sine had built throughout the house. One of my best friends has been employed as a teacher and parental resource, specializing in ASD, for almost two decades. She told me get it now. The longer you let the behavior to continue the harder it will be to break or change. For as mechanical as I can appear, it bothered me to break down my daughters' lives simply into a series of wanted or unwanted behaviors. But, it had to be done. I didn't want to envision my daughter having what others would view as "temper tantrums" at the age of forty. I wanted to give her the tools to move past difficulties, not because it is so important what others think of her-- but so she can be comfortable with herself, understand herself. I want her to feel strong, confident, and if possible, in control.

As I started to prepare a separate room as Cosine's barber shop, Sine began to pull at my arms and drag herself as she sobbed. She wailed, she clung to my legs, and ultimately, she began to scream. I tried to talk her down with explanations-- Cosine would still be the same person. Sine could still play with Cosine, and Cosine would still love her. There would be no condolences. I made Sine sit somewhere she wouldn't have to witness the act. I put a movie on she'd enjoy. I gave her her favorite blanket. And, still the sobbing continued. Part of me wanted to stop, to make her feel better. However, Cosine deserved to assert her individuality if she wanted to.

I could hear Sine sobbing and moving around the next room as I reaffirmed Cosine's decision. She looked beautiful. She would feel so much more comfortable. She was such a big girl and being a good listener by sitting so still. I could tell it was bothering her that Sine didn't support her choice. As I had brushed Cosine off, changed her shirt and gave her a big hug, Sine slowly came back into the room. "See!" I brightly said, "It's all over and everyone is okay!" Cosine want on to confirm, "I'm okay! We can still play." Sine whimpered and continued to chew on her blanket.

Cosine went off to continue her previous activities. I scooped up Sine. This is when the coddling goes into full force. I try to get her emotions balanced and her respiratory rate normalized by softly whispering and gently petting her hair while squeezing her extra tight. The effects were immediate. We started to review what happen. I helped her find words to express what set her off or what issue we needed to address. More sighing replaced the screaming. A nuzzling face to my chest replaced the stiff limbs. We again were faced with this: change will happen whether or not we want it to... and sometimes (most) times it is good.

After Sine had returned to a comfortable frame of mind, I made her rescue all the framed photos of Cosine out of the trash. Yes, while I was cutting Cosine's hair, she had collected all the evidence of Cosine with long hair and destroyed them by throwing them in the trash. That is how overwhelming the situation was for her. A simple hair cut had the potential of erasing an indescribably close bond with her twin sister. To think a teacher, a future employer, or even an uninformed relative would approach her and flatly tell her to "get over it" is beyond cruel in my mind.

By simply taking a little extra time and offering Sine some understanding and support, she was able to move through it not just passed it. Not only was she already able to compliment Cosine on her new hairstyle but she has approached me about trimming a "little" bit off of her own hair. Whew!

IMFAR: day one lecture notes transcribed (2/5)

Here is the second and long overdue installment of my transcribed notes from the first day at IMFAR. It has taken me longer than I had hoped to work on these. Sometimes life takes over, they say. Yesterday, I had the kindergarten transition meeting with Sine and Cosine in tow. Myself and five other participants reviewed, discussed, and eventual accepted Sine's new IEP. It was also agreed upon that a watchful eye would be kept on any emerging needs of Cosine (after I provided documentation of her ADOS testing and its accompanying recommendations of further psychological evaluation). I will definitely explore this process more in upcoming blogs.

Also, we have been doing some home improvement. As much as I enjoy the conceptual planning and the physical tasks at hand, it is stressful when I have to gingerly accommodate the improvements against my daily routines. My daily routines provide me with as much comfort as a Valium does to others.

Also, I have cut my hours down at work, finally acknowledging I have been living my life teetering on the brink of collapse. I am hoping for more time to spend with my family and more time to dedicate to more writing & (fun for me) illustrations.

Here's the next piece in the puzzle.

Invited Educational Symposium: Friendship in ASD through Life Span: Nature, Trajectories, Importance and Treatment

Paraphrased overview from program book: Having friends is important to a child's well-being and development of cognitive, linguistic, and social skills in typical development. 60-75% of individuals with ASD experience difficulties in forming friendships. Yet, it is an overlooked topic. Enhancing friendship in ASD will be considered by reviewing individual, familial, and environmental observed, quantitative and qualitative, components.


The Beginning of Friendship- Friendship in Preschoolers with HFASD: New Evidence and Implications.
N. Bauminger-Zviely/ School of Education, Bar-Ilan University, Ramat Gan, Israel

• conceptual different from typical peer interaction


• chosen specific peer over long period of time


• have shared history and shared emotional process


• “closeness” = proximity preference


• develop trust


• friends are stable and durable


• based on caregiver attachment


• markers and forms change


• higher level of engagement in joint tasks


• increase in reciprocal language


• cognitively important


• cyclical: need to have – have to need


• in ASD, 10-44% lacking friendship (number of friends decrease with age)


• sisters = friends (both ASD)


• friends younger or also disabled


• mothers believe teacher mediation important to forming friendships


• teachers believe teacher mediation is NOT important to forming friendships


• mutual preference important


• w/ friend: terms of affection in the form of nicknames


• w/ friend: shows imaginative play and touching


• w/o stillness and withdrawal


• didactic interaction lacking


• use of “buddy” encourages


• w/ HAS- shared experiences about fun not fear


• w/ HAS- less complex social pretend play


• both showing encouragement and comforting


• w/ HAS less vocalization


• reciprocity observed in both (quality different)


• w/ HAS solve problems slower, few comments, few coordinated action/gesture


• more efficient in 2nd experiences- learn and acquire skills


• friendship feasible and meaningful


• friendship should be specific aim for early intervention


• with no early friends, higher degrees of loneliness, no deeper quality relationships, and anxiety


• developing friendships develop individual

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!

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?

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.

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!