5/29/2012

Sensory Integration Therapy Not Scientifically Validated: Not New News

It seems like there's always something to be mad at or feel threatened over when it comes to autism-related reporting or blogging. Sometimes it's reasonable outrage, like an article on autism that doesn't involve autistic individual perspectives or an article on autism that goes to Jenny McCarthy for her thoughts. I mean, Jenny McCarthy? Surely we can find a better celebrity? No? Double-Ds are headline bringing?

Sometimes what we feel isn't so much outrage as frustration. Frustration seems to be increasing (but who knows, as we haven't measured it, and I'm currently using availability heuristic to draw this conclusion, so could be totally incorrect). Okay, maybe it's not, overall. Who really knows about overall feelings, beliefs, thoughts, tendencies in the autistic community (speaking specifically of autistic individuals here) and those in the broader community supporting and caring about autistic individuals? No one does. No one has done a thorough survey with a large enough sample to be able to generalize. And even if someone had, it still would be a generalization that missed almost as many people as it captured. Consensus in the autism community? Hah. No.

Okay, then, if I can't get away with generalizing out to the community and being accurate, then let me be specific and confine my thoughts to what I have personally read today: an Academy of Pediatrics policy statement on sensory integration therapy is being covered by various news organizations, blogged about, tweeted, facebooked, etc. Some parents and autistic individuals reading the news coverage, like USN's, may be understandably concerned with the statement and the language about sensory issues, as sensory integration therapy is popular with a subset of occupational therapists.

News stories are about polarizing and sensationalizing. They are about snapshots. They are incomplete, potentially (and probably) inaccurate pieces written on the fly. Fact checking is often not done for daily stories. Instead, it is the full-length features with investigative journalists who can invest time, effort, and energy to get it right, that readers can better rely on. Skepticism is still the best tool you can have in your tool box.

The news coverage on the sensory integration therapy AAP policy statement does not link to the policy statement, so many readers will only have that news coverage to base their reaction on. This is NEVER a good idea. Yes, it's easier to read a quick headline, or scan a news story, and make a judgment, but all too often, doing so will result in the reader believing incorrect or incomplete information.

When possible, always go to the original source. Even press releases can be horribly incorrect. Interviews with scientists in newspapers often have the newspapers quoting or attributing to the scientist more than the study really shows. ALWAYS, if it's important, check the original source and read carefully before making a determination. If it isn't important, then refrain from coming to a conclusion. Knee-jerk reactions are exactly that and are rarely helpful.

On the issue of sensory integration therapy, as viewed by psychologists and pediatricians, the reality is that the AAP's policy statement is nothing new. Sensory integration therapy has never rested on scientific studies concerning its plausability as a remedy for tactile defensiveness. The policy states,

"It remains unclear whether children who present with findings described as sensory processing difficulties have an actual “disorder” of the sensory pathways of the brain or whether these deficits represent differences associated with other developmental and behavioral disorders. Specifically, the behavioral differences seen in children with autism spectrum disorders, 24 attention-deficit/hyperactivity disorder, 25 and developmental coordination disorders 26 overlap symptoms described in children with sensory processing disorders. Studies to date have not demonstrated that sensory integration dysfunction exists as a separate disorder distinct from these other developmental disabilities. Furthermore, numerous challenges exist for evaluating the effectiveness of sensory integration therapy, including the wide spectrum of symptom severity and presentation, lack of consistent outcome measures, and family factors, which make response to therapy variable. 27–29"

In short, there's no good evidence that sensory processing disorder exists separate from other developmentally delayed conditions, and it's really hard to judge whether the therapies in and of themselves are helpful long-term.

The AAP is not saying that autistic individuals, individuals with ADHD, and others don't have sensory issues which result in behavioral displays signalling distress. They are not conflating behavioral issues with ACTING OUT.

Many OTs who use sensory therapies do so in conjunction with other occupational therapies. It's rarely stand alone. As long as it's being done in conjunction with other therapies, as long as it's recognized that it hasn't been studied, swing away. Brush away. Introduce your child to a multitude of sensory experiences in a fun, non-threatening manner. There's absolutely no harm here.

But please don't get outraged when scientists say something hasn't been studied.

Here are the AAP's recommendations:

RECOMMENDATIONS

1. At this time, pediatricians should not use sensory processing disorder as a diagnosis. When these sensory symptoms are present, other developmental disorders—specifically, autism spectrum disorders, attention deficit/hyperactivity disorder, developmental coordination disorder, and anxiety disorder—must be considered and thoroughly evaluated, usually by appropriate referral(s) to a developmental and behavioral pediatrician, child psychiatrist, or child psychologist. The American Academy of Pediatrics clinical report on the management of children with autism spectrum disorders is a useful resource to help with these referrals. 35

2. Pediatricians should recognize and communicate with families about the limited data on the use of sensory-based therapies for childhood developmental and behavioral problems.

3. If the pediatrician is managing a child whose therapist is using sensory-based therapies, the pediatrician can play an important role in teaching families how to determine whether a therapy is effective.

a. Help families design simple ways to monitor effects of treatment (eg, behavior diaries, pre-post behavior rating scales). Help the family be specific and create explicit treatment goals, designed at the onset of therapy, focused on improving the individual’s ability to engage and participate in everyday activities (eg, ability to focus, tolerate foods, and be in a room with loud noises).

b. Set a time limit for seeing the family back to discuss whether the therapy is working to achieve the stated goals.

4. Pediatricians should inform families that occupational therapy is a limited resource, particularly the number of sessions available through schools and through insurance coverage. The family, pediatrician, and other clinicians should work together to prioritize treatment on the basis of the effects the sensory problems have on a child’s ability to perform daily functions of childhood.

5/28/2012

When Tornadoes Appear to Have Gone Off in Your Children's Rooms

I'm sure this is common. Gods, I hope it is: Kids making disaster areas of their rooms. Every couple months I get the courage to go back and look at my kids' rooms. I don't know why I bother, but it eventually starts to occur to me that my husband might not have the same concept of clean rooms that I do, and he's the one that tucks them in at night and gets them up. If there was a problem, he'd say something or make them take care of it, right?

For some reason, even after nearly a quarter decade spent with the man, I keep forgetting fundamental lessons: cleanliness is defined very differently by the both of us. It shouldn't be. We were both in the military, after all. At any rate, I decided this weekend I needed to tackle the girls' closets and get rid of the clothes they'd outgrown. I'm still working on it; it took cleaning their rooms and bagging stuff up to reach their closets.

What is it about kids that they can take a spotless room and make it look like a tornado hit in less than five minutes? I was emailing Kathleen last night "that child collects trash. Literally, she collects trash. three bags full of trash. good gods amighty. I've warned her and mean it--if I ever have to do her room again, anything on the floor gets thrown away and that will be the end of any toy buying for her ever. I've spent my entire day damned in her room." Kathleen instantly picked up on a key word reversal that was absolutely unintentional but oh so apropos. And it truly feels a bit like that--especially after today spent in Rosie's room. The same conversations occur, over and over. It's exhausting. I feel like I've spent most my adult life repeating myself. Because I have. As a teacher and a parent, I get to hear myself repeat common sense guidelines ad nauseum. It's a wonder I'm not always heavily drugged. I can't help but think that medical marijuana could fit in here somewhere...in brownies, of course... I kid,  but remember back to the seventies when they gave adults valium like it was candy and a generation of parents wandered around mellow...and kids roamed free.

I can tell you this, for sure: if I had done to my room what my kids routinely do to theirs, it would have only happened once for me, and then my parents would have fixed it so it couldn't happen again.

Not a bad idea, and one I really mean. The girls are old enough to be responsible for their actions, and I'm not losing another weekend to cleaning up their stuff. I'll just go through with a trash bag and Goodwill will be happy to see me coming.


5/26/2012

When Their Ten Isn't Our Ten: Letting Our Children...

Another school year for the girls finished on Thursday. Where did it go? It slid by so fast; it feels like they just started! Heck, close my eyes and it feels like the first day of school two years ago this August when my childhood classmate drove the bus right past my house without letting my girls off, even though I was standing at the end of the driveway and then running after the bus, screaming and arms waving. How is it possible that Lily will be in 5th grade and Rosie in 3rd? How, tell me! Because I cannot fathom it. Cannot fathom that my Lily is only a few inches shorter than me, in juniors sizes, and shares my shoes. Shares my shoes, for goodness sake, and even weighs in on the shoe purchases!

I remember when I was ten like it was just yesterday, remember that summer in 1979, when I turned eleven, and Dad, me and my brothers left my mom with my grandmother and drove to New York to visit my dad's parents. I remember thinking at that tender age that I knew it all, was an expert, a mini-adult. After all, I read my parents' books, had stumbled my way through The Thorn Birds, for goodness sake. I knew the term french letter, even if I had no idea it was a condom. I was learn-ed. Although Lily could handle the size of The Thorn Birds, I can't imagine placing that book or most of the other books I read in those early pre-teen years. Rosemary Rogers, Kathleen Woodiwiss, Celeste de Blasis, and Danielle Steel were authors I devoured behind my mother, although I can still remember the bemusement I felt over a lot of the, um, spicier details.

Lily and I read some of the same books, like the Harry Potter series, but the romances are in my bedroom, out of her sight and reach. While my voyeuring into my parents' books to see what worlds they'd visited did me no harm and my parents were probably not aware of just how early I started reading their books, I can't imagine letting the girls read those books or the ones I read now, not most of them. Instead, I am still joining worlds, reading the books that Bobby and the girls read--I have experienced Lemony Snickett, Harry Potter, warrior cats, that horrible Junie B. Jones (who really needs a time-out), and countless other books the kids have read over the years. I still journey into worlds my parents have been, reading after them their books, and now, the girls' books. It's lovely, in so many ways, to see the overlapping, especially as Bobby reads my sci-fi books, and walks in worlds I tread before him, and my dad tread before me. There's magic in knowing that three generations have read the same books (indeed, do today, with the Harry Potters, among others, being read first by my parents, then by me, then by Bobby and Lily).

So I sit here, at the beginning of the summer, my Lily's 10th summer, and I think of all the ways we are alike and all the ways we are different--and I know that she could not begin to imagine what it was like to be me at that age--the responsibilities that sat on my shoulders at that age, the adult world I tried my damnedest to inhabit--my way of avoiding dealing with kids my age, who were a complete mystery to me. She could not picture a world with no home computers, cell phones, nintendo ds's, and my little ponies...nor could she imagine that once upon a time, when I was her age, my brothers and I ran wild, wandered through fields, gazed upon rattlesnakes with wonder and fear, and roamed. Roamed. Rode bikes. Played outside all day until darkness fell. She cannot imagine a childhood where adults were afterthoughts and where kids ruled the day while parents worked. Where kids got into trouble and figured their way out of it. Where we regularly walked a mile down the rode to the little store to get a soda and back again, thinking nothing of the effort of the walk.

I try to imagine a world in which my three could roam the world, alone and free to wander and explore, where they ran into their friends on their jaunts, where they climbed barbed wire fences and wandered cow pastures, and I shake my head. I try to picture my Lily wanting to cook, so doing so--turning on the stove and experimenting as I did, at an even younger age than that. I see her pulling out English muffins, working the can opener for the tomato sauce, and using sliced cheese to make mini-pizzas in the oven, and then I shake my head and know that it's not even on her radar. She'd microwave pizza rolls instead, IF she even thought of that, and there's no need--an adult's always with them to help with those things.

At the expense of being safe (they have autism, after all), my children's experiences in being their very own Lord of the Flies (my childhood with my brothers certainly had that flavor to it) have been curtailed. Bobby was 18 or so before he was left home alone, and even then, I was scared to death. Here's the thing, though. Independence isn't learned by being dependent.

Bobby's skill set increased when we started letting him try and fail. And yes, there've been plenty of bumpy rides along the way the last five-six years of increasing independence, but he's able to navigate grocery stores independently. He's able to cook meals for the family. He's doing great, and it took letting him DO it.

We've begun in the past year to let loose a bit with the girls, to let them do--let them get their own breakfast, get their own showers (still have to check in and do touch up shampoos and teeth brushing and flossing and stuff), pack their lunch, get their own snack, walk across to their grandparents alone (across the driveway!).

As I sit here at the beginning of this summer, my Lily's tenth, I am going to keep juxtaposing the ten year old me on top of the ten year old her, and remember that I did okay, I learned a lot when I was allowed to try, when I was left alone to do it, and I'm going to see if she can't find some of her own adventures.

I'm just going to make sure The Thorn Birds is tucked out of reach.

5/24/2012

Lilies and Roses and More












For my garden girlies
for successfully navigating
through another school year.
Go, girlies!

Autism, Autism Speaks, and the True Stakeholders

Autism isn't a four letter word in our house. It's not something we treat with kid gloves, not something we see as a tragedy or, in our kids' case, in need of a cure. We see it as something to be worked with and around, but we don't talk much about it in terms of being a negative thing. We try not to define it in terms of  core deficits, but in terms of how it makes socialization and language more challenging and different.

It is what it is and in all honesty, we don't TALK about autism much here as a family. Everybody has issues and strengths. No biggie.

Imagine my surprise, then, when I was giving Bobby some suggestions for conversation starters for a friend who was coming over and he reacted negatively, saying he didn't want to sound autistic. What the hell? What was so autistic about talking about something he and the person had in common? How did that rise to autism and does that mean I now talk autistic? And if I did, again why is that a big thing? I don't know--and Bobby couldn't articulate it. And I remain saddened that he would regard his disabilities that way. At some point, rejecting your own neurology just makes everything that much harder. I know it happens, know that we as individuals often hate a part of ourselves, and I'd be the first to admit that in cases of disability (and especially acquired disability), it's complicated and messy and there is no right answer.

Where did he learn it? In the end, Bobby was able to say that he didn't want to sound autistic because of something about the adaptive rec center he used to attend and how he sometimes felt there--and I hate to think that he learned to reject a piece of himself at a place he was sent to in order to have socialization opportunities. Others learn to hate a part of themselves from their parents (and I hope that I never, ever teach my children that). And parents learn that negativity from the society they live in. Organizations that are formed to help those individuals and families, therefore, have a responsibility to use rhetoric that does not make the lives of those individuals living with a condition, disorder, or disease worse.

After all, learning to hate who you are--even when that means the challenges-- because of what society says and parents pass on creates more difficulties than it solves. It makes everything harder because instead of families being focused on adaptive coping, in seeing the good, in making dedicated efforts to improve their children's lives, time is lost in a pointless anger and a deeper bitterness.

There are people suffering, people dealing with profound disability, and people, children, with genetic disorders that will shorten their lives drastically. In those cases, even when it's part of their neurology, it's absolutely understandable to view that disorder that takes so much, causes so much pain as something foreign to be fought. Our neurology can misfire on us in so many ways and sometimes those ways cause us serious, life-threatening issues--as Robert Rummel-Hudson notes in calling his daughter's genetic disorder a "monster" to be fought. Sometimes, a different neurology caused by genetic mutations is a bitch--something that takes from the ones we love the freedom to live  healthy lives, or in my husband and son's cases, feels like a ticking time bomb just waiting to go off (in Bob's case, again). Sometimes, there really are monsters to slay or wish most fervently away. It would be foolish and short-sided to not admit that somethings that go neurologically awry have horrible consequences for the people whose neurology it is.

But sometimes, a different neurology, a different way of processing the world, is just a difference, no monsters to be slayed, just skills to be taught, give and take to be learned (on both sides), accommodations to be made--work to be done, but no monsters. Challenges to be faced and overcome or got around (and I'm speaking of the autistic person who does all the work--progress doesn't happen without the individual doing all the work to build skills--we can't as parents do it for them, we can only guide and support).

The problem with the spectrum is that it encompasses both these differences and the severe disability, the crippling add-ons like epilepsy and other medical conditions that make for definite monsters to stand up to and face and fight. People talking about autism get lost in this spectrum because of the huge variations. They see only the autism they know and assume everyone else's is the same as theirs, and that just isn't so. Many parents face what they believe will be bleak futures for their severely impacted children and understandably in light of that seek a cure, and can come to see autism as the monster that steals the child away (I'm thinking of that freaking horrid ad--I Am Autism that AS did a few short years ago). Rhetoric from organizations that serve to foster that atmosphere of choking fear are not helping these families.

At a fundamental, undeniable level we are the dance of neurotransmitters across synaptic divides and electrical signals firing through neurons...we are our neurology, monsters or no monsters, and learning to accept ourselves means learning to live with our challenges, especially when there is no work around.

So much of the rhetoric, though, from organizations isn't about acceptance of this fundamental reality and the need to provide everyone with the appropriate tool kits he or she needs to live the kind of lives we all hope for--satisfying, fulfilling lives with loved ones and friends and work that feeds our spirit. It doesn't mean that there aren't valuable tools to be found at these organizations who cast autism as a scourge that devastates children and families, but that the overall climate is so negative that building adaptive coping skills is hard in the face of that negativity.

So much of the rhetoric is full of this need to fearmonger--to scare--to force parents into handing over money--making them afraid that if they don't do everything now(!), their children will be among the lost, the doomed. So much of it is also about being everything to everybody, and we all know how well that works--it pleases no one fully.

Take the Autism Speaks' mission statement for example:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
That's admirable. Who would argue with that--except it doesn't mean a lot, does it? How? Obviously for the better, but how are they defining better? Notice--they are not. Everybody has the advantage of being able to read into this statement whatever he or she wants to.
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;
Okay, global outreach--because Autism Speaks wants to be the global foundation, not just an American organization--and by including all (causes, prevention, treatments, and cure), they make sure everyone can find something he or she likes--"oh, I don't like the cure part, but I like the treatment, I like the idea of children not having to face the struggles, the issues."
to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Good. Note it led with individuals, too...where the focus should have always been. Yes, parents need support and tools, but autism primarily impacts the person with it. Supporting the individuals actually grappling with autism and the deficits that are imposed because of a disconnect between how our society functions and how autistics perceive and experience the world--that's where it needs to be--the other support is ancillary--and should help everyone cope and function more adaptively. No, it's not easy to be a parent, but it never was supposed to be easy. It's work. The right skill set can make it fruitful, rewarding work.

Here's the thing--note-the rhetoric doesn't say they want to actually HELP any of these people or how they would do it--they want to raise awareness and bring hope. How? Be specific! By providing parent training? Respite care? Job training? Social skills training? Supporting assisted living centers where autistic individuals can live with autonomy, getting the support they need?
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.
Define urgent. Define health crisis. How is autism a health crisis? One voice? What does that mean? Who decides which issues are the most important? The stakeholders in this are autistic individuals, after all, and the families that are being supportive of the autistic individuals.
It is our firm belief that, working together, we will find the missing pieces of the puzzle.
What puzzle? I know it goes with the puzzle piece--but let's operationalize this--who's missing what? Is it society who is missing the vital information that would allow compassion, accommodation, acceptance, and the full inclusion of those with autism? Or is Autism Speaks saying that autism is a condition in which those who have it are missing pieces? I think we know where it probably is, but lets hope that perhaps it's both, although my children are not puzzles with missing pieces. They are incredible people who face their challenges every day with courage and dignity.
Autism Speaks. It's time to listen.
I get what they're doing here--it just doesn't mean anything, and that's the problem. We've got a mission statement set up to please the maximum number of supporters at the expense of any real content.

And that's a problem. It's a problem because it represents the major issues with non-profit businesses that need to bring in revenue and have a business model built on growth and entering new markets. When that's your model, you don't want to piss off too many people, so you pick which groups you can afford to. You ignore the eloquent writings of people like  Amy Sequenzia and Kassiane and other autistics who offer constructive and valid criticism of your organization that could and would make your organization more responsive and helpful to the very people you claim to want to help.

Non-profit organizations should be moral institutions whose bedrock is built on service to the population they're fundraising in the name of. Autism Speaks, unlike the NAA and ASA, is primarily a fundraising organization. It's not built from the framework of service to its community, to its stakeholders, although it is making some effort to mediate this through the use of tool kits, family service chats, video glossaries, and the like. This is a very small part of its focus, though.

Having had the pleasure of working with local non-profits, both in terms of service to its constituents and in terms of fundraising, I have found that any and all efforts are sincerely appreciated. People are treated well. On the other hand, working with a national (and increasingly international) fundraising organization like Autism Speaks, I have unfortunately found an often entirely different climate. There have been numerous occasions on the internet where individuals identified as AS workers have made complete, insensitive asses of themselves. As a volunteer, I have had the opportunity to witness a lack care, appreciation and regard for those people who give their time to the organization. I have been handled at times, like last year when AS sponsored the NAA convention where Wakefield spoke. I have also been genuinely and honestly communicated with by individuals in the organization, individuals whom I respect deeply and consider to be allies.

I am not implying that Autism Speaks does all things wrong, but they often do way too many things wrong, especially when it comes to listening to those with autism who communicate clearly and eloquently about the harm the rhetoric of Autism Speaks is causing autistic people. Autism Speaks is not an evil entity, as some would like to view it. It is a mixed bag, and that is in part because it is trying to be a little bit of everything to everyone in the autism community--it doesn't want to alienate people who can bring in money, and so it often forgets the most important part of an autism organization: the autistic individuals themselves.

Service to the constituents an organization supposedly is representing is a moral imperative. Taking money from individuals who believe you will use it wisely to make lives better and not doing so is wrong. Using your volunteers, who are often parents of children on the spectrum or family members, as nothing more than revenue generators is wrong. If Autism Speaks wants to grow into new markets and continue to grow in existing markets, then it needs to change its focus. Raise money, sure--but make sure that at least some of that money raised in local markets is going back into services in the local market that will help autistic individuals and their families NOW will ensure future growth and prevent volunteer burnout.




5/23/2012

Kicking and Screaming...That's Just How I Feel: Pink Toenails and Fitting In

I get it--I do--Rosie's tired of school--doesn't want to go, and I don't blame her. It's over, no teaching is going on, so why make them go? I know, I know, a lot of the kids love it, the last week with lots of socializing going on, but what about the kids who have difficulties in socializing? It's just a freaking nightmare of aloneness and boredom.

I tried to get her to go to school, walk into the classroom and holler out, "Hey peeps, only two more days for you to get the chance to play with me!" but she won't do it. She giggled, and it made her feel a little better, but it didn't do anything to solve the root problem of not being able to initiate contact or maintain a reciprocal conversation. Bless her heart. I get it. I do. So working with Lily and her to overcome shyness and just jump in with both feet, as I've learned to do, is something we focus on regularly. At some point, you just have to not give a shit what people think and find a way to have fun with the things that make you scared down to your core--screwing with people's expectations is one of the ways I've found to do that.

It works for me.

Sometimes I am surprised with what my kids observe and believe. I was trying to convince Rick to help me out by painting my toenails last night, and the girls were in the living room with us. I cajoled and pleaded, "But all the other moms at the awards ceremony had painted toenails with their tricked  out flip flops! You don't want me to stand out do you?"  Lily immediately yelled, "But Mom, you do stand out. You can't help it!"

Alrighty then, another tactic since Rick wasn't taking the nail polish bottle from me: "Don't you want me to fit in with all the other moms?" Lily again leaped in, "Mom, you don't fit in! You know that!" Thanks, kid, for stating the obvious. Damn, if it's that obvious to a child on the spectrum, it must blindingly obvious to everyone else, right?
pink nail polish-color club nail art duo nail polish

Oh hell. My toes are painted a nice pepto-bismol pink, though. You should have seen Rick wearing my reading glasses, kneeling on the floor, hollering he still couldn't see my littlest toe's nail to paint. Okay, I get it, my little hobbit feet don't have much in the way of toenails, but damnit, I'm trying to conform! I don't want to go get a pedicure, though--screw that kind of conformity. So until I can reliably reach my toes or train Lil, the man's got the job...

Of course, I don't know that anybody is going to notice my pretty hobbity pink toes when my hair is a mix of white blonde, orange, and pink. That probably draws all the focus...shit. Maybe the kid's right.

Oh, okay. The kid is right. I do stand out. I don't fit in. I can live with being a group of one. ;)

5/22/2012

Well...sometimes stopping midway is good, too

So I was set to go purple.
Product view
But first I had to deal with the black hair.
So I used two bleach kits.
Well, this ought to be interesting...

Did I mention the scalp burning?

After an hour and a half of messing with it,
I decided this interesting "strawberry blonde"
can stick around for awhile.
Splat Hair Color Complete Kit, Luscious Raspberries
Maybe instead of purple, I'll do this one.
After all, it is sitting on the shelf 
in my bathroom and it'll be
easier to go purple over the red
versus the other way.

Why, you ask?
Why not? 
:)

My Day...People, It is MY DAY!

The girls are in their last (abbreviated, the heartless bastards--the school, not the girls, of course!) week of school. I am "off"---hahaha, like that's really true--I'm running an online maymester course (why students want to read a 700 page book in two weeks and be tested on it, I have no idea, but as long as they want to do it, I'll facilitate).

Anyway, faced with a summer of girlies at home while I teach a face-to-face class each summer session, I was really, really, really, really (you get how forward I was looking to it, right?) looking forward to yesterday and today, my last two days to be home alone. Yeah, right. Yesterday, I left the house before 8:30 and got home after 2 in the afternoon. So much for relaxing at home.

So today? I ain't going nowhere (okay, technically not true--I have to pick up the boy this afternoon). It's my day. My day to do as I wish.

Oh my. So, first I caught up on facebook. Then I wrote an article at Science 2.0, reviewing a really great book, so go read that review! And now, you ask? What am I doing now, besides writing this? Sitting here with bleach in my dyed-black hair so that I can hahahahahaha make it purple. Sure. That's going to work out well. Did I tell you it took exactly five minutes for me to empty two bleaching bottles onto my hair and rub it in? That's right! I rubbed it in. I didn't carefully section my hair. I didn't ask a friend to come spend three exhausting hours brushing it in. I did a me and splatted that stuff all over my hair. Have I mentioned the burning sensation? No? Oh, well never mind, I'm sure it's nothing..

I only have forty more minutes of the burning to endure. I'm sure it will be fine. No biggie, right? Right?


The directions say that if I want an intense purple, my hair needs to be a light blond. okay....Ummmmmm...how many times you think I'll need to apply the bleaching solution to hair that was dyed black to get it that light? And do you think I'll have any hair left?

So, I'm betting I'm gonna end up with this funky orange, mottled color when I wash the bleach out, don't you think? If I strategically splat the purple around the orange, maybe I can look like a clown when I'm done?

Yeah, that's right. That's how I'm spending my ONE single solitary day alone in the house. Wrapped in a towel, with a towel wrapped around my burning, stinging head. And then I'm going to go make the sink, the shower, and probably most of the back of me PURPLE. Damn skippy.

5/20/2012

Artichoke Secrets

 I have grown artichokes for several years now but never harvested them.
 I love how beautiful they are.
I love the different shades on one plant.

















5/19/2012

When There Are No Roadmaps

Parenting, no matter that it has been done since the dawn of man, really doesn't have any roadmaps at the individual level. Yes, there are more books than any one person could read and as many opinions as there are assholes, but that really doesn't help you when it's crunch time and you are in the MOMENT and need to manage a situation.

In the moment, well, it's hard to sit back and be objective and think about all the behavior shaping techniques that research shows work. It's hard to think fast enough of all the possible consequences, to be outside the moment looking in, judging how to handle the situation.

In the moment, time spools out without pause, and emotions heave. Calm, logical negotiation: yeah, right.

In the moment: this is where my son and oldest daughter live almost exclusively. I am almost never IN THE MOMENT. I am three steps past the moment. I am often everywhere but the moment. There is naturally a disconnect in our communication. I cannot fathom living in the moment without those anchors.

As Bobby has gotten older, become a man, we have had to renegotiate frequently the rules, the expectations, the level of autonomy, everything. He is a grown man and he deserves to make as many decisions about his life as he possibly can. At the same time, he is a member of the household with responsibilities.  There is occasional conflict. Go figure.

Is it fair to say that I think I suffer more from this conflict than Bobby does, that it weighs more on me than on him? Can I really know that? I don't know, and I don't think it's fair to assume. He's good at verbalizing what's on his mind--in fact his pattern is that he has to vocalize everything he's thinking. But what if he's gotten to where he doesn't always vocalize? What if he can hide some of his internal workings? What then?

No roadmaps here. None at all. We're both doing our best to negotiate boundaries and expectations on both sides. It means a different way of interacting on my part, though, and it's often wearying to find the balance between giving him the guidance and direction he needs and allowing autonomy (he needs verbal prompting to accomplish almost all tasks--the only task he does with regularity without prompting is getting his clothes on when he knows he has to go to Meals on Wheels). Everything else requires prompting. I try to make sure that portions of his days are his alone to dictate--who wants to be told what to do every moment of the day? And what would give me that right?

Still, as we progress into his adulthood, we really are without roadmaps. It's all uncharted territory and trying to do the best for him and the best for the family, all at the same time, is challenging. And it's not as if it's just Bobby. Lily and Rosie are right there, needing similar guidance and assistance, and each of them is different.

Autism in our family doesn't look the same. I suspect that it doesn't look the same anywhere, because we are all unique individuals with distinct strengths and challenges. Sometimes it's difficult to remember that what works with Bobby or didn't may have completely different results with each girl. They are all unique, fascinating, wonderful people who need individualized approaches and supports. And there are no roadmaps, just two parents, an extended family, and three awesome kids doing the best we can to create our own way in the wilderness. I reckon we can survive a little conflict if we keep respecting each other's right to feel and be ourselves.




5/16/2012

The Misconceptions of Differences...or why I should not be allowed near blogger before coffee


As I woke to a grumbling brain this morning, percolating away at disparate thoughts and insisting I problem solve, it occurred to me that change is not something many of us deal with well. We may keep it internal, box it up, and not let on to the outer world how much it shakes us up, but I'm thinking maybe there's not a lot of difference in how I feel about change than my kids do. They don't take it well and they're noisy and obvious about it, but inside I'm just as noisy and taking it just as poorly.

I try to keep busy so that my mind doesn't have time to go on hyperdrive with compulsive worrying, and in the middle of a regular semester, that goes pretty well--I am busy and tired (and unfortunately often sick) so there is no time. I'm the rabbit in Alice--late, late for a very important date.

But things here are changing--the spring semester over, the minimester (online) begun, and things have  slowed down enough that there's time to think, to dwell, to worry, to mull it all over and over and over and over one more time for good measure. The girls get out of school in a week and a day...in less than two weeks summer 1 begins...so much to think about, to dwell on.

Perhaps I surround myself with buddhas to remind myself to breathe, strategically arrange roses so that it looks like the buddha is stopping to smell the roses (why be obscure with your metaphors?).  I seek to cultivate those things I do not have: calm; ease; a quiet, still mind. Perhaps I seek the face of God in all the wrong places? Or the right ones? It's early and it's busy and jumbled up there in my mind. Who knows?


Many of my buddhas are in the garden...the garden where I often find a measure of peace, although never a still mind, even though I attempt to become one with moment and all that mumbo-jumbo. One with the moment, I almost have to scoff, but I've not yet had my coffee, despite it waiting for me a mere twenty feet away, hot in the pot, brewed, smelling delicious. However, I am cross-legged like my buddhas but in my recliner, a pretzel, internally and externally, and so the coffee waits, a victim of my busy mind and lazy ass.

Issues, you see, are things we mostly keep hidden to ourselves if we've got any say about it, and we generally maintain a censor, a filter, a plug on what we will share of our issues. Well, we all know people who share too freely, too often, too obtrusively, but that's not what this is about. Plugs are good  until the dam bursts, and then you better be running faster than the floodwaters coming your way.

This, I think, is about how my internal reality is perhaps not always so different from my children's, at least when it comes to changes. Shit, and other things, too, I am sure. They come by their issues and challenges honestly, as the saying goes (but is that really a saying other people use?).

I also think it might be about how loopy it gets up under the hood when I toss and turn at four in the morning trying to incorporate those pesky changes into my reality and make up my mind about how to handle them, and then find myself good and awake an hour before everyone else in the house (except the cats), letting my loopiness show on the internet to virtual strangers, leaving me picturing a clothesline and dirty linen hanging...

But is it? And that leaves me thinking that philosophizing on too little sleep and no coffee certainly is risky business at best.

Buddha, take the wheel?