Friday, April 20, 2012

Window to the soul


This is called a truth window. From Wikipedia, a truth window is defined as an opening in a wall surface, created to reveal the layers or components within a wall. When I found this image, I immediately wished people had truth windows. Not to see their viscera-- I've seen plenty of that. But, to see their intentions and emotions.

The Signs- Markings

Back in 1997, I started what would turn into a "sleeve". A sleeve in the tattoo world is a piece or numerous pieces conjoined to form a shoulder to wrist piece of artwork. Although I am probably consider heavily tattooed and I was even a tattoo artist for a couple of years, I am not into tattoo culture at all. I don't care about others' tattoos. And, piercing grosses me out. I eventually quit tattooing because it seemed more intimate than what I was comfortable with. When you were inflicting pain on people, they talked. They shared. I didn't want them to. I walked away.

I started the tattoo work on my left arm as camouflage. It is easier to have people look at what's on top than what is underneath. More about that some other day. I decided, although many people are judgmental about persons with tattoos (although that has markedly changed over the last fifteen years), it was easier. It wasn't my first tattoo which is a great little story in itself, nor was it the last.

The phrase that began the whole piece, done by a talented woman who become a good friend, was a quote taken from an Edward Gorey book. It read: "When quizzed why she did, she replied, 'To be rid of a strange, overpowering feeling.'" Over the years, I have dealt with many people grabbing my arm trying to read it. This is not only rude, but it is enough to send this Asperger's lady into a white static zone instantly. I don't like to be accidentally bumped into, let alone intentionally grabbed by strangers! Inevitably, people would ask what it meant. And, I never really knew. I would share the source and twist away from the unsolicited conversation.

Today, I know what it means. Every day of my life is filled with numerous instances of strange, overpowering feelings. Now, I know why. Strange can be good, overpowering can be dealt with.

You are your father's daughter


A lot has been happening lately... still... always.

I got my girls signed up for kindergarten. I successfully requested they remain together, thus eliminating a possible stressors for them out the gate. During the enrollment, I disclosed Sine's diagnosis and Cosine's pending diagnosis. Thus, beginning many years of a partnership with the Millcreek school district in finding the best education for my daughters.

I finally (after a couple weeks) met with the woman from the IU who is doing support services with Sine in the classroom. She has already given me some insight and ideas. I look forward to working with her throughout the rest of the school year, throughout the summer, and through the transition into kindergarten. She comes across as a kind, emphatic, open, and knowledgeable person-- the antithesis of the girls' preschool teacher.

I am also looking forward to working with the folks at the Achievement Center. Sine and Cosine had their meeting with a psychologist last week. Sine, immediately received her diagnosis and plans for in-home services that would be working with my husband and myself as well as the girls. Cosine will also benefit from     these services, seeing the girls are the same age and always within an arm's reach of each other. This gives me a bit of ease while we are still trying to assess her needs and possible diagnosis.

I attended a presentation by Pennsylvania PEAL Center (Parent Education & Advocacy Leadership Center on parent advocacy. It was EXTREMELY informative and a definite resource. It made me realize what I was told by the Achievement Center psychologist was true. Get everything in writing, and request everything in writing. As un-eco-friendly as it sounds, create a paper trail. And, that is one of the reasons I can't sleep tonight. Because apparently, two o'clock in the morning is the best time to compose a letter to your daughters' school principal because you don't trust their teacher to accurately relay information, events, or facts. And also, it appears to be the best time to begin composing the letter you plan on sending to the principal and Catholic dioceses about the failings and misconduct of your daughters' teacher. A letter you plan to send TWO MONTHS from now.

The two-hour long presentation by PEAL was arranged by the Northwestern PA chapter of Autism Society, a group for parents with children on the spectrum. As a parent of two children on the spectrum, it would seem to make sense I dive into such a support network. However, as an adult ON the spectrum, I find it very difficult to relate and share with others so visibly and desperately reaching out to each other for support. I definitely feel more comfortable in a group of autistic individuals than a group of parents of autistic individuals. And, I am not comfortable disclosing my own diagnosis to these parents for fear I will then be looked at through a microscope or approached for insight when I am, in fact, looking for insight myself. Wait, is that what they refer to a reciprocal? Hmmm. I know I will need to find a balance.

Also, this week I disclosed Sine's and Cosine's diagnosis/impending diagnosis to my father. My father is exceptional hard to read because he doesn't speak much and he is pretty stony. When he does speak, it usually comes across as abrasive and neck-breakingly to the point. And, usually somewhat offensive because of the expletives thrown into the mix. I coined the description that he is only warm to pediatrics and geriatrics. He is a nurse working with men at a veterans's nursing home. And, I have heard he is very good with the men there. He is also very caring and loving to all the kids in the family under the age of six. And, I expect (from personal experience) puberty is the cut-off for him. I have only shared this assessment with my aunt, his twin sister.

Again, he is a man of few words. When I was eight years old, he told me, "I tell you I love you once, that means forever." He has such depth and wisdom, but it isn't always immediately apparent. He was the one to blatantly tell me when I was in early grade school that if I didn't look people in the eye, they wouldn't trust me. He also told me when I was looking for colleges my junior year of high school, that "not everyone needs to go to college". Back then, I thought it was a lack of caring on whether or not I continued my education. But, at the age of thirty-five and three bouts with college later, I realized he meant there are other worldly pursuits that may fit better, be more rewarding, and won't have a payment plan that ends in 2022. My feelings about my degree which has nothing to do with my current employ go like this: it's like paying for a house you can't live in. But, that is another blog entry entirely.

All said, my father loves his family more than he is able to express. I know this. Therefore, I felt I needed to fill him in. Plus, I started to think remaining secretive about all of this was not healthy. But, most importantly, it carried an air of shame. I do not necessarily want my children or myself to become poster children for anyone's autism awareness month event. But, I would NEVER want anyone to read into my behavior, my writing,  or my silence as saying being autistic is bad, should be hidden, or removed. I am, at the age of forty-one, more happy and satisfied with myself knowing now that I have Asperger's syndrome than I was five, ten, or thirty years ago NOT knowing. And, my daughters are still as perfect as they were two weeks before diagnosis... as perfect as they were they day they were born. So, at the end of my conversation with my father, I squeezed in that I was diagnosed two years ago. After telling him I didn't want or expect to be treated any differently, I promptly ended the conversation. I guess I am willing and able to jump over the hurtles with him right now, but not prepared (nor do I desire) to climb that mountain.

Again, it is hard to read my father. Not just because I have Asperger's and can't read 98% of people's intentions or subtle emotions, but because my father show little emotion. His rage and his good humor differ only by the direction his beard moves. So, I wasn't sure how he would respond. He would probably tell you to get up if you were on the ground with two broken legs. He would wrap your wounds and give you crutches, but he would tell you to get up. However, my father was very receptive. Please refer back to the pediatrics or geriatrics comment. He also seemed to be informed about the nature of Asperger's and autism. He was reassuring and supportive. He also had a few select words about the girls' less than effective preschool teacher. Words which I have heard numerous times throughout my Irish Roman Catholic upbringing. Words most often heard on a street corner or in a bar, but in our family frequently heard at the dinner table.

Well, the ticking of the clock next to my desk just caught my attention for the past five minutes, and I think I am losing my concentration. I am going to share a recent email I sent to one of my best friends to wrap this up.

"He did actually tell me you called. I can't find my cell phone... like I ever check it... so that number maybe kaput soon. God only knows where it is. I may find it when the girls graduate from college, and I clean off my desk.

Yeah, work has been a bit of a female dog lately. Just takes one a**hole, one big enough to make up for the other 99% of nice people. Plus, believe it or not, it is a bit stressful working somewhere where you see one to three people die on any given night. Accentuate the positive, I know. I called off last Tuesday. I am usually pretty rigid about only calling off if I am sick. But, I rationalized that 'being sick of it' contains the word 'sick'.

Well, I am up at 2am, because I can't stop thinking. I went to a meeting about parent advocacy last night. Got me thinking I need to write something to the OLC principle about working with and considering (Sine)'s diagnosis and (Cosine)'s possible diagnosis as well as continuing to accommodate the woman from the IU. Whom I met the other day, and she seems like a REALLY sweet and informed person, Kim K. All because, I don't trust Mrs. S. to relay information accurately if at ALL!!! And, if she asks me one more time if I can tell my kids apart, someone is gonna lose a tooth. Probably me from clenching.

Did you decide on a preschool yet? Should I ask? Forget I asked.

Girls are signed up for KIN-DER-mah-GARTEN! Taxes were done by midnight April 17th. And, we priced out the tile for the upstairs and downstairs bathrooms. Designing the new landscaping. Hmmm, time to find some new stressors. Anyone? Anyone? Well, I REALLY REALLY hope to talk to you soon. To see you would be even better.

Did you enjoy the 'just any other day' day?

Meow."

In reading this, I see I am always doing more than perhaps is mentally, emotionally, and physically healthy. But, I get things done. Sharing that I just upgraded my sewing machine to a new Husqvarna (read the history of the company Husqvarna history) to begin a cottage industry doesn't seem to correlate with any opportunities to relax, but I am not a good sitter. I seem to work best when my body is nearly vibrating from all the things to do.

Also mentioned above is a bit about my new job. Perhaps it is job thirty-eight or close to it. I will be taking the opportunity to reflect on my work history soon. And, more importantly, to discuss some of the less then congenial work relationships that have developed recently and some in the past. One of THE MOST DIFFICULT things for me in my life with Asperger's has been navigating the work place. For someone who doesn't go to sleep (yet insists on six to eight hours when not suffering from a thoughtful insomnia) until I pass out, I can say working with others can be the most exhausting thing.

More later. But, enjoy this: Chicory Tip!

Sunday, April 15, 2012

Such an elusive fish!

Grandma Shari referring to Sine's and Cosine's new swimming lessons: "You swim like a fish."
Sine: "I am not a fish."

Monday, April 9, 2012

There's a word for that.

There is a word for that and it isn't "every-inanimate-object-in-the-world-is-against-me". For years, I have been referred to as clumsy. I even refer to myself as clumsy. It is not uncommon for me to drop my keys at least three times while heading out the door. Not every once in a while, not once a day. Just about every time I walk out the door. And, it would not be out of the ordinary to have me knock something over on the counter in an attempt to pick my keys off the floor. It's like a Buster Keaton movie without the hours of choreography. I mean, I blew out all the tendons in my right ankle by simply trying to walk out of a building with a small entry way step. It would have been better if I broke it, the doctor told me. Don't worry, that may happen one day. When people asked me what happened as I hobbled up on crutches, I couldn't even begin to explain. "Well, I was walking and there was this step and..."

The people who know me well know I mumble. What do I mumble? Mostly, under my breath, "Goddamnit!" Or there is a running commentary like, "Why can't I just open this bottle of peanut sauce without half of it ending up on the floor, in my hair, and in my ear?" My husband once told me, "If there is a way to figure out how to drop something, you'll do it." Now, that could sound like some sort of put down to someone who has their panties in a bundle. But, said in the right way... at the right moment, it is gospel. Exasperated from just spending five minutes chasing and picking things up off the floor that I had dropped, I agreed.

I once told someone that when I walk through a door, I can always manage to bump into the door frame. It's true. I am also a professional when it comes to walking into objects which have been stationary for months or even years. I've broken my toes more then once. And, once very badly. Although it has been a while, I spent a great number of years stoving my fingers on larger objects I was trying to manipulate, like basketballs.

I played basketball in grade school. I was tall and slim. Therefore, in everyone's mind,  I was a basketball player. I liked learning the rules and strategies of the game. But, physically, I am sure I would have fit in better at an ostrich race. I loped along, running from one end to the court to the other. Doing my best to be a forward, catching rebounds and praying to god I would pass the ball somewhere near another team mate. People said I was half-decent. But, height was my advantage, not grace.

I also ran cross country. I ran cross country until we started practicing inside the school. That involved running up and down the stairs. I have trouble navigating stairs on a daily basis going slowly and being mindful. Running? Out of the question. I stopped going to practice and eventually quit.

Who can forget the day my best friend in high school tried to teach me to play tennis? I can't, because I got pretty badly injured in the first fifteen minutes of my attempt. Somehow or another, I managed to trip myself with my OWN tennis racket. This ended badly with my face and knee being firmly planted on the tennis court. Bleeding, the effort was abandon.

What kind of gymnastics does a near six foot woman on the spectrum like myself master? The answer is NONE. One of the handful of times I was almost kicked out of my all-girls Catholic high school revolved around my refusal to participate in gym class. More specifically, gymnastics. I made it through soccer, even though I kicked a few of my classmates square in the shins. I made it through square dancing. But, walking a straight line? No. Walking a straight line on a thin, raised wooden bar? Absolutely NOT! It was being seen as defiant, as usual. But, I had gone into self-preservation mode. I knew what would happen. It would be ugly. It would be tangled. So, I hung out on the bleachers with the heshers-- the metal heads, the "bad girls". They were the ones who never hassled me much. They saw my resistance as more than futile. They saw it as anti-authoritarian. I saw it as nothing but frustrating. I had bigger dragons to slay than cartwheels. Of which, to this day, I have never completed a single one.

By now, I am sure you can imagine I was no Isadora Duncan in roller skates. Growing up in the late-Seventies and early-Eighties meant I had my fair share of roller skating parties. I hated them. I couldn't skate. And, when I attempted to skate, I looked like a thirsty man with two broken legs crawling to the poisoned well. But, that's were the action was. I would come home stiff, sore, and with blisters. Having someone ask me to "shoot the duck" carried as much hope as me climbing a ladder to the moon.

Thank god for swimming, skiing, and hiking. Swimming was the most natural thing I had ever experienced. Feeling the currents move past my body and discovering my own buoyancy was magically relaxing. Skiing was smooth. I got it. I wasn't the best, I wasn't the worse. But, it let me redirect some of the static energy inside of me. And, hiking took some this same energy and exchanged it with my surroundings. There is something about being outside that makes me feel very comforted. I can pick up subtle differences in air temperature and air pressure. I can judge the amount of moisture in the air. I can hear the trees cracking, the leaves crunching, the insects humming, and the animals running. These were activities lead by my senses, not my muscles.

We must also consider the finer details. Things like I previously mentioned: manipulating keys, bottles, pencils, etc. The best I can do to describe the sensation is this: your fingers are made of rubber, they want to tie in knots, and you have to press harder to feel the object or move it. I once wrote about the curious condition of everything being too hard. Walking too hard so it seems you are stomping around everywhere. Or pressing on a pencil too hard. Or pounding on a keyboard too hard. When I write with a pen or a pencil, I press so hard just trying to form the words that I create a crater-sized divot in the pad of my finger and thumb. And, usually, the force used on the pencil itself makes each word appear like a canyon on the sheet of paper-- and the consecutive five to ten sheets beneath it. I have been told by coworkers that I hammer on keyboards. But, I dismiss that. I can still type faster than them, even if I do sound like a one-woman drum circle.

Sometimes, I feel I am having trouble distinguishing where I end and an object begins. And, this can make taking a plate down from the cupboard a potential circus act. Yet, I have come to term with it. I realized it was part of who I am before I was even diagnosed on the spectrum. Except now, I have a word for it: DYSPRAXIA.

Dyspraxia, as defined by the Dyspraxia Foundation, is a life-long neurological condition of the "impairment or immaturity of organization of movement." It occurs when messages to and from the brain are not being properly or completely transmitted. Although, many feel it can be confused with certain aspects of autism, from what I have read, I simply view it as a possible co-morbidity. Strangely, the incidence of dyspraxia in females mirrors the ratio of autism at closely one female to every four males diagnosed. The two main elements are ideational ("difficulty with planning a sequence or coordinating movements") and ideo-motor ("difficulty executing a plan, even though it is known"). Again, like autism, the earlier the detection occurs the earlier and more successful the intervention. Dysparaxia can manifest itself in difficulty with speech (making sounds and sentence structure), handwriting and pencil grip, fastening buttons, opening jars, locking doors, using knives & forks, timing, balance, walking, running, and jumping to mention a few. Also, there are problems with combining movements, judging speed, and spatial awareness. Issues with short-term memory and oversensitivity to some stimuli or moderating sensory information have been noted also. Yet, certain strengths have been documented like the ability to switch dominate and preferred hands. And, superior long-term memories have been in some dyspraxics.

Last April, when preparing to participate in a panel of adults on the spectrum, I started to review a pile of school documents-- some over 35yrs old. Most of it reads like an article possibly written by Tony Atwood himself. However, in the realm of dyspraxia, things like this stuck out. In kindergarten, my teacher noted I need improvement distinguishing between common sounds , locating source of sounds, matching the direction of a design, and USING MY HANDS AND ARMS.

My daughters love to dance, especially Sine. However, it is more interpretive and free-form. She does not excel in the midst of her dance class. She gets distracted by the mirrors, the din of the other little dancers, and the music. She usually spins away from the group to her own corner, happy as all get out. Cosine, on the other hand, isn't as interested in following directions as she is getting the teacher's attention to point out mistakes of her fellow dancers or to relay her most recent diatribe. I am pretty sure the dance class is a free-for-all. But, I figure the physical activity and socialization is necessary for their age. There is a part of class referred to as "tumbling". Watching my girls during this unit is like trying to watch someone fold a wooden board like a bed sheet. Yet, as long as they don't seem miserable, they will finish out the year.

I recently signed them up for swim classes. The difference was immediate. The girls seemed more at ease and relaxed in the water. They were both able the execute the tasks at hand with more control. However, Sine has an issue straying from the class. She needs constant redirection-- she doesn't realize when someone is talking to a group, they are also speaking to her if she is in said group. But, that is a topic for another day.

I do a lot of work with them on writing and coloring. It seems like I am taking all the enjoyment out of the task by repeatedly repositioning the crayons and pencils. But, it is necessary. With this extra guidance, the girls are excelling! Sine moves from left to right hands frequently. She is able to convey her ideas and complete her NUMEROUS books without fatigue. And, Cosine is able to write lists of rhyming words and compose letters with confidence. We also spend time string beads, cutting with scissors, and using glue & tape. Time on the computer using the mouse is also becoming more frequent. Not only is dexterity important, but the ability to relate their ideas, thoughts, and emotions is one of my primary goals with them.

Giving them the opportunity to run, swim, and dance may not prevent them from one day dropping a pot of saucy gnocchi on the floor causing an explosion and subsequent splatter on the ceiling, but it will help them understand and direct their own bodies better. Giving them constant access to pencils, crayons, and markers not only allows an artist outlet but it builds mechanical skill. These are things that should not be taken for granted.

I will be more then happy to share an sources if asked.

Good day.

Tuesday, April 3, 2012

The Land of Misfit Toys

As I am jumping through the hoops necessary to get my daughters any help they need-- especially Sine. I am faced with having to "win" my husband over to the idea that our child is officially on the autism spectrum. Even though it has been evident for the last couple years. And, possibly, so is our other child to a degree. I have heard from various sources: my psychologist, my best friend who has worked with autistic children for decades, and the psychologist who gave our girls the ADOS,  fathers usually have a harder time coming to terms with the diagnosis.

I have heard it is like a grieving process similar to the stages of grief when a loved one dies. In some ways, I guess I am lucky that my Asperger's brain doesn't process in that way. I will admit that I was shocked when I was told that Cosine was possible Asperger's and that Sine was far over the cut-off for "classic" autism. And, I was saddened. Some of it, in all honesty, was residue from my own childhood experiences. But, I am sure it simply comes from seeing the obstacles now concretely positioned in front of my children. However, it lasted just a day or two. And, then the logistics had to be addressed. I am good at those. And, I am convinced of the potential for my children's great success if given the right tools NOW.

My husband shared he would do anything for our family, for our children. But, I know he wants to "fix" things like one would a broken clock. I know he is having a hard time thinking our children are just that-- broken. Yet, they aren't. They are just neurologically different, I tell him. I keep thinking of a spectrum rally call I hear over and over, "Different... not less." There will be different ways of doing things with them. Different ways of making sure they get the message. However, he still has a hard time seeing how two little girls we view as perfect need help. I also think he is apprehensive to discuss the differences in our children with others, especially in a world we've learned does not think different is good. With every test result I have him read, every page of the IEPs he goes overs, every time I tell him there are certain traits that are very universal (and can be dealt with), and every class or outing where he witnesses it all himself,  he seems more relaxed... more engaged.

Nothing can be more detrimental to a child's development, whether on the spectrum or off, than two parents who can not come to some sort of agreement about how the children will be educated, disciplined and overall raised. This is even especially true when parents are faced with a detour to "normal" everyday living. It is a one step forward, two steps back situation.

To say I've dug my heels in about early intervention with our daughters isn't necessarily true. I dig my heels in on just about EVERYTHING. It is part of my personality (see Militia entry). However, there was not a choice about helping our daughters. It will happen. We taught them to brush their teeth, because dental health is something parents should share with their children. Teaching your children to initiate play with other children may not be necessary to prompt PHYSICAL development, but we have to admit in our country, world, and among the human race-- social development is necessary as well. Again, we have no plans on dumbing down our children to make them popular. By their sixth birthday, they will begin their, hopefully, life long love of chess. One day, they may be the friendliest kid in chess club. Or if they end up being leader of the Pep Club, I'll deal with it. I just want to know ten years from now, they will not get lost in the shuffle of underachieving. Or twenty years from now, they will not be faced with a long list of go-nowhere jobs because they couldn't navigate an interview or the work force.

My husband is a smaller than small town boy with two degrees, a menacing appearance, a noise motorcycle, a mean guitar, a furrowed brow, and a pillow-soft heart. He gets things done, he can be very motivated, and he is strong. I know I married him for very specific reasons. So, although we are not always going to approaching our daughters' development from the same angle, I know we are working towards the same goals. The lid on that Pandora's Jack-in-the-Box is now closed... for now.

Sunday, April 1, 2012

Whenever you point a finger, there are four pointing back at you.

I have been reviewing all the summaries of my daughters' recent testing, and the IEP proposals. I want to share some of the information about them, and also the process itself.  Reviewing the steps and the outcomes maybe be help to any other parents jumping through the hoops. Knowledge is power. However, as a hospital employee, I am very familiar with HIPPA regulations. I started thinking about this: even though, as a parent I have the right to gain access to and release my daughters' information as I see fit, I wondered how my daughters would feel years from now having certain specific information "out there". So, I have decided to use my own level of suppression. Yet when I think of "A" or "B"  or "One" or "Two", there is an implied order or implied leadership. Or maybe I am just reading too much into it. I am thinking a simple algebraic equation that has the potential for arriving at the same, equal solution. Yeah, that's it! Or maybe I need a square root or two. Hmmm, I do love trig.