When it rears it ugly head or great last day!

This morning I woke up early to attend a group focusing on the female profile within ASD. Can't imagine getting a more perfect and pertinent topic for a woman on the spectrum with twin girls on the spectrum. So, I made my way through the deserted Saturday morning streets of Toronto's financial district . It reminded me of the possible beginning of a George Romero movie. All is quiet, and then ZOMBIES! I made it to the Sheraton without a single bite mark by 7am. I figured it was going to be one of the most personally rewarding seminars of the weekend. But... then... when we were all streaming into the conference room someone suggested group circles. I froze. I could suddenly recall every group circle I'd had been in since about second graded streaming by my eyelids like a high speed slide show. And, then I left. I couldn't handle the butterflies that started or the tension rising in my shoulders. What if someone asked me a question? Were we going to take turns? I didn't want to play. Those are the times I feel disappointment in myself. Did I just miss a great opportunity simply because ten other people might ask me to say my name? Yes. However, I waited until after its completion to go back,  taking a moment to briefly explain the structure made me uncomfortable. It is NEVER my intention to insult anyone by turning away from them while they are talking. I wanted to make that clear to the VERY nice people directing the group. I did put my name on an email list. And, I hope more information can be found online after the fact. It is one of my main directives to work more with young girls on the spectrum in my community. Lending my positive experiences and mistakes up as life lessons to them. More research on my part will only strength any programs created in conjunction with others here in Erie, like Janet Pawlowski.

The keynote speaker of the day was Alan Evans discussing the Structural Connectivity in Neurodevelopment. Now, this is my kind of brain candy. When working on my degree in Liberal Arts with two minors at Penn State, one of the minors was psychology. While studying psychology, I realized most facets are still too closely rooted in its philosophical origins and loosely subjective. Then came neuropsychology and neuroscience to save the day. I still have a soft spot in my heart for those subjects. Plus, working in a surgical intensive care unit now makes me very familiar with many of the tools used in the research like MRIs and EEGs. Studies like these put into words the feeling I have that my brain is functioning differently. I am seeing, hearing, deducting differently. Is it the more gray, less white? Less calories with better taste? Is that possible? Yes, and show me! Please. Again, once I go over my notes (translate my handwriting which is ridiculous to even me, the stenographer), I will break down each session, retelling with my opinions inserted here and there. Can you see my brain was like an open bottle of vinegar duct taped to an open box of baking soda? I do wish I would have extended myself more to the other grantees.

The ride home was a labor. It is Victoria Day weekend in Canada, which apparently means everyone hits the road to go open up their cottages sprinkled along the Lakes. Stop and go for the first half. Then an hour at the border. I tried to remain patient, but the idling use of gas kills me. The border guard was rude, but he didn't hassle us. I had the wherewithall to realize he probably wasn't in the mood for jokes about tropical birds, ash beetles, zebra muscles, or illegal immigrants. I am surprised Kristy Korea didn't haul off and punch me a few times this weekend, especially while driving with me. This is a shocker, but traveling with me or spending more than eight consecutive hours with me can be a bit trying. I'll admit I can come across as argumentative and less than patient... often.

I arrived home to find two little mermaids in the bathtub. The two main reason why I went to IMFAR in Toronto this weekend. Sine greeted me with a song. A complete song. And, even thinking about that now chokes me up a little. It doesn't sound like a big deal, but Sine usually can't maintain an interpersonal exchange like that long enough to complete even half a song. She was telling me she missed me. Cosine showed me her digger bee "bite". At bedtime, I took the girls up separately-- reading to each of them alone. They rarely get to spend time with me one on one, letting me get to know them each better. I am thinking it needs to happen more to help Sine with her reading/phonetics delay without slowing Cosine's second grade reading level down. But, it lets them each talk to me uninterrupted. And, the three of us all need some communication skills practice!

When we were finally all in bed saying our good nights (Daddy needed a motorcycle ride after three days with the girls alone), I was reminded again of why I do EVERYTHING I do. Cosine rested in the crook of my arm while asking me whether or not Sisyphus died, what the peak of the mountain looked like, and how big was the boulder. Oh, and did he wear a toga like Greeks and Romans. I tried my best to fully answer them all. Sine, as she lay draped across my belly, asked me if the Earth would exist in the future and what color the Sun would be as it started dying. We discussed how Earth would burn up as the Sun expanded and how new planet & suns could form from the dust and gases let over. Then we talked about things most five and a half year old girls talk about-- princesses. More specifically Ethiopian princesses as we listened to the aria of Aida by Verdi. I may not be a typical mother, but I am a good mother. One glad to be home with her Dumplings.

IMFAR so far

We arrived in Toronto on Wednesday... late. As I expected, I started talking about something on the 401 and completely forgot to get off on the 427. But, now, I know a guy who knows a guy on the Westside of Toronto who makes a great falafel. Thank goodness, Kristy Korea was able to keep me sane. And, force me to laugh now and then. The best jokes are born out of increasingly stressful situations. Just ask Groucho Marx. We managed to get checked into the hotel by 9:30pm. Feeling hungry and deserving of a beverage, we went to a place called Jack Aster's. We chose that bar, because nowhere else near by seemed open. Geeesh, there were at least five TVs in every square foot in the place. Thumping music blaring. And, all I wanted was a sandwich. I ordered a basket of bread. We left, returning to the hotel. The Strathcona, built in the 1940s, has been refurbished to look kind like an Ikea showroom. The room is simple, but that is all we need. By the time I fell asleep, I was already missing my daughters. However, not as bad as when I went across the country to San Francisco.

On Thursday, I woke up early. Showered and hit the pavement (after dressing, Canada is liberal but not THAT liberal). I made a promise to myself I would utilize this conference to upmost. I got to see the introductions by the IMFAR, Autism Speaks, and the Simons Foundation representatives. Then I was able to catch the keynote speaker, Ruth Feldman speak on Bio-behavioral Synchrony and the Development of Social Reciprocity.  Then I sat in on an Invited Educational Symposium about Friendship in ASD throughout the Lifespan. That cluster of discussions included: The Beginning of Friendship- Friendship in Preschoolers with HFASD, Using Parent Supervised Play Dates to Improve Peer Relationships for Elementary School Children with HFASD, Friendships in Adolescence: Developmental Challenges in Those with ASD, and Friendships and Social Activities in Individuals with ASD in Adulthood. After, I had my photo taken with the other grantees. The representatives for Autism Science Foundation have been very friendly throughout these couple of days. Again, I would like to express my gratitude for the opportunity this granted provided. And, John Elder Robison for posting the link which motivated me enough to apply.

After a pizza break, I went back for the award ceremony. I would like to say I snuck Kristy in so she could have somewhat of an idea as to how I am spending while she had the opportunity to explore Toronto-- but I would never do that. I found Susan Folstein to be someone I would like to know more about.  Her work with twin studies and ASD parents with ASD children are very close to home. I absolutely LOVE that Temple Grandin took the time to emphasize more work be done on sensitivity issues. Mostly, because that is THE main thing I feel is most important to the person with ASD themselves. Sure, in a social world one has to learn to socialize and communicate. But, that is difficult to even consider when you are being bombarded by sensory issues. And, if more research is to be done on sensory issues, we have to move a little further out of the nursery with our test subjects.

We returned to the hotel for some pub food and an early bedtime.

I woke up this morning early enough to see Susan Daniels from the NIH. That was informative. Tracking the data and the funding. Something more concrete to soak in. How much are they spending on autism research? Now I know where to look, www. iacc.hhs.gov.  Michael Lake from the Canadian Parliament then gave a few words of encouragement to the field of research. After that, I got to listen to Bernie Devlin speak about the Common and Rare Genetic Variants in the Etiology of ASD. Even when I was studying the basics of neuropsychology, I always found myself drawn to the biology of the codes animo acids to build the enzymes needed to regulate EVERYTHING in our body. He was pretty engaging. Next I sat on a symposium focusing on Biology-based Classifications and Predication in ASD: Promises and Pitfalls.  It included: Critical Clinical Needs in Classification and Prediction in Older Children, Adolescents, & Adults with ASD, Analysis of Imagining Patterns Using Pattern Recognition Methods, and Cognitive Neuroscience Approach to Early Identification of Autism. I, unfortunately, didn't stay for the last presentation. I needed some lunch.

After lunch I bopped around a little between conference rooms to catch a bit of things all happening at the same time under the catchalls of Core Symptoms and Early Developmental Processes and Trajectories in ASD: Infant and Toddler studies. The presentations I saw were as follows: Developmental Course of Symptom Severity in Preschool Children with ASD, Assessment of Social Communication in Infants a High Risk for ASD, "Sticky Attention" in Autism, Developmental Trajectories of Attention to Social & Non-social Events as a Function of Chronological & Mental Age in Children with ASD, ASD Toddlers Present Deficits in Their Ability to Track Social Cues of Others, Measuring Interactive Developmental Pathways in ASD, Unique Acoustic Characteristics of Children with ASD, and Motor Development and Its Relation to Cognitive and Language Development in Children at High Risk. Next, I attended an update on the DSM-5 recommendations. Packed! With all the controversy surrounding the changes that was what you could consider the peek of drama at a research conference. Everyone handled themselves well, though. The final block of presentations for the evening were a scientific panel focusing on the Challenges for Children with ASD in School. The first focused on transitions into school age after early interventions and on teacher/student relationships. I found this timely considering the issues I have been having with the girls preschool teacher AND that I am in the process of setting up meetings to choreograph the girls' transition into kindergarten. Next in the line up was a presentation on Academic Engagement of Minimally Verbal Children with ASD in School. I wanted to get a little insight into other ends of the spectrum, especially if I plan on doing more work within my community. After that? DINNER.

I am now listening to Kristy Korea tell me about her trip to the Toronto Art Museum, trying not to be too jealous. We'll go to dinner now, maybe heading out for more pub food and early bed. I plan on going to  one Special Interest Group at 7am tomorrow morning focusing on the female profile in ASD. Then, time to head home.

I have been taking copious notes. I will share more information and opinions once I am home. I think the drive back will be better, now I have the route in my head and just need to flip it. I can't wait to see the girls, and give them the little dresses I bought them. I have spent little money, which is good. I have been able to focus on the conference without too much distraction. But, I will have to come back to Toronto again soon. I feel like I should have extended myself to more people here. But, I didn't. I was able to navigate all the baby powder, banana, and coffee breath odors. I let people bump into me without completely losing it. All in all, good trip.

I apologize for any typos or sentence fragments. I am writing this on a foreign laptop in a foreign room in a foreign (but western) city. More later.

Great grants

Here's the link to the Autism Science Foundation website, listing me as a grant recipient. I suppose if you follow this link and then their link and then my link, etc-- it will be like holding a mirror up to a mirror.
http://autismsciencefoundation.wordpress.com/2012/05/14/better-know-an-imfar-grantee-melissa-shimek-and-meagan-thompson/

If I leave here tomorrow... oops, TODAY!

If I leave here tomorrow... oops, TODAY!

My trip to Toronto for the IMFAR - International Meeting for Autism Research is approaching quickly. I feel like I am missing something. I have had my car serviced for the drive: oil change, new fuel filter, alignment, a new spark plug for good measure, and other fluids checked as well. I have my hotel reservations, and will call to confirm shortly. I visited the hotel website many times, looking at pictures of their rooms. I looked up numerous public parking options around the hotel. I have reviewed maps of Toronto and my travel routes NUMEROUS times.  I researched rail stops, bus stops, and possible walking options. I glanced through the schedule for the Toronto opera for the weekend. I made a list of stores selling vinyl in the area.  I have a mental check list of all the items I will be taking in my bag. I've investigated the exchange rate. I researched the average temperatures for the week. This is how I prepare.

Whenever I travel, even if it is to a new place in my hometown, I look at maps. I visual the roads, the nearby landmarks, and traffic flow. I have to do this because if I don't, I will find myself in the middle of my journey freaking out. Not only will I be trying to read street signs while trying to maintain the speed limit, but the sun could possibly be too bright, a song I don't like could possible be in the radio, or I could potentially spill my coffee. It is times like those which make me realize how stressed out I can be over "normal, every day" things. I take it for granted now, after forty years. But, what appears to others as obsessive over-preparation or not "going with the flow" is simply a security blanket in the making for me. I train myself ahead of time. I make myself familiar with will happen or what could happen. However, sometimes, this translates into a rigidity once the ball starts rolling. I know there will always be unplanned events. Detours, shortcuts, delays, surprises, etc.  I try to stay flexible enough to jump over those hurtles. Although, I might look like a giraffe leaping over a mole hill, I can still do it. I can do it best when I slow eliminate the background stimulus. Focus on the change necessary and integrate it. This is where I usually get a "relax" or "what's the big deal?" from neurotypical folks.  I won't get into the quelling of rage that occurs when someone tells me to "relax".

So, hopefully, you'll have gleaned from this that I am REALLY anxious about this trip. I guess it is a big deal that I received the travel grant. I should be and am happy about it. I will try to be gracious about having my photo taken, although I don't like having my photo taken. I figure I should be receptive to other's questions. Yet answering someone's questions usually leads to them answering questions, and me having to listen. So, do me a favor people, BE INTERESTING so I can look INTERESTED! Just kidding! Yet, I am so interested in what this conference potentially holds, I've reviewed the schedule for days- trying to pick and choose between many presentations I would love to see. Some happening at the same time! 

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!