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.

Like Sands Through the Hour Glasses, So Are the Days of Our Autism

This is a letter to Janet P. aka my psychologist. Last year, I sat on a panel of AS adults at her request. And, this year, I am asking her help in becoming more involved within my community. If you are trying to find a pulse, it is best to locate a heartbeat. She has been very active within and instrumental to the AS community for many years now. I am also reaching out to her on various ways to approach my one daughter's definite diagnosis and my other daughter's possible diagnosis. It has taken me weeks to get back to her after initially reaching out to her and then having her reach out in turn. I've been a bit busy. I've been a bit stressed. This is a quick recap with limited details of my last few months. A few names have been changed to protect the innocent and not-so-innocent and the hapless bystander.


Janet P.,

I am sorry it has taken so long to get back to you. It has been very hectic around here, at least for me. Cosine and Sine both received ADOS testing. My close friend, Aunt Flea, got me in touch with Bob G. -- a former colleague of hers. As I already knew, Sine tested on the spectrum, but even more towards straight up classic autism then I expected. Significantly over the cut-off in many areas. And, I guess because Sine's traits always seemed more glaring, Cosine's behavior always seemed more typical. But, she actually tested as being borderline. She did exhibit some traits-- misuse of pronouns, circular logic, atypical play patterns, lack of empathy, etc. However, Bob interpreted that Cosine is perhaps Asperger's if anything at all. I am not so concerned about her developmentally. Eventually, she may need some "sessions" prompting her in some areas. Intake at the Achievement Center didn't feel Cosine needed any intervention on their part-- but Sine is set up to have an evaluation with a psychologist for a diagnosis mid-month. I also got in touch with the IU5 for county, trying to get some early intervention started for these last few months of school. After their two hour observation and further testing, their plan with her is to work on things like eye contact, approaching others to play, and asking for help when needed. Basic things. However, they tend to lean more towards Asperger's. It still amazed me how little they seemed to know. Like, I heard them discussing, "Now, is it a SYNDROME or..." I felt like I could have answered more of their questions myself (think I am about half way through reading everything in print about autism-- HA)! And, how arbitrary the diagnosis seems depending on whom you are speaking with. They can only offer someone to be with Sine two times in the classroom a month. And, they told me it gets even harder to get services once the child is in kindergarten and  is no longer considered early intervention. Once the Achievement Center does their diagnosis, they have offered in-home sessions. It would be working with my husband and me more so. Teaching us new approaches to help the girls-- mostly Sine. All in all, I am feeling good about what is happening thus far.

It almost seems like people are being overly cautious in their approach to the girls because of all the backlash about over-diagnosis and the possible changes to the DSM- V in the realm of autism spectrum disorders. Or maybe a lack of information on how AS manifests itself in girls and women.

The experience of the girls preschool teacher telling me, IN THE PARKING LOT IN FRONT OF THEM, that my daughters were not socially ready for kindergarten (but academically could skip kindergarten) AND that she would not recommend they move on was one of the most horrible things I have ever experienced. Not only did I tell her at the beginning of the year that we suspected possible Asperger's with Sine, but also that I  was always available for any discussion, any time. We heard NOTHING all year long, except a small handful of times the girls were having trouble listening. Again, in the parking lot. And, other parents had been approached the same way, so I thought nothing of it. However, in spite of my anger and outrage, I have used the situation as a catalyst to finally address the suspicions I have had for years.

My husband has been having difficult with some of this. He is very reluctant to have our daughters LABELED. I tried to explain to him that I would rather the girls be "labeled" with autism now and receive the early intervention they need, then to be called a "loser", an "under-achiever", or a "disruptive student" later. I still remember the backs of many of my report cards. That said, my husband even made passing comment about MY baggage, but then tried to say those weren't the words he was looking for. I think he is afraid to answer any questions his family might have, people who still refer to an challenged or disabled person as "retarded". Or maybe just to admit our daughters aren't as perfect to everyone as they are to us. HOWEVER, he made it clear he will do anything necessary to help the girls and the family. But, still most of the weight of organizing all this has fallen on my shoulders.

I do not want to change the girls in any way, nor even put them in "special" classes. I want to give them the tools they need to be happy and successful in their lives. And, in addition to all that, I am trying to figure out what I need to do to enroll them in kindergarten. And, they started swim classes, and they are signed up for a nature summer camp at Asbury Woods, and they are still going to dance classes, and they are still going to story time at the library, and visiting the art museum and the children's museum and the environmental center... AHHHHHHH!

My new job is still a bit stressful. Again, it is just dealing with the people. The computer programs were understood in a day or two. The terminology? A week. I can handle the traumas, the open hearts, etc. The hours aren't the best, but I am used to 2nd shift. It is just the people, mostly the nurses. I really wish I could work in a cubicle, pushing numbers all day. That would make me happy. But, I am doing what I have to do for right now. Within a year, I will want different hours so I can spend evenings with my daughters when they are out of school.

And, I guess it is kinda big news. I was awarded a $1000 travel grant to attend the IMFAR conference in Toronto in mid-May. Here's a link: http://www.autism-insar.org/index.php?option=com_content&task=view&id=28&Itemid=79. It includes all travel expense like gas, hotel rooms, meals, and the cost of the convention itself. I had to write out a proposal (which is what I need to discuss with you) about what would qualify me, what I am currently doing, and what I plan to do after attending the conference. The line up looks amazing. I am interested in the children's aspect (more behavioral) because of the girls. And, for ME, I am interested in the neuropsychology and genetics. Lots of both. I booked a hotel room for three nights. I will be driving up with a friend who will not be attending. It is a little overwhelming-- especially since I will have to meet with people from the group itself, possibly be in photos, provide links to anything I am writing about the conference to be shared on their site, etc. All of that doesn't bother me as much as the potential for people bumping into me or touching me just increased about 1000 fold. And, I was hoping that being at a conference on autism would free me up a little to actually say things I know I shouldn't say to people like, "I am done listening to you now." Ha, just kidding.

Part of my proposal, which I will included a copy (so you can see what I am thinking), spoke to working with others in a supportive manner. I feel I would be most comfortable working with others on the spectrum. As a parent of a child(ren) on the spectrum, I know there are other support groups out there for PARENTS. But, I am concerned about kids having a place to go where they could ask questions they wouldn't feel comfortable asking teachers or parents. Especially girls! But, maybe even a group where women can discuss things together in a non-judgmental environment. I just recently read that three autistic MEN were appointed to Health and Human Services committee on autism, and I immediately though, "And, the woman???" The ratio is one in every four-- now maybe one in five. Where's our one? I know there are women writers who have already tackled many autism issues. But, one of my favorite authors died yesterday, and it is a reminder of how much I have wanted to write all my life-- if I could sit and quiet my brain long enough. I have tons of notes here and there (filled a couple suitcases even). I have been told I have amazing stories, but when the words move around your head like they are in a blender, it is daunting. I try to keep up on my blogging, mostly for my benefit probably. But, so much is happening these days, it is hard to find a moment to even sit still without dozing off. I would like to do something-- to help, I guess. I figured someone like yourself would be more clear on where the need is and how best to address it. Would you be willing to work on that with me? I would love to even share some of the stuff I see or learn at the conference afterward.

I have also looked into the neuropsychology and applied behavioral analysis programs at Mercyhurst. But, when I am already staring at a $425 a month student loan, I balk at the idea.

I have to admit that I am very stressed even though these are all positive things happening. Or just I am finding the positive in them. Typically, my stimming has increased monumentally over the last couple months. Lots of rocking and my finger muscles are getting a work out. Also, in my best efforts of escapism, I have realphabetized and recatalogued my entire vinyl collection over the last few weeks.

Well, I know this was a lot to read. Sorry about that. Please feel free to call me or let me know when I could call you. 

Melissa

Oxford's in a blender

Many, many things have been happening around here lately. Things I know I want to or need to write about in this blog. I'm still licking the fresh wound of a horrible experience with my daughters' teacher which finally got me in gear to get the girls ADOS testing and setting up appointments with early intervention before they start kindergarten. And, I finally started a new job after leaving my previous job (which makes well over 35 jobs now). Also, I have been thinking about some other sensory issues I want to share about my time here on the spectrum-- the noses knows.

All of these things have been writing themselves in my head for weeks now. In some ways that is a good thing, because I can pull sentences out of my head like a magician pulls a string of handkerchiefs out his mouth. But, it is bad in the way it becomes overwhelming when I am trying to prioritize. Setting up the appointments for the girls is more important than WRITING about how the girls responded to the psychologist. Trying to acclimate into the mini-society surrounding my new workplace is more important than WRITING about the subtle aspects I am trying to catch. Planning a trip to Toronto to attend an international autism research convention because I am thinking about going back to school (again!!!) is more important than WRITING about my hotel reservations. Get it? I finally do.

As I mentioned, these things are all writing themselves as they happen. As a friend told me once, "You write like you talk." That makes me a great essayist but not the best Southern Gothic fiction writer like Faulkner. Well, I guess if all my characters where Pennsylvanian women who came from the Great Lakes rust belt, I could sell a book or two.

I want you to imagine with me what the inside of my head looks like as these things form. First, take a decent-sized edition of a dictionary-- Oxford's will do. Now, put it through a shredder, being sure to save all the little bits. Next, take your every day average glass fish bowl and dump all the papers bits inside. ALL THE PAPER BITS! Make them fit however you can. Okay, we're almost done. Take the nozzle of a vacuum cleaner, turn the cleaner on reverse, and stick the nozzle in the bowl. There you have it! Now, watch the bowl closely. Every once in a while you will see a word swirl by or even a couple of word clinging together to form a phrase.

When the writing actually takes place, I grab fistfuls of scraps from the bowl, taping them back together in an order that mimics what I am trying to convey. Easy enough. That all said, there are some things on my minds I am going to be sharing with you.

A rose by any other name

If we were to know bacon by the name of "rose", it would still smell like bacon. I have been trying to formulate a response to certain articles and changes that are being purposed around Asperger's and autism diagnostics. Recently, I read an editorial in the New York Times that I found a bit upsetting and disturbing. I often applaud the Times' ability to print as close to both sides of the story as you can get (no matter if done under a "liberal" label). However, to see someone vent about their own personal issues under the guise of changing how thousands of people see themselves is shameful. Sir, write a letter to your mother and tell her you're a big boy now. Tell her you didn't like the way she raised you. Tell her you're not a "nerd" anymore. But, keep myself, my daughter, and any other adult or child with Asperger's out of your self imposed dilemma.

If I gleaned properly, I could take home that my daughter is not "retarded" enough to be considered on even the tip of the autism spectrum. I should learn to just realize she is a loser and move on, huh? Well, my daughter has Asperger's. My daughter is not disabled. She is just different. And, different does not hold any negative connotation in my mind. Apples and oranges are different. Some people prefer oranges over apples. But, that is ok. I like both, especially apples with peanut butter.

My daughter (GES) started showing signs of Asperger's at a very early age. She refused to make eye contact. She physically resisted it. And, if she was persuaded to do it, the exchange was extremely brief. She would cover her ears and, basically, shut down when dealing with loud noises or even the noise of crowds. As she grew older, her temper tantrums seems more severe. She would hit herself when frustrated. She had difficulty with speech to the point of getting a battery of hearing tests and therapy. She wouldn't go play with other children when entering a playground. She would obsessively talk about Scholastic books, regardless of what was being discussed at the moment. She would spin in circles. She walked on her tippy toes. She loved to dance, but didn't seem to have the same flexibility or agility of other children her age. She had issues with toilet training. She would line her toys up, instead of use "imaginary" play. She resisted kisses.

And, many of these issues continue to this day. She is now five and a half. Some of these characteristics would seem somewhat normal if they existed independently of each other. But, they don't. Plus, GES has a twin sister. MAS is extremely bright, too. For example, she reads at a second grade reading level (with great comprehension). She does not exhibit all the same symptoms as her sister. She manifests some of the characteristics of high-functioning autism and/or Asperger's, but doesn't hit ALL the bullets. This only makes GES' traits seem more glaring. However, they are both beautiful, talented, loving, brilliant children. Spoken like a true mother.

Myself, I could careless if my daughters become the prom queen or president of the student council. In some ways, I would prefer they don't-- many of my most successful friends avoided those trappings in high school. And, too, I don't necessarily want my children to be viewed as abnormal or atypical, IE. broken. I want to know what I can do to help my children live a fulfilling, happy, and productive life. GES' diagnosis and intervention will help her do just that. With hard work, I hope she does come to a day where she is able to socialize with less awkwardness and handle a barge of sensory stimuli without shutting down. But, when that day comes, it doesn't mean she will no longer be autistic. It just means she will be better equipped through years of education and intervention.

It is no different than teaching your gifted basketball player how to play baseball. He may learn the game well, even succeed. But, that will not make him any less of a gifted basketball player.

I experience some of the same issues as an adult with Asperger's. "But, you look normal." Or, "No, you don't have Asperger's. You're just a jerk." And, this is a good one, "Nah, you have friends." It has taken me forty plus years to build a haphazard skill set which allows me to navigate social interactions with the grace of a crippled buffalo. I am proud that I have had "epiphanies" throughout my life telling me things like, "Don't always say what comes to your mind out loud." Every once in a while I am told I am abrupt or abrasive. But, now, I can go out in public with a certain degree of ease and comfort (that may last only a maximum of fifteen minutes). I can hold my own in a conversation, and with extra effort, not interrupt people as much... AND even give people a turn to voice their concerns or opinions. This doesn't mean I am not on the spectrum. I still have sensory issues that are very distracting and can effect my mood quickly. Too much fluorescent light, too much whistling from a co-worker, too much perfume at the grocery store, or a collar on a shirt being too high on my neck. But, I have learned I don't need to flip out about those things or voice my agitation to everyone around me.

People believe what they need to believe to get them through the day. But, just because you decide you don't believe in unicorns and Asperger's doesn't make me suddenly disappear... or my unicorn, Sir Fuzzy the Duke of Rainbowville.

The Signs: What's in a name?

I enjoy giving nicknames. I really enjoy giving nicknames. It is part of who I am. It contains equal parts of cataloguing, endearment, and entertainment. Most everyone close to me has a nickname. My children are collectively known as The Dumplings based on an early sonogram of them. Individually, they are Skinny Bear and Mare Bear. My mother is Big Red. I have a saying, "Big Red bowls a 300." My husband is The Big Fuss. And, I like to say, "Here comes the Fuss. Here comes the Fuss." I refer to my friend Danielle as Meow-meow because I like to end my conversations with her with a simple "meow". My other friend Kristy is know as Kristy Korea because she is from Korea. Many other nicknames exist: friends, family, co-workers, and even strangers. Some people have been given numerous nicknames. And, then there's me. I have a some nicknames. My family refers to me as The Botch or Botchie. And, many friends have learned to know me as Militia or Militant.

After high school, I attended a near-by Liberal Arts college. I had taken courses there when I was in high school during summers off. And, I felt comfortable there. I knew where the Whippy Dip was. I had concrete memories of watching the fire department do controlled burns while sitting across on the curb, tripping on acid. I knew some locals and a few current students. However, I landed there because I never bothered to do much else. I had expressed an interest in attending a natural science college in Maine, but got confused with admissions. I looked into a school in Colorado, but got confused with admissions. My high school guidance counselor provided no guidance. However, he said something to me I have carried with me every day all my life since he uttered the statement.

"I will read about you some day-- either for winning the Nobel Peace Prize or for ending up in prison."

I set that apart because it truly expresses how apart I was. I will probably refer to this quote throughout my life. I managed to maintain average grades with absolutely no effort. The teachers either loved me or hated me. The ones I viewed worthy of my respect usually tried to offer me encouragement and extra reading (whether it be physics or Greek tragedies). However, they were often as frustrated as I was. Why wouldn't I try harder? Why was I disruptive? Overall, why couldn't I get my sh*t together? The teachers who didn't like me wouldn't even speak to me when I intentionally shouted "hello" to them in the hallway-- even when we were the ONLY two in the hallway. Oh, well, four wasted years.

With my foot in the door to what I viewed as my next four wasted years, I found myself associating again with the misfits, the punks, the stoners, and the teachers. One day in that first autumn, sitting on the rolling lawns of a crunchy leaf-blown campus after a trip to the cafeteria for some rice, I was called Militant. It stuck.

 I only stayed there for three semesters. I knew from day one I had no intention of pursuing a degree in Fine Arts Painting. But, I had to act like I was doing something... anything. Before I left, I asked my boyfriend at the time (my first true boyfriend), why that name? I didn't get it. I mean, it kinda sounded like Melissa. He explained it spoke to the rigidity in my thinking. My overall commitment and conviction to things I believed were true. My inflexibility. My air of self-righteousness. The "my-way-or-the-highway" persona. The "with-me-or-against-me" mentality. I was shocked. How could I be so misrepresented? I was flexible. I listened to others arguments for a while, until I got tired of listening to them being wrong or poorly informed. I was gentle and caring, when I wasn't agitated that people were preventing me from doing what I wanted to do. I was sad. That sadness faded, but the characteristics remained.

A few years later I would return to college. This time to study neuropsychology with a minor in writing. I befriended a guy I used to sell skateboard parts to back in high school. I now refer to Johnny as Whackjob. My daughters refer to him as Uncle Johnny. We took a symbolic logic class together. I loved that class and I liked John. Almost ten years later, he would introduced me to my husband. He calls me Militia. That I can understand, it sounds like Melissa. It's more clever. It still holds some of the same connotations, but on a more acceptable battlefield. I know John wants me on his side in the Theatre of War. Eventually, I would embrace the name. Using it as a moniker, a tag, and a by-line. It has a better ring to it than simply being known as abrupt and abrasive.

Analog

I have very vivid memories of the first time I chose music to play on/in any type of device. The piece? A hand-me-down vinyl copy of the Beatles' Revolver. At 4yrs old, I played it on my Mickey Mouse portable record player. The case opened to show Mickey's face on the hollowed top. The needle was hidden under a white gloved hand at the end of a plastic molded arm in the shape of a striped seersucker sleeve. Watching the vinyl spin, I played it over and over again. I alternated between that LP and a 7-inch from the animated Hobbit movie that'd "ding" when you were to turn the page. Hours and hours and hours. It was the next step up from turning the key on my aunt's music box all day long. I sat on the same sky blue rug under the cherry desk moving up in the mechanical world. Repeatedly, I lifted the arm up and try to figure out what the needle was reading in the grooves. This is years before I ever heard of Edison and his is wax cones.

Later, in early puberty, I would blow the grooves out on my first copy of Ziggy Stardust and the Spiders from Mars by laying on my bedroom floor while staring at the swirls in the plaster of the ceiling with a mega-huge pair of headphones on-- listening over and over and over again . A diamond tip carving through molded plastic. I still own that particular copy; it is filed next to the second, playable copy. During the progression toward that Bowie LP, I discovered the difference between stereo and mono. I eventually figured how to assess the speeds (whether 78, 45, 33, or 16rpms) needed based on groove size and spacing. I learned the different materials and mechanisms needed to press a record. I read about how bugs makes shellac.

A few historical markers in my life revolve around LP acquisitions. The first time I received my own LP at Christmas, ChangesOneBowie. And, the first time I used my own money to purchase an LP, Roxy Music's Stranded. I didn't even know you could read the spine of a jacket to find an artist's name. I can probably still remember when I bought each record in my collection as well as what I was doing when I first listened to its tracks. Each one, each time are all significant to me.

Around the time of the Mickey Mouse turntable, I figured out (with a bit of help) how to thread tape through a reel to reel deck. My father would set up the RCA and 1/4" jacks, telling me about input and output. I flipped through stacks of cardboard boxes with various names and dates written on them. I watched the heads engage and read the tapes. Recording LPs by the Kinks, the Rolling Stones, and the Beatles usually coincided with other little busy work projects like magnetizing metal objects with a battery. Soon, I would realize tapes and magnetics would work hand in hand. And, a little over five years later, I would discover how to recorded my own data from new PCs on to cassette tapes.

I also remember the first time I inserted a cassette tape into a player. I picked the Beatles' Abbey Road. I can still sing through every song, probably in order from that recording. If you haven't figured it out yet, I liked the Beatles. Mostly, because my father liked the Beatles. We would ride around in his cherry red El Camino on weekends, driving through the country side and finding bridges to stand on. We'd listen to the music on his new cassette player, very hi-tech for the times. We rarely talked. A couple years later, I received my own first cassette from my uncle along with a pair of tiger-eye earrings. The Best of Blondie christened my first "boom box". This piece of equipment would engage me in my love for radio-- especially AM radio. I would sit in front of it, slowly turning the dials back and forth while trying to find stations and messages from other cities. I still take great joy in trying to tune in AM stations. It relaxes me. And, listening to CD sets of secret codes transmitted over airwaves is just good old fashion fun.

I later went on to purchase the same recording of Best of Blondie vinyl. Always back to vinyl. I like the sound, the sheen, the way it reflects light, the jackets, the liner notes. I never truly trusted tapes after something mysterious occurred in my bedroom during my freshman year of high school that caused all my cassette tapes to click intermittently regardless of what devices I played it on. However, like many children of the late Seventies and Eighties, I fondly recall various mix tapes made for me by others.

I am still having problems embracing CDs. I do own some... ok, alot. And, the idea of MP3 downloads is sort of silly to me. Like paying for water. But, I am slowly reconciling myself to that.

Soon, I will document my first interactions with instruments and amplifiers. I am sure you all want to know what brand my first tube amp was, right? And, film. That might be next. Knowing the title of the first silent movie I ever saw, where I saw it, with whom, and at what age will give you great insight into my soul.

The signs: T.Nougat

As I have previous mentioned, since my diagnosis, I have been seeing signs that presented themselves throughout my life. Certain classic behaviors. I will refer to them as signs. When some of these things bubble up, I will share them if I can. Some I will later write more about, like stimming and documented behaviorial issues (all in note form now). These are just drops in the bucket. And, the bucket has a whole [sic].

Back in the mid-90's, I was in a band called T.Nougat (a mix between sweet gooey candy and the influential band T.Rex). We played bars, radio stations, and colleges. Yes, we rocked Bennington College hard! It was the first time I felt truly engaged playing music with others. And, having the other two members being a long-time friend/roommate and the other a live-in boyfriend, we shared a "cerebral intimacy" as we stated in our press pack. We shared a lot of free time together in and out of the practice space in the basement (see previous Spontaneous Combustion entry). We played out about once a month for quite a while. We befriended other bands. We had fun making studio recordings, DAT tapes, and four tracks. But, live was where the greatest communication took place and lifelong bonds continued to form. We sang songs about ponies, clowns at carnivals, female cops, cute Polish girls (using polish on their toes), books, hats, and TLC (tiny love chunks). And, we did a few covers like Can, The Stooges, Elton John, and Gang of Four.

Yet every night as the show crept closer, the higher my anxiety would rocket. Sometimes, I'd get physically sick. Sometimes, I'd go stand outside in the cold. But, I was always ready and on time. Once I took the stage, it would start. The slow rocking back and forth, from one foot to the other. I would stand with my back to the audience, sometimes with my eyes closed... and rock. I would look at Joe the drummer and then Jason the guitarist in a repeated cycle when my eyes were open. And, steady with the rhythm-- rock. It wasn't the classic stadium antics of "rocking out". It was just rocking. A close friend of mine would draw this to my attention one day. I retorted, "It's like autistic rocking... it makes me feel better." This was almost 15yrs before my diagnosis.

I still rock back and forth sometimes. Usually, you'll see me up against a wall in a crowded room, rocking from the tips of my toes to my heels. Waving my hands in grand gestures while looking at the ceiling like the words I am saying ar written there. But, I am comfortable with this now. If you see me do this, it usually means I am relaxed with whomever I am speaking to. However, if you see me squeezing my thumbs tightly in my fists with my eyes moving back and forth (left to right, left to right) then you know I am uncomfortable. You know, I would prefer to leave the situation and go rock in the corner... with or without a bass guitar strapped on.