Grandma Shari referring to Sine's and Cosine's new swimming lessons: "You swim like a fish."
Sine: "I am not a fish."
Sunday, April 15, 2012
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.
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.
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.
Saturday, March 31, 2012
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
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
Wednesday, March 7, 2012
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.
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.
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.
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