Struggling to Understand an Over-Politicized Nation

Struggling to Understand an Over-Politicized Nation

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My grandfather holding the flag at the very first Flag Day. An Italian immigrant, he loved being an American.

I do not usually talk about politics, but I find myself in a precarious position today. Many issues we face as humans have somehow become political, when they are ethical, personal, or simply in regard to human survival. I believe these issues are; the arts, the environment, education, and health. We as a society seem to have lost the ability to discuss these particular topics, without a party slogan, and without thinking that there are only two sides to every issue – Conservative or Liberal, Republican or Democrat. My feelings on human issues that have been politicized deepened today when an article dropped in my news box about the new open carry law in Georgia.  Though I am a pacifist, I have remained respectful that others do not see the world the same way I do, understanding that guns to some are essential to their way of life. I do not understand why the freedom to own was not enough and that we must have the freedom to be battle-ready at all times, in any place.  I feel this new law leaves the political arena, and imposes itself on the health and well-being of others (health being one of the issues I feel is a human issue).  My fear of co-existing in a state I have called home for 37 years has increased exponentially with this law, filling me with anxiety.  After a 10 year hiatus, I even experienced a night terror this week.

This feeling about the new gun law poked at my thoughts and feelings on the other issues that have been politicized.  Issues that have been tortured in the political arena, to the point that the issue itself is obscured by a party stance. It made me think about how politicization has perhaps suffocated the arts (especially in education), turned schools into testing labs, allowed us to blatantly pollute our world, and further restricted healthcare to poor Americans just to express ones opposition of the Affordable Healthcare Act. While many people are stepping onto the shores of anarchy, I ask: What is it you wish to accomplish? Are we really fighting to defend a way of life that allows all citizens to be created equal? Are we making history of which future generations will be proud?  Are we loving our neighbor?

It is in this moment that my autism stands like a stark, cold edifice in the center of my mind.  I get overrun with feelings that conflict with my logic – How is it I can love humanity so deeply while simultaneously being highly annoyed by people?  I cannot understand why society spends millions upon millions of dollars searching for a way to cure me, labeling me as lacking empathy, while they who cast this upon the ASD population are drowning in their own opposition to anything that does not benefit only them.  Is that not the very definition of apathy?

The world whispers to me in beautiful waves of sound.  The music of the human soul, and the music of the earth’s soul in harmonious counterpoint, express an amazing love for one another.  But people are growing increasingly deaf to this musical dance in exchange for the cacophony of human discord.  And to what end?  What we create here on earth we cannot take with us beyond the grave, so why only serve ourselves?  Besides, the only thing we can really do for ourselves is create memories of us in the minds of others.  We cannot control our death.  All else we do is for others – for humans, for animals, for trees, all life in and beyond our immediate scope – doing for them by way of generosity, love, and the types of innovation that leave a better world than was left by our ancestors. Perhaps I am being over analytical, and I do realize that my honesty here has made me a target for a lashing by those who oppose what I value.  I suppose I will have to just accept that.

I will keep my autism and carry it with me forever, as I would rather live this life misunderstood and tyrannized, than to waste my life pursuing an illusory need to be justified.  I will sing.  I will dance.  I will love others.  I just won’t be so quiet about it anymore.

Repair, Realign, Restructure – The Three R’s of Special Needs Education

Repair, Realign, Restructure – The Three R’s of Special Needs Education

IMG_1434I just finished reading a remarkable post by the author John Elder Robison, Early Intervention or Not.  How Do We Decide? .  I had an opportunity to perform at The International Meeting for Autism Research (IMFAR), the same conference Mr. Robison attended, and converse with a few professionals during the opening banquet.

His insightful post brought me back to an idea I had talked about on Facebook on March 28th when arguing why I do not call my services “therapy.”  I mentioned the concept of the three R’s of special needs – Repair, Realign, Restructure.

Most parents want for their children to grow up to be healthy, educated, and independent members of society.  When a parent is faced with a diagnosis such as autism, no matter what age, the news brings about fear and trepidation.  This fear occurs mostly because the trajectory the parent had imagined for their child’s life is now viewed as uncertain.  It is natural to fear the unknown.

Naturally, the parents look for resources on what to think, how to cope, and what do do next.  As society focuses on the headlines generated from the autism industry, we begin to develop literature that presents success as only being possible after a host of interventions, and therapies – and the earlier the better.  But as Mr. Robison pointed out, this barrage of constant services on autistic children may be masking talents. (Mr. Robison makes an exception for children with self-injurious behavior, which I think is important.  I am not at all suggesting that children who injury themselves should be left to continue the behavior.)

Therapy, save private one-to-one therapy provided by a Psychologist or other qualified professional, is focused on what I call the three R’s of special education – Repair, Realign, Restructure.  This is because therapy addresses autism, or other diagnosed disorder, as a whole as if the therapy were some kind of antibiotic.  Rather, therapy should focus on specific complications that hinder that individuals ability to lead the life he or she so chooses to have.

In my own life, I have found my heightened sense of hearing an asset in my quest as a musician.  This quality comes to me as part of the autism package, along with less desirable problems like sensitive vision and overstimulation problems.  However, to pursue therapy for my entire sensory system would remove the hearing I rely on as a musician.  Instead, I have focused on learning how to build an internal gate for my sensory system when I need to shut it down.  How?  By tapping into the other side of my sensory system oddities that come with the autism package – numbness.

Many autistics talk about going from overstimulation to numbness with their sensory system.  Parents may recognize this when they observe their autistic child covering their ears at one moment, and then observe them “acting deaf” as they stare at a blaring loud television.  I saw this problem as an internal resource.  It occurred to me that if I have the ability to go numb, then there might be a way for me to decide when I will go numb.  Using breathing techniques, sitting with my hands on my thighs, and then focusing my mind on the feeling of numbness, I am able to avoid a meltdown in a loud, crowded room.  This may not work for every person with autism, as we are all individuals, but it worked for me.

The buffet of therapies available to the autism world are not useless, but perhaps they are misapplied.  If the therapy is for autism as a whole, and focuses on repairing, realigning, and/or restructuring the person, then we are building a population of socially engineered people.  If we use therapies available today to focus on issues of autism that hinder the individual from growing, then maybe we build a therapeutic atmosphere that allows the growth of a population of unique individuals who just happen to have autism.

 

The Perfect Life

The Perfect Life

Often I have been asked, by conference attendees who come to hear me speak, what I want out of life.  People are curious if my future includes people, independence, and decadence, or a scary isolated existence.  Not that there is anything wrong with living alone, but I do believe most people are shocked when I say “I prefer to live with someone.”

Money continues to be a large reason why I still am not where I want to be, only because we live in a society where access to money is necessary to live.  I’ve tried not to dwell on that too much, and instead try to enjoy each dollar to its furthest reach.  I don’t need millions, I just need enough.  Still, I think there is no harm in dreaming.  It helps us set goals, and is generated from that inner desire to see the word for all its good rather than the bad.  As I have said before, dreaming is the conceptual art of the inner self.

Assuming money is no object, and my life work blossomed just as I had hoped, then what is the perfect life for me?

I love the ocean.  I would want to be as close to the ocean as I could get, ideally in California, though any warm climate ocean town would be acceptable.  The beach at my back door, or at least in walking distance so I could view the waves anytime I needed to be calm.  My plot of land would be the smallest I could possibly have that would allow for my home to fit snugly.  My home would be a Frank Lloyd Wright Usonian style home, possibly like the Jacob’s house or the Goetsch-Winckler Usonian house.  It would have to have three bedrooms, even after my kids move on, because I would want my children to always have a room to stay in anytime they wish to come home.  Being environmentally conscious, I would love to fit the home with solar panels, and use led lighting. The wonderful thing about FLW homes is all the natural light.  My studio would be in home, where I could record, write, and create on my own.

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I’d love to own a Jeep, though I’d love to convert it to a no emission vehicle.  Hopefully, my home would be located in a place where bicycle, walking, or public transit would be sufficient.  I would spend time in town people watching, meeting locals, and learning about the world in which we live.  I would be the owner of an arts school that uses a teaching approach comprised of unconditional love, open to people of all learning types, and offered the most open scholarship program in the US, making sure that even the poorest of students can learn to play an instrument.

Given that my dream means that my financial needs are covered, I would donate most of my free time to helping public and private schools create disability friendly schools with integrated classrooms.  I want the next generation to grow up believing they fit into this world just as much as anyone else.

My perfect life would also include a not-so-perfect someone to live and to share the beauty of life with.  He wouldn’t need to share my interests or be anything like me, just simply be my counterpoint.  You see, to me, love is not like harmony, but really is more like counterpoint.  In music, a harmony supports the melody but is usually secondary to it.  Counterpoint is when two equal melodies are played together to create a complex and intricate sound.  They sound good together, oscillating between supporting the other melody and leading it.  Sometimes the two melodies even argue, but they always resolve in the end.  To me, counterpoint is love.

My perfect life has no specific goals or ambitions for my children.  I would simply just support what ever goals and ambitions they have for themselves, even if I struggled to see it clearly.  Just because we are forever tied together by DNA and by unconditional love, doesn’t mean I have any right or entitlement to insert myself into my children’s picture of their own future.  I must be invited by my children, and continue to love them even if I am not invited.

Finally, my perfect life would leave behind a story that could inspire others, even if it is just one other.  Pain sometimes needs to be shared, so others do not feel alone in theirs.  Yet, beyond that we should freely give away parts of our triumph, not to our own detriment, but in healthy amounts so as to show others that it does in fact get better.  If a spoonful of sugar helps the medicine go down, then be the spoonful of sugar.

There is not much more to a perfect life for me.  Seeing new places in the world is always welcome, and I do hope to travel as a speaker to places outside my home country.  It really is just that calm stability that comes with accomplishment that I seek.

A Monday, Changes – An excerpt from my next book “3 Pairs of Shoes”

First, the three shoes

Red shoes – the teacher.  Red Shoes are slick, and shiny, with slim, wax covered laces.  Her red shoes make a sharp heel sound when she walks down the hallways, followed by a clicking noise, as the tips of the laces tap the sides of her shoes.  When she walks, she means business.  She has much compassion for her students, but she must spread her compassion around to all her students equally.  Close to her students for only one year of their life, she must lead with love, but then let them go as she finds energy to usher in the next group.  She has done this for 20 years now.

Blue shoes – the parent.  Blue Shoes are well worn, way past their prime, and full of deep scratches.  Not having time for lacing, these shoes are open in the back, so she can slide her feet into them at a moments notice.  She loves both her kids equally, but sometimes one takes up more energy than the other, simply because one of her children walks the world in disability shoes.  Her energy is focused on both the short term school year, and the life long projection.  Everything falls down to her, eventually.

Black Shoes – the student with autism.  They are lace-ups with thick gum soles.  They are spotless, and laced neatly, since Black Shoes cannot stand for her shoes to get dirty.  Black Shoes is silent on the outside, but filled with poetry on the inside.  Her shoes may carry her to the places she visits, but her typing fingers take her far beyond the confines of the moment.  She just wants to be happy, healthy, and heard.

A Monday, Changes

Red Shoes

Today, Black Shoes was good in class.  She didn’t have her homework done, again, and said she forgot.  The school has provided each student with an agenda for writing down assignments, and I know I keep my webpage updated.  I simply do not understand why her mother cannot follow up at home.  I never see her mother at school and only met her during registration day.  She has failed to attend other school events where she might see how I do things at school.  I really want Black Shoes to succeed, and I do care for her, but I have 90 other kids I have to pay attention to as well.  Black Shoes does get some help from a special helper, but I think she is capable of much more if she would just focus more.

Today, her mother emailed me saying Black Shoes was having a hard time at school.  Apparently, mom is seeing all kinds of worrisome behavior at home.  We haven’t seen Black Shoes act out or show us any reason for concern.  Maybe mom is just overwhelmed.  All I know is Black Shoes could be doing better.  I am doing all I can.

Blue Shoes

This morning marks the 12th night in a row that Black Shoes screamed in her sleep.  The melatonin is not working.  I have also lost sleep, just making sure she is in bed and staying in bed.  Changes at school have her stressed.  The changes, overall, seem minor, but she just cannot grasp what is happening.  I have tried talking with her, but she just cannot give me any ideas on how to help her.  I have tried contacting the school, but they say she acts fine at school.  It makes me so angry to see a kid doing well, making all A’s, and then suddenly slip into depression and not turning in homework.  I’ve tried getting the teacher to sign the agenda, so I have an idea of what homework she has, and so I can help her, but the agenda is most often empty.  It’s in the IEP, but that seems to make no difference.  Often times the online posting of assignments it posted too late, or not specific enough for me to know what is happening.  Did Black Shoes do her work at school? Does she need her text book?  I check online every night, but I am still finding out weeks later that she has zeros.

On top of changes at school, Black Shoes has a project that is due.  She struggles so much with long term projects because of her troubles with executive functioning.  Despite my work schedule, I have had to find time to do a project with her too.  Why can’t these projects be made to only require of her what she can do alone?  Why can’t she get help at school from special education teachers?  I can’t remember the last time I could just sit with Black Shoes and play a game, or take her out for fun, we know how much I am told by professionals that family bonding time is important.  We are always working, when can we bond?  If things don’t get done, I am the one who is blamed, and so is Black Shoes.  I tried to attend some school functions, but my work schedule clashed with the open house the school had a few weeks ago.  Since I am paid by the hour, missing work means less pay.  Her needs are too expensive for me to not work.

I have tried communicating with leaders and teachers at school.  Some of the teachers respond, and I am grateful for that.  But I can’t write emails asking questions I don’t know to ask.  I can see Black Shoes needs help, but I have no idea what is wrong.  The meltdowns this week are many and I am simply exhausted.  I have another kid that needs my attention too.  But all I hear is, “You should have thought about that before having children.”  I didn’t plan for autism, no one does.  I am doing all I can.

Black Shoes

My stomach hurts again today.  I can’t eat anything but  a few bites of pizza pockets.  Sometimes I can eat my sandwich at lunch.  I do not know why I feel bad.  I like my teachers, but I do not understand what they want of me.  I am quiet in class, even when I feel like screaming, because when I screamed before, I got in trouble and had my favorite free time taken away from me.  I want to ask for help, but I do not know how, or what I really need help with.  I understand everything they teach me, I just can’t always prove it.  So, I get distracted, and I forget what the homework is.  I want to write it down, but I can’t write fast enough when the teacher is speaking.  I am not allowed to have my iPod at school to type my assignments on my calendar.  I am told I have something called an IEP that helps me.  No one asked me to be a part of the conversation.  I may not know what to ask for, but maybe if I hear what the teachers want, I can try to talk to them.  I want to be good at school.

My helper comes in to help me, and I think she is nice, but I am feeling too much pressure.  My brain doesn’t want to work at the speed everyone else wants me to.  I used to get time to cool down in a special room, but that was taken away.  Now I am asked to do more work.  Does no one see how much work it takes for me to sit here and be quiet instead of screaming because my stomach hurts, I am tired, I am confused, and I can’t ask for help?  Why can’t anyone here see my pain?  I have to learn to read when others are hurting, why can’t others read me when I am hurting?  They teach me to express emotion, and when I do I get in trouble because it wasn’t the right time, the right place, the right proportion, or making sense to them.  I just want to scream!  But I can’t, so I hide in quiet places and play games that calm me.  I am in pain all day.  I can’t take it anymore.

When I get home, I can see my mother is tired.  She wants to help me.  She sees I am in pain and tries to tell my school.  They do not see my pain so they think my mom is the problem.  I don’t have to tell my mom I am in pain, but I still can’t tell her what I need.  If I knew what I needed, I would be like the other kids, right?  It is kind of like swimming.  If you know how to swim when someone throws you in the water, then you will swim to the side.  If you don’t know how to swim, you will flap your arms, and kick your legs, and look as if you want to swim, but you still won’t know how to swim.  Having someone on the side screaming, “try harder” doesn’t help.  Someone asking, “what do you need” doesn’t help because you need to swim and you can’t.  It’s too late for a swimming lesson when you are trying to stop drowning.  Save me from the water, then we can learn to swim together.  Don’t just tell me to try harder.  Don’t ask me what I need while I am drowning.

I have feelings I do not understand.  I know they are sad feelings.  All I can do now is block the world out.  I have tried hard to live in their world, but no one is happy with me.  They want me to be like normal kids, but I am not a normal kid, no matter how much they teach me to be normal, and no matter how much I “act” normal.  I am me.  I am a not normal me, but a valid me.  I can be very good at being me, but I need help, not punishment.  Why can’t anyone hear me?  Why can’t anyone see me?  Why is it always my moms fault, or my fault, when I fall?  Can’t it be the systems fault?  Can’t it just be that this is the wrong path for me?  I am tired of hearing about all the other students and being fair.  No one tries to see the world from my eyes.  I have to go to classes and learn to see the world through normal eyes.  Why don’t the normal kids have to see things through my eyes?  Why are they called normal?  Can’t I just be me?  I am doing all I can.

3 Pairs of Shoes is scheduled for release in August of 2014.

What I Wish I Knew as a Student with Asperger’s About Homework and Education

     Now that school is back in session, frustrations are rising in Aspie students and the people who care for them.  Many Aspie parents struggle with motivating an Aspie child who sees no purpose in doing school work on topics they do not care about.  This is tough, especially if the parent cannot see the purpose either.  After all, may parents are settled into a life that does not require the use of a wide array of the topics they covered in school, which becomes more obvious when a parent sits down to help their kid do homework but can’t remember how.
     As an Aspie that struggled through many late, long nights of homework, I feel a need to reach out to Aspie parents with things I wished I knew when I was in school.
 
 
1) Education in America was originally designed to prepare people for the workforce.
     All the way back to Colonial times, we can see a trend in education in America – Socialization.  For example, in 17th century New England, children were expected to learn reading, writing and arithmetic from the family at home.  Schools were established to practice these skills, understand the structure of society and to aid children in socialization.  For children that were to go on to more cerebral jobs such as politics or banking, they would go on to Latin schools or elite private high schools.  After the Revolutionary War, America understood the value of literacy as it was the use of written periodicals that helped America learn of the Boston Tea Party even before the news reached England.  By the late 1800‘s. most states and free public schools making America one of the most literate countries in the world.  Over time, schools evolved to provide a more well rounded education including lessons on culture and language.  Pre-Industrial America saw education as a way of becoming and maintaining as a world power.  More education equaled more wealth, setting us apart from the class warfare that had existed in England before America’s independence.  
     In the 1890’s through the 1930s, American tried to take on a new perspective.  John Dewey led America to the ideas of Progressive Education.  Dewey wanted schools to teach a wide array of topics to help children explore their potential.  He did not want schools to just provide a necessary set of skills for the workplace, but to create learned members of society who could produce social change and reform for the greater good.  However, school administrators were reluctant to the change forcing Dewey’s ideas to be isolated to only a few elite schools.  As the Industrial Era rose, schools began to shape their programs to set children on tracks based on their potential that is measured early on in the child’s school career.  Children suited for cerebral work were placed on a college bound track and children suited for the workforce as laborers were placed on a less academic track.
2) Education serves a different purpose today.
     Today, most American’s remain split on what schools should provide.  However, in a society that is much more technologically and internationally connected than those previous, education must be valued, even on topics we don’t think we will ever use.  Today, we often hear of news from across the globe minutes after it happens.  In one hour of television, we can take in a myriad of opinions and statements without any written proof that such information is even true.  The internet, now available to American’s of all economic levels, can spread information to millions before it is ever verified as true.  I remember, just a few years ago, an email circulated about margarine.  The email swore in avid detail that margarine was horrible for the human body.  What reason did they use to support this?  The email stated that margarine was only one molecule away from being plastic.  This email spread like wildfire, panicking families across the nation.  Most American’s bought into this fact as valid and enough to justify an opposition to margarine.  
     Now, I’m not here to argue whether or not margarine is good for you, but I can argue that margarine being one molecule away from plastic is not a valid reason.  Why?  Because of high school chemistry.  One molecule may not seem like a big difference, but in the chemical world, it is a huge difference.  For example, H2O is a compound better known as water.  It has two hydrogen molecules and one Oxygen molecule.  If I add just one more oxygen molecule, I get H2O2, a compound better known as hydrogen peroxide.  Would it make any sense to stop drinking water because it is one molecule away from being hydrogen peroxide?Even though I may not use chemistry in my daily work as a musician, learning chemistry in high school helped me make a more informed decision about my diet.
     In the “what about me” America of today, education today may not be framed by the school to meet everyone’s individual needs.  However, the more we learn on various topics, the better equipped we are to make sound, well founded decisions in many areas of our lives.
 
 
3) Lack of education historically has led to mass hysteria, slavery, and even the holocaust. 
     I can remember countless stories in history class, and even at home from my parents, where poor and even savage decisions were excused with “we just didn’t know any better.”  Women were burned at the stake for “witch craft” because the general population didn’t understand science.  Slavery was supported by misinterpreted passages from the bible and lack of scientific knowledge.  Hitler supported the holocaust stating that Jews were inferior to Arians and holding Arians back from reaching their potential.  All of this was accepted because information that could have disproved these misnomers were withheld from the people.  Need more examples of entire societies being misled by their lack on knowledge on a topic?   Try the McCarthy trials or the Jonestown suicide.  What about delicate topics like autism being cause by mercury or stem cell research?  Do those in favor or opposed to such topics really understand the science involved or do they just quote what they hear on television or from friends?
 
 
4) Homework is an exercise.
     Homework is an exercise for the brain and for the work ethic.  Let’s face it, most kids come home from school and yearn to spend their time on computer games or posting on Facebook.  We don’t even need to single kids out on this one.  How many of you adults are reading this at a time when you should be doing something else that needs to be done?  As a matter of fact, you may have gotten a hold of this article via a share on Facebook.  The point is that the ability to focus on topic we don’t like, or to maintain working when not being directly observed by an authority figure, are great assets.  We tend to look at homework as a negative aspect of childhood that takes away from play, but why?  If we change our perspective to see homework as a piece of growing up that is just as essential to childhood as play, then perhaps our kids would be more motivated to work efficiently.
     Aspie’s need to be shown that homework is a exercise in education, education is a necessary component for expanding the nations comprehension of truth and the acceptance of people who are born different or oppressed.  Integers and the periodic table could lead our future society to open minds and to understanding the truth about autism.
 
 
5) Laziness or lack of motivation is not autism, it’s an easy coping mechanism.
     I will admit that I was one of those Aspie’s that HATED homework.  I didn’t have someone give me the first 4 points I just made, so therefore I was seeing the world through my own tunnel.  I came up with a long list of reasons why I couldn’t do things.  In the world of autism, activities are either super easy, or ridiculously difficult.  We do not see the middle ground.  As we encounter activities that are too hard, we often use our Asperger’s as a way of not doing the work.  After all, if we exhaust mom and dad, then we don’t have to do it.  We Aspie’s are also magicians when it comes to constructing reasons why we shouldn’t have to do it, which, most of the time, sounds pretty good to parents.
     The bottom line?  DO NOT GIVE IN.  My grandmother used to tell me “I can’t means I won’t.”  We Aspie’s get so used to hearing about all the things we can’t do, that we often lose our self-esteem.  We need guidance through tasks we find difficult and we need to hear “can’t means won’t.”  Are there things we can’t do?  Yes, but this does not mean we should throw what we won’t do onto the pile of what we can’t do.
 
 
6) How do I tell the difference between can’t and won’t?
     As an Aspie, I often took my cues from observations of people close to me.  I so desperately wanted to blend into the crowd so kids would stop being cruel to me.  If my mom hated modern art, then I was to hate it too, after all that must be “normal.”  Therefore, if my mom were to hate homework or public schools, then my difficulties must be the schools fault and not because I don’t want to do the work.
     Mimicking is another coping strategy for Aspie kids who are unable to understand social cues and trends.  As a parent, you might not be able to see can’t in a sea of “won’ts” because our mimicking disguises it.  Yet, what if the parent were to change his or her perspective on homework?  What if parents approached homework as happily and positively as we approach a favorite treat?  As a parent, display a positive attitude towards homework and explain its purpose to the Aspie child as I did above.  See a purpose in each assignment, and then observe your Aspie.  Do some of the cleverly disguised “can’ts” disappear?  After a few months of the positive homework approach, the things your Aspie really can’t do should start to be distinguishable from what they won’t do.
 
 
7) Learn what autism really is.
     The most common educational impact I hear about from parents in their Aspie is “executive functioning skills.”  Did you know that executive function is a theory and that its exact role is hypothesized?  Did you know there are several models and that psychologists do not agree on one in particular?  Did you know that these cognitive functions are theorized to change during the various stages of human development?
     As a parent faced with an overwhelming amount of re-interpreted information on autism, it is easy for us to accept what seems like a reasonable cause for an action in an Aspie child that otherwise cannot be explained.  Before you accept such causes, be sure to gain satisfactory in-depth explanations from your psychologist.  Ask questions, and lots of them, until you have a clear understanding of the proposed problem.  Take time to learn the terminology associated with autism and perhaps even take a basic psychology course at a community college or online.  After all, your child will have autism forever, so it is best to learn what you are dealing with in as much detail as possible.  Many parents tell me they can’t understand the psychology or neurology behind autism.  Is it they can’t or they won’t?  After all, who wants to spend hours researching something they will never use in their personal life, right?
 
 
 
8) Don’t get the wrong idea.
 
     I am not pushing parents to force Aspie kids to do things they are just not capable of doing.  On the contrary, what I am asking parents to do is to carefully assess what their kids can’t do because they are probably more capable than you think.  Dr. Temple Grandin was never supposed to speak and is now a professor because her mom carefully assessed and fought for Dr. Grandin’s right to try.  Be the parent that helps us Aspie’s see our potential and how autism fuels us, not hinders us.  Then when we are faced with the things we truly cannot do, we will have the resources to work around them and the education to build our futures.

When I Was in School – Conversation with mom

I spend a great deal of time speaking about autism in public and helping parents develop life and homework strategies for their Aspie children.  This work is hard, but I feel it is very rewarding to help children avoid the stress and turmoil I had while in school.  Many times, parents will say things like “I can’t imagine you had this problem” or “you are so organized” or the most common, “but it seems your autism is so mild, unlike my son/daughter.”  
 
I know parents do not mean to offend me when they say these things, but such phrases are upsetting to me.  Every time a parent uses these phrases, I am immediately demoted and my hard work goes unrecognized.  The truth is I worked very hard to develop and incorporate strategies that help me function.  In addition to my past efforts, the ongoing work to maintain these strategies encompasses so much of my mental energy that I must plan times to retreat in order to avoid meltdowns.
 
To illustrate my point, and add validity to my plea, I decided to write a two part piece on my troubles in school and how I adapted.  For this first part, I interviewed my mother about how I was when I was young, talking about my struggles in school, my differences and how if affected my life.  In the second part, I will talk about how some of these problems persist and what I do every day to cope with them.
The Interview
For the first time since I went public with my diagnosis, my mother will talk about my struggles in school and what I was like as a child.
Laura:  Thanks, mom, for doing this. You have said in the past that you raised three children before me, my siblings were 17, 15 and 8 when I was born, but that I was different.  What do you mean by that?
Mom:  It’s is hard to outline because it really was just a feeling.  You saw things from a different angle than the rest of us.  You were very dogmatic about your views, even at a young age, and you over-analyzed everything.  With the other kids, if they got in trouble I only had to say with a firm voice, “don’t do that.”  If I did that to you, you would get upset and tell me to stop screaming, even though I wasn’t screaming.  I had to go around the issue to get you to understand what you did wrong.
 
You could do difficult things, but not easy things.  For example, you could do higher math, but you couldn’t multiply.  You struggled to learn to tie your shoes, learn to read, and learn to ride a bicycle.  However, you had an advanced vocabulary and an exceptional use of words, even as a toddler.  One oddity is you could dance at age 4, you could play the violin well at age 9 but you couldn’t tie your shoe until you were 12.
 
Here is an example of how advanced you were; you came to me and said, “I tink I am going to put on my coke and glugs because it’s berry, berry cold outside.”  You couldn’t be any older than two, but you always talked in complete sentences, even though you sometimes stuttered.  It wasn’t stuttering like in the King’s Speech.  It was stuttering entire phrases like you couldn’t get the words out fast enough.  This was still very advanced speaking for a child.
On the other hand, you didn’t like change, at all.  You didn’t like certain clothes because you didn’t like the texture of the fabric or the color, especially if it was yellow.  You said yellow gave you a headache.  Once, when you were an infant, I put out flowers while you were napping.  When you awoke, I brought you into the room with the flowers and your entire body stiffened up and your eyes locked on to the flowers.  Most infants don’t notice these things and even once kids do, they don’t stiffen up or freeze like you did.
I can’t really explain this any better, you were just different.
Laura: I have been told by my teachers that I showed exceptional talent in dance and music.  What did you see?
Mom:  Anything in the arts field you caught onto very rapidly.  If you heard a song once, you could play it.  In dance, you watched a class you weren’t even in and you caught on to the steps.  So, the teacher, Ken Passman, came to me and asked if you could dance in the show.  You did really well, every step was right, but because you watched it from the doorway, you did everything backwards.  You didn’t know to change perspective, but you knew the steps.  Even with instruments, you could just figure it out on your own, like with the piano and the guitar.  Even with the violin, you learned very quickly, played in tune and never squeaked.  Never.
Laura:  When I was in school, I struggled a great deal.  What areas did you feel were my weakest?
Mom:  You had trouble understanding written directions. Every night we would sit down to do homework in the kitchen.  You would try to work and then get frustrated and then I would have to explain the instructions to you.  Once you understood the instructions, you would do it.  It may have had something to do with your reading.  You had trouble reading and understanding what what it meant, but you could memorize your spelling words flawlessly.   You could memorize anything.  At age 6 you memorized all the trivial pursuit cards.
 
Other problems….I never understood this really, but you would come to answers that were correct, but you couldn’t explain how you knew it.  It is sort of like you playing the piano.  You don’t just play chords, you play complex classical tunes with the proper fingering, even with no instruction.  How do you do that?  There were certain things you were not taught, but knew and knew in great detail.  Sometimes you would speak in detail about off the cuff things that shocked us all.
 
With school, you never understood the concept of school.  You didn’t understand why you had to go.  You said you knew all those things so you didn’t need to go.  You especially hated the first two weeks of school when they reviewed last years material, and you liked to take every Wednesday off.  Yet, you loved to learn.  I think it was the approach schools use that didn’t appeal to you.  You liked learning at your own pace and you don’t filter out anything.  All the things the teacher would say and all the text in the books were all equally important.  You couldn’t understand why they wrote a paragraph if you only needed to know a part of that paragraph.  It was like you felt you had to memorize verbatim everything at school.
Prioritizing was an issue too.  For example, lets say you have a list of things to do.  One might be to make a cup of tea and a piece of toast.  You put the bread in the toaster, which means you can check that off the list.  Next you make the tea, but as you are making the tea, your toast starts to burn.  Instead attending to the burning toast, you would ignore it and would finish the tea.  You wouldn’t know which needed your attention first.  You had trouble deciding which things are more important, not in a selfish way, but you are just unable to prioritize incoming events.  You still do that.
Laura: What about emotions.  Did they affect the way I performed?
Mom:  You would prepare and prepare and prepare for a concert.  You were meticulous and conscious about what you had to do, but then we would get to the concert and discover you forgot to bring your music, or your violin.  You seemed to get overwhelmed with the excitement, which hindered your ability to stay organized.
Emotions would make you freeze.  No one could look at you and know if you were enjoying yourself, or were upset.  I would know you were upset because you would play your violin or rearrange your bedroom, which I found strange because you don’t like change.  
When it came to school, you were always frustrated.  ALWAYS.  If we had known then that it was Asperger’s, I probably would have put you in a different school where they had people who could deal with autism.  I would have had ammunition to get help for you, and it would have relieved my mind a lot.  I couldn’t understand why these things happened to you when you seemed so capable, but a diagnosis would have given a real reason making solutions available.  You were so intelligent, I couldn’t see why you struggled through school.  Knowing autism tells me why.