The Straw Hat Incident

The infamous straw hat.

Like most parents, I decorated my kid's rooms super cute when they were little.  I painted a scene from the book "Where the Wild Things Are", (minus the scary beast), on my son's wall.  I can't even imagine how I managed to find the time to do this since my son never slept and would make major messes if I wasn't paying 100% attention, 100% of the time.  Maybe I had plopped him down in front of a Barney marathon...  Still...  ???

                    (Sorry for the spray painted face.  It was someone else's child in the pictures.                             Oh and there is a Charizard poster on the wall for all of the Pokemon fans :))

Anyway, I decorated my daughter's room with pink, lacy, satin, striped wallpaper and put a very girlie, ballerina bear border across the middle of the wall.  Her room was the perfect princess room for a little girl.  We lived in Michigan without air conditioning, so all of the rooms had ceiling fans.  My son's room had come with a dimmer switch to lower the lights while he slept.  He was very afraid of the dark, so this worked out well.

One spring day my daughter, who wasn't afraid of the dark, told her brother that it wasn't fair that he had a dimmer switch and she she didn't.  My son, ever the clever child, decided to help her out.

I had decided to paint my bedroom a nice tan color and, since I had two young children, this took me a few days.  I had left a paint can in my room, waiting for the next chunk of time to become available so that I could finish painting.  BIG MISTAKE!

My son decided that this paint would be a perfect way to dim the globe light on my daughter's ceiling fan.  Most children would have looked for a paint brush and proceeded to paint the globe, if they would have even thought to do this in the first place.  Not my son.  He found a straw hat in my daughter's closet, which had come with one of her Easter dresses.  He filled the hat with paint and carried it into her room, not noticing, or maybe not caring, that it was dripping out of the hat as he walked across the hall. He held the hat up to the globe light to cover the light in paint and at that point, he noticed that the paint was leaking out of the hat and he must have panicked

Our house was built in 1902.  It had many additions added on over the years.  One of those additions was a one story kitchen with a sloped ceiling.  The roof for this sloped ceiling just happened to be right outside of my daughter's 2nd story bedroom window.  The kitchen had been very dark and slightly claustrophobic when we bought the house, so we had recently had skylights installed and had the roof re-shingled with black shingles.

For whatever reason a 6 year old with Aspergers can think of, he decided that this leaky straw hat filled with paint, should be thrown out of the window and onto that newly shingled roof and beautiful glass skylights.  It wasn't like it was the easy solution.  He had to remove the screen from the window in order to do this.  As he struggled to remove the screen, he spilled paint all over the lacy pink bedspread, giant stuffed bear, satin, lacy wallpaper, carpet and a million other things that would be impossible to clean.

Either the deafening silence finally registered, or maybe I heard the thunk of the hat hitting the roof as I cooked dinner in the kitchen below, but whatever the reason, I decided to go up and check on the kids.  Imagine the shock I experienced when I came upon that scene.  I'd like to say that I handled it gracefully or that the punishment fit the crime, but honestly I think I suffered from temporary insanity.  I picked up the phone, called my husband, who, than God, was almost home, and told him that I was done.  I had to leave the house or risk throwing his son out of the 2nd story bedroom window.  I told him that he had better haul his butt home as quickly as possible to take care of the kids!  I grabbed my car keys and drove away. 

My daughter, now 16, still has that pretty, paint stained bedspread.  She doesn't use it as a bedspread anymore, but she occasionally curls up with it when she is sick.  She still remembers that day and the ruined giant teddy bear.  She had to live with paint covered wall paper and a light dimmed by tan paint from mom's bedroom.  (The paint did eventually get scrapped off.)  We moved from that house a few years later and she got to choose how her new room was painted.  And yes, we had dimmer switches installed in every room!

Centrifugal Force

 Don't let the angelic picture fool you!  Look closer at his expression!

I often hear stories about children coloring on the walls of their bedroom or finger-painting the dining room table, but in my crazy life, these things always go to the extreme.  Any parent of a child on the Autism Spectrum probably understands how 'off the wall' some behaviors can be.  This is a quick story of an 'off the wall' day in my crazy life.

My son was about 6 years old and my daughter was about 3.  I had just returned to my marriage after a brief sabbatical (yes, that's what I'll call it, a sabbatical!).  I had purchased bunk beds for the kids while we lived with my mother for about 9 months.  When I returned from my sabbatical, I put the bunk beds up in the playroom.  I figured that this could be a good room for sleepovers.  I'm not really sure why I thought that my son would have actual friends sleep over, but I guess I was a very optimistic parent.  Believe it or not, it did eventually happen, but that's a story for another day.

So, while I cooked dinner, my sweet young children watched T.V. in the playroom.  It was very calm and quiet.  I've since learned that this silence is the scary noise that is always heard just before all hell brakes loose.  I  set dinner on the table and went to get my sweet young children.  As I approached the playroom, I noticed that the door was closed.  Hmm, I thought.  This is odd.  I opened the door to find the fan on full blast and strange colorful lines all over the playroom walls.  It looked like Spin-Art!  I looked up and noticed colored markers rubber-banded to the blades of the ceiling fan.

To this day, I still don't know how my 6 year old son ever thought to do this.  Who thinks of things like that?!  Did he really know what he was doing?  Did he intend to decorate the room with Spin-Art?  Did he know that the centrifugal force of the fan on high would send the ink shooting out?  He is now 19 years old and a total computer geek.  Science was always his strength, so I'm thinking that he probably knew exactly what he was doing.  But he probably didn't expect it to work quite so well.

I wish I could say that he learned a good lesson and had to clean the whole mess up by himself, but again, any parent of a child on the Spectrum knows that life seldom works that way.  It was too overwhelming  for a 6 year old with Aspergers.  Heck, I think it was too overwhelming of a task for a 30 something year old mom.  I actually went for a long walk that evening and let the dinner get cold.  I couldn't manage to face the mess until the following day.   I took the bunk bed apart, so that he would no longer be able to mess with the ceiling fan, I repainted the room, bought new curtains, put a rug over the damaged carpet and made sure to listen for the silence the next time I cooked dinner.

A trip down memory lane

The main reason I started this blog was to get the craziness down in writing before I got too old and forgetful.  It's amazing how many things I have already forgotten.  Occasionally, my NT daughter will remind me of how nuts I was while raising my Autism Spectrum son.  Occasionally, I get a flash back of my own and I can't believe that the crazy woman in my vision is actually me. 

The most recent memory came about because my daughter was talking to her friends about how she rarely gets grounded compared to their almost constant groundings.  They, of course, said that it was because my daughter had a "cool" mom.  (I was right there, what else could they say).  My daughter disagreed and told them this story to prove to them how "uncool" I really was. 

Halloween 2008.  We had just moved to California from a small town in the mid-west.  For me, it was coming home after a very screwed up marriage and divorce.  For them it was a whole new world.  Amazingly, my son embraced the move.  He felt as if he didn't stand out as weird or different.  Everyone in California was crazy.  He got to start over and be whoever he decided to be.  Who that ended up being was a mildly scary goth dude.  He dyed his blond hair black, bought a black leather trench coat from the swap-meet, a spiked dog-collar, black jeans, black t-shirt, black shoes, black socks, and black underwear. 

I can't even remember if he dressed up that Halloween or if he went as his new self.  Since my kids had spent their youth as geeked out homeschoolers, I talked them into going to the local library's Halloween Dance Party.  My son was 14 and my daughter was 11.  They had one cell phone between them.  They were required to share it. I got a phone call at about 8:00 PM asking if they could go trick-or-treating with a new friend that they had met at the library.  I said yes with some reservation.  I figured that this new friend couldn't be too bad if they met him at a library party, right? At about 9:30, I called and asked them where they were at, so that I could go pick them up.  They said that there were still a bunch of kids out trick-or-treating and they wanted a few more minutes.  They would call me when they got to the next street sign.  They didn't call.  I called them back at 10:00 and insisted that they tell me where they were so that I could come and get them.  By this time I'm freaking out, thinking that this library friend is a gang-banger or a 40 year old pedophile or is leading them to a drug filled party or any other crazy thing a parent starts to think about when they don't really know who their children are with or where their children are at.  So, my son answers my 10:00 phone call and tells me that they are not done trick-or-treating.  I said "Yes, you are!  I'm coming to get you right now!"  He says "Not if you don't know where we are!"  and he hangs up the phone and turns it off!!!!

I know most parents would be seeing red and would be ready to kill their 14 year old.  Guess who I got mad at.....?   My 11 year old daughter!  This is the grounding story she tells her friends.  How her older brother does all of this and SHE gets in trouble.  For what it is worth, I did ground my son too.  My daughter felt that I was being so unfair to hold her responsible, when she didn't even have the phone.  So why did I ground her?  Because she was the one who should have known better.  She should have asked the friend for his cell phone or knocked on a door and asked to use their cell phone to call home.  Or just refused to go any further until her brother called me.  She was neuro-typical and she should have made the logical decision.  She should have known how worried I would be.  She was capable of understanding how this situation would make me feel.  She knew better. 

Looking back at it now, I wonder if I should I have done anything different?  Was it really fair to expect her to act like the responsible sibling?  She reminded me that she was scared of her brother.  He had once knocked her front teeth loose when he was angry with her.  Should we hold our neuro-typical children to a higher standard?  I think so.  We should not let them off the hook just because they have a sibling with Autism.  Would I have held her responsible if she had been with friends in this situation?  Of course.  Did it make a difference that she was with her "older" sibling?  No, she knew his issues and she knew that he did not make logical decisions.  She is now 16 and is an amazingly responsible person.  I trust her.  That is why she never gets grounded.  Not because I'm the "cool" mom, but because she is a "cool" kid.  I'm hoping that I had something to do with that :)

Parents!!!

    It's difficult to remember that not everyone gets me.  Not everyone has had the same experiences, learned the same lessons, or immersed themselves as thoroughly in the world of Autism as I have.  I'm not saying this as a brag.  I didn't ask for this.  I didn't plan it.  When Autism knocked on my door, I tried to slam it shut.  For the longest time, before the diagnosis of my son, I thought that I was an awful parent.  I had so many people blaming my son's bad behavior on me, that I started to believe that it really was all my fault.  I just wasn't consistent enough.  I ignored behaviors that I should have punished.  I let my son get away with murder because it was easier than dealing with his behavior.  I heard it all.  The loudest critics were family members, so it must have been true, right?  By the time the diagnosis of Asperger's was given, everyone assumed that I had managed to find a convenient excuse for my poor parenting skills.  My glimmer of Autistic wisdom has not been easily earned.

    Today I was reminded of how words and actions can be perceived differently by different people.  I've been struggling with a parent of one of my students.  It's the first time that I have not been able to repair a relationship that's gotten off to a rough start.  Well, at least the first time that I've had to continue having a relationship with that person.  Between my family members on the Autism Spectrum and my career as a teacher in an Autism classroom, I've spent many years repairing conversations and helping people to express themselves.  I'm used to having some of the parents that I work with show some characteristics of Autism in themselves.  There seems to be a genetic component.  The signs of Autism can usually be found in an odd uncle, a reclusive grandparent, an eccentric great aunt and sometimes even in the parents that I see and talk to every day.  I'm usually fairly blunt with people.  I wasn't always.  I still TRY to follow the rule that I shouldn't say anything if I can't say something nice, but I have learned to be direct and to say what I mean.  That's why I've been so confused when attempting to communicate with this particular parent.   It seems as if, no matter what I do or say, she complains about me to the "higher ups".   I don't see Autism in this parent and I don't understand her motives or what she is seeking to achieve.  Maybe this has nothing to do with me or maybe it has everything to do with me.  Perhaps my bluntness has caused me to somehow put my foot in my mouth and I'm too far gone to even recognize that I've done it.  All I know is that I'm frustrated and I don't know how to fix it.  We are more than halfway through the school year and I can't figure it out.

    When I bring my frustration up to my friends, they tell me that the mom wants the impossible.  She wants her child to be cured and since I can't do that for her, she will never like me.  They've suggested that I limit my contact and communication with this parent, but that's impossible and frankly, it's not right.  They say that I shouldn't care, that the child will move on in another year and this parent will be someone else's problem.  But I'm the type of teacher that loses sleep over things like this.  I don't want to blame the parent.  There has been enough blame thrown around when it comes to Autism.  I'm a fixer and I want to fix this.  So I live to fight another day and to spend another sleepless night in my quest to solve this communication problem.  I really want to believe that I'm one of the good guys.  I'm not okay with being put in the role of villain.   I'm getting tired of having to explain my words and actions to people from the district office.  There has to be a way to make this relationship work.

Public School

    Every once in a while I long for the days of being a stay at home mom.  I always knew that I wanted to stay home with my young children.  As a pre-school teacher, I had watched parents drop their kids off at 7:00 AM and pick them up at 6:30 PM.  They would have just enough time to run home, fix dinner, feed and bathe their child and then put them to bed.  I always thought that I got the best of their children.  I (being young and foolish) often wondered why they even bothered to have children if they didn't want to spend time with them.  I now know how difficult the decision to return to work can be, and how important it is to stay relevant in the work force.  You never know what can happen and how difficult it can be to return to work after a long absence.

    I had planned to return to the classroom as a teacher as soon as my children were old enough to go to school.  I even tried to put my son in pre-school for a few hours a week so that I could spend some alone time with his newborn sister.  It didn't work.  His behavior was out of control.  He tantrumed for the entire two hours he was there. I was told that they couldn't manage him, and that I would need to find other arrangements.  I tried another placement with the same result.  They said that they had never seen a child behave in this way.  They were worried about their ability to keep him and the other children safe while he was with them.  I should have been on high alert, but I figured that he just needed a little more time to mature.

    It's not like I didn't notice something odd about my 3 year old son.  He spoke like a miniature adult.  He skipped the baby-talk stage altogether.  It seemed as if one day he was silent and the next, he spoke in complete sentences.  People would honestly stop me in the grocery store and marvel at his use of language.  Listening to my son talk was probably as creepy as watching the talking baby on the show "Family Guy".  He also had the same humongous head as that creepy baby.  I used to joke that my sons' head was so huge because it was so full of brains.  For me, the size of his head explained his amazing use of language. After all, intelligence is genetic, right?  I wrote off his upside-down chromosome as the "genius gene" that he had inherited from his father.

    The odd behaviors and tantrums continued, and the much awaited first day of  public Pre-K was a nightmare.  I should have seen it coming.  I should have known that he would have difficulty, but I didn't.  I put him on the bus, did a little dance, cheered a little cheer and happily went off to visit with a friend.  I didn't have a cell phone in 1996, so I thoroughly enjoyed my visit.  I went to pick my son up at noon only to find a principal, at his wits end, trying to keep my son from running out the front door of the school.  My son was hysterical and I felt awful.  After about a week of his tantrums, the school asked me to wait a year before attempting to bring him back.  They felt that he needed a little more time to mature.

    It took him many, many years to reach that needed maturity.  Instead of returning to work, I worked for free at his school.  I pretty much spent every day at his school helping the teachers to manage his behaviors.  I really tried to make public schools work for him.  The school did what they could, but I watched the light in my sons' eyes grow dimmer and dimmer.  His love of learning was being extinguished.  His self confidence was eroding.  Here was my "genius" son believing that he was stupid because he couldn't memorize his multiplication facts.  It was difficult to watch.  One day, another student asked me if my son had cheated on his book chart.  The students were recording how many books they read each week and my son was far ahead of the other students. I told the boy that my son had truly read all of the books listed on his chart.  I saw the look of surprise on the boy's face before he blurted out that my son wasn't smart enough to have read that many books.  Eventually I gave up on public school and began homeschooling him.  That is the part of being a stay at home mom that I look back at with longing.  As crazy as it was, I wouldn't trade those homeschooling years for anything.  Neither would my children.  We all remember that time as being the best years of our lives.  If you knew what life threw at us during those years, this would really surprise you. 

What Do Parents Expect?

    

    The road less traveled has led me in many directions that I never could have imagined.  The most recent one being my role as a Special Education teacher.  I'm in my fifth year of teaching and I tend to identify more with the parents than with the district.  Having been a parent of a child on the Autism Spectrum, I believed that I would always side with the parents over the district.  After all, the public school system hadn't worked well for my own child.  I had resorted to homeschooling to preserve my sons' self-esteem and love of learning.  So why am I struggling so much with a parent this year?  Why can't I figure her out?  What does she really expect from me?

    The way the system works in my district is that students from the elementary district are observed, their files are reviewed and the Program Specialists determine the best placement for the child as they move from the Elementary School District to the High School District.  Our district goes from 7th to 12th grade.  I teach an Autism Focus Special Day Class at the Junior High School level.  It's not my job to determine placement.  It's my job to do the best I can with what I am given.

    My students have a wide range of abilities.  I teach a different subject for each class period.  Some of my students are with me for most of the day, while others only see me for one class period.  I teach Reading, English, Math, Science, Study Skills, and Life Skills.  All of the students go out for P.E. and an elective. I took my whole class out to 7th grade Science last year, but I needed to teach 8th grade Science in my room this year in order to figure out how to modify it for my students in the future.  Beginning next year, I will be in a collaboration general education class for science and will no longer teach Science in my classroom. 

    At the Junior High level, math becomes more abstract.  Many of my students have managed to memorize their basic math facts and have a relative strength in mathematics.  This is usually the first place I look to foster inclusion.  Unfortunately, memorization of facts is not enough to be successful in Algebra.  The only courses offered in Junior High are Pre-Algebra and Algebra.  I usually work very hard to round out the math concepts and fill in any gaps in a students' knowledge so that I can send them out to Pre-Algebra in 8th grade. 

    Since Reading and English require a level of language that most of my students haven't mastered, I rarely get to send students out for those classes.  I currently have three students out in RSP Reading and one in what would basically be considered a low level general education English class.  The point is, that I'm trying very hard to be flexible and create a mixed program that works for everyone.  It isn't easy.

    I wish that parents would/could sit in on some of the general education classes at the Junior High School level.  The language demands are astronomical.   I truly believe that, despite the current climate of education bashing, we are teaching our students at a much higher level than ever before.  The topics covered in Junior High are things that I learned in High School and College.  The students are expected to balance chemical equations in 8th grade!

    So how do I foster inclusion in classes that have such high expectations?  What do I do when parents insist that their child be fully included and the district insists on placing the child in my room?  How do I modify classes that I can never attend because I am teaching my own classes at the same time?  Is sitting in the back of a Pre-Algebra class with an aide, doing a totally different curriculum, really inclusion?  What happens when I agree with the district placement but the parent wants full inclusion? What happens when inclusion actually becomes exclusion due to the wide gap between skills and expectations?  Is it enough for a student to just sit in a general education class?  How can I do a better job at making inclusion work when the gap is so wide?  What do parents really expect of me?
   
   

Curveball

    If my many years of marriage to an undiagnosed Aspergerian* had me taking a few tentative steps on the less traveled road, the birth of my son sent me sprinting down that road blindfolded.  After stumbling down a rocky marriage path, and traveling to a much less hospitable climate, I found myself awaiting the birth of my first child.  Michigan wasn't all bad, there were many things there to love, and as a transplanted Beach Bunny, I was actually looking forward to the first snow of my second winter there.  We were looking to buy our first house and I had settled into my new life.  I was taken by surprise when I received a call from the doctor telling me that he had noticed an abnormality in a routine blood test. 
    I had majored in Human Development in college.  I had worked as a pre-school teacher, an aide in a Special Day class and as a 5th grade teacher.  I knew what an abnormality in the Alpha Fetal Protein test meant - Down Syndrome.  At least that was my first thought.  My cousin had just given birth to her daughter who had been diagnosed with Down Syndrome, so I figured that had to be the issue.  After amniocentesis and genetic testing on both my husband and myself, it was determined that my son had an upside-down long arm on one of his chromosomes.  So did my husband.  It was 1992 and genetic research wasn't as advanced as it is now.  All the doctor could tell us was that my son should be as normal or abnormal as my husband was, based on their shared genetic abnormality.
    The birth was uneventful, as was my sons' infancy.  I didn't notice anything unusual about my child.  Occasionally a stranger would stop me and comment on how alert he seemed to be.  In my mind, babies didn't sleep much, that was what new parents always complained about, so my own lack of sleep was normal and to be expected.  I was able to stay home and care for my son, so there was no input from other caregivers reminding me that there was a reason for the often quoted term, "sleeping like a baby".  Babies are supposed to sleep but my infant son rarely slept for more than a few hours at a time and he would only sleep if he were tightly bundled and in my arms.  Every time I attempted to put him down he awoke screaming. As he grew older, there were other oddities that I didn't necessarily pick up on.  It's only in looking back that I can see the signs, that today, would lead to an early diagnosis of Autism.
     How could a teacher miss the signs of Autism in her own child?  Wasn't I supposed to be the expert?  Well, back when I earned my teaching credential, we were required to take one course on special needs.  That course probably mentioned Autism as a disability that we were unlikely to see as general education teachers.  These were students with cognitive impairments, no speech, and outrageous behaviors.  This was during the "Rainman" era.  Students with this degree of impairment were institutionalized or put in a basement classroom in the public schools.  Sure we had passed laws that forced public schools to educate students with disabilities, but I don't ever remember seeing any students with disabilities at the schools I attended when I was growing up.  I had never met or interacted with anyone who had been diagnosed as Autistic.  The diagnostic manual for psychologist (DSMV) didn't even add the Asperger diagnosis until 1992, the year that my son was born.  Not only had I never met anyone with Autism, I had never heard of Asperger's Syndrome and it would be many years before I would hear of this as a possible diagnosis for my son.

Aspergerian - High Functioning Autism or one with Aspergers Syndrome.