The Mix

After teaching in an Autism Focus Class for 3 years, homeschooling various Spectrum kids, raising my own Spectrum child, and earning a Masters in Special Ed.- Autism, I thought that I was about as expert as you could get in the field of Autism.  When my opinion about a particular student not being on the Spectrum was ignored one summer, I was truly offended.

Since not all Special Ed. teachers choose to work summer school, I would occasionally get kids who were scheduled to go to other programs in the district.  The summer of my 3rd year was insane.  Not only did I have my own students who were entering 7th and 8th grade, the district had decided to leave my exiting 9th graders in my room for the summer as well.  They had scheduled to have a non-autism, special ed. teacher teach the class for the students with Autism who lived on the other side of the district since the regular autism teacher was taking the summer off and my class was full.  They had a student who was scheduled to go to that other class in the fall who had some severe behaviors  Since the other teacher did not have experience with Autism, they decided to put this student with me for the summer.  I had never seen a child quite like this one.

The student was so bright and academically capable.  He was as verbal as any other incoming 7th grader.  He could explain to you why he was upset and he apologized profusely if he did anything wrong.  He recognized when he was out of line and made excuses for his behavior.  He was very, very hyperactive and impulsive.  I have only seen one other child as hyperactive and impulsive and this child and I later found out that the two boys were cousins.  He didn't have any obvious stimming behavior.  He was socially outgoing and wanted to be everyone's friend. He wanted to please adults and could be very sweet.  The issue was that he heard things that weren't obvious to others.  My first thought was that perhaps he might have an acute sense of hearing.  My own son could hear a whispered conversation downstairs, while he was upstairs with a T.V  blaring in the background, so anything was possible. 

As with most students the first few days of summer school were the honeymoon period.  He was great.  He had a behavior aide assigned to him who worked well with him. She took him for frequent walks out out to play basketball to calm down and release some of his excess energy.  He had figet toys to keep his hands busy.  I had a "sensory room" divided off by a large refrigerator box, set up in our borrowed classroom, that he used often. (All special ed was on a high school campus for the summer, not in our own rooms on our own campuses.)  There had been a few meltdowns and so we knew what could happen, but all things considered, we were managing.  The problems began when the district realized that they had overstaffed the aides for summer school.  They were required to eliminate the aides by seniority.  They chose to eliminate this child's aide and give him an aide who usually worked with visually impaired students.  I went to the director and begged her not to take his aide away.  We were already struggling with this student's behavior and changing aides would be a huge mistake.  They did it anyway.  So, of course, things got much worse.

From then on, I evacuated my class on a daily basis.  Actually, I evacuated my class many times each day.  I would call down to the office for help as the student destroyed the classroom.  Help would take forever, if it arrived at all.  The "sensory room" was quickly destroyed, the items broken or removed due to them being used as weapons.  I did everything I could to keep my other students safe, but I was devastated that they were losing their opportunity to maintain their learning.  I started packing a bag for the classroom aide to grab on her way out with the other students.  It had worksheets and pencils, so they could work outside.

The problem that we were having was that we couldn't successfully predict his behavioral outburst.  His hearing issues became more clear.  He was hearing voices.  He would hear someone say something mean to him and he would attack whoever was closest, thinking that they had said it.  It could be a non-verbal student, or a student who wouldn't ever think to say something mean because they were not tuned in to others around them.  My smaller, meek and mild students, became the most frequent targets.  For some reason, this student realized that my bigger, higher functioning students couldn't be the ones who were saying mean things.  Maybe it was because they would fight back.  I found myself putting my body between him and the other students to protect them as the aide attempted to evacuate them.  Thankfully, even though I'm not a huge person, I'm pretty tough.  And he was pretty small. 

As the summer drew to a close, I raised the question of his diagnosis.  I really wasn't seeing Spectrum in this child.  I had never received his file, even after repeatedly asking for it, but I wondered how the elementary school had come up with their placement decision.  I asked the Program Specialist to find and review the file before sending him off to the Autism program on the other side of the district.  I had no personal stake in the placement of this child.  I just wanted to make sure that he was where he needed to be in order to get the help he needed.  I also didn't want to see another group of students get abused by him.  The Program Specialist told me that it was just a part of the Spectrum that I hadn't seen before.  I'm not sure if I had ever been so offended in my life.  I actually had more education and experience with kids on the Spectrum than she had!  I'm not sure I said a few choice words or perhaps it was just the look in my eyes, but she knew that I was questioning her authority and expertise.  The next thing I knew, she had placed this student in my class for the upcoming school year.  Lesson learned:  Do not piss off the person who decides placement!  (Gosh, I hope my district never reads this or knows that it is me....)

As time has passed with this student, I truly don't know what his diagnosis should be.  I see some issues with understanding social cues, but I see more Emotional Disturbance issues than I do Autism issues.  I'm beginning to think that he has a mix.  His mother has admitted to hearing voices too.  She says that they both speak to the dead.  Maybe that Program Specialist was right.  Perhaps this is part Spectrum and part something else and therefore, in her words, "A part of the Spectrum I haven't seen".  I have now seen a few more students like this one, to some degree or another.  I'm calling them "The Mix".  These are kids who have both Spectrum and something else.

I'm still not sure how best to serve these kids in the public school setting.  I don't believe it is the right choice to put The Mix students in with our most vulnerable population, but then, where do they go?  As this student prepares to leave my program for high school, I am seriously concerned for his future.  I don't believe that he was best served in my program because other adults on the campus excused his behavior because he was Autistic and in Special Ed.  He is too academically capable to be in Special Ed., but too Emotionally Disturbed to be in regular classes.  He is too much work for an RSP teacher who has a much larger caseload than I do, and he is too Spectrum to go into a regular E.D. Program.  Where does he fit? 

As annoyed and frustrated as I was about the placement of this student in my Autism class, I feel sorry for the new Program Specialist who has to make the decision of placement for next year.  His file is full of conflicting opinions on his diagnosis.  Autism experts have been swearing that he doesn't have Autism since the beginning of his entry into Special Education, but the School Psychologists have continually reclassified him as having Autistic-like behaviors, so he continues in the Autism programs offered in the various schools that he has attended.  Like I said, I think that both sides might be right and that there is no ideal placement for this child.  I fear for the future of these Mixed kids.  My own nephew is one of them and he attends the elementary school that feeds into my junior high.  I will most likely eventually get him in my class and then it will be personal.  I will have a personal stake in this.  What will I do when that happens?

Zombie Apocalypse

I often joke about how if there is ever a natural disaster, I'm sticking with my son.  He has all of the survival gear already packed up and ready to go.  The part I don't usually mention is that the reason he is ready for the end of the world is because he lives with an incredible amount of anxiety on a daily basis.  His world is so unpredictable to him that he feels the need to be ready for anything.

I can remember when I first realized that he was seriously preparing for a major catastrophic event.  I was sitting at the end of his bed talking to him when he was about 13 years old.  It was winter and my feet were cold.  I stuck my feet under his mattress and I felt something hard and cold.  Not knowing what to expect, I gently lifted the mattress with my feet so that I could just peek a little and see if I could figure it out.  What I saw surprised me.  He had knives and shanks under his mattress.  He had taken screwdrivers and other metal objects and filed them into points to use as weapons.  When I asked him why, he said that it made him feel safe.  I, of course, immediately checked him for signs of cutting and promptly reported the discovery to his psychologist.  I truly felt a great deal of fear with this discovery.  Was I raising a mass murderer?  Was he planning to kill me in my sleep?  Why would he feel the need to arm himself?  Had something horrible happened to him?

After many counseling sessions, it came out that he didn't feel safe in his own home.  We didn't live in a bad neighborhood, quite the opposite.  Why wouldn't he feel safe?  Over the years I have come to understand the anxiety behind his actions.  He doesn't feel safe anywhere because he can't predict what others will do.  He has limited theory of mind.  He can't put himself in someone else's shoes and make a logical assumption of what they might be planning. 

He now has a Zombie survival plan.  He has a backpack full of rations for his loved ones' to survive for 30 days post apocalypse.  He has a solar powered battery source that can be used for running a cell phone or a laptop computer.  He has maps of the drainage system for a fast escape route.  He knows where the local underground bunkers are located.  He even has toilet paper.  He makes sure his survival pack is located next to an exterior wall so that he can dig it out if necessary. 

I know to most people this will sound crazy, but I can assure you that he is not a danger to anyone.  This is what he needs to do because the symptoms of his Autism make life so unpredictable and his anxiety is so strong that he needs to do this in order to feel in control and safe.

Knowing that my 19 year old son has packed a bag and plans to take me with him and keep me safe during a Zombie apocalypse is strangely comforting.  How many moms of teenagers can say that?

Touch

The other night I watched a new show called "Touch".  I wanted to love it, really I did.  I loved the premise of a dad trying to connect with his Autistic son through a world of numbers.  But, honestly, I felt as if it would do more harm than good to those raising kids on the Spectrum.  I remember the early days of raising my son and how smart he was, and still is.  Before I knew that he had Aspergers and what it all meant, and even in those early days of knowing, I believed that he would somehow save the world.  Maybe he would find the cure for cancer or invent a time machine.  Perhaps he would create the the newest technology and become a billionaire or find a worm hole that would allow us to populate a new planet before we thoroughly destroyed the resources on earth.  I suppose that all parents want to believe that their children are special and capable of great things.  But I didn't think of these things with my NT daughter.  For her, it has always been that she would sing.  I didn't have grandiose ideas that she would be a super star or that she would even make a living with her singing.  Don't get me wrong, she has a beautiful voice.  She is good enough to get solo's in her advanced high school choir and good enough to get picked to be one in forty students performing in the advanced show choir out of a school of about 3,000 students.  So, yes she is good.  But it's not the same as how I felt about my son.  His mind was so interesting.  The way he saw the world was so different, that I honestly believed that he was destined for great things.

By the age of 3, I knew that he was really smart.  He had figured out how to open any child safety gate before he was a year old.  He didn't take his first steps until his first birthday, but he could pull himself up and unlatch the gate to get to something he wanted.  He had such a good ear for music.  He could mimic almost any song and he played tunes on his little piano that really sounded like the nursery songs that we played each night.  He taught himself to read when he was three years old.  What parent wouldn't believe that they were raising the next Einstein?  (It's interesting that I saw Einstein in him, knowing what I know now.) 

By the time he was 4, I was at my wits end.  I couldn't figure out how to manage his behavior.  He was always at least two steps ahead of me.  He did the most unexpected things. When he was frustrated, he would bang his head against the floor or wall and leave huge bumps all over his head.  He would get into the cupboards or the refrigerator and dump all of the food out on the ground.  He would scream bloody murder when I took him to the grocery store and I couldn't stop him from climbing out of the cart and dashing for the door.  I left many a full cart of groceries in the isle of a grocery store as I chased him out the door and, failing to soothe him, drove home. I tried all the tricks.  I watch the Nanny show on T.V now and I laugh at her thinking that she has all of the answers.  I taught pre-school for years before I had my own children.  I thought I had all the answers too.

He was diagnosed at the age of 4 as having ADHD and possible Oppositional Defiant Disorder.  I know that I questioned that diagnosis because I didn't feel as if his behavior was deliberate, but the psychologist was the professional, so I went with it and did as I was told.  It didn't work.  But after a while I just thought that I must not have been doing it right. I must be an incompetent mom, because nothing I tried worked.  He was officially diagnosed with Aspergers at about the age of 13.  Over the next few years I slowly grew to accept what that diagnosis really meant.  It didn't mean that he wasn't smart, he was.  But, in his case, it did mean that he would probably always struggle with anxiety.  I learned that my dreams for him might not be ones that he could achieve.  It was more important that he do a job that he enjoyed, in an environment that was comfortable for him.  It has been difficult to let go of my vision for him and to allow him to make a new vision for himself.  I know that "all parents go through this", but I want to say "It's not the same!"  I have another child and this is NOT the same.

I am incredibly proud of my 19 year old son.  He found a job that allows him to work form home 3 days a week.  He goes to the office twice a week.  He loves what he does and he has friends at work.  He has a girlfriend, who is Spectrumy herself, but it works for them.  He did all of this on his own, without very little input from me.  This is a success story.  By lowering my expectations, I was able to celebrate the victories.  If I had continued to believe that he was going to save the world, I would have always wanted him to be someone that he wasn't destined to be.  I would have always felt as if I wasn't doing a good enough job of being a mom.  I worry that a new generation of Spectrum parents are going to feel as if they are not doing a good enough job because they can't figure out their child's "special" talent and develop it for the good of society.  I see this new show "Touch" as another "Rainman", attempting to put our kids into a box and make meaning where there is none.  I know that is probably not what they meant to do, but I can't help but resent it at least a little bit.  I already have co-workers asking me if I've seen the show and wanting to know what I think about it.  I'm not sure if I can explain my feelings to someone who hasn't been through what I have.

I have a poster from my best friend who has walked in my shoes that says :

 "Tied together by stuff too difficult to explain to someone new."

http://www.storypeople.com/storypeople/WebStory.do?action=Show&storyID=2759&pageIndex=3&minRow=215&storyInSearch=200&productCategoryID=1000

She get's it.  

 

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 :)