Teenagers

I teach in a Junior High School, so I deal with teenagers all the time, but when my own son hit puberty I had no idea of what to expect or how to manage him.  I didn't start teaching Junior High until he was 14, but that wasn't really the problem.  I felt as if it was really difficult to figure out what part of his behavior was Asperger's, what part was just being a normal teenager, and what part was the fact that he had no male influence in his life.  The advice I now give to parents in similar situations is to ignore what is caused by what and just deal with it!

I started homeschooling my son when he was 10 years old and I became a single mom when he was 12, so I felt pretty lost when the hormones kicked in.  We had always been really close.  I don't know why people ever thought that kids on the Autism Spectrum weren't able to develop strong attachments because this child was stuck to me like glue 24/7.   I didn't know that he had Aspergers until a year or two after I started homeschooling.  I had actually never heard of it before I started homeschooling.  So here I was, trying to learn about Autism/Aspergers, while trying to learn how to be a single mom, while returning to school for a Master's in Special Education, while attempting to earn a living, while continuing to homeschool, while moving the kids out of their childhood home, while dealing with my mother's breast cancer, while struggling to figure out how to navigate the legal system to get through a divorce, while living in an 8x8 basement room with 2 kids, while trying to understand why my soon to be ex-husband thought that it was acceptable to avoid paying child support, while trying to figure out the welfare system because I was falling apart and unable to make ends meet.  And along come the hormones.

The junior high school years were probably fairly normal with all of the somewhat typical boy stuff that he pulled.  The difference was always the "over the top" way in which he did things, not so much the fact that he did them.  He actually became mildly popular during these years.  He had spent most of his childhood without many friends, but because he could think about and actually pull off many wild shenanigans, the neighborhood kids now wanted to hang out with him. He always though of something cool to do.  Kids were rarely bored over at our house.  His sister's friends wanted to hang out with her brother when they came to visit because they thought he was cool.  Boy, did that piss her off!

My son would do minor experiments like putting Mentos into Diet Coke and making a coke fountain.  He created mini canons to shoot little pieces of paper into the neighbors yards, or to shoot mini-marshmallows at each other.   He hooked rubber bands to all of the doorknobs in the house so that opening one door would pull another door closed.  Most of it was pretty innocent and everyone had fun, but as I said, he always somehow managed to take it over the top.  One day he and a friend decided to make Pepper Spray.  His friend was involved in 4H and grew many varieties of peppers.  They took the hottest ones and cooked up a concoction while the rest of the family was out shopping.  When we returned, we were unable to enter the house.  We had to stay away until the next day when the fumes dissipated. I'm sure I will eventually manage to tell all of the crazy stories of his adolescence, but for now, the point is that life was pretty crazy for my family during this time frame.

When he did the typical teenage rebellion, we really struggled.  I look back at the person I was and I cringe.  How could I have been so out of control and crazy?  We would hurl curse words at each other like drunken sailors.  Occasional items would fly along with the words.  Many doors were slammed by both of us.  Many tearful phone calls were made to his father, begging him to "PLEASE, PLEASE. PLEASE take your son, I can't handle him anymore!!!!".   Of course he never would.  My ex-husband didn't want the responsibility of paying child support much less the responsibility of an actual child.  My poor son was so confused during this time frame.  He didn't know how to break away from my apron strings while learning how to become a man.  I begged his grandfather (dad's dad) to take an interest in him, take him fishing, out to dinner, invite him over to play poker, anything, just "PLEASE, PLEASE, PLEASE, give him a male role model."  It didn't happen :(  

To this day, I don't know how we got through all of the craziness of adolescence and how he became the amazing young man that he is now.  I'm sure I have our family therapist to thank and I definitely need to thank my mother who survived cancer just to make sure that I didn't actually kill my son during these years.  She says that she knew she had to live because I needed her too desperately.

I think the recounting of these crazy adolescence years will take much more than one post to cover.  If I have to sum up my point for this particular post, I would say that it is to have hope that you can survive your childs' puberty and try not to take things too seriously.  Oh, and try to forgive yourself for going temporarily insane.  Sometimes you can't help it.  Sometimes kids still turn out okay even if you do go crazy for a while, so just chill and know that you will eventually get through it. They will eventually grow up and then you will miss the crazy days of adolescence.

FIRE!!!!

I should have known that all of my fire experience with my son would eventually come in handy.  My 125 gallon salt-water fish tank caught on fire Monday afternoon, well not the actual fish-tank, but the lights and hood above the tank.  I had metal halide lights that are needed to grow coral.  The fan that cools them stopped working and they overheated, blew up and caught on fire.  Then the wooden hood that they were housed in caught on fire and would have burned my house down if it weren't for my amazing son.  He knew exactly what to do.  He shut the power off at the main box and managed to get the fire out using the water from the fish tank.  For a 19 year old with Aspergers, I think that this is pretty impressive.  Of course this has taken some previous life experiences to make this possible.

The first time my son caught the house on fire he was about 7.  He decided to make macaroni and cheese for breakfast while I was in the shower upstairs.  He knocked a roll of paper towels into the flame of the stove.  He put it out with baking soda and then came upstairs to calmly tell me that he had caught the kitchen on fire.  I thought that he was exaggerating but I rushed downstairs anyway to check it out.  The wall behind the stove, the cabinets next to the stove and the counter next to the stove were black.  I had no idea of how he knew to grab that box of baking soda to put the fire out or what made him decide to cook mac and cheese for breakfast in the first place.  He had never tried that before.  He didn't try to cook again until he was a teenager, but he wasn't done with fire.  He drove me nuts for the next few years playing in the fire pit whenever we had a bonfire and he ALWAYS wanted to have a bonfire.  He would beg me almost every night to light a fire in the fire pit.  He was fascinated with the flames.  Now that I have a better understanding of Autism and sensory processing, I kind of get it, but back then, I was sure that I was raising a major pyromaniac.

As a teenager, he loved putting different things into the fire to see what color the flames would turn.  He got really into chemistry and would catch the driveway on fire just to see how different chemicals would burn.  We were very popular with the neighbors (NOT!).  We had to evacuate our house a number of times as it filled with smoke and smoke detectors went off in the middle of the night.  I finally convinced him that he couldn't burn anything in the house, my nerves couldn't take it.  Luckily he listened, or maybe not.... 

The worst fire incident was when he had another boy with Aspergers over at our house.  Our pontoon boat had been pulled out of the lake and was stored in the yard.  The gas tank was partly filled and he and his friend came up with a crazy idea.  They filled a Super Soaker water gun with the gasoline and lit the stream with the BBQ lighter.  He didn't expect it to work quite so well.  He aimed it towards the house and caught the side of the house on fire.  A gasoline fire doesn't go out very easily with a hose and it was too far up the side of the house to use a fire extinguisher.  Luckily, the gasoline burned itself off and vinyl siding doesn't burn well. 

He eventually moved out of this phase and I am happy to report that he no longer does crazy fire experiments.  I am so thankful that he was home when my fish tank caught on fire and I am even thankful for all of his learning experiences that allowed him to do exactly the right thing to save my house.  I have no doubt that the house would have been burned down if he hadn't been there.  Today he is my hero.

California State Testing Insanity!

Today I went to the high school to be a double rater for the state test.  It's called the CAPA (California Alternate Performance Assessment).  This is the test for students who are working on a more functional curriculum.   Most of my students don't take this test.   My students take the regular state tests (CST) or they take the CMA (California Modified Assessment).   The CMA tests the exact same curriculum but it basically gives the students the choice of 3 possible answers instead of 4 and they might put a picture or two on the test to make a question easier to understand.  I had one student in my class taking the CAPA this year.  This meant that the high school teacher had to come to my room at the Junior High School and I had to go to her school in order to assure that we are grading the students correctly.  This is called inter-rater reliability.  The state requires us to double rate 10% of our students.  Since I only had one student, he had to be double rated.  She had to have two of her student double rated since she has 16 students taking the CAPA. 

I'm not really writing to explain how testing in California works, but really to vent about how insane the two week window of State testing is for a teacher like me.  I administered the 7th grade CST, the 8th grade CST, the 7th grade CMA, the 8th grade CMA, the CAPA for my one student and the CAPA for the other teachers' two students.  Each test has at least two parts; English and Math.  The 8th graders have to take History and Science as well.  Each test has different directions, and the CAPA requires manipulatives and preparation such as pre-cutting the prompt pictures and gathering materials.

For some reason, it seems as if I am the only one who finds this to be a little insane. The general education teachers just blow me off as a complainer and ask me why I can't use one of my many aides to give the students their tests.  I tried to explain that it was against the law for me to do that, but their reply was, "Well you only have 10 students. How hard can it be?"  GRRRR!!!!!

To top it all off, I had to test two of those same students for their annual IEP's.  I also had to hold those IEP's with the parents and I had prospective incoming parents visiting my classroom.

I'm hoping that the new method of testing in California will bring some sanity, but unfortunately I don't have a lot of faith in it being any better for Special Education.  Even if teachers are lucky enough to have any input in the new tests, most of them obviously don't know what it is like to be in my shoes, and I don't really think that they care, because after all, I have all of those aides to do my work for me.  ;^)

The Homeless Situation

This is supposed to be about Autism, but an event in my life recently became so amazingly insane that I felt it deserved a place on my blog.  Have you ever walked by the crazy lady talking to herself at the bus stop or on the street somewhere?  You know the type, the ones pushing grocery carts with all of their belongings inside.  You move to the other side of the street and pray that they don’t approach you to ask for money.  As much as I’d like to say that I have been a compassionate person, those people scare me.  I have avoided them like the plague.  Until recently…

   

Years ago, as I was approaching my teenage years, I had a cousin move into my parents’ house.  She was 5 years older than me and she became a big sister figure in my life.  I loved hanging out with her.  She was fun and hyper and beautiful.  We traded clothes and makeup and fought to see who could be the skinniest and attract the most guys.  We were quite a pair.  As a teen, my parents let me go do many things with her that I wouldn’t have been allowed to do otherwise.  We backpacked up Devil’s Slide Trail in Idyllwild, and of course, met some guys who wanted to share their beer with us.  As they left to return to their own camp, they warned us to be careful since we were girls alone in the woods and other guys might not be as kind and generous as they were.  My cousin pulled out a pocket knife and said “Don’t worry, I have protection”.  One of the guys pulled out a much larger knife and said “That’s not a knife.  THIS is a knife!”  Being young girls out on our own, we panicked and took turns standing guard for the rest of the night.  The guys were gone the next morning, leaving us with an adventure we would never forget.  Throughout my teenage years we had many more fun adventures.

   

As the years passed, she moved in and out of my life.  She married and divorced several times, always landing back at our house to recover and search for the next boyfriend/husband.  She eventually married a doctor and had children.  I moved to Michigan and started my own family.  While I was pregnant with my first child, I received a phone call telling me that my cousins’ second child had been born with Down Syndrome.  I had just had my Alpha Fetal Protein blood test come back as abnormal and I was sure that I too was going to have a child with Down Syndrome.  After genetic testing, it was determined that it was a different chromosomal abnormality, which I am sure has something to do with having a son on the Autism Spectrum.  But, mine and my cousins’ paths were destined to cross again.

    

After my cousin gave birth to her second child she had her first psychotic break.  She believed that her doctor husband was in the mafia and that he had arranged a hit on her.  She also thought that he was poisoning her food.  She ran away to Michigan where she had lived with her parents at some point in her life.  Her sister tracked her down and had her committed to the hospital to undergo psychiatric care and get stabilized on medication.  She was diagnosed as bipolar with psychotic episodes.  I’m sure that there was much more to the story that I am not aware of, but my cousin eventually stopped taking her medication and began drinking heavily. 

She showed up at our house one Christmas very drunk and very delusional.  She had been arrested for drunk driving multiple times and ended up in the state prison. While she was in jail she claims to remember other prisoners being brought into and taken away from her cell.  I don’t remember her exact delusions during this time but they had something to do with her belief that the guards were body snatchers and were returning pod-people to her cell.  This is where she comes back into my life via my mother.

   

My mother had moved to Michigan after my children were born because she wanted to live nearby and get to know her grandchildren.  She was a special education teacher and she could work anywhere, so she bought a house around the corner from me.  What neither of us knew at the time of escrow was that we would all move into the house together.  My marriage had been rocky for quite some time, but a gas leak lead to the final break.  The gas company came, tested the air for carbon monoxide and shut down the gas to my house until we had it repaired.  We had no heat in the middle of winter.  I needed to get it fixed, but my ex-husband said that I was overreacting and he turned the gas back on himself.  He didn’t want to spend the money to get it fixed and I had no money of my own.  I refused to stay in a house filled with carbon monoxide, so I took my children and moved in with my mother until it got fixed.  I didn’t return to my house until that summer, after I had filed for a divorce.

   

In the meantime, my cousin’s sister, who had previously committed my cousin to a psychiatric hospital, called my mom and asked her for help in getting my cousin out of the state prison psychiatric ward.  My mother signed up to be her guardian and my cousin was released to her custody.  We all ended up in my mom’s house living together.  My cousin was stable on medications for the next few years  but she eventually started stealing my son’s Concerta, which he took for his extreme impulsivity.  She would stay up all night pacing and talking on the phone.  She stood for hours out in the cold smoking cigarette after cigarette.  We began locking up the Concerta and she eventually stabilized again. 

She decided to move back to her family in Kentucky where she was able to attend college.  She found a boyfriend and lived with him for a few years.  She decided that she had ADHD and didn’t need any medication except Concerta.  She went off of her Zyprexa and Depakote medication again and ended up sitting outside on her porch in a VERY bad neighborhood all night long, talking to herself.  Her boyfriend had her committed to the psychiatric hospital where she was again stabilized on her medication.   Only this time I don’t think it really worked. 

She began coming to California, where my mother and I had moved, and staying with us for one or two week visits.  During these visits, her sleeping habits were erratic.  She would fall asleep on the sofa at 7:00 PM and wake at 1:00 AM and smoke and pace for the rest of the night.  She re-established contact with her daughters who had been raised by their father and was looking to find an apartment where she could care for her adult daughter with Down Syndrome.  Her last visit was so stressful on my children that they asked me to tell her no the next time she asked to come to visit. 

My life was difficult already.  Raising two children on my own, having a son with Aspergers and severe impulsivity, a daughter with ADHD and dyslexia, teaching students with Autism and caring for my mother who was having health problems was overwhelming.  I had also recently helped my niece and 3 small children get settled after a rough marriage and divorce.  My niece had just moved out after staying with my family for about 7 months.  I was worn out.  When my cousin called to ask if she could stay with us for the summer, I told her no. 

She went on Craigslist and found an apartment with a roommate and moved from Kentucky to California.  She said that she had a scholarship to the University of California Irvine and from all accounts it seems as if that was true.  She never started college.  Her roommate quickly found out that she was mentally ill when my cousin wrote her a rent check for a million dollars.  The roommate contacted us before evicting her, in the hopes that we could convince my cousin to get help.  My cousin became belligerent and accused me of turning my mother against her.  She refused to leave the premises and was locked out of the apartment when she went to do her laundry.  The police came and escorted her from the premises.  They asked her if she was a danger to herself or others.  She said no, so they let her go.  How crazy is it to ask a crazy person if they are crazy and if they say no, then they get sent on their way?  This was the first of many run-ins my cousin would have with California police.  Every time she was picked up, she was released without getting any help.

   

She went missing after she left the apartment and it would be months before we heard from her again.  She eventually ran out of money and called my mom.  She refused to get help and told us that she just needed money to pay for the hotel room until the end of month when she would get her social security check.  My mom gave her the money and she disappeared again.

   

Months later we were contacted by a social worker, tipping us off that my cousin was staying in a woman’s shelter in Santa Ana.  We went and tried to talk her into getting help.  She did not use her normal voice when talking to us.  She had a slight English accent and told us that she was fine and there was nothing wrong with her.  She told us that she had a ship waiting off the coast to take her away.  She said that she didn't need any help.  When we asked her if she realized that it had been over a year since she had seen or talked to her children, she claimed that she talked to them every day and that she had just seen her older daughter for lunch and described what she thought that she was wearing that day.  The older daughter is going to school in San Francisco and had not been home for months.  There was no way that she could have seen her.

   

We talked to the social workers at the shelter for a while and they told us that they believed that she had Schizophrenia.  They said that they had had quite a bit of contact with her and she was always talking to herself.  She would become belligerent and accuse people of stealing her things.  She believed that people were out to get her.  She told an old friend that she was the secret wife of Osama Bin Laudin.  She claimed to be communicating through e-mail with a terrorist organization.  She was arrested in Laguna Beach for accusing the owner of an art studio of selling her paintings without permission.  She was arrested for making terrorists threats to the owner of the studio.

A week ago, we got a call from my cousin.  It’s been over a year since our last contact.  She said that she wanted to take us up on our offer of shelter until she could get her Social Security check issued to her again so she could have some money to get a place of her own.  She said that she had been sleeping on the ground, across from the Santa Ana Police Station.   She is now staying with us temporarily.  My mother can’t work because we don’t feel safe leaving her in our house alone.  We all lock our bedroom doors as we come and go.  We all carry pepper spray in case she isn't safe.  We don’t really know her anymore.  She speaks in at least 4 different accents.  One is her normal voice and she seems to try to use that voice when communicating with us, but she isn't always successful.  She has a female persona who speaks with an English accent and is a little bit gruff and another who is a giggling little girl.  The last and most scary one is a male voice.  It truly sounds as if there is a male in our house of all females.  The dogs do not like this persona.  He/she scares them.  They bark when he is present. 

   

Since living with us, she spends a lot of time in her room, smoking cigarettes.  She knows that we do not smoke and that we do not want it in our house, but we don’t complain because we don’t want her to disappear again.  She also goes outside and sits in the dark at night to smoke her cigarettes, so it isn’t that she isn’t willing to go outside.  I think that the “guy” just doesn’t care, while the other personas do care and try to be polite.  She has conversations with herself using all of these different voices.  She says that she just likes to talk to herself and this doesn’t mean that there is anything wrong with her. 

   

 How come she can’t see that going from being the wife of a doctor to being the bag lady on the street isn't normal?  How can she justify moving to California to attend school and spend time with her children and then disappearing for two years?  How can she think that she is okay when everyone around her keeps telling her otherwise?

   

The final questions I have are “How can the State of California prevent family members from getting help for an obviously mentally ill person?   Why do they think that it is okay for an obviously mentally ill person to make the decision to not seek treatment and end up living on the street?  If a mentally ill person was making good decisions they wouldn’t need help.  Isn’t that the point of having a state mental health system?  If the only people who can get help are those that realize they are crazy then we are abandoning those who most need our help.  It’s those who think that they are fine even when all of the evidence suggests otherwise, that need us to make decisions for them because they are not capable of making them for themselves.

   

I now need to give my cousin an ultimatum.  Either she goes to see a doctor and start on medication or my mom will need to drop her back off in Santa Ana to return to homelessness. 

Postscript:  She agreed to see a doctor and then changed her mind.  She is afraid that they will put her in the hospital and lock her away.  She chooses to return to the street rather than go see a doctor.  There is nothing I can do to help her.  I can’t live with a mentally ill person indefinitely.  My mother must return to work and there is no-one available to watch her.  My cousin asked my mom to stop at the humane society to get her a dog before driving her back to Santa Ana and dropping her on the street.  

I am heartbroken…     

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.