"Look At Me"

"Look At Me"
monotype and screenprint

Sunday, February 26, 2012

I got to meet 3 kids in the project this weekend!!!!!

I got to meet Jaxson, Matthew, and Joslyn this weekend.  I am still on cloud nine.  All three were so amazingly different, but yet each one reminded me of Derek a little.  Jaxson lined his cars up the same way Derek does.  Matthew loves video games.  And Joslyn, well when I looked at Joslyn I saw what Derek COULD BE in the future.  It gave me chills.  She is doing so well in school.  She has friends.  And she could hold a conversation with me!!! 
Joslyn.  A beautiful and smart little girl.

Jaxson is full of energy.  He rocked back and forth on his knees the entire time I was there, occasionally glancing over at me and smiling a little. 

Matthew loves video games.  The entire basement of his house has been made into a gym for his sensory needs.  There is a swing, a hammock, and a trampoline.  I think I need to do this for Derek, since our couches are getting destroyed. 

Derek played with my old Sesame Street house this weekend.  As you can see, he actually put people in the chairs and the beds.  This is AWESOME.  We had to teach him how to play appropriately with toys.  A year or so ago he would have lined all of the people up in a row.  :)

Thursday, February 23, 2012

My Story. (Confession: I'm Crazy.)

My Story:  A Battle with Manic-Depression
            There is a fine line between madness and sanity.  I know, because I walk that line on a regular basis.  I wonder sometimes exactly what it would take to push me over the edge.  I take 8 pills a day to keep myself “stable.”  If I stopped, it would only be a matter of time before I became suicidal.  Guaranteed.  I’ve been struggling with bipolar disorder (manic-depression) since I was nine years old. 

             People joke about being crazy all the time.  When someone is particularly moody one day, they say, "She must be bipolar."  Then they laugh about it.  Or if someone is talking to himself, people joke "Maybe he is talking to the voices in his head."  Truth?   Mental illness is no joke.  It's serious business. 

My life has splintered.  The last time I can remember feeling “whole” was Christmas of 2008.  I had begun to suspect something was wrong with my son, but autism had not taken over everything quite yet.  After this point, my life veered irreversibly off the path I had planned.  I am a different person now, for better or worse.  I have been through Hell and back, and survived.  The memories are still crystal clear.  The pain may eventually diminish, but the scars will remain forever.  Once you are broken, even if you glue yourself back together, you are never quite the same.  The cracks are always there, and tiny fragments are lost forever, blown away by the wind.  You spend the rest of your life searching in vain for the missing pieces.

What is Bipolar Disorder?  Click on the underlined words and you can read about the definition and the symptoms.  I don't want to go into the details--take my words for it, I am a poster child.  If I don't take my meds, it's only a matter of time before I spiral downhill into a sea of depression.  It's happened before, it will happen again.  I have been toying with the idea of writing this post for awhile. I held back because of the potential for criticism.  I know it's nothing to be ashamed about, but when you are raising a child on the spectrum, you get criticized for everything.  I wasn't sure I could handle more.
So here is my story:  the good, the bad, and the ugly.

Part 1:  Diagnosis

            I’ve been fighting depression my entire life.  At just ten years old, I had my first major episode.  That year, my family moved from Hanscom Air Force Base in Massachusetts to Wichita, Kansas.  We moved in February of 1988, right before my tenth birthday.  I started a new school in the middle of the year in a city where everyone had grown up together.  I was the “new kid” and an easy target for other kids to make fun of.  I was a small, skinny, tomboy and when I walked into the classroom, I overheard kids asking if I was a boy or a girl.  I had an accent.  I also faced something I had never had to deal with before—racial problems.  In Wichita, there were definite lines, and on numerous occasions my life I was threatened for “messing up the grading curve” in school.
            For the first time, I was unable to shake the “blues.”  I was terrified of going to school.  I cried every morning and begged my parents not to make me go to school.  I lived for weekends and felt physically ill on Sunday nights, thinking about the upcoming week.  I cried all the time:  at school, at home, during swim practices.  I remember bending my head over my desk in the classroom so the other kids wouldn't see my tears.  Somehow, I survived the school year.  I became a different person.  I no longer had any friends except for my sister.  Instead of being an average student, I became a straight A student.  I didn’t even try to make friends, instead I withdrew from everyone.  
            I had several more episodes while I was growing up.  I know my parents took me to see several doctors (psychiatrists?) along the way.  I was misdiagnosed.  One doctor said I was anorexic.  Yes, I was eating very little, but it was more complicated than anorexia…it was a combination of perfectionism, depression, low self-esteem, no appetite, and a number of other factors.  I also remember being told I had anxiety.  I know I saw a counselor for a while.  It didn’t do me any good.  I didn’t trust the counselor.  I didn’t want to talk.  The records are out there somewhere, sealed in military files. 

           In high school, I remember having several mini-“freakouts.”  I became obsessive about certain things, like my grades and how well I did in swimming (I was a year-round competitive swimmer).  I became the ultimate perfectionist.  I wanted to have control over as much as possible.  I got so stressed out studying for finals one semester that I threw my books against a wall and started screaming…

            I was able to (sort of) keep myself together through college.  But I turned to drinking for self-medication.  I drank at least 3 or 4 nights a week.  My self-esteem hit an all-time low, because I gained a lot of weight.  I had friends, but no boyfriend.  I wanted to be loved, but didn’t think I deserved it.  I thought I was fat, ugly, and crazy.  I was scared that if I let someone know what I was really thinking, and if they knew the real me, that they’d run like hell in the other direction.  I became a good actress.  I wanted everyone to think I was fine.  Because of this, I rarely dated anyone.  I was terrified of a real relationship.  I had walls up so high that nobody could get through.  I didn’t want to get hurt.  So I pushed people away before they got to know the real me.  My longest relationship was 3 months.

            Grad school proved to be my breaking point.  I lost whatever control I thought I had.  I started my Masters of Arts in Education in January of 2001 at the University of Nebraska at Kearney.  At first, things went great.  I started dating a guy who seemed incredible.  I was living on my own in a small apartment.  I loved my classes.  But soon the amount of work I had to do for my classes added up.  Turns out Stress and I are not friends.  Some people function well under pressure.  I'm not one of them.  When I get too much on my plate, I shut down.  I was trying to juggle a relationship (which I had never been good at), the pressures of graduate school, and my own demons.  I tried to keep up by cutting back on sleep.  Unknown to me at the time, lack of sleep was triggering my first manic episodes.  I was a mess.  My brain was going a mile a minute and I couldn’t get it to slow down.  I would go several days without sleep--high as a kite--talking constantly and changing subjects at the drop of a hat.  My behavior became erratic and unpredictable.  People never knew what to expect from me.  Then suddenly, I would crash and be more depressed than ever before.  It would last for weeks.  Needless to say, I fell behind in school.  Something had to give.  I broke up with my boyfriend, which was devastating.  I still had deadlines looming, and the stress suddenly became too much.  I panicked.  I was terrified I was not going to get everything done and that I would flunk out of grad school.  Failure was not an option to me.  It was my biggest fear, and it paralyzed me.  I couldn't have created art if a gun was put to my head.  I didn't want to let my parents down.   I became suicidal.  It seems crazy looking back, but I actually believed that dying was better than failing.  I started obsessing about death.  I dreamed of ways I could end my life.  I wondered if anyone would care.  I thought about who would come to my funeral.  I lay awake at night in the dark little brick dungeon where I lived and wondered what I was waiting for.  After 4 days of not being able to sleep or function, I knew that I was, indeed, going to fail.  I emailed my teachers and told them I was quitting (highly unusual for me).  I called my parents and basically said goodbye.  (My dad told me later he almost drove three hours that night to come get me.  I guess I scared my parents pretty badly.)  Then I opened a bottle of vodka, drank a bunch of it, swallowed a handful of pills, and closed my eyes.  I woke up puking my guts out.  It was then that I realized I needed help--I could no longer pretend that everything was ok.  I checked myself into a hospital that very morning, where I was also finally diagnosed with Bipolar II disorder.  It took several years to get my medications and dosages correct.  They caused weight gain, which added to my depression.  I was also in therapy for years.  It took a long time to put the demons to rest (they still come back to haunt me now and then), but I am now relatively "stable" on an anti-depressant and two mood-stabilizers.  I don't dare go off my meds.  I want to live.  I want to be there for my children... 

Derek’s Story:  The Battle Continues
            Looking back now, I wonder why I didn’t see the signs earlier.  They were staring me in the face.  There were little clues, here and there, that I was somehow oblivious to.  Maybe I didn’t want to admit that there was something wrong with my son.  Maybe I was just too busy trying to keep up with my other son Tyler, who was almost 3.  Between my two sons and a husband who worked nights, it seemed I could never keep up with housework.  Or sleep.  I remember being perpetually tired.  I can come up with dozens of excuses.  I guess it doesn’t really matter anymore.  The first time I remember noticing that something wasn’t quite right was on Derek’s first birthday.  He was more fussy than normal.  I thought it was because he hadn’t taken a good nap.  But it was the first time I noticed that he didn’t want to make eye contact with me.  I couldn’t get him to look at the camera—let alone smile—for pictures.  He also freaked out that there was a crowd of people in the house and didn’t want anyone but me to hold him.  Then when I gave him a cupcake in his highchair, he poked at the frosting and made a face, almost like it hurt him to touch it.  He wouldn’t eat it.  He had no interest in unwrapping his presents.  All he wanted to do was lie on the floor and roll two identical cars back and forth.  This was just the beginning.

            The strange behaviors began.  Derek became fascinated by odd things.  He loved watching things spin.  He could roll cars back and forth for hours, just staring at the wheels.  He would watch sprinklers turn and merry-go-rounds spin.  He began running in circles.  He’d open and close drawers, dish-washer racks, and shower doors to see how they worked.  He also had to have two identical things at all times, one in each hand.  Two spoons, two cars, two shovels, even two toothbrushes.  As long as he had two, he was ok.  Take away one and he would throw an enormous screaming fit.  When he “found” two identical things he would get really excited and “flap” his hands and jump up and down.  He also liked to be squeezed into really tight places, like under couch cushions and into corners of rooms.  He became obsessed with my hair, and wanted to twist it and twirl it when he was distressed.  And last, but definitely not least, he stopped eating almost everything. 
When I say he stopped eating, I don’t mean he stopped completely.  He just became an extremely picky eater.  He gave up foods that he’d eaten for months almost overnight.  All of a sudden, he refused to eat anything wet, squishy, and soft.  When you have a child who doesn’t communicate, it is impossible to reason with them.  I couldn’t convince Derek to try new foods, or even that he needed to sit to eat.  He was completely on his own schedule.  People told me that if he got hungry enough, he would eat.  This is absolutely not true with an autistic child.  Derek once went three days without eating.  To this day, his diet consists of dry, crunchy finger foods such as cereal, crackers, and pretzels.  On a good day I can get him to eat an apple or pear.  He does not eat any vegetables or meat.
Between the ages of 12 months and 18 months, I watched my child disappear before my very eyes.  I don’t know what happened or exactly what caused my child to retreat into his own world, but it was downright terrifying to witness.  I don’t think anyone, except another parent of an autistic child, will ever understand the horror or the devastation.  Everything happened so quickly.  Derek went from my perfect, happy baby to a child who wanted nothing to do with anyone.  He was content to sit in a corner and run cars back and forth, over and over again.  If one car got taken away, my son would go ballistic and become a screaming, kicking ball of terror.
Derek also stopped making eye contact.  It became harder and harder to get him to pay attention to me.  Then he stopped responding to my voice completely.  When I called his name, he didn’t look up from what he was doing.  If I snapped my fingers in front of his face, or clapped, sometimes I got a sideways glance, but he never looked me square in the eye.  No matter what I did, no matter how hard I tried, I was unable to reach my child.  It was as if he was locked in a room, and I was behind a plate of one-way glass.  He couldn’t see me, nor hear my screams.  Sometimes the movie “What Dreams May Come” comes to mind when I think of this time.  Derek was trapped in his own personal “hell” of sorts and for some reason or other he wanted to stay there.  In order to save him, I had to join him.  In the process, I almost lost myself…
Derek had been a perfect baby.  He had developed normally.  He had rolled over on time, sat up, crawled, walked, and babbled.  He’d eaten well and given me big smiles and perfect eye contact.  He knew who I was.  I have pictures to prove it.  But after he turned 1 he began missing milestones.  He never pointed.  He never waved.  He never clapped.  He never said, “bye-bye.”  By the time he was 15 months old, I was worried.  But I kept telling myself, “Oh, he’s just a late talker.”  Tyler had been a little slow too.  I didn’t think it was that big of a deal.  I thought if I spent extra time reading with him and playing with him, he’d start to catch up.  But Derek didn’t want to sit in my lap.  And he didn’t like to look at books.  When I tried to read to him, he scooted off my lap as quick as he could and retreated to his room to play with cars.  By 18 months, I had begun to panic.  He still hadn’t uttered a single word, but I was in denial.  I knew in my heart that something was wrong, but I didn’t want to admit it.  Part of me felt like if I admitted Derek had a problem, I would be admitting that I had failed as a mother.  So I refused to look anything up on the computer.  Research would give me answers, but what if it was something I wasn’t ready to hear?   

I remember vividly the day that I realized that not only was Derek unable to speak, HE DID NOT UNDERSTAND LANGUAGE.  It was as if I was speaking a foreign language and all he heard was gibberish.  In a panic, I tested my theory.  Derek loved milk, so I asked him, “Derek, do you want milk?”  I got no response.  The second I opened the fridge, or showed him a sippy cup, he came running.  Same thing happened at bath time.  “Derek, do you want to take a bath?”  Nothing.  I turned on the water and he was there in an instant.  I continued to test my son over the next few days, but saw no improvement.  The ultimate test would be to see if Derek wanted to go outside.  He LOVED to go outside.  “Derek, do you want to go outside?”  Derek didn’t even blink.  I went to the door and opened it.  He came running.  At that point my stomach turned.  Then, when I didn’t think it could get any worse, I realized that my son didn’t even know his own name.  It finally hit me that my son had a very, VERY serious problem.     
The hardest part for me at this point was that I felt alone.  I mentioned several times to my husband that something was wrong with Derek, but he thought that Derek was just a late talker too.  He thought I was just a typical paranoid mother.  But even my neighbors had begun to say something to me.  One of my neighbors who saw Derek on a regular basis talked to him a lot and tried to get his attention frequently.  One day she finally asked me, “Do you think he might be autistic?”  She had voiced my fears out loud.  I started crying right then and there.  I knew I couldn’t wait any longer.  It was time to find out, one way or the other. 
My pediatrician suggested I get Derek’s hearing checked and told me to talk to the local college about language and speech delays.  This was in May.  I thought, “Ok, that would be an easy fix.  Maybe he just has a hearing problem.  Or maybe he just has a language delay.”  But when I called, the college said they wouldn’t be able to help Derek until school started again in the fall.  Some kind of “mommy instinct” took over.  I knew Derek couldn’t wait that long.  Everything inside me screamed that I had to help him NOW.  Not in 3 months.  And I knew that he didn’t really have a hearing problem.  Whenever a car or truck went by the house, Derek would stop what he was doing and run to the window to see it go by.    
We had the hearing test done at the end of June, 2009.  Mostly I did it just to rule out all the possibilities.  I wanted so much for Derek to have a hearing problem.  Isn’t that terrible?  I thought, “It would be so much easier if Derek just needs hearing aids.  Anything would be better than the “A” word.”  I was curious how they would test the hearing of a child who did not speak.  The ENT Specialists in Kearney put Derek in a little room.  In the upper corners of the room were Winnie the Pooh speakers that spun around whenever they made “beeping” noises.  Derek would look up at them and smile.  It was actually pretty ingenious.  Not surprisingly, Derek passed the hearing tests with flying colors.  Derek’s pediatrician still suggested we do one more hearing test though:  A sedated ABR—an Audio Brain Response test.  This would test his neurological functioning as well as his hearing.  ABR tests are used to evaluate the hearing and brain functioning of infants and young children.   They can also be used on patients who are comatose, unresponsive, or impaired due to a stroke.  It involves attaching electrodes to the head to record the electrical activity from the auditory nerve (the hearing nerve) to other parts of the brain.  We scheduled the ABR for August 17th.  The results came back normal.  I knew in my heart that my son was autistic.  I didn't need a test.

Part 2:  The Autism Evaluation and My Slide into Hell
At about this time, I began to shut down.  Technically, I was still functioning.  I was going through all of the motions.  I was taking care of my kids.  I was keeping the house somewhat clean.  I was pretending that everything was ok.  But I was falling apart.  I had quit taking my medicine in the summer of 2005—the exact day I found out that I was pregnant with Tyler.  I had never gone back on them.  I didn’t want to take them when I was nursing, and the second I quit nursing Tyler, I’d gotten pregnant with Derek.  For some reason, I had never bothered to go back on them.  It's a lot of work to find a new psychiatrist and I actually thought that since I was married with children, I would be happy.  I thought I was doing well.  Maybe.  Maybe not.  My doctor thinks I was just a ticking time bomb.  He said it was only a matter of time before something happened that would start the rollercoaster ride all over again.  Unfortunately, it was Derek’s diagnosis.
You would think, having been through it before, that this time I would have recognized the warning signs.  I was alternating between mania and depression.  I wasn’t sleeping well.  That has always been a trigger for mania for me.  Too many days of too little sleep and I go into over-drive.  I become fidgety, start speaking fast, and basically become superwoman.  I’m able to get a ton of things done in a day (like clean the entire house or in the old days, get 4 art projects done in 2 days!).  Then I lost my appetite and began losing weight.  I was fighting tears all the time, even in public.  I was going downhill fast.  Neighbors and friends began to comment on my appearance.  “Honey, you look tired.  Are you ok?”  “Have you lost weight?”  I remember clearly that when a lady at our local store asked me if I had an eating disorder (remember, we live in a small town—everyone knows everyone’s business.) it took everything in me not to go into hysterics.  I thought to myself, “Really? REALLY?  Does it look like I have the time or energy to care whether or not I’m FAT?????”  I was shocked.  But I didn’t recognize that I was depressed.  I had only one thought on my mind:  DEREK.  I was on a mission to save my son, no matter what it cost.  I didn’t care about myself.  In the past, when I was depressed, I could barely get out of bed.  I would cry all the time, thinking about how much I hated myself and how much I wanted to die.  Life didn’t seem worth living.  This time around I didn’t care about myself at all.  I didn’t even THINK about myself.  I was in more of a state of panic and desperation.  I threw on whatever clothes I found, and then went straight into “Mommy-mode.”  I played with my sons, trying to engage Derek and get him to play with me and Tyler.  “Derek, look at me,” became my new command.  I tried to get eye-contact out of him as much as possible. 
A friend recommended I get Derek evaluated by an early intervention team in Holdrege.  It was a free service, and they would come to my house for the evaluation.  My friend knew about the ESU group because her children attended the pre-school there.  Her two kids had both been born pre-mature and needed special services.  I was grateful to her, but extremely mad at my pediatrician.  Why hadn’t she suggested this?  And then, after I had contacted the ESU 11 unit and set up a date for Derek to be evaluated, I was terrified.       

JULY 15, 2009.  This was the day of Derek’s initial evaluation.  I will never forget it.  It sticks out like a splinter in my mind.  Oddly enough, I remember very little of the actual evaluation.  I know there were a lot of people in my house, and that they asked a lot of questions and followed Derek around, trying to get him to play with toys and interact with them.  I watched my son try to escape.  He hated strangers.  I wanted to protect him, but I knew that I couldn’t get in the way.  I felt so alone, so helpless. 
Immediately after the evaluation, we had a meeting to discuss my son and what the evaluation had determined.  This was not an official diagnosis, but it might as well have been.  My son had failed (passed?) all the tests.  All signs pointed toward autism, and once the word was officially spoken out loud, I heard nothing else.  I felt like my world had collapsed.  I couldn’t breathe.  Autism.  NO!  Tears threatened.  I managed to hold it together until everyone left.  Then I slumped to the floor, numb.  I have no idea how long I sat like this.  But what do you do when your heart shatters?  All of my dreams for my child vanished in that instant.  How do you grieve for a child who is not dead?  Derek was definitely still alive, but he would rather be in his own world than in mine. 
I was alone.  I was utterly, completely alone in my devastation.  I could talk to nobody.  I tried.  Believe me, I tried.  But they didn’t understand.  They hadn’t witnessed my son’s withdrawal.  They hadn’t been there, day in, day out, 7 days a week for 6 months.  I felt that I had failed my son.  I felt indescribable amounts of guilt.  Was it something I had done?  Had I done something wrong during pregnancy?  Did it have something to do with my being bipolar?  Was I not a good mother?  Did I not pay enough attention to my son?  I had always thought he was just more independent than Tyler.  He liked to play alone!  I didn’t think it was a big deal.  Then suddenly he was just…unreachable. 
I couldn’t even talk to my husband.  On the day of Derek’s evaluation, I told him calmly what the autism team had determined.  I didn’t cry.  I just blurted out the words.  We didn’t cry together, as we should have.  Dustin just listened to what I said, got ready for work, and left.  He was alone in his own version of Hell.  I don’t think he knew what to do either.  We were both in shock.  A few hours later, it finally hit me.  I started crying and couldn’t stop.  I cried so hard I almost threw up.  I remember peeking in at my son, and looking at him sleeping in his crib.  He was so beautiful…and so perfect.  What had I done wrong?  I honestly don’t know how I survived the night. 
The next few months are a complete blur.  I was a vortex of emotions.  Some days I felt nothing.  Other days the mental anguish was so bad I could barely breathe.  You have to remember, I not only was dealing with the diagnosis of my son, which was challenging enough.  I was also caught up in the web of an all-out depressive episode.  I was stuck in a black hole from which I saw no escape.  I saw no light at the end of a tunnel.  I had no hope for better days.  As always, I became suicidal.  I remember things, but in bits and pieces.  My sense of time was completely warped.  Luckily, a lot of things were written on the calendar, so I can construct a time-line of when things happened. 
Life continued for everyone around me, and I tried to keep up, but I was failing.  We met Dustin’s parents at the lake the weekend after the evaluation.  Everyone else talked and laughed.  I don’t think I said two words.  Inside, I was screaming.  I spent the day watching Derek.  He spun the wheels on toy trucks in the sand.  He picked up shovelfuls of sand and watched the particles slowly fall back to the ground.  He loved watching the jet-skis go by.  I wondered what he was thinking about.  I tried over and over again to get him to look me in the eye that day, and not once did I succeed.  Derek was 20 months old, and my little boy was lost.  I had no idea if I would get him back, and I was both devastated and overwhelmed. 
My memories of the summer/fall or 2009 are sketchy.  It scares me how little I remember.  I know that the ESU group came once a week to “guide” me in how to work with Derek.  I felt overwhelmed and scared all the time.  It is extremely frustrating to be your own child’s therapist.  Instead of being the one to cuddle him and love him and soothe him, you have to force him to do things he doesn’t want to do.  My big goal was to get him to look at me.  It sounds easy, but boy…most days I got so frustrated that I pulled him into my arms and cried, telling him I was sorry that I had to do these things to him.  I also talked CONSTANTLY to him.  It became such a habit that people gave me funny looks in grocery stores.  “Derek, that’s an APPLE.”  I hoped he’d pick up on something.  Anything!  I told him what everything was.  I spoke very slowly and used short, simple sentences.  I tried using sign language and teaching Derek a few signs in an attempt to help him communicate.  Derek yanked his hands away.  I even taught Tyler a few signs and encouraged him to talk to Derek as much as possible.  It seemed like everything I tried backfired.  For example, I tried to get Derek to sign “more” to get more cheerios.  He threw a huge fit, refused to sit in his highchair ever again, and abruptly stopped eating cheerios.  My child may be autistic, but he is no dummy.  He is just extremely stubborn and will not be forced to do anything he doesn’t want to. 
Derek at this time had virtually no receptive language.  By this, I mean that he did not understand that words had meaning.  He had no idea what the word “no” meant.  This may not sound like that big of a deal.  But we had no fence in our yard.  And Derek was a fast two year old who loved to play outside.  He was also a little escape artist.  That summer, I lost him a total of 3 times.  Luckily, the first two times I found him within a few minutes.  He usually just turned the corner and went to the back yard to play in the neighbor’s sandbox.  On the third time, however, he vanished.  I had no idea where to even start looking.  I told Tyler to search the back yard while I ran across the street to the park.  I had never felt so helpless before in my life.  I was terrified that Derek had crossed the street.  I contemplated banging on the neighbors doors to ask for help, but I knew that would cost precious minutes, and in my mind I could see Derek’s body splattered on the road.  There was no point in calling Derek’s name—I knew he would not answer.  He didn’t even know his own name anyway.  I searched for 10 long minutes.  When I was in an all-out panic and pulling out my phone to dial 911, Tyler found him.  He was behind some bushes, about to cross a main street.  I started crying and immediately vomited in the bushes.  The next day I contacted the local fire department and informed them that there was an autistic child in the town who would not respond in a fire.  I gave them Derek’s picture and my information in case he ever got lost again.  That way I could call and have 10 people there to help me look for him within minutes.  I never wanted my son to get lost again.
Despite my own struggles, I continued to fight for Derek.  During the day I put on a brave front and pretended everything was ok.  My children kept me going.  At night I cried myself to sleep.  I had the weight of the world on my shoulders.  I felt like a single parent, and I was terrified that I was going to fail my son.  If I wasn’t able to pull him through this, would he end up in an institution?  The very thought paralyzed me with fear.  It still does. 
Finally, I had a glimpse of hope.  I remember the moment I knew that it was still possible to reach my son.  Derek was still there!  He was just locked inside.  I’d been trying to teach him how to clap all summer.  Whenever he did something good, I clapped for him and encouraged him.  I also helped him clap his hands together.  One day, when we were at the park, he went down the slide by himself.  I said, “Yay, Derek!”  He looked up at me and surprised me by clapping his hands on his own.  Life with Derek was going to take an infinite amount of patience, and I was going to learn how to celebrate every little victory, but my son was not lost!

Derek didn’t seem to be improving fast enough to me.  I constantly fought panic that the tiny “window” Derek had to make the connections in his brain was going to close before I got through to him.  Derek escaped to his own world whenever I turned my back.  Tyler was never happy and seemed more clingy and afraid to be away from me than ever.  I felt like I was failing him as well.  It seemed there was never enough time for me to do everything and be everyone to everybody.  How can you be a successful mother, wife, and friend, and still have time for yourself?  My housework piled up.  I was trying desperately to stay afloat (remember—my husband worked nights, so I was on my own).  Something had to give.  Something did give.  Me.  I began to fight the urge to flee.   

Part 3:  Mental Breakdown #2
When I got married, I mistakenly believed that I would never have to worry about being bipolar again.  I thought that my husband would be my safety net.  I naively thought that if I ever began the dark slide into depression again, I’d have someone to catch me.  Someone to say, “Honey, I think you need to go see a doctor again.  You aren’t doing very well.  Maybe you should get back on your medication.”  What I didn’t expect was a husband that worked nights.  I didn’t expect to see him only half an hour a day 5 days a week and 5 hours a day on Fridays and Saturdays.  I also never expected to have an autistic child.  I can’t blame my husband for anything.  He didn’t know what was happening.  He didn’t see.  He’d never witnessed me depressed before, so he didn’t know what to watch for.  I also didn’t expect that my husband would be struggling just as much as I was with our son’s diagnosis.  He needed me too.  But I wasn’t there for him either.  For better or worse?  This was definitely the “worse.”

By September, things were unraveling.  I began dreaming of suicide.  I’d even made plans.  All I had to do was find a babysitter.  Then I could drive my car off the road into a tree.  Forget the seatbelt.  Or drink a bottle of alcohol.  Top it off with a bottle of sleeping pills.  The way I figured, my kids would be better off.  The ESU people were still coming once a week and trying to help me with Derek, giving me advice on how to connect with him.  I was trying, I truly was, but in my eyes, I was failing.  I would sit down to read with him and Tyler, and he would get up and run off to play with his cars.  If I tried to chase after him, Tyler would cry, because he wanted to read.  I couldn’t win no matter what I did.  During all of this, Tyler was yet another source of guilt.  He became extremely jealous and had no idea what was going on.  He became extremely attached to me and didn’t want to leave my side.  He lashed out at Derek.  He wanted constant attention.  And unfortunately, he saw me cry—all the time.  I couldn’t control it.  To this day, I wonder what this did to him.  He wasn’t even 3 years old.  It can’t be easy to witness your own mother coming apart at the seams.
Everything made me feel guilty.  I felt like Derek’s autism was my fault.  I wondered if I had done something wrong during pregnancy.  Had I not paid enough attention to him when he was a baby?  I had thought he was just a typical second child.  He was so independent.  Tyler had always been needy.  He wanted to be where I was all the time.  Derek was just the opposite.  I didn’t think it was a big deal.  Or did it have something to do with my manic depression?  Maybe it had something to do with the pre-term labor and the magnesium sulfate?  Or was there truth to the theories about vaccines?  Was there something wrong with our town’s water?  I had drunk bottled water during Tyler’s pregnancy and tap water during Derek’s.  Was it genetics?  I couldn’t shake the feeling.  Somehow it was my fault.  It had to be.
Luckily, God, or fate, or whatever you want to call it, intervened.  I ran into someone from our church at the store, and I have no idea why, but when she asked how I was doing, I completely fell apart.  In the middle of a grocery store, I started sobbing.  She was a therapist, and she MADE me come in to see her that day.  She got me in to see a doctor that morning, and he got me back on meds that very same day as well.  She probably saved my life.  I’m not sure how much longer I could have hung on.  Any little thing could have pushed me right over the edge.  I’d been teetering for far, far too long.
Rock Bottom
Rock bottom is a scary place.  It’s like falling down into a dark, cold, abandoned well.  The well is 30 feet deep and has about a foot of water at the bottom.  When you scream for help, there is nobody around to hear you.  So you sit there, shivering and wet, wondering if anyone will bother looking for you, or if they’ll even notice that you’re gone. 
When you hit rock bottom, you really only have three choices.  1)  You can be a coward, refuse to face your problems, and kill yourself.  That’s the easy choice.  2)  You can stay where you are, alienating yourself from your loved ones and ultimately ruining your life.  Or 3) you can do the work, knowing that climbing out of that abandoned well will be the hardest thing you will ever have to do in your entire life.  It will involve falling back down into the cold water numerous times.  It will involve crawling through a pitch black tunnel in order to get to the light.  And by the time you get to the top, your entire body will ache and your hands will be raw and bleeding. 
I began the climb in October of 2009.  I had my parents come and stay with the kids for a week and I took off for Tulsa, alone.  My college professor from graduate school gave me permission to use the studio, so for three days straight, I did nothing but make art.  I worked on one single piece, for hours upon hours each day.  I loved it.  In those three days, I found a part of me that I thought had died.  I remembered who I used to be before I became a mom.  I remembered what it was like to smile.  I remembered how much I loved art, and the smell of ink, and how much I liked talking to other artists about art.  I was able to forget, for a little while at least, that I had an autistic son.  That art trip saved me.  Two years later, it also proved to be the start of my career and this project.  :)

New pieces.

"Lilia:  Alignment"

"Riley:  Air Writer"

I just started working on my next piece, about Peyton.  :)  Hopefully I don't have as many problems with this one as I did with Riley.

April is going to be crazy busy.  I signed up for the 2012 NE State Autism Conference.  The following weekend I was asked to have a table at the Autism Meet Optimism "Walk for Recovery" in Manhatten, KS.  Then at the end of the month is Autism Society of Nebraska's "Autism Puzzle Walk" in Omaha, NE!!!  Derek's ESU unit also wants to have my artwork up in their building for the entire month of April--since it's Autism Awareness month.  :)

Wednesday, February 22, 2012


Derek gives me a great smile at the pool.  :)  Rare for a photo.

Tyler's 6th Birthday!!!  (and the leaning tower of chocolate cherry cake!)


Derek is playing with cars--even at the pool.  Tyler watches.

Derek "matching" two kinds of Oreos.  He studied the cookies for a while and then took a bite from each to see what the differences were.  One has white filling; the other chocolate.

Bribing Derek in the bathtub with a sucker.  He gets a treat after he survives getting his hair washed.  Poor kid can't stand having his head touched.

Monday, February 13, 2012

Silence is Not Always Golden

I had a friend over last Friday for a few hours.  Tyler was at school and Derek was home.  He didn't have preschool and his therapist was unable to make it.  During the entire time my friend was over Derek said a total of one word:  "Hi."  And it was because I asked him to. 

Derek's language has increased ten-fold in the last 6 months.  Just last week I heard him say "Hap pissa" (Have pizza--which he doesn't even eat) and "teef" (teeth) for the first time ever.  He's talking more and more.  But he talks around people he knows--his family, his therapists, and his teachers.  He still won't talk around strangers.  Most of his speech is labeling.  He'll tell you what things are.  Like pigs and cows and cookies.  He still cannot tell someone his name, where he lives, or his phone number.  This terrifies me. 

You don't realize how important communication is until you have a child who cannot communicate.  Over the weekend my entire family had the stomach flu.  All four of us were vomiting.  Derek threw up maybe 15 times in a four hour period.  He kept repeating "help" and "ow."  It broke my heart.  That was the only way for him to tell me he was in pain.  Luckily, I could tell what was wrong.  But what do I do when he has an ear infection or a sinus infection?  I have no way of knowing what hurts or where the pain is.  I can ask, but getting him to point to what hurts is a challenge.  Usually he just cries or whimpers.  If his fever gets too high, I take him to a doctor, which he hates, and it is a process of elimination until we figure out what is wrong. 

All day Sunday, as my sick child whimpered and cried, I kept telling him I was sorry and that I knew how much he hurt.  I tried to anticipate his needs--getting him gatorade and wiping his forehead with a washcloth.  I held him while he vomited and hugged him afterward, wiping his tears away.  The helplessness I felt was unbearable. 

The person who said that Silence is Golden did not have a non-verbal child.