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

First, the three shoes

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

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

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

A Monday, Changes

Red Shoes

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

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

Blue Shoes

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

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

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

Black Shoes

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

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

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

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

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

When I Was in School – Conversation with mom

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

Not Knowing Emotion or Not Knowing How to Show?

Emotions are difficult to discuss because of their abstract nature.  The way Neurotypical (NT, from now on) people express their feelings to one another really have perplexed me for most of my life.  There seems to be this need inside the individual to have others understand how he or she feels, but a reluctance to “show” that emotion.  Yet somehow the outsider is supposed to read this conflict, decipher the emotion and react properly.  I cannot understand this, but I can tell you that I cannot operate my emotions in that fashion.
I believe that as an Aspie, that I do feel emotions. I see myself as a burn victim of emotions where emotion is so hot and fiery to me that it burns me leaving pain long after the incident.  As a result of that ongoing pain, my interior emotional states and my ability to read the emotional states of others are superseded by my pain.  For me, emotional states and expression must have a place to go and therefore elevate to a more cerebral status.  In other words, I express how I feel with the giving of gifts, analysis of words, presence needs from others and through my special interest.
If we take NT love, for example, between a parent and child, we see a desire in the NT parent to be loved by the NT child.  The NT child shows this by seeking approval from the parent.  You may argue that there is more to it than that, but really human love at its basic is a sort of approval seeking  and validation system (storge).  It is more automatic and linked with familiarity.  Most people want to know they are loved and that what they are feeling is “normal” or valid. When our children become teenagers and stop seeking the approval of their parents, the love between that child and his or her parent must evolve to a more unselfish love, which usually presents a new bond as the teenager enters young adulthood. There is no longer a familiarity to rely upon and for the relationship to survive, the love must evolve into an uncircumstantial love (agape).
With an Aspie child, that system of approval seeking is not there, mostly because we don’t care what others think.  Often times the NT parent misreads this lack of approval seeking in the Aspie child as an inability to return love leaving the NT parent to questions if the Aspie child feels love at all.  In reality, the Aspie child feels love for you but already in that advanced way that adult children hopefully evolve love their parents (agape).  This love is an unselfish love far removed from approval seeking and validation.  Aspie love is not there to fill anyone else’s needs for love; Aspie love is there as a free gift for no particular reason at all.
If NT parents can embrace this love of their Aspie child and release their need for validation, then a wonderful joy will result.  The NT parent will start to notice the unique ways the Aspie child relays love and both will begin to believe their love is always there.  As an Aspie myself and a “burn victim” of emotion, I can tell you that the process of sorting how I feel and how to express my feelings are a long string of laborious, life-long tasks.  There is no greater reward for that hard work than just knowing that my friends and family freely love me, no matter how poor I am at showing my emotion in conventional ways.
Laura Nadine