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The Big One

  • Posted on March 25, 2011 at 1:06 PM

We were in the waiting area at the doctor’s office.  Ben needed a check-up before the doctor could sign the liability release form, which was required by the special horse-back riding center Ben and Alex are going to visit with their classmates.  While I’m rather doubtful that they’ll get either Alex or Ben on a horse…it’s important that the boys go.  It’s important that they try.

So, we were waiting.  A young man in a wheelchair who also had visible disabilities of the cognitive/developmental variety was also waiting.  Ben squirmed past him to scooch as close to the fish tanks as possible.  The young man smiled and laughed, gesturing at a fish in the tank.  Ben peered closely at another fish.  They shared the same space and the same interest and they were both fine with that.

Another little boy also occupied the waiting room.  He seemed quite normal: talkative, inquisitive, and sociable.  I watched Ben (while also giving him room to explore) from my place on the other side of the room to ensure he didn’t become a threat to the young man.  I overheard, from the other side of the room, the little boy’s mother answer a question in a not-quiet-enough voice, saying, “Well, there’s probably something wrong with his brain.”  I cringed.  The young man’s mother didn’t even flinch.  Maybe she didn’t hear.  Maybe she was so absorbed with her son that she didn’t listen.  Maybe she was so used to it she’d learned not to react.  Before I could come up with a response, Ben was off and so was I.

Later, after the young man had gone in to his appointment, the little boy came up to Ben and started talking to him.  While Ben will speak on occasion, he does not engage in these random social exchanges yet.  I told the little boy that Ben doesn’t talk much.  The little boy was rather disappointed.  He seemed to want someone to engage him—like entertainment, but with people.  And the little boy compared Ben to “the big one.” 

I suppose there are worse things he could have called the young man, but I couldn’t help but cringe again.  Maybe I’m reading too much into it, but it seemed a very inhuman way to refer to another person.

“The big one.”  Not “the big guy” or “the older boy” or even “the boy in the wheelchair.”  The little boy called the young man “the big one.”  So impersonal, so dehumanizing, so much like a thing instead of a person.

However busy Ben was being, I felt like this was a moment I couldn’t pass up.  So, I agreed that Ben was a lot like the young man—neither of them talked much, but they both had their own interests and they liked to play.  I told him Ben was autistic and that meant that he was still learning to talk.  I also prompted Ben to say, “Please let me go,” which is one of the phrases we’ve been working on and one I knew Ben would be motivated to say, since I pulled him away from the spinning circles he had racing each other for the few seconds it took to give him the prompt, have him speak, and then let him go.

Ben continued to play.  The little boy continued to ask questions.  I answered, building the concept of respecting people with differences slowly and subtly into our conversation.  Neither the little boy nor his mother seemed to understand what I was doing; they weren’t “against” it, but the idea of making “others” seem familiar and likable seemed foreign to them.

Behind me a mother sat with a boy who was too old to play with the preschool toys, but not quite as old as the young man.  This mother engaged in our little exchange, adding her own comments and observations to reinforce the subtle message I was trying to share with the little boy.  Her son didn’t participate directly, but his smiles and facial expressions seemed to indicate that he “got” it.

Then, the little boy was called to his appointment and the moment was over.  I don’t know if my efforts did any lasting good.  But I hope so.  For a moment, someone who was different was a person in this little boy’s eyes.  Ben didn’t talk, but he played and singed and liked things the little boy could understand.  All the while Ben played on, seemingly unaware.  Perhaps it’s a coincidence that Ben flashed a smile for the other mom sitting in the background.  But maybe not.  Ben doesn’t speak much, but he understands a lot more than most people give him credit for (and I suspect the young man does, too).  So, perhaps I taught my son a little about self-advocacy while reaching out to a little boy who needed a little help to see a person in someone who couldn’t talk like him.

Bringing Neurodiversity into the Classroom

  • Posted on November 17, 2009 at 10:42 PM

A little boy steps off the bus, confused by his unexpected surroundings.  This year—the year he starts kindergarten—the bus stops at the backdoor of a new school, instead of the front entrance of his neighborhood school, after a much longer bus ride.  Maybe he knows he’s being ushered into this new school through the backdoor, maybe he doesn’t.  Maybe he even knows the classroom he enters is segregated from his peers.  We assume he doesn’t know, because he doesn’t talk about it, because he can’t talk about it.  You see, this little boy is my own son, and he is autistic.  We assume he’s unaware that he’s being treated differently (not equally), but we can’t be sure.  Of one thing I am sure:  If he’s not aware of it now, he will be aware of it when he’s older, just like the many autistic adults speaking in favor of neurodiversity.

Unlike past forms of segregation, my son doesn’t spend his entire day in the special education room.  He visits the regular classroom and his peers are told that, even though he doesn’t stay in their room, he is part of their class.  He comes in with an aide who helps him participate.  Then, when it’s all too much, she takes him away.  The school system recognizes his educational needs differ from those of his peers and claims those needs cannot be met in a regular classroom.  I know my son’s needs are not met in a regular classroom, but does that really mean they cannot be?  I grew up learning that “different but equal” is not equal at all.  Sadly, that doesn’t apply to my children or others like them, because our society fails to recognize people with atypical neurological development as equals at all.

Some refer to this forced inequality as disabilism and see it manifested in pervasive ways throughout our society.  Disablism refers to the societal tendency to single out, exclude or mistreat people with impairments, because of those impairments.  Segregated classrooms for the cognitively disabled are only one example of disablism.  Disabilism is institutionalized into the public education system, in part, by the behavior of teachers, service providers, and administrators that Dr. Thomas Armstrong, an educator and author out of California, calls the disability discourse, which he described as “an institutionalized discourse consisting of specific words such as ‘disability’ ‘disorder’ ‘deficit’ and ‘dysfunction’ to describe the lives of these children.”  These societal behaviors shape the environment in which all of our children learn and grow.  Telling children a segregated child is part of their class, while well-intentioned, still fails to integrate that child into their class.

Unfortunately, the regular classroom is not only designed to exclude specific students from the learning environment it fails to include any child in the learning environment.  The public school system is designed to teach standardized curricula.  It is not designed to teach the individual students expected to learn that curricula.  Individual teachers can transform that environment into something special, but this ability is not a requirement for employment and often the resources to do so must be found outside the public school system.  This fundamental flaw is not the fault of individual teachers, principals, or school boards, but is built into the educational system itself.

Our children are unique with individual needs that can only be met when they are treated as people, instead of a homogenized group.  Our children do not come standardized.  Yet, our educational goals and the learning environment we create to meet those goals are standardized.  Our children get pushed through the system regardless of what they learn.  Unless, of course, their needs stand out so much that the system rejects them.  The child who does not and cannot fit the standardized mold is diverted into the special education system.  There, they face the unfortunate reality that they are not deemed equal in our society.  They are different, but not equal; and disabilism and the disability discourse shape their futures.

Neurodiversity is a two-fold concept that can change the public educational system for all children.  Neurodiversity refers to a civil rights movement crafted by autistics that seeks true equality for people with cognitive disorders and mental illnesses—founded on the belief that neurological differences are natural human variations and deserve the rights, accommodations, and acceptance any other human difference deserves.  Neurodiversity also recognizes that neurological development is not standardized.  Everyone develop unique neurological processes that should be recognized, respected, and facilitated.

Everyone is neurologically diverse.  Everyone has unique educational needs our education system fails to meet.  Instead of designing an education system that meets the individual needs of our children, we have designed an education system that meets societal needs for measurements, cost-control, and resource allocation.  Changes to IEP legislation that require recording strengths as well as needs, separating a grade into groups that study different levels of mathematics or reading, using inclusive language, and telling students that those segregated in the special education system are part of their class address surface issues.  But the problem goes much, much deeper.  Our education system is fundamentally flawed.  It does not meet, nor is it designed to meet, the needs of the students we wish to educate.

Our children deserve an education system designed to meet their individual learning needs.  Our children deserve a learning environment that teaches children, not curricula.  Our children deserve teachers that are trained and qualified to teach them as individuals, recognizing and meeting their individual education needs.  An Individual Education Plan shouldn’t be a privilege reserved for students with special needs, but should be provided to all students.  Our school systems need holistic change.  We need to re-think how we teach, what we teach, and who we are teaching.  We need to rethink the qualifications our educators need and we need to rethink the needs our schools should be required to meet. 

Change comes slowly and painfully.  Holistic change may be easy to envision, but it is very difficult to achieve.  It won’t happen this year or next year.  But it can happen.  Change requires a lot of work, a lot of planning, and often a new allocation of resources.  An individualized education provided by well-trained, highly-qualified, and fully-resourced staff doesn’t come cheap.  But our children are our future and they are worth the work and they are worth the money.  The real question is:  Will we afford our children the respect and consideration they deserve?

Treading the Muddy Waters: The Divided Communities of Autism

  • Posted on October 1, 2009 at 12:00 PM

Marc Sirkin, chief community officer at Autism Speaks, said:

We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.

I reluctantly agree, though I think it’s sad.  Once upon a time, it was common belief that people with dark skin are inferior to people with lighter skin.  Even the labels we used reflected these beliefs.  We called one black, the other white; we associated black with night, evil, and filthiness; and we associated white with day, good, and cleanliness.  This belief is no longer considered socially acceptable by the majority of our society.  Yet, some people still cling to this belief to varying degrees.  Despite the lack of social acceptability, some people experience racism as a common, even daily occurrence.

Someday the presumed inferiority of people with neurological differences will no longer be a socially acceptable.  Some day saying society should eradicate neurodiversity from the face of the earth will be widely viewed as a call for genocide.  And yet, when that day comes, some people will cling to this belief that neurological differences are marks of inferiority, that differences should be cleansed from people like so much filth.

It’s human nature to disagree.  It’s human nature to degrade.  It’s human nature to let prejudice, assumptions, and ignorance sway our thoughts and emotions.  It’s human nature to have to fight for the rights and worth of minority groups.  As much as I believe in the potential for individual human beings to be genuinely good, noble people; I do not believe human beings, as a species, will ever get passed these fundamental flaws.

Here and now, the inferiority of people with neurological differences is commonly accepted.  After all, these traits are “disorders,” so they are obviously inferior.  Not everyone feels this way, of course, but most people need to be awakened to the possibility that the obvious is not the truth before they can make a conscious decision about what they believe.  This awakening can and does happen.  I’ve seen it in the eyes of people I’ve talked to who have listened and understood.  There’s a visible transformation that plays out on their faces as they digest this new point of view.  Their faces reflect first confusion, then understanding, and openness to the possibility.  Then, their eyes widen with a moment of inspired surprise.  They see the faulty assumptions with new eyes and slough them off.  It’s a wondrous moment to watch this awakening transpire!

But, I’ve also seen cold, deaden eyes from people who closed their hearts and would not listen.  I’ve seen them turn away in disinterest; I’ve felt them turn on me in an all-out attack; and I’ve watched them smirk in derision.  Whatever their reasons may be, they are not open to the idea that someone with a label like “autism” or “bi-polar disorder” or “ADD” is equal unto themselves.  There’s little we can do for them but keep sharing our message.

To evoke the change that must occur before people with neurological differences are recognized as equals in society we must win the hearts and minds of as many as we can.  We must do so, not through coercion, but through conviction.  For each person whose heart burns with the cause of the neurodiversity movement there will be a different strategy and a different set of tasks.  No way is wrong and I do not presume to dictate anyone else’s approach to sharing this ideal.

My approach is three-fold.  First, I want a better world for my children.  My children are autistic, and if they face as adults the same world they face as children, they will spend their lives marginalized, ostracized, and victimized by the callous society which repeatedly fails to recognize their humanity.  I don’t want that for my children.  I recognize that to truly transform this world one of the things I need to do is converse with those autistic adults who are also trying to change the world.  These are those who can help me understand my children better and can help shape the messages I need to share to improve the world for my children.

Second, I want to help all the traumatized, victimized parents, and their children, who are reinforcing the world as it is.  This goal is much more difficult for me, but it is my conscious choice to pursue it.

Once, a long while back, I came across a story about Alison and Ryan Davies.  Ryan Davies was a little boy with autism, much like my own children.  His mother, however, was nothing like me.  She was traumatized by the experience of raising her autistic son.  She was so traumatized that she did something I found unthinkable.  She took her son to a bridge, held his hand, and jumped, pulling him down to his death.  This was the first story of this nature that I had ever read and it is burned into my memory and my soul.  It’s a constant, aching brand on my psyche.  It was the first story, but it hasn’t been the last.  One thing that makes this story so poignant for me is what came after.  Alison Davies’ sister actually defended the mother’s actions, and described this premeditated murder as “an act of love.”  Even now those words make me sick to my stomach.

The story broke my heart.  More than that, it made me so very angry.  Time and again, I would come across of a parent who took their autistic child’s life and the anger would boil inside me.  I condemned these parents whole-heartedly.  It was so easy to be angry, so easy to condemn them.  I couldn’t understand them and I refused to try.

But the turmoil of these emotions got in the way of raising my own children.  I had to let that anger go.  I still mourn the loss of these precious children, but slowly I have developed a compassion for their parents as well.  Being who I am, it is difficult to imagine someone who just didn’t question the diagnoses and prognoses of the medical professionals.  It is difficult to imagine the loss, the hopelessness, and the pain of these traumatized parents who couldn’t fight the precepts society that doomed their children.  I sought knowledge and I cling to a very peculiar hope because it is an integral part of who I am.  Furthermore, I have loved and married a man who is marginalized by society, who is deemed to be of little worth, simply because he’s not normal.  I’ve seen how the way he is treated has done so much more harm than his neurological differences.  I’ve known people who have been dealt a bad hand – one that, should the precepts of society prevail, would have limited them to menial existences – yet they triumph over extraordinary circumstances.  I know in my heart that my children are precious; and I know in my heart that the child and the autism are forever intertwined, but that the challenges posed by autism will only be a fraction of the challenges they face because of how the autism is perceived.  For so long, I couldn’t tolerate anyone who didn’t have this understanding.  I assumed that they chose to be traumatized, knowing full-well there were viable alternatives.  For some that may be true.  But for many the ideas society accepts are all they’re really aware of, they cannot imagine another way to perceive their child.  Unfortunately, the idea that society accepts is that children with autism are broken and we don’t have any way to fix them.  These parents desperately need another message, another voice.  They need a voice that helps them break through the trauma.  They need a voice that doesn’t victimize them, but empowers them to help their child.  My voice will be part of that larger voices that seeks to open their minds to the possibilities, instead of thrusting them down into the depths of despair.

My third purpose is the belief that the best way to change hearts and minds is to bring this message into the mainstream.  For many of the people I talk with in my community neurodiversity is a concept with which they are completely unfamiliar.  Teachers, therapists, psychologists, and parents find the idea completely foreign, though not always completely unwelcome.  Communicating primarily online creates this illusion that the idea of neurodiversity is wide-spread.  It certainly has an international following.  But that isn’t enough.  As wonderful and the Autism Hub and the many bloggers who write about neurodiversity are, you only find them if you know to look and care enough to make the effort.  And there are those who are getting this message into the mainstream, but it’s still too few and too far between to have the kind of impact we need to enact the kind of change required.

Bev of Asperger Square 8 said:

Unless you are autistic, or your family member is, you probably don’t spend much of your days reading and thinking about what it means. You take the sound bites, read an article or two, watch 60 Minutes or Larry King. Nothing wrong with that, it isn’t your job to figure all this out.

While I certainly understand what she’s saying, I must disagree.  There is something wrong with the majority of people remaining oblivious to all the damage being inflicted on neurologically diverse people by the “squeaky wheel” of those who want to eliminate them.  There is something wrong with a society that will propagate the views of the powerful, while leaving the weaker minority with few means of communicating with the masses.  By allowing it, these everyday people provide their implicit approval.  By remaining ignorant of it, they don’t even know they’re doing so.  It’s not enough for people who have a connection to neurologically diverse people to care about what happens to them.  This issue deserves everyone’s attention, because it affects them whether they know it or not.

The image of puzzle pieces – scattered and awry – is associated with autism.  I’ve never understood that.  For me, the image I associate with autism, or at least my place in association with autism, is that of a bridge.  This is not a bridge to be jumped off of, but a bridge between perceptions.  I am the bridge between my family and society.  I also want to be one of the bridges between society and neurodiversity.  The change must happen.  The societies in which neurodiversity is strongest are societies based on freedom.  If the majority of the people in these societies truly knew, truly understood what is going on under their noses and being done in their names, they would not tolerate it.  I want to be one of the bridges from the understanding they have and to an understanding of the truth behind the sound bites in order to effect the change that we all need so desperately.

Bev and Bruce Say It Well

  • Posted on September 30, 2009 at 1:16 AM

Asperger Square 8 has a new post definitely worth reading.  Beautifully written and deeply meaningful, Bev addresses the news that Bruce Springsteen will be performing a benefit concert for Autism Speaks.  While her entire post is worthy of a good read and a good cry, I want to respond to these words:

Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.

My son, Alex, is one of these “real” autistics.  He does not speak, at least not in the sense that his vocalizations consistently and effectively communicate.  However, that does not mean he does not communicate, though it does mean he can be difficult to understand.

Yesterday, I was speaking with Ben’s therapists who were playing with Ben in his room.  We had plumbers over doing smelly things in order to bring our upstairs bathroom back to life – without the constant sluicing of our kitchen cupboards.  So, to release the smelliness we had the windows propped open.  One of the things I used to prop open a window was a box (100+) of crayons that were upstairs as part of Ben’s therapy supplies.  Alex saw the box of crayons and wanted them.  Alex loves to color and he goes through crayons rather quickly and removes the paper and breaks them into smaller pieces for his own, unknown reasons.  So, Ben has his own crayons that haven’t been Alex-ified.  And now Alex wanted them.  After all, he hadn’t had new crayons in two whole weeks.

I told Alex I had other crayons for him and these were Ben’s.  Alex accepted that answer and we both went downstairs, and I went all the way to the basement to get a little work done.

A few minutes later, Mark came down with our merry little catch phrase: “Just in case you didn’t know, our kids are weird.”  This is not said to be derogatory.  It’s just one of the things we say to capture the chaos that is our lives.  It could just as easily be me saying, “Just in case you didn’t know, my brain is weird,” with me then launching into one of the strange places my thought patterns had taken me this time.  So, Mark came down to describe an oddity to me.

This time it involved Alex, who regularly leads people to things he wants in order to communicate.  Alex took Mark by the hand and led him to the living room (which happens to be by the stairs that lead up to Ben’s room).  Then, Alex pulled Mark across to the other side of the house to get a piece of paper off the pile in the den.  Then, he pulled Mark back to the living room.  Knowing nothing of the exchange Alex and I shared moments ago, Mark was understandably baffled.

I knew exactly what Alex meant, however, so I handed Mark the box of new crayons I had tucked away for Alex.  Then, Alex contentedly peeled, broke, and colored away for most of the evening.

It certainly would have been easier if Alex could have said, “Dad, Mom said I could have new crayons and I would like them now, please.”  But Alex cannot say that.  That does not, however, mean he cannot communicate it.  The key to communication is not what you say, it’s what the person you’re trying to communicate with hears or observes.  Because Alex communicates in a way that is difficult for others to “hear,” we often need interpreters to understand him.  In this case I was the interpreter, but other times I’m the one who needs the interpreter.  Someday, when he’s ready, Alex will try to communicate with a bigger audience.  Hopefully there will be people willing to “listen” no matter how he is tries to communicate.

Running Scared

  • Posted on September 16, 2009 at 10:27 PM

I work in the basement where, despite its many inconveniences, the boys cannot color on or disturb my work-in-progress.  Since the basement does not yet have a working telephone line, I rarely concern myself with phone calls when my husband is upstairs.  This call was no different.  The phone rang.  I paid no attention.  Mark answered the call, but it didn’t seem to concern me or he’d have called down the stairs for me to come up.  I didn’t know my son had been lost and was found again.  I didn’t know I needed to encircle him in my loving arms once more in order to regain my equilibrium.  Blissfully unaware of the almost-disaster, I continued my work despite the Labor Day holiday.

It’s strange how that feeling of panic and worry can arise even after the danger is over.  My boys are runners, meaning they don’t like to be confined to a specific space and will run if given the opportunity.  Willy was our most ingenious runner.  When he was four years old, and my youngest was just an infant, he would “escape” out the sliding glass door that lead to the sidewalk and the parking lot outside our apartment.  Being a problem solver, he would wait until I was feeding Ben to make his getaway.  He never went far, but he went outside without supervision.  In a diaper.  In the winter.  We tried everything we could think of and asked everyone we knew to try to keep the door closed.  We tried various devices, including tape over the latch and a rod that held the door shut.  Each and every time, Willy found a way around our attempts to keep him inside.  Eventually, we broke our lease and bought a house, because the landlord would not put in a bolt lock to keep the door closed.

The advantage of owning our own home was not that we could guarantee the boys didn’t get out.  It was that once the boys found a way out we were free to do whatever it took to shut the way as permanently as necessary.  Our measures to ensure our children’s safety would abuse the aesthetic sense of just about anyone, but aesthetics is very low on our priorities.  For example, we have a big, beautiful bay window in our living room.  One window is big and cannot be opened.  On either side are two smaller windows (half the width, but the same height) that could be opened when we first moved in.  The screens were fairly easy to pop out – just exert a little pressure.  The locks on the windows were stiff and our children had trouble with things like buttons, so I didn’t see it as a potential danger spot.  Until, one day, while I was doing dishes, Alex opened the window, popped the screen out, and went outside to get a closer look at the cars.  The ones that moved.  On a very busy street.  By standing in the middle of the road.  It took him less than a minute to get from our safe, seemingly secure living room to the middle of the street.  I heard the honking and took a peek.  There was Alex, happy as he could be close to so many cars with their engines whirring, completely unaware of the danger.  After a few attempted solutions, I nailed them shut from the outside.  It’s not pretty, but it works.  The boys haven’t gotten out that way again.

They’ve gotten out other ways, though.  Through the garage, through the fence, and through a door someone left just a little unlatched.  Most times we catch it pretty quick.  But there have been times when we’ve called the police for help.  If they want to run and they get out, a minute out of sight can mean they’re also out of hearing.  It’s always scary and there’s always a period of panic, right under the surface, despite the necessary crisis management.  Each time there’s a voice inside me nobody can hear that’s screaming and weeping.

It’d been quite a while since any of the boys had run, though.  The last time was when we were at Willy and Ben’s school (back when they went to the same school) and Alex had slipped away in the press of bodies and gone to the playground.  Mark had the boys in the Early Childhood room, while I was filling out paper work.  Mark was doing something with Ben when the door opened, shut, and Alex was gone.  Within moments the school’s staff was mobilized.  People knew Alex, because he used to go to Roosevelt.  I heard about it over the loud speaker and rushed back.  It seemed like an hour, but was maybe twenty minutes, and he was spotted on the playground and brought to us by one of the therapists.  That was about three years ago.

Then, last week, it happened again.  Not at our house.  Not at school.  Alex was outside in his respite therapist’s fenced yard playing happily.  His therapist was inside for the moment.  Then, another adult came through the gate in the fence.  With a big dog.  Leaving the gate open.  Alex, who is a bit skittish around dogs, went out through the gate to get away from the dog.  The therapist spotted the lapse quickly.  He went looking, using his cell phone to call the police.  But the police had already found him.   A couple saw Alex and stopped him from crossing the street against the light.  They tried to get Alex into their car, but Alex wouldn’t go.  They had no bad intentions, but Alex wouldn’t get in their car.  So, they called the police and the police car came and picked up Alex.  Apparently he went with the police without a problem.  This is good to know.  I’ve always worried that Alex, never responding to lessons about strangers, would go with anyone.  I was wrong and am glad to be wrong.  Safe with the police, they took Alex back to the therapist’s house.  It took all of ten minutes.

Then, the therapist called us to tell us all about it.  When I finally came upstairs and learned what had happened the same panic and worry flooded through me.  I knew Alex was safe and was with his therapist.  But the anxiety didn’t go away until I could take Alex in my arms once more.

Humane Dentistry

  • Posted on September 4, 2009 at 10:24 PM

Alex is our most complicated child.  The symptoms resulting from his autism are the most significant of our three children.  He’s nine years old and still hasn’t found an effective means of communicating consistently.  He rarely attempts verbal communication.  His sensory needs are difficult to meet, because he experiences a complicated mix of hyper- and hypo-sensitivity that seem to fluctuate without notice or apparent cause.  The many trained professionals over the years have made little progress in deciphering the mixed signals we get.  We don’t yet know how to help Alex interpret his environment consistently, which frustrates all of us.

Another ailment which is distinctly Alex’s (of my three boys) is something I don’t have a good name for.  Basically, when his adult teeth grow in his baby teeth have this nasty habit of not coming loose and falling out.  The adult tooth and the baby tooth compete for space where only one tooth should be.  It creates a double row of teeth in one spot that pushes both teeth out of ailment and affects the surrounding teeth.  He also has a very, very sensitive mouth.  When we first started brushing his teeth, he would occasionally gag to the point of throwing up.  Since then he’s learned to control his reactions.  When he cannot tolerate having his teeth brushed he just clamps down his teeth and lips so the toothbrush can’t get in.  If we catch him at just the right frame of mind and level of sensory management, we can occasionally get a tooth brush in his mouth and clean his teeth.  But, it’s not enough and he already shows signs of cavities.

Due to these complications, taking Alex to the dentist seems very inhumane.  To make the experience less traumatic, we go up to the dental clinic in the Children’s Hospital in Milwaukee.  They have a well-trained staff and special equipment housed in a seemingly ideal setting.  We take Alex into a private room with subdued lighting (except for the dentist’s lamp).  They have a hug blanket, which is a form of restraint intended to help keep him still and apply pressure that helps keep him calm.  But then we have to get the wedge in his mouth so the dentist can poke around in there.  The hug blanket isn’t enough, so on comes the happy gas (which isn’t available at the local dentist’s office).

Last time we took too long turning on the happy gas and Alex experienced such a severe reaction to the cleaning process that he threw up.  After that, a lot of happy gas was used.  Alex fell asleep or a state of near sleep, which allowed the dentist to x-ray his teeth (revealing the near cavities) and finish some of the cleaning.  Even in this state, Alex was uncooperative.  Furthermore, I was concerned that he’d had too much of the gas.  He lolled a great deal and lay down in the car on the way home.  It’s an hour and a half to two hour drive back to our house.  I was alone with Alex and as much as I would have liked to watch him, I had to keep my eyes on the road.  I felt anxious for his well-being all the way home, and would reach my arm behind me to touch him and feel the rise and fall of his shallow breaths.  He was out of it and upset for the rest of the day.

After seeing how traumatic the experience was for Alex, the dentist recommended putting him under general anesthesia in order to perform all his dental care needs at once.  This is a procedure the dental clinic is able to do, but getting MA approval is difficult.  Before we can get that approval we have another regular visit to see if just maybe it’ll go more smoothly this time.  It’s a week away and I’m not looking forward to it.  Luckily this time I will be picking my mother up at the airport on the way back, so I’ll have another set of eyes to watch Alex.

The question I ask myself is:  What would be the most humane way to get Alex the dental care he needs?  I don’t like restraints, I don’t like doping him up with “happy gas” (which, btw, doesn’t make him at all happy), and I don’t like the idea of putting him under.  Yet, without the restraints and the happy gas, dental care would be even more traumatic for Alex.  And putting him under may be the least traumatic alternative.  If teeth problems didn’t cause so much pain (as I know from my own mouth and through observing others), then I would probably say we should just forget the whole thing.  But cavities are painful.  Untreated cavities can lead to cysts, which are even more painful.  And, while I cannot be sure, I cannot imagine that having two teeth where there should only be one would be all that comfortable.  I especially cannot imagine that, since his aggressive behavior started right around the time the first baby tooth refused to come out.  It might be coincidence, but he might be in constant pain or maybe just discomfort.  That would certainly explain his irritability.  But so would the general frustration of being unable to consistently communicate in a manner that is understood by others.

The most difficult thing for me is the ignorance.  I don’t know the best thing to do for my child.  If I knew, but was unable to do it, I could at least plan and strategize how to achieve my goals.  But, not knowing leaves so few options.  At this point, I can only make the best choice possible – using both my head and my heart to see which way to go – and hope Alex can forgive me if I’m wrong.  As a parent, there is just so much of that.  We second-guess ourselves, because some of the choices we make are just wrong.  But we never have all the information; we never know all the consequences; and we cannot see inside our children’s minds or ask their future selves to know what they would choose if they were able.  We must do the best we can and remember to say “I’m sorry” when we’re wrong.

P.S. Left Brain/Right Brain also has a post about autism and dentistry that leads you to an article by Darlene Oakley.

Back to School Ruminations

  • Posted on September 3, 2009 at 8:00 AM

Comparing and contrasting Willy’s educational experience with that of his brothers always makes me a little sad.  Willy is fortunate in that he’s found a way to take the world as it is and interacts on a level that most people understand.  He’s very much autistic and still faces many challenges in how he interacts and what he’s considered able to do and what he is able to do (which are not always the same).  But, he has a strong support system at Roosevelt and is able to compensate for most of his differences to succeed in a socially recognizable way.  Alex and Ben are on a different track.  They do not demonstrate a sufficient amount of self-control, communication, or interaction to participate (as per the Janesville school system) in an integrated environment.  Their educational needs are met in a segregated classroom called the CD room – for cognitively disabled.  The fact that they are not, in fact, cognitively disabled plays little significance in this designation, because they are not able to communicate their intelligence in an academically recognized fashion.  Roosevelt is not equipped to meet their needs, so they are sent to attend school together at Kennedy.

I don’t mean to slam Roosevelt or Kennedy.  The decision here is made at a level neither school can change.  Both are goods schools with good people and both try to service their students as they are able.  But I cannot help but remember my own time in school.

In one of several grade schools I attended there was a student with Down ’s syndrome.  I only saw her on the playground and many of the students made fun of her.  She first came to my notice when I saw another child push her for no apparent reason other than her poor balance meant she’d fall with only a little push.  I didn’t usually see things like that, because a friend and I would go off as far in the field as we could to play our own games of make-believe.  This girl would always come out a few minutes later than us, so we’d already be gone.  After seeing our classmate push her down, we went to her an invited her to come play with us.  She couldn’t quite follow our game, but enjoyed our company. 

In junior high, I was somewhat segregated.  They called the classes I took “gifted and talented” or “differentiated.”  They were the opposite of CD classes, designed for students who excelled instead of those who struggled.  I enjoyed these classes, because I was challenged academically for the first time in a long while.  Yet, integrating with non-differentiated students in the regular classes was difficult.  I was set apart, and they knew it.  Most of my fellow differentiated students had the social skills to compensate, but I didn’t.  I was an outsider.  Not like any of them and being segregated for most of my classes seemed to make that worse.

In all my time going to school and in all the different schools I attended, I was only aware of the one girl with cognitive disabilities.  The rest were kept out of sight, but I know now there had to have been more.  Kennedy doesn’t try to keep Alex and Ben out of sight.  Each child is assigned to an age-appropriate classroom with their typically developing peers.  Each will visit this classroom as their schedules allow.  And, at my recommendation, last year on Fridays one of Alex’s peers would come to the CD classroom to visit him.  This became a special treat that his peers looked forward to and enjoyed.

So, progress is being made.  Yet, I know fully integrated schools exist and that they can work for the benefit of all the students.  I know that children with special needs should not be kept out of sight for the comfort of the bigots.  I remember sitting in school, surrounded by my predominantly white peers, and learning about the history of segregated schools.  I remember when I first learned what happened in Little Rock.  I remember raising my hand and asking, quite honestly, “But why would they be angry that the kids wanted to go to the good school?”  I didn’t understand.  In a way, I still don’t.  I can wrap my head around racism and bigotry.  I see it as wholly illogical, but I understand that it is driven by emotion not intellect.  I cannot wrap my heart around it.  I cannot understand those emotions that drive racism and bigotry, however well I can label them:  hatred, fear, disgust.  I understand that people crave a sense of commonality and that those outside that commonality face prejudice.  That it is so, and understanding that it is so, doesn’t help me to understand why.

I’m thankful for the progress that has been made and look ahead sadly to how much more must be done.  But, my boys are lucky.  They have a chance.  So many have their chances stolen from them by prejudice and hatred.  I cannot help but think my failure to understand leaves me powerless to affect needed changes.  But I will try.  Everyone deserves the chance to live, to be educated, to grow, to develop – without artificial roadblocks keeping them from their own potential.

Making the Connection

  • Posted on August 23, 2009 at 5:15 PM

When Willy was diagnosed, we were told Willy would never say “I love you.”  The doctor wasn’t just talking about the verbal expression of love, but implied my son lacked the ability to feel love.  Now, seven years later, Willy says “I love you” at least a dozen times a day.  He expresses love through hugs, kisses, and quiet acts of compassion.  It is easy to see and to hear and to feel Willy’s love.  He has deep connections with the important people in his life – both adults and children, whether they are family, friends, or service providers.  He loves and he shows it in a way that’s easy for others to recognize.

Alex, on the other hand, is predominantly non-verbal.  He’s said “wuv oo” maybe a dozen times in his entire life.  Like all his words, these are rare precious.  Yet, even for Alex, the implication that he does not love or cannot show his love is entirely wrong.  Alex loves the same way he does most everything else – passionately, loudly, and deeply.  Alex is sparse with hugs and kisses most of the time, then has sporadic outbursts of affectionate touching where he wants to be hugged and kissed for long periods of time all at once.

Alex shows his love in other ways that become easy to read if you make the effort.  His face lights up when his Noni (grandma) comes over and he bounces up to her, holding onto her, and trailing behind her like a loud, wiggly shadow.  He grabs people he loves as if he’s literally trying to pull them into his experience.  He jumps at them and presses himself against them like he’s trying to occupy the same space as they are.  His touches can be gentle, but usually he uses the same pressure on others that he likes for himself – deep, rich pressure that reaches to the bone.  When he greets those he loves his vocalizations reach an excited pitch that has a different tenor and tone than any other time.  He loves with his whole being, every fiber and sinew, and expresses it the best way he knows how.  Yet, many people outside the chaos of autism would not see or interpret his love accurately.

* * *

Some people assume that “normal” people can communicate with each other and autistic people cannot or cannot do so easily; thus, there is either no communication or faulty communication coming from the autistic people.  Those who have studied communication, however, know that communication is a difficult process.  Even “normal” people rarely communicate effectively.  What I say, you may hear, but you’re likely to interpret it differently than what I mean – if you’re listening at all.  Truly effective communication is rare.  People hear, but they don’t listen; people read, but they don’t seek to understand.  We talk, but that doesn’t mean we communicate.

When an autistic person is trying to communicate, this problem may be exacerbated by the different ways some autistic people use to communicate.  For example, Willy is heard more often than Alex, because he communicates in a way that neurotypical people are familiar with; whereas, Alex communicates in a way that is all his own, and most people have no experience listening to him and assume he’s not communicating anything.

In this sense, it is true that some autistics do not communicate effectively.  In order to effectively communicate, the hearer has to listen and try to understand.  That does not mean it’s true to say that autistics do not express themselves or their emotions.  Whether they use words or not autistics do express themselves.   Some use a set of verbal and body languages very different from our own.  Others learn the set of verbal and body languages we use daily, but it is as if these means of communication are foreign to them, like French or Spanish is foreign to a native English speaker.  Even if they become fluent in the ways we communicate it will still be more challenging for many autistics to communicate unless we learn their verbal and body language as well.  Communication is a two-way street, and we shouldn’t expect them to do all the work.

* * *

A while back my brother came to visit.  He can rarely afford to make such a trip, so it’s always something of a shock when he’s here (for him, not us).  He loves his nephews dearly and tries very hard to communicate with them, but it requires a period of adjustment, especially with Alex.  Willy is verbal and very physical and adores his Uncle Pat to no end.  It requires very little work for them to re-establish their connection.  Benjamin Patrick, my brother’s namesake, loves to be lifted high and tossed around.  That and an unconscious sense of trust (that’s doled out selectively, but uncanny wisdom) is enough for Ben to build a bond with someone.  Alex is more puzzling for most people.  It’s not that he adores his Uncle Pat any less, or that he doesn’t appreciate the physical play that my brother is so good at, but Alex communicates in a way uniquely his own.  Understanding Alex can be difficult even for those of us with a lot of practice.  For someone without that practice, sometimes it’s simply impossible; often an interpreter is necessary.  Alex is also more wary than his brothers.  He likes to stay back and observe before he joins in any action.  He’s also adapts more slowly to major changes, but handles minor ones more easily.  So, when my brother came Alex held back at the first.  But once Alex regained his sense of equilibrium while having Patrick in the mix he was able to interact with Uncle Pat as well as he can, but it still was difficult for Patrick to understand him.  It wasn’t that Alex didn’t express his love or his enthusiasm in having Uncle Pat around, but that it was more challenging for Patrick to understand him.  Patrick knew this, accepted it, and did the best he could to understand.  Most people don’t bother.

In order to connect with people socially, communication is required.  In order to have communication, there needs to be an expression, a “listening” period, and comprehension.  To say autistics do not express love or that they do not try to make connections with others is wrong.  The expression is there, but may come in different forms than most of us are familiar with.  The questions becomes:  “Are you listening?  If you are, are you trying to understand?”  From what I’ve seen, the answer is often no.  We hear, but we do not listen.  We talk, but we do not communicate.  When communication fails, we blame others because they didn’t speak to us.  Most of us don’t stop to ask, “Did I listen?”