What’s wrong with this picture?

Perhaps I should relate a little bit of history first.  My father buys me books as presents, which I then devour with a dedication not unlike Willy’s consumption of Pokemon videos on YouTube.  My last birthday netted me several additions to Sue Grafton’s Alphabet Mystery series.  C through J were stacked with the bindings facing outward, except for one “wrong” selection.  Being the helpful mother I am, I added A & B, and swapped out the “out of place” book with the appropriate series title.  A and B were obviously appreciated.  Can you catch which one wasn’t?

The answer:

“G” is for Gumshoe just didn’t make the grade.  Sorry, Dad!  The story was great, but the cover art has been rejected in favor of the Magician’s Gambit due to the more prominent G.

Perhaps this one would have been more acceptable:

I never knew cover art could be that important.

I never considered the possibility of consigning my son to an institution.  Children, no matter how challenged or challenging, are not disposable.  I was full of feelings that I could not put into words.  The closest I could come was:  “You can’t have my son!”  Later, those words developed into:  “My children aren’t broken, don’t try to fix them.”  On the Internet, I began to hear “whispers” of another approach.  Apparently, there was another way to look at these “problems.”  These “whispers” came from people who did not support the idea of neurodiversity and did not state the concept itself.  These people, when given the opportunity, told me my feelings were wrong and I was harming my child by not trying every treatment available, or at least the treatment they supported as the “miracle cure.”

I was a political blogger at that time, devoted to the anti-incumbent sentiment.  In short, I was already something of a rebel – ready and willing to challenge the status quo.  I was quirky, neurotic, and intelligent.  I struggled with social relationships and face-to-face meetings; and I already knew I had traits occupational therapists described as Sensory Integration Disorder.  I already knew that the best thing for me was to learn how to cope and for others to let me just be myself.  Why, oh why, could my boys not get the same respect I wanted for myself!?!

Sure, I was teased mercilessly as a child.  Sure, there were lots and lots of people who tried to marginalize me, and some even succeeded.  But it’s my head.  It’s my mind.  Why should anyone get to mess with that?  My husband, too, is neurologically different.  With bi-polar disorder, he’s faced a lot of outward pressure to conform to something he is not; and all that pressure seems to do is to make it more and more difficult for him to function.  Why should anyone get to change him?  Why can’t they just help him?  And, now, our children, who are so different they need the label “autism” to make them understandable – a label full of fear and shame and voices calling for their imprisonment.  Why should anyone get to mess with my kids’ minds?  Why should anyone get to say they are anything less than children?

All these feelings were denied, put down, and explained away.  I was wrong.  I was simply wrong.  The psychologists were right.  I was wrong, and if I were fixed I would know I was wrong.  If you’ve read this far, then I suspect you know how that feels.  It’s not good.  What was worse for me was how my words were twisted and distorted from what I meant.  I ask for help and people talk cure.  Words are my tools, as a writer, they’re my strength.  But all my words were being shot back at me, deformed and malign.

In the blogging venue, I stumbled on Estee’s The Joy of Adam (the old one) and somehow I got to Zilari’s Processing in Parts (the blog is now gone and I miss her).  There my feelings were validated.  Even when we didn’t agree, they didn’t say I was wrong for feeling the way I did.  And, they gave me a word:  neurodiversity.  I love words.  I collect words.  I understand words, with all their limitations and capacity for misstatement, I understand them.  That word was quite possibly the greatest gift any “community” has ever given me.  I could take all the pain, all the rejection, all the hurtful things, and I could dump them into that word.  And I did.  Suddenly, I was talking to people who didn’t shoot back cure when I said help, and it felt wonderful.

But, neurodiversity is more than that.  Neurodiversity isn’t for any one type or group.  Neurodiversity is for everyone.  Neurodiversity is for Willy who is doing so well by societies standards despite with his autism.  Neurodiversity is for Alex who still struggles so very much.  Neurodiversity is for Ben who is his own little man.  Neurodiversity is for Mark, who needs acceptance and accommodation because society sees him as a failure, and so he sees himself.  Neurodiversity is for me, though my differences aren’t “disabling,” I’m still too different to succeed without the acknowledgement that being different is okay.  And neurodiversity is for my neurotypical step-son, who has unique learning needs of his own, though he can get by in the status-quo society we live in.

To me, neurodiversity is about questioning what we know and what we think we know about how people think.  It’s about discarding prejudices and assumptions about the existence of a “proper” or “appropriate” way to think.  It’s about questioning the use of “normal” or “abnormal” to describe anyone’s thinking.  To me, neurodiversity is about recognizing and appreciating that everyone has a “different” mind, one that is unique to them, and that nobody should be marginalized, disenfranchised, or violated because their mind doesn’t meet somebody else’s standards or expectations.

Freedom of thought is a fundamental right that nobody has the authority to take away.  We can regulate and legislate against people’s actions.  We can regulate and legislate against people’s words.  We cannot regulate or legislate against people’s thoughts.  Thoughts are our own.  You don’t know someone else’s thoughts.  You do not understand someone else’s mind.  You can also perceive what goes on in someone else’s mind through their behavior.  And your observation depends on what the other person communicates and what filters you put on that communication.

To deem someone’s thoughts or feelings as right or wrong is the ultimate act of hubris.  To invade someone’s thoughts or feelings is the ultimate form of rape.  To re-write someone’s thoughts or feelings to suit your own purposes is the ultimate form of murder.

Behaviors and communications are regulated and society chooses which to legislate against.  We form rules, both legal and social, to shape what we consider appropriate.  This is not going to change.  What we can change is the limits and assumptions we place on those behaviors and communications.  Being different and expressing oneself differently shouldn’t be against the rules.

Self-expression is a fundamental right secondary only to freedom of thought.  There is one primary reason I know of to regulate or legislate against self-expression and that is immediate or imminent harm.  The proverbial “fire” in the crowded building.  The cliché “I’m going to kill you.”  A picture of someone with a bullet through their head left in someone’s mailbox.  A picture of a naked child in a suggestive position.  These are threatening, harmful forms of self-expression.  They either cause harm or suggest harm will be caused.  A secondary reason to regulate or legislate against self-expression is those messages that manipulate for the purpose of or with the result of doing harm.  Pornography, false advertising, perjury, and defamation fall under this category.

Silencing the dissenting voice because it doesn’t fit with others’ expectations should not ever be regulated or legislated against – not legally and not socially.  Nobody should dictate how someone must communicate.  Nobody should dictate what someone should communicate on their own behalf.  Nobody should dictate when someone can communicate.  Nobody should dictate why someone should communicate.  Nobody should dictate if someone should be allowed to communicate.  Anybody who does these things on behalf of neurodiversity, in my opinion, is distorting, deforming, and maligning the meaning of the word.

Neurodiversity is about recognizing and celebrating the individual in whatever shape, form, color, creed, brain, or label they come in.  Anything less is not “diversity.”  It’s certainly not neurodiversity.

***This post is inspired by the conversations taking place on The Standard Review, but the thoughts are my own.  I do not assume to fully understand or in any way express the thoughts, values, or beliefs Ed has expressed.  But I certainly do respect and appreciate them.***

“He’s not going to open,” the speech therapist said.

“Can you really blame him,” I asked, a little bemused.  “Brushing your teeth hurts, and it’s not like he understands how important it is so that he’ll do it anyway.”

They looked at me.  I blushed, feeling like I said something wrong.  Was a parent not supposed to admit that brushing one’s teeth hurt in front of a child?

Then, the OT said the words that changed everything.  “It’s not supposed to hurt.”

Startled, I jerked a little.  “Of course it hurts.”

“Are you talking about cavities,” the speech therapist asked.

“No.  Well, yes, that hurts, too.  But I’m talking about the gums.  Brushing your teeth hurts the gums.”

Their heads tilted in different directions.

“Maybe you’re brushing too hard,” the speech therapist said.

The OT shook her head.  “SID,” she said, a little sad and a little curious.

I felt the muscle in my forehead scrunch tight.  “Brushing your teeth doesn’t hurt?”

They shook their heads.  My tense muscles suddenly deflated, bringing posture to my attention.  My torso was all squishy again.

“Okay, so what’s SID?”

When my little boy was born I couldn’t have imagined that through him, and his brothers, I would learn how to regulate my own body.  It never occurred to me that brushing one’s teeth wasn’t supposed to hurt or certain products could reduce the discomfort.  It never occurred to me that other people couldn’t feel individual strands of hair shifted by the “breeze” created by a door opening and shutting behind them.  It never occurred to me that the sound a fire alarm makes doesn’t shatter other peoples’ thoughts; no, my panic was always attributed (by me and others) to our house burning down when I was little.  I didn’t have low muscle tone as a child; I was weak, scrawny, and had bad posture.  Hundreds of little differences, and I would never have known but for my children.

Autism: The Musical was released in April, 2007, and seemed like “old news” when I watched it.  Now, over two years later, it’s still having a newsworthy impact.

“I cannot make people value my daughter,” one mother said, while speaking of her child during an emotional showing of “Autism: The Musical” on Sunday.

That one quote quickly became a talking centerpiece at the event.

Honestly, I don’t remember the entirety of my reaction to this movie.  I do know there were some parts I considered seriously controversial.  I also know that Autism Speaks posted this description:  “As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.”  Not without irony.  I also remember that it provided an excellent platform for my brother to experience the diversity that is autism beyond what my three unique little boys can provide.

What I also know is that Autism: The Musical supports getting involved in Autism Speaks, Cure Autism Now, and the (seemingly out-of-place) Miracle Project.

If it serves as a vehicle for communicating the value of autistic persons, that’s pretty good news.  However, I can’t help but think valuing autistic persons and curing people of autism are conflicting paradigms.

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.

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.

13. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.

The implication here is that for neurotypical children education is called education, but because neurodiverse students sometimes require different lessons, different teaching styles, and different techniques, their education is called therapy.

I consciously try to foster my children’s sense of worth and power.  I try to build them up so that they and others can better recognize their potential.  I do not, in any way, consider my children “less” because they are not neurotypical.  And yet, I never consciously thought about the implications of the use of “therapy” to describe our efforts to meet their educational needs.  The specialists who assist us in designing strategies and “interventions” to help my children learn are called therapists and they perform services that are funded as therapy.  I never once questioned these labels.  Now, after reading this document, thinking about it, and letting the issues it brings up fully penetrate my mind and my heart, I’m amazed and chagrined that it never occurred to me.  I’d long lost my comfort with the use of “intervention strategies,” which is a common phrase that’s applied to services intended to assist individuals with special needs.  But therapy always seemed completely innocuous.

When I think about the purposes of therapy, however, the point becomes clear.  The reason my children require therapy is because they do not learn all the things they need to know in a neurotypical manner.  Therefore, to teach them the things they need to know, we need to use different strategies, techniques, and behaviors to help induce learning.  Learning is still the goal.  So, whatever the means, teaching and educating are still the verbs.

Comparatively, consider the teaching strategies sometimes used with at-risk youth.  There are many, from charter schools to special programs, but they’re not called therapy.  These are children who often have neurotypical development, but face challenges not experienced by mainstream society.  To educate them as we should, we need to find ways to compensate for those challenges and this requires changes in teaching techniques.  In our language, we recognize that these differences and unfortunately we sometimes use language that denigrates the worth of the children, but we don’t call it “therapy.”  That’s reserved for students with disabilities.

Just as kids who perform below average or have problems due to their experiences, children who perform above average get specialized educational programs as well.  When I was a student, I attended classes that were labeled “differentiated.”  More was expected from me and my fellow classmates than our regular peers.  Specialized lessons were prepared for us and techniques were used to prevent the typical boredom children with above-average intelligence often experience in school.  It was differentiated, but still education – not therapy.

So, why do we use therapy to describe techniques used to teach students with special needs?  One obvious answer is that it hasn’t occurred to well-meaning people that the word might be offensive or inappropriate.  This is not a reason to continue using it, but it does explain part of the problem.  Like myself, there are others who have never considered the word might be controversial.  If this were the only barrier, change would be relatively easy.  Not genuinely easy, but more easy than it would otherwise be.  Unfortunately, this isn’t the only reason.  There is one good reason I can think not to change the use of the word.  Now, I caution you, it’s not a very good reason, in that it’s ethical or right.  It’s a good reason in that it benefits those the educational services are intended to benefit.

Simply put, the reason to keep the “therapy” label is funding.  Specialized educational services are expensive.  Funds are not readily available for these services.  In many American schools, the only reason these services get the funding the need is because it is federal law that they be available.  In many American schools, parents have to fight to get school officials to recognize that the services provided must be dictated by the needs of the child, not be the availability of resources.  This is a legal right won in the courts.  And it’s still an issue.  By changing the wording from “therapy” to “specialized educational services” one risks losing some of the oomph that “therapy” has.  Whether it’s accurate or not, whether it’s ethical or not, whether it’s true or not, “therapy” has a more respectable reputation with hints of medical necessity that “specialized educational services” lacks.  It’s all about shades of meaning here.  The research behind therapy and that supports its use is better funded and better supported than the research behind specialized educational services.  Programs for at-risk youth and for children with above average intellects are cut before students with disabilities, because the programs for students with disabilities have been propped up by law through the research that supports the benefits of therapy.  By changing the wording, you change the meaning in the minds of some of those you communicate with (which, admittedly is part of the point) in such a way that it’s detrimental to the programs being funded.

Now, again, I’m not saying that it’s a good thing that other programs are so easily cut from school budgets.  I don’t believe that.  I believe that all children, regardless of what their needs are, should get the educational services that fill those needs.  Society’s sense of the value of unique individuals has not progressed to that point yet.  By pushing for the human rights implications of education over therapy, I perceive a risk in damaging the fundability of those education services.  Ideally, the human rights implications would take priority.  They should.  But, the reality is that these services are often necessary.  I’m reluctant to advocate anything that would endanger their availability.

Which is not to suggest Bev’s document does any such thing.  I believe the purpose of the document was to open our minds.  If that’s true, then it certainly worked for me.

As the first professional periodical to accept my non-fiction work for publication, I would like to highlight Autism Asperger’s Digest and tell you a little more about it.  AADigest won the Gold Award three years in a row from the National Parenting Publications Award competition.  “This is NAPPA’s highest honor, and the prestigious award recognizes the AADigest as one of the most useful products geared to expectant, new or veteran parents today,” says the AA Digest.

“Autism Asperger’s Digest has the unique distinction of being the only NAPPA winner to receive a NAPPA Gold Award three times in a row. We salute the editors and writers who provide such reliable, reputable and positive information for families with children and adults on the spectrum,” said NAPPA spokesperson Barbara Smith Decker.

After finding AADigest (far too late for comfort) I immediately became a subscriber.  Being accepted for publication, I got an additional year’s worth of subscriptions as payment.  For those considering trying to place an article here, I should warn you that there’s no financial compensation, but you’ll be published, you’ll get several copies of the issue in which your work appears, and you’ll get a subscription.  For a magazine like this, that’s a great deal – especially if you’re like me and are both trying to reach this particular audience while also being part of this audience.  Of course, parents aren’t the only ones who read AADigest.  They also publish information that is useful to service providers and family and friends of those on the spectrum.

One feature that I believe adds special credibility to AADigest is the column written by Dr. Temple Grandin, Autism & Asperger’s: The Way I See It.  Thus far I’ve been very satisfied with the magazine.  I don’t agree with everything I read there – I’d be disappointed if I did, because that would show a particular bias that is uncharacteristic of good journalism – but they take a very balanced approach between respecting the differences and blessings of autistic people and aiding people who trying to educate and assist autistic people.

I recommend you take a look at AADigest if you haven’t already.  You can browse past issues (some articles are available online), check out the contents of the current issue, or subscribe for a reduced price now!

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.

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.