Category Archives: My Soapbox (Shame on Somebody Somewhere)

Dear Morrissey: What Rings True

If you haven’t  seen the story in the news, here’s a little background.  The Duchess of Cambridge (formerly Kate Middleton) entered the hospital with a condition of pregnancy called Hyperemesis Gravidarum.  (I wrote about Hyperemesis just prior to the pregnancy announcement by Prince William and Kate.)  An Australian radio show then decided it would be amusing to prank call the hospital and attempt to get private medical information on the duchess.  They succeeded.  Shortly thereafter, the nurse who they duped committed suicide.   Morrissey, a British musician, decided to weigh in on the media circus with his own opinion. 

Dear Morrissey,

Recently, you made disparaging comments regarding the Duchess of Cambridge’s bout with Hyperemesis Gravidarum and her hospital nurse’s suicide. 

“There is no blame so far placed at Kate Middleton, who was in the hospital, as far as I could see, for absolutely no reason.  She feels no shame about the death of this woman. The arrogance of the British royals is staggering. Does she have a health condition? Is it anorexia or is it pregnancy? So much hoo-ha and then as soon as this woman dies she’s out of hospital? It doesn’t ring true.”

Mr. Morrissey, I am not a “royal watcher”, nor do I have any prior opinion of you whatsoever.  What I am is one of the 1% of women affected by Hyperemesis Gravidarum – a condition you clearly know nothing about.  Yet, despite your obvious ignorance of the subject and your lack of access to the Duchess’ medical records, you have decided to place blame on her for the suicide of a woman she doesn’t know?  Really? 

Since you have not taken the opportunity to educate yourself before this somewhat sad attempt to gain attention, I would like to take a moment to address your commentary.

  1.  Hyperemesis is not anorexia.  Pregnant women of any size can suffer from it.  During both of my pregnancies, I was more than 50 pounds overweight.
  2. Hyperemesis is a “health condition”.  It is not, as you appear to assume, simple morning sickness.  It is an extreme form of nausea and vomiting that causes dehydration and can lead to kidney failure, pulmonary embolism, and even death.  (Charlotte Bronte is thought to have died from the condition.)  It is a condition that, if not able to be eased medically, sometimes requires terminating the pregnancy to save the life of the mother.  That is rare, but it happens.  For that reason (and for the health of both mother and child), it is vital to rehydrate the mother and provide her with intravenous nutrition until she is capable of holding down food. 
  3. A typical hospital stay for an acute case of Hyperemesis is between one to a few days.  It is rare for a woman to be hospitalized for the duration of her pregnancy.  Usually, the hospital puts in an IV and administers and antiemetic (such as Zofran) until the mother is rehydrated and the vomiting under control.  Then she is released.  Often, continuing antiemetic medications is enough to keep her from becoming

    A PICC line

    dehydrated again.  Sometimes, it becomes necessary to administer a PICC line for the remainder of the pregnancy to deliver nutrients and hydration.  To attempt a correlation between the nurse’s death and the Duchess’ release is both ignorant and cruel.  The length of her hospital stay was quite typical for Hyperemesis. 

  4. You denigrate the Duchess for not feeling shame.  Why should she be ashamed for becoming ill?  She didn’t make that phone call.  And, having had the condition myself, I can assure you that she has little opportunity to process the event in between gagging and retching.  How was she supposed to predict such a series of events? Does her celebrity negate her right to hospital care? 

The only arrogance I can see in this situation, Mr. Morrissey, is yours.  Having checked out your biography on Wikipedia, I can find no evidence of your medical training.  And, considering your scathing indictment of the Duchess, I suspect you are not well-acquainted enough to be privy to her personal medical file.  Therefore, I believe the only thing that “doesn’t ring true” is your ill-conceived opinion.  Unfortunately, you have already done some damage.  There are people out there who will read your comments and assume this condition is not real.  Instead of doing good with your celebrity, you have chosen to publicly invalidate an already little-recognized, under-researched, and dangerous medical condition affecting thousands of innocent women and their babies.  I would suggest there are greater uses for your fame than this.

Sincerely,

Flappiness Is

 

Ask Me No Questions: On the Child I’ll Never Have

When you have a young child with special needs, it is only a matter of time before you are asked a very personal question.  Are you planning to have another child? 

Some would consider this a straightforward question.  Others would call it rude.  I’m of the opinion that it depends upon who is asking.  If it is a close friend, that’s okay.  If it is an acquaintance, then it is presumptuous.  (And if it is a nosy, judgmental person, then it is outrageous.)  It’s not really fair, I suppose, to accept the question from some but not others.  Then again, some people have a key to my house – but not others.  Most things in life are simply relative.

It seems like a simple question.  People ask it all the time of newlyweds — though they shouldn’t.  But, when you ask it of a special needs parent, the question is loaded with implications other than the cost of diapers.  In our case, the question is echoed by many other questions — all silent, yet screaming. 

Don’t you want to try again for a “normal” child?  Don’t you want to give your “normal” child a playmate?  Are you going to take a chance on having a child with the same condition?  Can you afford another child with the same special needs?  What if…?

“What if” indeed. 

The decision to not have another child is a very personal one, for all parents — but especially for those with special needs kids.  And one that doesn’t come with a correct answer.  I wouldn’t dream of suggesting that another parent make the same decision.  It depends on who you are, and it certainly depends on your circumstances.  Regardless of the choice one makes, it is fraught with worry and the judgment of others. 

I always wanted at least three children.  Being an only child, I envied those with large families.  When Sean and I married, I made certain he was on board with this plan.  Even during the worst of two hyperemesis pregnancies, I was still determined. 

When my second child began to show signs of autism, however, we put off the decision.  Between shuffling our NT child to preschool and ferrying our son to therapy, a third child seemed out of reach.  Until now, we just left it as a big maybe. 

I turned 39 recently.  And, although many women choose to have children later these days, the risk of conceiving a child with genetic abnormalities increases with age.  And the current statistics are that a woman with one child on the spectrum has a 1 in 10 chance of having another. 

But the truth is that our family – on both sides – is filled with so much “otherness” (ADHD, autism, gifted, mental illness, and more) that I believe the odds are significant that we would have another “other” child – perhaps one even more severely affected by…whatever. 

If money were not a factor — say, I won the lottery?  I probably would. If I could ensure that, no matter what, a third child would be cared for comfortably and with dignity, then…maybe.  But even then, I must consider the needs of the two I already have.  One who is already greatly impacted by autism and one that will possibly bear the burden of responsibility for him one day.  To take a chance that a third child would not be an additional responsibility for her – simply because I want one – is, I think, unfair to Bronwyn.  She deserves to live her own life, have her own children — and not care for mine.  No,I don’t consider Callum a burden.  And, no, his future is not yet written.  He’s beloved, and I wouldn’t trade him.  But one person’s adult special needs child is eventually another’s burden.  That’s reality.  For me, I have decided to stop with two. 

But that child I’ll never have?  She had a name. Already.  I knew she would be a girl, and her name was Kerith Grace.  I am sad I won’t have her.  Another baby asleep on my chest in the wee hours of the night.  Another first smile.  Two more soft chubby arms wrapped around me.  Another set of pattering feet on Christmas morning.  More laughter.  More love. 

Motherhood has been the greatest blessing of my life.

This isn’t a tragedy, I know.  It’s merely one of those things in life I will yearn for and not have.  But, unlike going on safari or digging up artifacts in an ancient city, this is a dream whose scent I know.  And remember.  I can still hear the little coos of my nursing babies and feel their tiny little hands against my skin.  This yearning is tangible and primal in a way that other unrealized dreams will never be. 

So, yes, I will miss this nonexistent child.  As I’m sure do countless other mothers and fathers whose choice to not have more children is a a sad one. 

But here is what I do have.  And it is already so much more than so many others have.  I have had the joy of growing two new lives within me.  Nurturing and loving them.  Every single day of my life, I get to hear my little girl yell “Mommy!” excitedly at the end of the day and have the exquisite pleasure of snuggling with my little ones each morning and night.  That’s no consolation prize.  It’s a blessing.  Two, in fact.

But having had to make this choice, I am now aware of why nosy questions about future children shouldn’t be asked.  Of anyone.  There are many reasons – not all visible -why someone might be unable or unwilling to bring a child into the world.  Some painful, all private. 

No, this question is best left unasked.  If happy news is on the horizon, you can be assured you’ll be invited to the shower anyway.

Dear Well-Meaning Individual: So You Know An Autistic Child, Huh?

They’re just like snowflakes; no two are alike.

Disclaimer:  I am not a scientist.  These are my own views, based upon my own research and perceptions.  The analogy I discuss below is one I shared with a dear friend of mine – who happens to be a doctor – and she thought it was a good one.  This is merely my way of attempting to convey the complexity of autism to lay persons.  If you want science, there are far more qualified persons than me to consult.  The Thinking Person’s Guide to Autism is a great place to start.  Those ladies are way smarter than me and speak the language of science.  And The Autism Science Foundation won’t lead you astray. 

 The other night, an individual (I’ll allow to remain nameless) called to tell me all about how she met a woman with a grown autistic son who was doing so well that he is able to drive to the grocery store.  She thought that perhaps I might want to meet said woman and see if the woman might have any “tips” or advice to offer me.  It was obvious to me that she thinks my son hasn’t made sufficient progress (him being three, not toilet trained, and using just a few words) and that I could use some help.  I ask for help frequently from parents of other autistic kids, but I resented the implication from this person that this other mother was the “success story” I could emulate – if only I were willing. 

Being of the sort who tries to articulate my thoughts, I attempted to explain why I wasn’t interested in all of her recent -and frequent -suggestions.  I tried to convey to her how many suggestions, cures, and treatments people have pitched to me.  I tried to explain why we decided to end biomedical treatment.  (It wasn’t working, and my views of my son’s autism and autism in general have changed.)  I tried to tell her that I have reached a point where – though I do believe in the benefits and necessity of speech, OT, and PT and do research other promising and tested new therapies – I have accepted that Callum is mostly going to be who he is already wired to be.  And that he is simply too young to assess how his individual brain wiring is going to affect his future.  It’s trite, but – in the end – time will tell.

All I got on the other end of the line was…silence.  The unmistakable indictment in silence.  I grew frustrated and began babbling about how I wasn’t really getting across what I meant.  Eventually, both of us tired of the awkward conversation and hung up.  I walked away unsettled.  Defensive.  Wanting to cry.  Knowing exactly what she was thinking.  She’s given up on her child.  She’s not going to try to keep helping him.  She’s a terrible mother, and he’ll never talk or have a normal life because of her. 

I’ve seen it in her eyes the few times I’ve seen her since then.  And, despite still believing what I said, I am haunted by her disapproval and my own self-doubt. 

There is a saying in the autism world – “If you’ve met a child with autism, you’ve met one child with autism.”  On the surface, it’s meaning is obvious.  Of course every child is different, right?  Most people would nod their heads emphatically at that statement — autism or no. 

But that statement means so much more than that. 

What everyday people who don’t deal with autism in their everyday lives think about autism, they think about it much like diseases of the body.  Diabetes.  Coronary Artery Disease.  Lupus.  Conditions that can be tested for definitively and carry a consistent course of treatment.  There are causes that can be identified, and symptoms that can be controlled via medications. 

But what everyday people do not understand about autism is that those who have it aren’t at all like those who have specific physical diseases.  There isn’t a typical progression of symptoms leading to the worst case scenario.  Finding the cause of autism is comparable to finding the cause of cancer.  Likewise, finding a “treatment” for it is equally daunting.  Why?  Because there is no such thing as plain old cancer.  Cancer is a vast array of diseases with a vast array of prognoses.  Just because you’ve been diagnosed with cancer – it does not mean that your chances of survival are the same as your neighbor’s.  Thyroid cancer is a heck of a lot better news than pancreatic cancer.  Ovarian much more devastating than minor skin cancer.  And those cancers still are comprised of different types.  Yet, we call them all cancer, right? 

Autism is just like that.  But it, like cancer, cannot be nailed down in terms of cause or even treatment.  A breast cancer victim will not be cured by removal of her prostate, now will she?  And the cellular events leading to her cancer are likely very different from the causes of the prostate cancer patient’s. 

What I’m trying to say is autism is not really one disorder.  That’s why its called autism spectrum disorder.  It is a description of a variety of similar traits — of highly divergent degrees of severity.  Some children with autism aren’t impacted with speech difficulties.  And some children will never speak.  Some will excel academically and earn graduate degrees.  Some will never learn to read.  Some autistic adults grow up to marry and have children.  Some cannot tolerate the touch of another human being.  They are not the same people, and they do not have the same disorder.  It just carries the same umbrella term.  What created the differences in the brain wiring of one individual on the spectrum did not necessarily create the differences in another.  The reason there isn’t a definitive “cause” of autism is because it likely doesn’t exist.  There are genetic links.  There are suggestions of environmental factors.  Prematurity increases risk.  Some forms may be merely a natural variation in the human spectrum.  The causes appear to be many.  Therefore, the effects are many as well.  Which means that what will help one autistic person isn’t necessarily going to help another.  And some on the spectrum don’t need our “help” at all.

It is not the fault of their parents for what they did or did not do in terms of doctors chosen or treatments attempted.  One child’s autism is not another’s.  No more than one person’s cancer is another’s.  So calling up the parents of an autistic child and telling them all about what “fixed” another person’s child or comparing autistic children to one another is an exercise in futility – and cruelty.  Would you call a lung cancer patient and berate her that she isn’t doing as well as your neighbor who had that spot of skin cancer removed from her nose?  I think not.  But people do it all the time to us.

Our children are individuals with individual differences.  And assuming that a severely autistic child will do just as well as a mildly autistic/Asperger’s child using the same interventions is a cruel misconception.  Why?  Because it automatically points a finger toward his parents, his school, his therapists.  And it suggests that the child may not have fulfilled his own potential.   This is not to say that parents should just give up and allow nature to take its course.  Yes, there are interventions that can greatly help children across the autism spectrum.  But I believe that we must consider the starting point of each child before setting our goals.  If goals are reached, then you set another one.  Sometimes amazing things happen that way and children seemingly without hope reach unpredicted milestones.  But the harsh reality is that some autistic children’s wiring is so severely impacted that they will never function independently.  And it isn’t pessimistic; it’s realistic. It is accepting the child for who he is while working to help him be the best him he can be. 

So, friends and family, acquaintances and strangers, I respectfully ask that you back off.  You might not know what you’re talking about.  You mean well, we know.  But we already have our hands full trying to maximize the potential for happiness – in whatever form it comes – in our children.  We don’t need amateur neurologists theorizing what we could be doing differently.  It’s insulting.  It’s frustrating.  It hurts.  If you want to help, how about calling and saying, “I know you’ve got your hands full.  Do you have a project around the house you think I could help with for an hour or two?  Do you need an hour or two to yourself?  Do you need me to run an errand?  Or take Susie to dance class, etc.?” 

That’s the kind help we really need.

She Took the Words Right Out of My Mouth

Several years ago, when teaching research to students, I insisted upon them using index cards.  It’s an old-fashioned method now, but one that stands the test of time.  It forces a child to place just one fact or idea at a time on a card, and then to cite the source.  Later, they assemble all of their cards in a logical order, and use them as a guide to write their first draft.  It teaches them how to paraphrase and think/write original paragraphs.  Otherwise, it is entirely too easy for them to plagiarize. 

When I taught this to my students, I always talked about the dangers of plagiarism — how it could get them kicked out of college, fired from a job, or sued.  But I didn’t talk much about the morality of it.  I didn’t explain to them how violated a person could feel by the theft of his own words.  I didn’t convey that to plagiarize something is to wrong the person who wrote it.  I confess that my own thinking was centered upon the negative effects on those who commit plagiarism rather than the victim. 

Now I know differently.  Earlier this week, it was brought to my attention that a woman was copying and pasting my work here to her own Facebook page.  She has over 1000 followers.  Not only did she copy and paste my pieces in their entirety without asking permission, she didn’t give me credit.  And — she substituted my child’s name with that of her own child. 

Because she has so many followers, I got to read all of their comments praising her as a writer and encouraging her to turn my work into a book.  Not once did she correct any of the dozens of comments under each post she stole from me.  Instead, she basked in their praise.

Naturally, I decided to research her a bit further.  I found that she is on the board of an autism non-profit.  I found articles about her efforts on behalf of autism families in her community, and the charity’s website.  I also located her workplace’s website and saw a smiling picture and a glowing write-up of her character.  She also is an autism mother, a wife, and holds a full-time job outside of her home. 

Conveying my feelings about her and her actions is difficult.  On one hand, I am furious.  Those posts are me.  My life.  My scars.  My child.  I earned those words. And though I may have some mixed up feelings about how what I’ve always dreamed of doing — writing — came as the result of my child’s autism, I take pleasure in writing.  It is my outlet, my voice,  and my opportunity to connect with others who share my feelings.  It’s me.  She stole me. 

At the same time, I pity her.  As a special needs parent, she most certainly shares those feelings as well.  Clearly, she has not yet found a way to express them.  And, sadly, it is obvious that she desperately needs the attention and admiration of her friends and family.  Enough to risk getting caught plagiarizing.  I can’t imagine how humiliating that would be for her.  Her husband and family.  The non-profit she is affiliated with.  It’s a small city.  Hailing from one myself, I know what she would be facing.  Knowing that, I can’t imagine why she took the chance.   My blog has a pretty good readership (thanks to all of you) and my Facebook page three times that.  The odds of her being caught at some point by someone she knows (and she has Facebook friends from her autism non-profit on her page) were pretty high.  And, eventually she was caught.  Not only did she plagiarize me, she stole someone’s else’s article right off of a well-known website.  (That author has forwarded it to that company’s legal team.)

In my thinking, this woman clearly has problems.  And, as angry as I am, I don’t wish to see her life destroyed.  She did what I asked — to take them down.  (Although her response was a terse “done” rather than an apology.) So, I’m not going to sue.  I’m not going to out her.  I’m not going to message all of the friends who praised her “writing talent”.  I’m going to forgive her and give her a chance to learn a lesson — and perhaps practice a little introspection. 

If she is reading this right now, I have something to say.  You really lucked out in the victim department when you chose me.  Other folks might have taken a different course.  So, don’t do it again.  I bet you have your own words somewhere inside your heart and mind.  Every person does.  Start your own blog –not to get praise and recognition, but so that you have a place to sort out your emotions and interact with others in your shoes.  And then leave those thoughts and emotions there, so that you can carry out your day.  By doing so, you’ll also sleep more easily at night. 

“It would be curious to discover who it is to whom one writes in a diary. Possibly to some mysterious personification of one’s own identity.”
-Beatrice Webb  [←Note use of proper credit.]  

 “I recover my property wherever I find it.”  -Jean Baptiste Poquelin Moliere

Dear Friend Who Just Did The (R-word) Impression

Dear Friend,

I’ve known you a long time.  And I love you.  I really do.  A thoughtless comment on your part isn’t going to change that.   Because I know you are a good person.  I know you wouldn’t be deliberately hurtful to another.  You have been there for me through my life –my wedding, births, deaths, professional successes, the idiotic decisions I’ve made, and even those moments not fit for public discourse.  You’re a great person.  You make me laugh, and you are one of those friends who shows up.  You know what I mean — the people who don’t just ask what they can do, but just arrive when they’re supposed to.  That’s you, my friend.

But, oh, how I wish you  hadn’t just said what you said and did what you did.

Just a little while ago, we were having a great time.  We got a babysitter, cleaned up whatever substances the children smeared on us, and took off to remind ourselves that we are still capable of socializing with grownups.  At some point, somebody shared an amusing story or point.  And that’s when you did it.  You made a comment about “not being a retard” and then made a gesture I doubt you seriously considered.  You raised your hands and screwed up your face in a parody of a person with a neurological disorder/genetic condition/brain damage and altered your voice — doing the classic “retard” impression.  (The r-word – which we’ll call it from this point on.)

And here’s the thing.  I’ve seen you say and do that before.  Several times.   Times when I didn’t think too hard about it.  No, you would never tease an actual person with an intellectual disability like that.  But you’ve amused yourself and others many times in small group get-togethers – usually just making a quick joke about something being dumb.  But that was long before I gave birth to a sweet, beautiful, seemingly perfect baby boy who, at 3 1/2 years old still isn’t talking, won’t play with others, and takes no joy in toys of any kind.  That shook me to my core and altered everything I thought I knew about myself, humanity, unconditional love, and the evolution of personal strength.

So, coming from the perspective of a mother who is very likely someday going to hear someone tease her child cruelly, there is nothing – nothing – funny about that at all.

And here’s why.  It’s not because we’ve lost our sense of humor or the ability to laugh at ourselves or life.  It’s because we now personally know exactly how the mother of an intellectually disabled child would feel upon seeing you do that.  It’s because some of us personally know how painful that is to the heart of that same child.  Yes, they do know when they are being talked about.  They do know when they are being excluded.  So would a pet dog.  Yet they are not dogs, they are human beings.  And they deserve that respect.  They have worth.  Their lives have value.  They can be happy, be productive, and give joy to others.  And that’s just something you are not going to fully understand until the issue affects your life in a profound way.

So, friend, I’m going to ask you to do something for me.  I’m going to ask you to try to step outside of your own perspective and natural defensiveness and just trust me on this — this is another one of those Golden Rule kind of things.  When speaking of human beings, always go with respect for the dignity of the human soul.   That path will never steer you wrong.

Disorder in the Court: Why I Don’t Champion Causes

Note: This blog post is not intended to question the veracity of any specific stories of injustice toward specific autistic individuals.  Nor am I disparaging any bloggers for the causes they choose to champion.  This is simply an issue in general that I have been concerned about for some time.

A man goes to his spiritual advisor to confess his sin of spreading false rumors.  He feels terrible about it and wants to know what he can do to stop feeling so guilty.  He is told to gather a huge bag of feathers and to place one feather on the doorstop of each person with whom he shared the false rumor and to return a week later for further guidance.  The relieved man races out to do so and returns in a week.  He happily reports that he did as asked and inquires what more he must do to make amends.  He is then told to go back to each house and pick up the feather.  Alarmed, he protests that it will impossible to get them all back.  The spiritual advisor sadly agrees.  

From time to time, I get requests from well-meaning souls to share provocative stories with my readers, either here, on Facebook, or Twitter.  I received two yesterday.  I was asked to share a story about a person with autism who had been unfairly treated –along with a petition to demand “justice” for that individual.  The story, as presented, did indeed sound awful.  The parents were reported to be outraged and desperate.  And there are lots of demands being made for a specific course of action toward those allegedly responsible.

But I’m not going to share the story.

It’s not because I don’t care.  It’s not because I can’t imagine myself in their shoes.  Of course, I think that the needs of the defenseless must be the first consideration when accusations are made.  And it isn’t that I think the stories are false necessarily.  But I think that we, in our community, tend to react with outrage before we sort out the facts.  The problem is that, every now and then, it might just destroy the life of a truly innocent person.

I doubt I’m the first person to declare such, but it needs be said.

There are lots of crazy, unreasonable, and simply mistaken people out there.

Statistically, some of them are going to have special needs children.  And an even smaller percentage of those are going to have a some sort of platform.  That platform, in all likelihood, will also host perfectly sane, logical, and correct people who also have special needs children.  All we have to do is determine which of these complete strangers is telling the truth.

Pause here for a moment of silent reflection.

The problem is we have no easy test for sanity, reason, and accuracy.  There is no database in which to check he said/she said.  We cannot know them all personally.  I happen to think myself a very good judge of character.  I think I’m open-minded, and I attempt to remain civilized.  But I am not so confident in my people skills or psychic ability to champion the cause of a viral internet story without having been present in the room in which it supposedly happened.  I won’t risk ruining the lives of the innocent people who are sometimes going to be wrongfully accused.  That’s not my job.  Detectives, investigative reporters – have at it.  Like the rest of you, I’m interested in the story alright.  But verifying isn’t my area of expertise. So, I’m not going to run in and tweet, share, or blog about it until someone with complete access to all of the pertinent information reports their findings and not just what one side shares with the media and internet.

I have taken an informal poll.  It’s informal because it is laughably imprecise.  Statisticians, avert your eyes.  I divided up everyone I know (or attempted to) and separated them into categories: Reasonable vs. Unreasonable.  I came up with 5% of the people I know being unreasonable, based upon my own unstated criteria and subjective appraisal.  Admitting the fragility of my statistical reasoning, I still confidently maintain you could try the same and come up with a similar number.  (Note: If the number you come up with is 95% or higher, you are the unreasonable one and should seek counseling and perhaps medication.)  Go ahead, try it.   I’ll wait here.

I am a teacher.  And I’m going to say something that is going to be unpopular with 5% of the special needs parenting population.  There are some really crazy parents out there who have special needs kids.  Some of them expect teachers to have no life whatsoever.  Some of them have mental problems.  Some of them are just plain mean.  Some of their children actually lie.  And, every now and then, one of them decides to get your goose.  There isn’t a veteran teacher alive who hasn’t had one come after them.  But usually, those issues involve grades, complaints about teaching style, etc.  The world doesn’t pay any attention, and the matter is resolved to varying degrees of satisfaction.  But special needs individuals?  What else can bring about such strong feelings of rage and empathy in public opinion?  Yep — God help the special education teacher falsely accused of abuse or the doctor accused of malpractice.  Ditto for therapists, social workers, hospitals, police, medical personnel, bus drivers, and anyone charged with the care of this population.

In my 15 years of teaching, I have both seen and experienced false accusations by parents.  Sometimes, it isn’t an outright lie but a simple omission of fact that skews how outsiders view the situation.  I have also listened to friends in the medical profession express frustration with similar incidents.  And, here’s the thing.  All of those people I mentioned who work with children?  They can’t defend themselves to you.  By law, they are not allowed to speak to the media, clarify the facts, or share additional information.  They can’t tell you about the accuser’s history.  They are required to stand still while the crowd throws things at them.

It is one thing to demand an investigation.  I’m all for that.  But that’s not what we usually do.  We tend to insist upon a judgment that concurs with our own and demand action –a firing, a medical treatment/procedure be completed, or prison time.  This court of public opinion known as the internet –most especially for those of us in special interest groups – is a dangerous one in which to be a defendant.  Since, I’m no prosecutor, I won’t be pressing any charges.  Yes, I believe that we need to champion the cause of helping our own children and future persons with autism to have greater access to their world.  Yes, sometimes we need to be outraged.

But I also think that we need to be more discerning in our social media and analysis of the “news”.  Just because someone created a Facebook fan page doesn’t make the story true.  We need to remember that all are not who/what they appear to be.  And just because we can’t stand the thought of such a thing actually happening to our own precious children, it doesn’t mean that it really did happen to someone else’s.

No, I think these words are wise indeed: “Trust, but verify.”

And if verification isn’t possible, don’t state them as fact, but direct the matter to those who can.

It’s a Golden Rule kind of thing.

My Autism Live Interview

Click to view THIS, not below. :)

Shannon Penrod of the internet TV show Autism Live in California contacted me last night to invite me to be on the show to discuss my blog letter to Joe Scarborough.  My segment is at the 1 hr, 15 minute mark.  Special thanks to Shannon for an easy and pleasant live interview experience.  Please click on the image to see the clip.  :)

Dear Joe Scarborough – On Autism and Violence

Video Link

Dear Joe Scarborough,

Today, you made some comments that infuriated the autism advocacy world.

You stated:

“As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale…I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected.”

There are a lot of angry folks out there who sincerely believe you are ignorant, fear mongering, reckless, and using your own child’s diagnosis as a prop for your ratings.

And you know what?  I’m not one of them.  And that’s not because I am a fan.  I don’t watch a lot of TV these days and haven’t watched your show enough to have an opinion of you one way or the other.

So no, I don’t think you are evil.  I think that, like every parent of every child, you probably love yours just as much as I love mine.  And I’m not so jaded in my political views that I assume you and other talking heads don’t care about real people and the effects of your commentary.  I may be naive, but, like Anne Frank, I think most people are essentially good at heart.  I’m going to have faith that applies to you as well.

But I do think that you fell victim to one of the easiest pitfalls of personal experience — that of envisioning yourself as an expert.  Probably all of us in the autism parenting/advocacy world do that to some degree when encountering the subject open for discussion.  Herein lies the problem.  Unlike most of us, you have the ear of the world.  And a world that may simply be distractedly listening in while cutting up a salad and listening for the rinse cycle.  They likely will not follow what I believe is your hypothesis — that of communication disorders being linked to social ostracization and social rejection often being a cause of young mass murderers.  I’m hoping that this what you meant — that any noticeable difference can lead to social rejection/bullying and that the sometimes subsequent depression can be a breeding ground for hatred and retaliatory violence.

But, Mr. Scarborough, that’s not what you said.  What you said was so general as to imply that autism is directly related to mass murder.  And this scares me.  Because much of the public will perceive this to mean that autistics are inherently dangerous to the general population.  When, in reality, it is the opposite.  Statistically, persons with developmental disabilities and mental illness are more likely to be harmed by the rest of us.  They are more likely than you or me to be harassed, bullied, abused, and defrauded.  And, if the public suddenly begins to fear them, we can be assured more of the same.  For it is always fear that begets violence.  Whether it was your intention or not, you have now contributed to that fear.  For the sake of my autistic child, yours, and everyone else’s, I am now more afraid than before you spoke.

Mr. Scarborough, if you unintentionally misspoke, please correct it.  Clarify your position, and take some time to do some damage control — not on your own behalf, but on behalf of your son and the autistic community you have mischaracterized.  And, if you spoke intentionally, then I challenge you to do some research on links between violence and autism and report back.  I think you might find yourself surprised.

You, sir, have an opportunity to do what most of us as parents of spectrum children cannot — brighten the path of our special children by educating and preparing the world to understand them.

That is a blessing that most mothers and fathers of autistic children would not cast aside lightly.  Neither should you.

Sincerely,

Flappiness Is

Reflections Upon D-Day (Diagnosis Day)

A year ago, we took Callum to see a developmental pediatrician.  And, because some of his symptoms were somewhat atypical, the doctor said he was hoping he might just be delayed.  He felt there was a chance that it might not prove to be classical autism and asked us to return when our son turned three.  We continued speech, occupational, and physical therapy and waited it out.

During this time, I read.  And researched.  And analyzed.  And over overanalyzed.  I blogged.  And socially networked.  And I had built up in my mind the moment when we would finally receive a diagnosis.  I had envisioned a private room, numerous assessment papers, and difficult discussions of cognitive ability and prognosis.  I expected to have it really hit me on some deeper level that I couldn’t anticipate and to maybe break down.  I thought it would be the really big deal it has been for so many of my special needs parent friends.

So, yesterday, we drove an hour to the University of Florida, my mind drifting over different possible scenarios.  I thought we would have a long wait in the lobby.  But they called us back immediately.  I expected a dreary wait in the examining room.  But the doctor walked right in.  I was ready for him to pull out all of the various assessments from the private therapists, Early Steps, etc.  And I figured he would order up a full day of assessments at Shands.

Instead, he walked in, took one look at Callum stimming over a dangling cord, and said, “So, it doesn’t look like there has been a major change.  I was hoping it might go the other way.  But we are definitely looking at autistic disorder.”  He asked a bunch of questions about his behaviors and speech.  And he spent a little time interacting with Callum – asking him to draw, give him a high five, and to return his pen (of which he did all three).  He then told us to continue all of his therapies and handed us a brochure for a University of Florida training program for parents – Child Directed Interaction.  He suggested we contact the Gainesville CARD.  And he handed us a lab order for chromosomal testing.  And that was it.

Realizing he was intending to leave, I asked the question, “So is this paper a formal diagnosis?”  The doctor looked at me and said, “Well, he was diagnosed a year ago, but I was hoping he would go in the other direction.”

So, not only was our diagnosis uneventful – it, apparently, happened a year ago and no one told me.  No, really.

I suppose some might accuse me of not being terribly observant, but I submit that if someone had told me my son was formally diagnosed with autism a year ago – that I would have noticed.  My best guess is that it happened following our visit and after the doctor or whomever graded the parent questionnaire he had me fill out before leaving last year.  I realize it wouldn’t have made any difference in our day-to-day lives.  I’ve known since early on it was autism.  He has received therapies since the age of 19 months.  He has received the benefits of Early Steps and qualified for ESE Pre-K placement.   With the exception of possibly (but not terribly likely) receiving social security disability benefits and a tax break, nothing would be any different for him having that official label.

So, instead of experiencing a fresh wave of grief and anxiety or a surge of relief and renewed purpose, I was left feeling strangely blank and mildly disconcerted.   Like when you follow two characters throughout an entire romantic drama – only to be left with questions of whether or not they will really end up together.  It was anti-climactic, to be sure.

Except for the part where we left the doctor’s office to head over to Shands for chromosomal testing.  And after handing over our insurance information, we were denied.  The wonderful woman in the outpatient lab trying to get it authorized went above and beyond the call of duty.  She explained that this type of testing cannot be conducted in the lab they demanded we go to.  They demanded his primary care pediatrician see him instead.  She (and we) patiently explained the need for a specialist. They then demanded that the specialist call in the authorization.  The specialist demanded the pediatrician call it in.  The pediatrician’s office swore to call it in.  And then went to lunch.  We went to lunch.  We returned.  The pediatrician’s office then said it would be three days.  Then therapy called in the middle of all that and shared that Healthease had denied his therapies for the third week in a row and they would resubmit.

So, I discovered Children’s Medical Services across the hall.  Children’s Medical Services is a group of insurance programs for kids with special needs.  They were pressed for time, so the nice lady gave me a card with a phone number to call.  I started to get a little teary. So, the nice lady insisted someone who could help me come out front anyway.  And that lady turned out to be super kind and helped me to begin paperwork to switch him out of the awful state health insurance program he is in and into theirs.  And then she suggested that I go down the hall and meet with a social worker to find out about anything else I might need to know about.  And that guy was also awesome and directed us to some other resources.

(And all of these people making up the staff of the University of Florida at Shands Outpatient Lab, Children’s Medical Services branch, and Social Services branch restored my admittedly shaky faith in humanity.  So a big “Thank you” to them.  You folks rock.   And a loud “Shame on you!” to Healthease of Florida.  Like Aunt Em, I can’t say what I think of you.)

So on my personal D-Day, I am reminded of the truth about autism diagnosis.  The label allows you to approach,  but you still have to storm the beaches yourself.   You still have snipers raining fire upon you.  You will see and hurt for the casualties of those just like you, also navigating their way through their battles.  And, if you finally reach safety, you will look back at the devastation these battles have left behind and wonder.  Yet you will know that your child – and every child – are worth any sacrifice.

For in the immortal words of Winston Churchill, ” We shall fight…We shall never surrender.”

But first we need some snuggle time and to crawl in bed.  A good book.  A glass of wine.  And some peanut butter fudge.  Then, after a good night’s sleep, we shall commence fighting in the morning.  We’ve had a long day.

So, what was D-Day like for you?

If you liked this post, you might also enjoy: “So You Think Your Child Might Be Autistic” or “From the Rooftop: Autism Disclosure”.

Or you might enjoy this post about diagnosis from Tales from Tangerine: “A Diagnosis…Sort Of”.

Civility Is Simple — Not Simplistic: A Response

The Golden Rule: Simple, Ancient, and Effective.

From dictionary.com:
ci·vil·i·ty
noun, plural -ties.
1.courtesy; politeness.

2.a polite action or expression: an exchange of civilities.
3.Archaic . civilization; culture; good breeding.
Synonyms
1.  affability, amiability, manners, tact.

A few weeks ago, I wrote a post, “Silencing Ourselves: A Plea for Civility in the ASD Community“.  Shortly thereafter, Ali Dyer, Social Media Coordinator at Autism Speaks, wrote a response to my post, “‘Silencing Ourselves: A Plea for Civility in the ASD Community’ – A Sister’s Response” which was featured on the Autism Speaks Official Blog.  I read a comment on her post (and thereby mine) which has been bothering me.  And, while generally I do not take exception to honest criticism in blog posts, the tone and sentiments expressed in the somewhat critical response concern me.  And, although I do not wish to open the proverbial hornet’s nest, I feel the need to respond in kind.  Not because someone dared to disagree with me.  I’m not perfect.  It happens.  But because this discussion has broader implications for the general nature of discourse in the autism spectrum/special needs parenting community.  And, sadly, I don’t believe that the views expressed in the comment are hers alone.

The criticism focused on three issues: our (presumably both my and Ms. Dyer’s) use of non-people first terminology, an opinion of Ms. Dyer’s writing and the implications of such for her as a social media coordinator, and an opinion that my desire for civility in the autism spectrum community is simplistic and unrealistic.  I will address my concerns in this order.

In her comments, the respondent stated that our usage of non “people first” terminology “simply is not enlightened”.  Because I have shared my views on this subject in a previous post, “Reply to a Disgruntled Reader“, I will refrain from repeating myself ad nauseam.However, I will say this:  the statement, “People are not autistic.  Behaviors are” has become the rallying cry of those endorsing people-first language with regard to autism.  In my opinion, it is one of those things that sounds very nice and correct but, on further examination, isn’t the only lens by which to view the subject.  There are some perfectly nice, caring people out there who see it quite differently.  People who are no more insensitive than those who attempt to advance the “people first” movement.  People who see the use of the word “autistic” as more about embracing the whole self rather than as a dismissive label.  A friend of mine, “E”, in the autism blogosphere recently began writing her own blog,The Third Glance.  ”E” is a PH.D student ­ and an insightful thinker and writer.  She also happens to be autistic.  Here is what she has to say:

I am Autistic. I am a nerd. I am asexual. I think often times, what people’s objection to describing someone as “autistic” stems from, is their own personal, stereotyped version of “autism” (or how they believe the rest of the world views it, even if that is not their own personal view) – the negative horrible thing that it isn’t, but that (unfortunately) immediately comes to many people’s minds when they hear that word. And they don’t want their kid, or themselves, to be seen by that view, so they try to separate their child from the stigma. I TOTALLY understand that – you want people to see your child as the wonderful, kind, awesome person s/he is, and not by the awful assumptions that society makes that don’t accurately portray him/her. But by separating the person from the person’s existence, you are destroying the person inside. It’s not that when your child has a triumph it is in spite of the Autism, and when they have a setback it is because of the Autism, but rather, that when your child has a triumph, it, too, is due to his or her Autistic mind, figuring out and processing the world and understanding and acting in a way that you approve or appreciate. As another FANTASTIC Autistic blogger, AutisticSpeaks (http://autisticspeaks.wordpress.com/) says, “Not despite autism, but because of it”.

But here’s the thing. Everything about me stems from being Autistic. The way I think, feel, and interact with the world. The fact that I’m a PhD student, AND the fact that I stim in my office and am pretty terrible at socializing with my age group (who, by the way, are all undergraduates). There’s nothing about me that is a “person first” and “autistic” second. To be Autistic IS TO BE A UNIQUE HUMAN, whose brain works a little differently from most other humans. I’m also asexual. I am not “a person with asexuality”. Nor is any gay person “a person with gayness”. That trait, asexuality, is as much a part of me as my Autism, and has shaped my thoughts, ideas, and the way I interact with the world as well. The two are undoubtedly linked (along with all of my other traits that make me myself – Autism =/= Asexual and vice versa, it just happens to be the case for me), but I digress…

To ME (and I stress that this is MY opinion, not anyone else’s, though I’m sure there are people who agree, or have similar feelings, I only speak for myself): the phrase “person with Autism” suggests that Autism makes me less than human. I am NOT less than human. I’m not a person who is less than other humans because I’m afflicted by a terrible disease. Sure, being Autistic means it’s harder for me to do some things than it is for you. But it’s also easier for me to do many things, things that I find to be of great value and absolutely love to do – things that make me, ME. Take away my Autism, and you take away the stigma, sure, but you also take away everything in my life that makes me into the person I am. And that is why I, personally, identify as “an Autistic person”, not a “person with Autism”.

Also, I did just want to make it clear that I am *not* looking for a fight here – I’m actually simply responding with how I personally feel. That doesn’t negate anyone else’s opinion who happens to feel differently. Individuals who prefer to identify as “people with Autism” deserve just as much respect of their views. I would never force them to identify as “Autistic people”, and I expect the same to myself. But as an Autistic person who (sometimes) has the means of communication to express my views and opinions, I simply wanted to speak to that particular issue, as it is very relevant to my life.

I think that those who believe that the “people first” view of autism terminology is a closed case might be surprised to find that there are a lot of decent people out there who disagree .  And, while – like “E” – I do not think others will or even should see it the same way, I hope that those of us who see it differently will not continually be accused of being insensitive or unenlightened.  It is simply a matter of perspective.

Regarding her post, the response to Ms. Dyer stated:
     Your post was touching in what you shared about your brother ­ and we all have touching stories of sacrifice to share ­ but you did not really not address the blog post you referred to other than the autistic/autism issue. You kind of side-stepped that and told your own story. Like I said, your story was meaningful, but that was not the promise of your post title. As a social media manager, you know focus is important in blogging and you have to deliver on the promise of a subject line or title.

A blog – by its very definition – is a personal journal.  A blog post contains the thoughts, feelings, and experiences of its writer.  Ms. Dyer, though she works as a social media manager for Autism Speaks, is allowed to have her own thoughts and responses to what she reads.  The biographical information stated that Ms. Dyer was functioning as a guest blogger.  She was not participating in a structured debate or even writing in her official capacity as an employee of Autism Speaks.  To chide her with regard to her professional status seems disingenuous to me.  It appears to me that the true objection is to her agreement of ideas expressed in my post rather than what was perceived by the respondent to be her improperly focused blog post.  I detected annoyance with her personal story (“and we all have touching stories of sacrifice to share”).  My question is…why?  Because she does not share the same opinions as the respondent, does that make her personal experience somehow irrelevant or redundant in the autism blogosphere?  While I sincerely hope not, it has been my experience that it does.  

I do not personally know Ms. Dyer, nor have I interacted with her online in any way other than a compliment to her post, thanking her for linking to mine.  And, while I’m sure that she is a perfectly nice person, my intention is not to jump to specifically her defense. My concern is what I perceive to be an intolerant environment in the ASD community.  Intolerant in that there appears to be only one accepted way of seeing our issues.  Intolerant in that there appears to be a greater concern for correcting others’ perceived verbal missteps than for engaging in a useful sharing of resources and information.  In the past few months, I have seen a ratcheting up of personal political beliefs interspersed with autism advocacy to the point of implying that those who have a different political opinion are somehow less worthy as human beings — and possibly not as deserving of having a voice in our community.  It begs the question:  Should an individual’s liberalism, conservatism, religiosity or lack thereof be cause for dismissal from the autism community?  Because, as I understand it, we have a common cause – the educational, medical, and social well-being of children and adult individuals with autism spectrum disorders and their families.  That’s why we’re all here, right?

I am not suggesting that individuals in the ASD community should not be allowed to express their political views or endorse policies and legislation that benefit the same . I’m a writer, a teacher, and a librarian.  This makes me quite fond of the First Amendment.  What I am not so fond of is people implying that simply holding a differing opinion should negate the respectful treatment of those who disagree. For I happen to believe that both politically liberal and conservative parents, religious and non-religious parents, and biomedical enthusiasts and advocates of standard methods of autism treatment all deserve to be treated respectfully – even during inevitable and sometimes necessary times of disagreement.  It is one thing to attack a viewpoint.  It is quite another to attack an individual holding it. 

Perhaps it is naive of me to think there is enough room in our community for differing perspectives.  If it is, then I prefer naiveté over cynicism.

And my supposed naiveté is truly the main focus of the respondent’s displeasure.  She compared my post to the oft-derided wail of Rodney King’s “Why can’t we all just get along?”  She stated:

…I think it’s too simple to just wonder why it [division in the autism community] exists and hope the band-aid of good will will cover it.  There are very good reasons for the visceral way people respond to differences that bear examining.  First of all, we can’t just all get along because the autism community is VERY diverse.  Our needs are different.  Our belief systems are different.  There is no big umbrella covering us all.”

I am aware that we are a diverse community with diverse needs.  Every community is.  But she mistook what I requested from our community – civility – and confused it with a request for uniformity.  She demonstrated this by referring to my objection to cruelty and incivility as an objection to “division in the autism community”.  At no point in my post did I call for a hive mind mentality for the autism community.  I called for civility.  Simple human courtesy and a respectful approach to those with whom one disagrees.

We spend a lot of time in the autism community discussing bullying and its effects upon our children.  We push for strong anti-bullying measures in our schools.  And we discuss at length the need for tolerance and diversity.  Yet, as a community, I don’t think I am overstepping in saying that we don’t practice what we preach.

I am a blogger.  A few months ago, I deliberately created a blog account and  set up social networking accounts to network and market it.  Clearly, I am fair game for those who wish to attack my views.  I put myself out there, willingly engaged in public debate, and comment frequently on others who choose to do the same.  And while mean comments hurt me as much as anyone else, it is hard to argue that I didn’t know exactly what I was signing up for.

Contrast me with an innocent parent who unwittingly comes across an autism blog or forum, asking for advice or sharing his experience.  That parent mentions ABA therapy or gluten-free cookie recipes or the like and all hell breaks loose.  Suddenly, this parent is accused of being stupid, a cult member, subjecting his beloved child to “what amounts to dog training”, etc.  And all that parent sought to do was find others like him, parents doing the best they can to provide for the children they so desperately love.  And maybe his choices aren’t yours.  But I happen to find little difference between the snarky self-satisfaction of the “cool kids” of ASD parenting, sitting at the “cool table” in the autism forum, tossing out verbal jabs and raising an eyebrow at the hapless newcomer who dares to approach un-vetted.  I don’t know what others call it, but where I come from it’s called bullying.  And I don’t like bullying in any of its forms.

Nor do I understand the purpose of it in our community.  Even for those who hold the most passionate views for or against a particular course of therapy, treatment, or educational approach, I would think that the goal would be to enlighten others to one’s point of view and encourage them to adopt it.  If one instead chooses to insult, demean, or imply a lesser degree of parental dedication, all he will accomplish is the alienation of yet another possible convert to his position.  This seems contradictory to one’s purpose, does it not?  At least one would hope that purpose was a well-intentioned one. If a mother enters an autism forum or blog commentary seeking information on allergy testing for biomedical treatment, wouldn’t one be more likely to sway her to his side by politely sharing a link about the efficacy of such testing than accusing her of stupidity and child torture?  Rudeness is unmistakable – in person and online.  I submit that there are a lot of obnoxious online personas who would never dream of conducting themselves similarly in person.  And I don’t know about everyone else, but – once I identify an individual as rude – I no longer seek her counsel.  In my way of thinking, incivility is not only unenlightened, it is, quite simply, ineffective.

No, uniformity is not what I’m calling for.  I am aware that there are changes that need to be made in education, with regard to insurance, in legislation, and public awareness.  I certainly think that we should all be free and encouraged to opine to our heart’s content.  To bring about needed reform and to push for what won’t happen without our insistence.  But I do not believe that other parents of autistic children are our adversaries.  I don’t believe that attacking one another for our approaches to treatment, therapy, education – and even political beliefs – is acceptable or noble in any way.

For, at the end of the day, yes, we are all under the same umbrella.  We are under the umbrella of unconditional love for our children, worry for their futures, fear for the day that will come when we are no longer around to advocate for and protect them, and the haunting fear that perhaps the choices we have made for them weren’t the best.  And, though – as the respondent pointed out – our individual struggles and journeys may be markedly different, we are all really doing the best we can.  We have much to share with one another.  Many worthwhile stories to be told.  And, in the sharing of our individual experiences and viewpoints, we have much to gain in civility –and little to nothing in antagonism and cruelty.  The Golden Rule has existed since antiquity – in every culture- – in some form for a reason.  It works.  And it always will.

“Civility costs nothing, and buys everything.”
Mary Wortley Montagu

If you liked this post, you might also enjoy “The Third Glance” by “E”.  

*The comments cited here follow Ali Dyer’s post, in the “Comments” section – dated March 6th.