Susan's Blog

Thursday, August 25, 2011

It’s not about your autism approach; it’s about your humanity

For Therese

It’s a funny thing about autism dogma.  Those under the sway of one kind or another are almost evangelical in their beliefs.  They see all autism success (or failure) in terms of how closely one has followed the True Path.  I think that I detest dogmatic thinking more than most dogmas themselves.  I detest dogmatists and yet sometimes secretly am jealous over their certainty.  I rarely feel certainty about anything.  I experience reality and relationships as ephemeral, not static.  I search for solidity but rarely find it.  I’d be a terrible politician, because I flip-flop constantly, both in mood and belief.  As a Libra, (and dedicated flake) I see many sides to a situation or person at once.  And seeing them, I must acknowledge them.

I remember when I was much younger and I pursued the belief that vaccines cause autism.  I went back in time and I remembered the day I had sat Nat on the examining table in Dr. Kerbel’s office while he got his MMR shot.  Nat had looked up at us, his eyes blinking back surprised tears, and he had smiled.  I remember thinking in the years after that, “Was that the moment It happened?”  And saying to Ned, “If indeed the MMR caused Nat’s autism, I want to kill myself.”  For me, the response was never to blame pharmaceuticals, doctors, anyone else but myself.  I was his mother and I let him get that shot.  At times I have felt jealous about the anti-vax certainty and anger, because I never felt any of that.  It would have been a relief to have felt that, I think.  Then I wouldn’t have had to feel that terrible laceration of responsibility.

But time passed and I could not ignore the research, the articles, the discussion with doctors I respect.  And I could never get past my own inability to believe in one answer and stick with it.  I have never even been able to make The Vaccine Controversy be my main autism theme, my Issue, because I can’t even sustain enough passion or interest in it.  And also, there were too many other factors I could not deny, namely, that Nat had always seemed different somehow, even as a newborn.  Wistful, my grandma called him.  Vistful.

Inevitably, my slippery mind flops from the question of etiology and blame, to something else, or just back to Nat, and Nat alone.

So it’s Nat — and my own lack of convictions and theories and favored approaches — that drives me.  Nat drives me, and also, the people in his life who have made a difference.  It is ironic that Nat has attended an ABA school for nearly eleven years, given how my perceptions fluctuate.  What is more ironic is the reason we have stuck with the school:  the diversely talented individuals they hire there.  While Nat’s school prides itself on strict ABA to the point where they believe that their intensive teacher training renders each teacher the same, what I love about the school is that each teacher is gloriously different.  The ABA-ists want to see their success as being about metallic gray consistency, where “a staff” is interchangeable with another, and that progress is about carefully measured antecedents and consequences to a given behavior.  But what I’ve seen over the years is that consistency is overrated.  I know that, because I’m often inconsistent.  And where years ago an ABA teacher commented that Nat would only do as well as the efforts I made to be consistently ABA-ic, I find as an older mother that it is Nat’s flexibility and my spontaneity that have wrought some of the best aspects of our life together.  Yes, of course it would be great if I could more frequently create a schedule and stick to it, follow the same system of rewards the school uses.  Nat might be less anxious if I did that.

But because Nat has known fluctuation in his mother, he has become a person who is sensitive to moods in others.  He knows every inflection of my voice, every shadow that passes over my eyes.

The best teachers Nat has ever had know this about him.  They know when to gently push aside the curtain of their training and simply pat him on the shoulder.  They lift him out of the constricting lines of the data graph and hold him in their hands, just Nat.  He does this because that teacher spoke harshly to him.  He did that because that person disregarded him.  He reacted this way because he did use his words but you still did not honor them.  The best teachers do not adhere to one solid principle of pedagogy; they get to know the student and respond accordingly.

Nat has had more than his share of wonderful teachers, at his current school and previously.  Pretty much all of them have been terrific, except for that handful at the Unnamed Collaborative, when he was 10, the place that traumatized me more than it did him, and turned me into Mrs. Jumbo, Dumbo’s Mad Elephant Mom.

Anyway, this is a long-winded way of saying that probably One of The Best teachers Nat has ever had,  humane, creative, loving, with whom I trusted him on his last trip to Colorado:  Therese.  Is leaving the school.  She is moving on to the public schools.  We will miss her so much.  I could not begin to thank her for the love and spontaneity and creativity she showed Nat.  My feelings of love and gratitude to Therese are one of the unwavering truths in an otherwise changeable life.


Oh geez. Losing the good ones always stings. FWIW, I’m like you, I tend to see most things in shades of gray and waffle a lot. I like to think it makes me less boring. 😉

— added by ASDmomNC on Thursday, August 25, 2011 at 9:44 am

Saying goodbye is hard. When our children are lucky enough to have a great person for a long time it is so hard to let them go. And yet we end up loving them and wanting good things for them.

— added by Dixie Redmond on Thursday, August 25, 2011 at 12:29 pm

Here’s a secret. Or maybe not. Most “ABAists” who spend time with children and adults with autism, and I am one of them, are “real people” and see real children as individuals. I’ve worked in ABA programs for almost 30 years and it is my preferred method of teaching. But teachers are absolutely not interchangeable, anymore than kids are. We all develop our own styles. I believe that consistency works very well, but that we all have to learn to live with and handle the inconsistencies in life, because that is the real world. Establishing relationships and rapport with individual children is so important. It’s not just about graphs and data, speaking for myself, I know that I have put myself into every interaction and little moment with my various students, over the years. In a sense, we become reinforcing to the kids because they are perceptive and understand sincerity and they get it when they know that we are celebrating their lives and accomplishments with them! Sometimes the philosophy (ABA and otherwise) presented by the powers that be is not quite the same as what actually is happening in the classrooms and group homes, it is too clinical and people aren’t clinics. I know that I love so many of the people I’ve worked with over the years.

— added by Michele on Thursday, August 25, 2011 at 6:03 pm

I feel the same. Yesterday I read a very heartfelt, driven, assured article, blaming vaccines for autism. Like a sheep, I read it thinking, with this many parents believing it, there must be some substance. And maybe there is.
I truly believe there are multiple causes, levels of autism. I don’t remember as a child seeing autistic children. Not true, maybe 2. But then again, where the more communicitive children just the “dorks”? Where they the kids that weren’t really social, and so I just never noticed?
I look at the vaccine theory and have to think that I’m not any smarter then the entire AMA. I don’t believe that the government has brainwashed or bought all the pediatrician’s and made them their own. And if you look at greed as being the factor that ped. still vaccinate their patients, why hasn’t one of the greedy bastards come forward to tell their story for millions of dollars? If vaccines really were the anti-child, I really beleive you’d have dedicated docs screaming from the rooftops, and refusing to give kids their vaccines.
Of course, when I meet a parent who’s assured otherwise, I just smile and nod. They are an assured bunch.

— added by Jacquie on Friday, August 26, 2011 at 8:55 am

My kids have both had their teachers, present and past, for multiple years. When it’s been a great fit, which it usually has, I spend a good deal of time praying they won’t move, procreate, or change grade levels. The value of a good teacher who also truly gets my child is incalculable. I’m sorry for the loss, but glad Nat had someone so truly insightful.

— added by kim mccafferty on Friday, August 26, 2011 at 10:13 am

I’m glad Nat had such a wonderful teacher for so many years. I think we stuck with ABA longer than we needed to because of a few loving, warm therapists. Now we have another great teacher in the public school (and it’s free!).
As far as vaccines go, I really think my twins already seemed autistic in the NICU. I thought it was a preemie symptom at the time.

— added by Alice on Monday, August 29, 2011 at 12:30 pm

%d bloggers like this: