Thursday, April 26, 2012

And Sometimes There Are No Dirty Looks

We took a little trip last weekend to visit some friends.  A little weekender to get away, hang out, do nothing special with friends who moved away but with whom we are still close.

Of course, we flew. 

Those of you with special needs kids.... or heck, KIDS of all types.... know how nerve wracking traveling with children can be.  The chaos, the lines, the overstimulation... and that effect is just on me!  YIKES. So we planned ahead.  Family security line: check.  First on plane to settle in and avoid standing in a line: check.  Snacks, activities, toys, movies, iPad: check.  

A very excited little man: check check.

And he was perfect.   By all standards, he was absolutely perfect.  He sat well, following important directions, was engaged and interested in the experience, able to be distracted and coped beautifully with the overwhelming experience of traveling.  So much so that when we landed, the lady sitting in front of us turned around to speak to me.

At first, I mentally cringed a little.  I feared she was going to complain because J-man had been kicking her chair or something.  He wasn't, but you know....  reflexively defensive instinct, I suppose.  But instead she complimented him on what a wonderful job he did on the trip, and how well behaved he was.

Uh, what?

Not that J-man wasn't well behaved.  He was amazing.  

But did I just hear someone praise my child on his behavior?  Really?  Did that just happen?

I think I mumbled a surprised "thank you".

After disembarking, we had a quick potty break where the woman again approached me and repeated her compliment.  I told her that J-man was on the spectrum, so that makes her compliment extra sweet since it is a greater challenge for him than most.  She mentioned she was once a special education teacher and that clearly we are doing something right.   After she left, she apparently found Dan in the hall waiting for us and repeated her compliment to him.


You know, I think that was the first parenting compliment I have ever received.  Or at least, my first compliment from a complete stranger who did not know J-man's backstory.  I think most special-needs parents get the evil eye because our children do have difficulty in public for a variety of reasons:  overstimulation, difficulty understanding social norms, difficulty communicating, anxiety, and so on.  Our kids tend to have difficulty behaving "as expected"...  as a well behaved neurotypical child  (and note: Not all neurotypical children behave well.  Just saying.).  Anyway, we receive more than our fair share of the Hairy Eyeball.

So to have the opposite.  To get a compliment.  And to know that somebody noticed all of his hard work....  well, it warranted a blog post.

Monday, April 16, 2012

ABA: Methods versus Mission

Big Daddy with blue hair for
Autism Awareness and Acceptance Month.
It has nothing to do with the post,
but I just had to share it.
He is the coolest man on the planet.

Selecting a therapy for a kid on the spectrum is a little like deciding on a religion.  Each therapeutic technique has its own set of beliefs, rules, objectives, and techniques... a little like religions.

What do you believe about autism? Is autism something to be "cured", to be "tolerated", to be "accommodated", or is it to be "celebrated"?

How do you think autism works?  Is it a brain disorder, a neurological difference, a whole body disease?

What is the purpose of therapy...  to change behavior?... to alter brain functioning?... to provide and adapt information processing methods to better fit the neurological picture?

What is the outcome desired for therapy:  being 'normal'?.... highest level of functioning?.... optimization of potential?

What you believe about autism can fundamentally effect what type of therapy you choose for your child.

This is why I believe that research into the causes of autism is so important:  once we have a better sense about the why, shaping the beliefs about autism's meaning becomes a little easier to accomplish.  And then, decisions about therapy can be guided by those beliefs.  But this is for another discussion, perhaps.

Today I wanted to discuss the difference between therapeutic methods and the mission of the therapy.


Okay, bear with me, because I am probably going to fumble along with this post.

Anyone who has been following J-man's story knows the following:

     * He has autism and apraxia of speech
     * He has been in some kind of therapy since he was 16 months old (ST, OT, ABA, EI)
     * We had some serious issues with putting him in ABA and have had both tremendous successes and frustrations since he has been in the program.
     * I personally like more relational styles like Floortime or Communicating Partners.
     * I believe that autism is a neurological difference in which the communication between the different areas of the brain is altered, and it makes things like language and social communication difficult.  I also believe that the capacity of the autistic brain to develop is tremendous but requires different methods and techniques than a neurotypical brain.
    * We believe J-man is awesome and his potential is unlimited.

There are other things that I believe it is important to mention:
     *  I believe all children deserve to learn how to be in this world, and ability or disability should not exempt them from this.  Even the hard stuff.
     *  I believe every child learns differently and is motivated to learn for different reasons.
     *  Behaviors exist for different reasons, and the decision to increase, decrease, or change a behavior needs to be weighted with the reason the behavior exists and the reasons to change the behavior.
     *  Communication and connectedness are more important than words.
     *  We convey messages to our children via our actions moreso than our words.

Recently I have been observing a lot of debates about the benefits and drawbacks to different therapeutic techniques.  I'll be honest, most of these debates have been on (in-your)Facebook... *sigh*... but a few have been in Real Life, in relation to the legislative work I have been doing this year.  I have found some of these debates particularly interesting, and I have noticed that often the arguments fail to differentiate the methods versus the mission.

So I thought I would take a stab at it.
And I am going to pick on ABA.  Why?  Cause it is just soooo easy....

ABA, or Applied Behavioral Analysis, is one therapeutic technique that tends to generate a lot of heated discussion.  ABA takes a task or behavior, breaks it into its smallest parts and builds upon each part is a systematic way in order to eventually get to the full behavioral step.  It focuses solely on observable behavior and each step is tracked through through data collection.  It is not concerned with internal processes, merely on what can be externally seen and tracked.  Largely that is because it comes from the behaviorist tradition in which the focus is merely on observable behavior and its relationship to the environment.  The internal world of thought, cognition, and feelings was of little importance to the behaviorists, and while that extreme position may not be adhered to as strictly today, it has definitely informed the ABA tradition.

As a result of its focus on specific observable (and trackable) behaviors and its strict adherence to external environmental factors in shaping behavior (reinforcers, punishers, etc), ABA has a wealth of data that shows it is highly effective at changing behavior.  Period.  As a method, it works.  If you want a behavior changed, you can get behavior change with ABA. If you want to teach a task, or shape attention, or increase or decrease a certain behavior, ABA works.  It works with autistic people.  It works with neurotypical people.  It works with children, adults, the old and the young.  The principles and methods are effective... to me, there is no question about this.

And a child who has difficulty with information processing... who may have difficulty allocating attention and learning things that require the coordination of multiple brain centers at any one time... ABA can help by both providing motivation, positive reinforcement, errorless teaching through careful analysis of the task and situationally setting the task up for success while concurrently increasing the difficulty up to the next level.

So as a method, ABA is pretty awesome at what it does.

But in my (humble) opinion, ABA cannot make you "not autistic". You might be able to get a child to act less autistic, but I promise you... they are still autistic.  They still have their brain, and it is a pretty sweet brain as it is.  The pathways might become more defined because through repetition and effort the child has learned those skills, but they still process the world the way they do.  They may be able to respond to new information faster because they has developed those other pathways and therefore do not have to try and process everything at the same time...  memory and skill sets take over..  but they still are autistic.

And this is where the mission of the therapy starts to become really important.

What are you trying to accomplish?  What are the goals?  And why?  What message are you sending to the child?  Are you changing their behavior because it does not fit into social expectations, and if so, why?  Is it dangerous?  Distracting?  How important is it to be like everyone else?  Is it?  What are your desired outcomes?

These are murky questions, people.  As I said before, ALL children (autistic, neurotypical, whatever) need to learn about the world, and we (as elders) need to teach them. I think ALL children should be given the opportunity to learn... within their ability.... to communicate, to behave within some basic social rules, to develop academically, emotionally, and socially within their highest potential.  Of course, who determines what those things are is what gets murky, but overall I do not think that it is wrong to expect all people to strive for these things.

However, I think we have to be very careful when therapies start to promise to change the child OUT of their autism.  The implication is that the autism is wrong, and therefore the child is wrong.  And THAT is wrong.  Autism isn't wrong.... autism just IS.  And I might... as a parent... need to adapt my teaching and interaction style based on that difference.... and ABA might be a helpful tool to do that.... but to assume that the goal is to so fundamentally change the child so that they are "not autistic" is both foolish and insulting.

Recently a friend of mine and I were talking about ABA and her hopes for her child.  She wanted her kids "indistinguishable from their peers".  I guess I understand that to mean she doesn't see a world where their autism can be any benefit to them, and therefore getting rid of it should be the goal.  I told her I don't see that for J-man.  To me, ABA serves a purpose in that it helps teach him to be able to do things that he couldn't learn through just natural observation.  It breaks things down and provides reinforcement for the tough work of learning.  But my mission isn't to make him "not autistic"...  my mission is to make him the best J-man he can be, and the world is not built to teach him in a way that is accessible to his learning style.  ABA methods help.  But I am on constant guard for the curest messages that might get to him.... and it is very hard to communicate that with the therapists who tend to look at atypical behavior as deficits.  Which might be why I have always tended to like the relational approaches more... the mission is more about creating relationships with the child where they ARE instead a more adult or "normal" way of being.

So we do ABA because as a tool it is working to help J-man learn.  But we stand on constant guard for WHAT they are trying to teach him, and I do foresee a time when ABA as a central therapy for him will be used up, because while the methods might still be effective, our focus for what is important to learn will change.  

My advice to those who are out there and trying to figure out what to do:  read as much as you can about different techniques.  Go with therapies that have empirical evidence (and I mean serious journal publications, not just some study they did and got published in the journal of crap research).  Carefully vett the therapists:  what are their goals, how do they view disability, what are their beliefs about learning and behavior, and why?  Examine your own ideas, and ask yourself:  does this honor my child?  Does this help him be the best HE can be, or am I trying to fit him into some kind of "ideal" that I want?  Am I meeting him where he is or am I trying to force him into being something he is not... and frankly, doesn't need to be?

Saturday, April 7, 2012

Highlight It Up Blue 2012

Just wanted to share the amazing people from our day.

Wednesday, April 4, 2012

Autism, Acceptance, and April

April is Autism Awareness and Acceptance Month

For some people it is a month devoted to building awareness.  For some it is about teaching acceptance.  For others it is about rallying for a 'cure'.  For others it is about building support.  And for others it is about celebrating autism's challenges and triumphs.  It is a mixed bag of responses in a divided community, with  some horribly harmful messages (like using the word "hate")  and beautifully inspiring messages.  It is exhausting and inspiring and frustrating and motivating.

On April 1st, I helped spearhead a fundraiser for a local autism organization that provides supports, information, and activities for the local community.  It is an organization affiliated with the program J-man goes with, and they are small potatoes:  simple events, seminars, and the like.  For example, they are holding an upcoming fundraiser to help a family in the program whose autistic child has cancer.  That is what they do.  They don't promise a "cure"and aren't looking to change the world.  They help small groups of people with simple things.  They hold fun events that are sensory friendly and autism accepting.  It is local level advocacy that I can really get behind.

The Ladies from Salon Onyx
Highlight It Up Blue for Autism was my brainchild:  Get blue hair extensions for the month of April and use your blue hair as an opportunity to talk about autism and what it means for you in your life.  To educate people, to generate discussion, and hopefully affect people in some small way.  My friend Tera and I organized it online.  We got stylists from a local salon (Salon Onyx) to volunteer their time.  We made a Facebook page.  We networked.

Tera of Tera Photography
These amazing photos are hers!
The turnout was amazing.  Considering myself and my friend Tera organized it via email and Facebook, we were both stunned at the number of people who showed up to get silly blue hair extensions, make a donation, and meet each other.

Over 160 people stood in line:  mothers, fathers, brothers, sisters, friends, family, autistics and neurotypicals, professionals, teachers and lay-people.  People who want a 'cure'.  People who believe in neurodiversity.  People who knew very little about autism.  People who live with autism every day of their lives.  People who do every therapy known to man.  People who don't.  The rainbow of beliefs about autism was represented in those people who stood together in line this one day, who laughed and giggled about getting a silly little blue hair extensions, who had their photo taken, who shared the experience with their friends and family on Facebook.  They all shared one thing, though:




They may love someone with autism.  They may BE someone with autism, and they love themselves and their friends and family.  They want others to understand it;  they want to understand it themselves.  Some flounder.  Some don't. But they all LOVE.

This month I devote to loving autism.  I believe in acceptance, insofar as I believe that my boy has a brilliant brain that experiences the world differently and that is okay. His brain needs to learn about the world differently and that is okay.  I believe his path to happiness might be different and that is okay.  I believe he is capable and able and disabled and that is okay.  That is my message this month.  In fact, it is not just okay... it is good.

He is the Amazing J-man.

J-man, I love you.


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