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Implications of Therapy

  • Posted on September 20, 2009 at 12:00 PM

Bev, of Asperger Square 8, has taken on an excellent project that has opened my mind to many new thoughts.  It’s called: A Checklist of Neurotypical Privilege.  While the entire document is worth reading (I highly recommend it) one piece stuck out and pricked me – mind, body and soul.

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.

Humane Dentistry

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

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

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

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

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

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

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

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

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

Back to School Ruminations

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

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

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

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

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

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

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

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

Making the Connection

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

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

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

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

* * *

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

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

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

* * *

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

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