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A Step Towards Communication

  • Posted on May 13, 2013 at 10:00 AM

I was recently required to fill out a multi-page questionnaire about Alex’s communication skills. I took a quick look at this document, put it back, and made arrangements to fill it out with the help of school staff. That’s been done.

I arrived during the lunch hour (which lasts significantly less than an hour, but we still took an hour, so I got to say “Hi!” to Alex) to sit down with Alex’s teacher and go over the questionnaire page by page. The issue, which I found difficult to explain, was that the words they used to elicit information left significant room for interpretation.

So, our process consisted of:

  1. Reading the question aloud.
  2. Agreeing on what the question probably means.
  3. Applying the question to our observations of Alex.
  4. Agreeing on an appropriate answer.

This process stimulated some interesting insights about Alex’s means of communication. Without having been asked the questions and forced to articulate a response, I probably wouldn’t have volunteered some of the answers they were looking for.

Some of the things that we could readily agree on were:

  1. Alex’s expressive communication skills are limited to readily tangible wants and needs.
  2. Alex’s receptive communication skills are unknown: We don’t know how much Alex understands or how sophisticated his comprehension is.
  3. Alex tries to communicate in ways we don’t understand and seeks ways to make himself understood, yet he also gives in to frustration or gives up and we don’t always recognize his attempts to communicate.
  4. Successful communication is limited to a select group of people who know Alex well enough to “listen” in the ways that he can communicate, but even then much of the time there is a failure to communicate and “listen” successfully.

We also agreed that the ideal situation is to provide Alex with a means to communicate that can be expanded to communicate more complex thoughts and feelings. This means a system that is limited to expressing wants and needs would be inadequate, even if it were able to help Alex communicate wants and needs more clearly and more universally.

Furthermore, we agreed that the ideal situation would use Alex’s strengths to his advantage. The primary implication here is that Alex excels, in a seemingly intuitive sort of way, in the use of touch technologies. He uses iPads and SmartBoards at school and a Kindle Fire at home, and he’s able to figure out their capabilities more quickly and in more depth than most of the adults around him.

Not only did this process take us a step closer to getting Alex the professional help he needs to be paired with the right technological assistive communication device/program, it also helped his teacher and I better understand what Alex is doing now to communicate with us. Hopefully, this insight will help us to reduce the frustrations and failures and increase the success and depth of communication with the skills Alex already has.

Ironically, it started with a questionnaire that, due to its seeming ambiguity, could be described as an example of poor communication (based on my standards as a professional writer).

Waiting on Transition

  • Posted on November 23, 2011 at 12:00 PM

I attended Alex’s IEP and 3-year re-evaluation on Monday. By mutual consent, the meetings were combined and the material of the IEP represented most of the re-evaluation work, simply because nobody had any doubt that Alex still qualifies for special education services.

One good thing about the 3-year re-evaluation: When one of the therapists questioned why Alex wasn’t marked as qualifying for the special education services based on cognitive disabilities criteria, it wasn’t me who had to explain. The psychologist who was sitting in as part of the re-evaluation team provided the explanation, though he wasn’t a regular part of Alex’s education team.

His explanation was simple: We don’t know. Considering Alex’s sensory, communication and social delays and difficulties—all part of the autism criteria—we cannot effectively assess his cognitive disabilities; and, so we do not officially attach that label to Alex. All simple and straightforward.

The bad thing, of course, is that this had to be said. Again. Granted, the therapist in question is new to Alex. But the dominant assumption seems to be that because Alex is placed in a CD classroom he must have cognitive disabilities. We can assume—and many people choose to do so—that because Alex cannot effectively and consistently communicate that he knows how to do something, then he must not be able to do it. Of course, we know Alex knows his numbers 1 – 50, but because he cannot consistently prove those abilities through testing procedures, his teachers continue drilling him on them.

I almost wish we knew that Alex did have cognitive disabilities. First, there’s nothing particularly wrong with cognitive disabilities. You can still live a happy, productive life with cognitive disabilities. You can still be wholly and utterly a person with cognitive disabilities. It is a disability and does pose certain limits, and those limits do tend to put a ceiling on what you can do, but with enough effort from the support personnel and enough acceptance and accommodation, you can attain a pretty awesome quality of life. (I am not suggesting that’s the norm, but that it is possible.) On the other hand, not knowing is very difficult. Imagine being a twelve-year-old boy with a normal or above-average intelligence (distinctly possible since both his parents have above-average IQs), but being unable to express that intelligence in a way meaningful to others and to be drilled daily on the most rudimentary subjects like “What color is your shirt?” and “What comes after 32?”. If it were me, I’d be very frustrated, very agitated, and sometimes I’d get very angry.

I can, just barely, imagine Alex’s desire to break through that barrier—and the frustration and anger when he can’t. One thing about typical education strategies that always frustrated me was the rule that you say what you’re going to say, then you say it, and then you say what you’ve said. While teachers generally don’t follow this rigid public-speaking form, they repeat themselves a lot. As a child, I imagined how much more time I would have to play if they’d just say it once and leave it be. I didn’t need for them to repeat, repeat, repeat the same material over and over and over again. And I didn’t realize how important it was for the other students. It was frustrating. It was annoying. When I imagine myself as Alex with a normal intelligence, stuck in this repeat-a-thon for years, it makes me want to scream. It’s so pointless, so useless, and so very frustrating.

And Alex is frustrated. He does scream. He acts out in aggressive fashion. What if it’s not an inability to regulate his sensory system? What if it’s the combined frustration of being unable to communicate and being drilled with simple concepts day in and day out? What if his inability to regulate his sensory system is, in large part, a measure of his frustration in having knowledge that he cannot express and being drilled over and over on “meaningless” tasks?

I worry that this is exactly what Alex is going through, though I cannot prove it and I seem powerless to change it. Every time I try to nudge or push or shove the teachers into experimenting to see if Alex will find more difficult material more stimulating—I hit a brick wall, almost totally immovable.

So I hope and pray that the next year, the next school, the next attempt will bring about a break-through, either for Alex and his communication abilities or for me and my need to try to up the ante.

But for all my imaginings, the reality is that Alex’s sensory system is a mystery. We’ve tried just about everything any of us has ever come across and nothing can get him calm and keep him calm for more than a few seconds or a few minutes. Willy can go 0-60 with no apparent transition or cause. Ben can go 0-80. Alex goes from 0 to 150, and he has no in-between. He’s either asleep, at the edge of sensory overload, or over the cliff speeding for the crash at the bottom of the ravine.

My little guy faces so many barriers and we’ve tried so many things. And we’re stuck waiting…waiting…waiting for someone to figure out what we can do to help him.

Asking the Right Questions

  • Posted on February 10, 2010 at 2:55 PM

Alex, who is predominantly nonverbal, has been behaving in a way that indicates that bi-polar disorder or mania may be an appropriate co-label to apply to him.  While Alex’s behavior is very different from Mark’s, who has a diagnosis of bi-polar disorder, there are certain similarities.  After discussing the matter with one of the few psychologists whose opinion I value and trust, I decided that a mental health assessment may provide useful insights and possible strategies for helping Alex be more comfortable with himself and his environment.

In pursuit of this assessment, I recently filled out a series of mental health questionnaires.  Clearly these questions were not designed to address a child who is nonverbal at the age of ten, which makes me wonder how effective this assessment process will be.  Furthermore, a lot of the questions involved internal mental processes, which there is no way for me (or the doctors) to really observe.  While I understand there is a certain statistical validity and thoroughness to a set of generic questionnaires, there is also a de-humanizing element to this process.  Considering that I had to go through a thorough series of questionnaires to even get this appointment, it seems somehow inappropriate for their data collection efforts to continue to involve questions that are so poorly tailored to my son.  It makes me wary.  Are they prepared to assess Alex at all, let alone provide me with actionable information in response to that assessment?

Then again, when it comes to psychologists, I worry about that in a more generalized fashion.  My interactions with psychology have left me with a deeply in-grained belief that much of psychology is based on unquestioned, unquestionable biases.  One bias is that “different=bad,” which I reject wholly.  A more subtle bias is that observation of behaviors equips psychologists to explain internal mental processes.  Yet, there is something inherently absurd about this bias.  First, mental processes cannot be observed, unless you’re observing the brain at the time—in which case the issue is separating the many mental processes one is observing in relation to the many behaviors that are occurring.  Second, observation is by its nature subjective.  Most of us only observe what we look for, and sometimes we see things we’re looking for when they’re not really there.  Ironically, this absurdity is made apparent through the study of psychology.

Allow me to illustrate:  If someone were to look at my hands, they might think I’m afraid of germs.  This is a logical conclusion from a psychological perspective, because my hands have sustained (and continue to sustain) physical damage from excessive hand-washing.  I have open crevices in my skin which sometimes bleed.  I have scabs over partially healed crevices.  My hands look far older than their 30 years.  Sometimes my skin is so dry and stiff that it looks like arthritis has stolen their mobility.  A common explanation for such a destructive behavior is a phobia, especially when that behavior coincides with obsessive-compulsive disorder (a diagnosis I have).

And yet, my behaviors have nothing to do with germs.  Unless you’re looking for germ-o-phobia you won’t find any real evidence of it.  In reality, as subjective as my personal reality may be, the damage to my hands is the result of a combination of raising young children and having tactile sensitivities that makes touching anything sticky, tacky, slime, gritty, sandy, flaky—well, the list could go on, but I think you get the point—an adverse experience.  So, sure I wash my hands every time I change a diaper or touch the garbage can or sort dirty clothes or pick up miscellaneous things from the floor.  Sure, I wash my hands whenever I sneeze or blow my nose or go to the bathroom or take out the trash.  These are basic sanitary actions.  What makes it excessive is when I have to wash both my hands all over because the side of my finger touched something tacky, like the glue left behind by a sticker that was stuck one too many times.  Or when I do the same thing, because my hand brushed up against something sticky, like the ring left behind by a juice cup.

Perhaps my behavior isn’t rational.  Perhaps it is compulsive.  But, far too many people have tried to label my behavior, both officially and casually, without understanding it.  Yet, when it comes to people doing this to me, I’m prepared.  I’m a highly introspective person and tend to understand myself quite well.  I know why I wash my hands until they literally bleed.  When others throw their baseless speculations at me, I can flick them off with the little regard they deserve.

I’m much more wary when it comes to my children.  While I think I understand my boys fairly well, I’m also insightful enough to recognize that there is far more I don’t understand.  I don’t know how Brandon really feels about being shuffled between two very different households.  I don’t know why Willy feels so comfortable walking up to complete strangers and starting a conversation.  I don’t know what Alex is trying to do when he colors the same drawing furiously for a half an hour, discarding page after page after page and starting again.  I don’t know why Ben closes a book or stops a video at the same part over and over again, yet seems to like that same book or video so very much.  I don’t know these things, and I don’t think their behavior alone can provide genuine insights into the behaviors themselves.  To truly understand these emotions and these actions and all that goes on in-between you have to understand the experience of the individual.  The only way I really know to do that is through communication, but even that is imperfect.  What the other says and what I interpret are and always will be two entirely different things, and this isn’t because I am specifically flawed—all of humankind faces the same limitation.  What I understand and what is meant may be close; my understanding may be sufficient, but these two separate experiences are always going to be at least slightly different.  More importantly, they can be substantially different.

So, as I prepare myself for this meeting I have tomorrow, I remind myself that they may have a greater understanding of the discipline of psychology than I, but I have a better understanding of my child and an appreciation of the limits of that understanding.  For a child who struggles so much to communicate, it may seem natural to rely on interpreting his behaviors to gain insights to his internal processes.  But, these insights are far from perfect and that must never be forgotten.  Last, but not least, as we seek to understand Alex and to help him, we must remember to ask the right questions, because the questions we ask color the experience for each of us.