As I continue to chronicle the saga of Joel, our autistic 20 year old son, it occurs to me that I often find the good and tend to leave out the challenges, which in many ways have existed since day one. This is not to say that the challenges are greater than the joys nor to say that we have not learned from the challenges, nor does it abdicate our responsible but loving expectations for him, nor does this mean that Joel is not a remarkable force in our lives and those who cross his path, but it would not be fair to present our son in a vacuum, to demonstrate the hills without showing the valleys, to share the light without also knowing the dark. So forgive me as I write realistically about Joel.
Joel's learning disability, which we do not always understand, is actually easy to handle. We just accept that there are some things we will not comprehend and some situations that he will not put together. Since all of us have different levels of intelligence and we do tend to learn in different ways, and Joel definitely has trouble reading and comprehending and recalling what he has learned, it should not be surprising that he prefers the concrete over the abstract and the obvious over the hidden. As a nearly consummate joke teller and a committed educator, I often deliver subtle jokes to see if he will understand, with the hope that the effort to associate the punchline with the story will aid in conceptual thinking. While he usually laughs (which is why he is often the listener of choice for my jokes), he does not always understand and gives me a perplexed but entertaining look!
This all makes for an existence and a training that cannot include subtleties of expression, expectations, innuendo, or natural understanding. All instructions must be clear, obvious, and intentional. Many times instructions require explanations for their existence and clarity of purpose. Just to say "please feed the cats" may also need a "...because they are hungry."
This may be why personal hygiene remains a mystery to Joel. He does not enjoy taking a shower, brushing his teeth, putting on deodorant, or shaving. None of these normal events is normal to Joel. They do not make sense to him and most require an understanding of long-term benefits. Yes we brush our teeth because they need it, but to Joel the act of brushing is just a burden. Shaving helps men look clean, fresh, and ready for the day, but for Joel it has no meaning, takes his time, and even hurts a little (so he says).
To this end, we have tried a smorgasbord of methods to get him to be independent and committed to personal hygiene. As is typical for Joel, every method is successful to a point and everything is ultimately unsuccessful. When something works, such as a sign on the door, or a list of required activities, or a stopwatch, we praise him and decide that method is the right one. Yet, eventually it quits working and we find ourselves once again searching for the answers.
As parents who will sacrifice everything for our children, we do not stop trying to help Joel, and we remain committed to the concept of teaching Joel independence in as much as possible. We do find that in general, a routine with written instructions is the best approach to most problems. Connected to this is the constant reminder to Joel to be aware of himself with the sensitivity to how others see him. This is a difficult concept for a concrete thinker, one who sees the obvious and does not understand the subtle.
Yet it is all rather dichotomous due to the irony of Joel's personal presentation. On any given day, he may forget to wear deodorant, brush his teeth, shave, or even comb his hair, yet that same day he might wear a nice suit with a tie and polished shoes. He is complimented often on his general appearance, thereby making the lesser obvious problems seem negligible in his mind. This may, in fact, contribute to the challenge.
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