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Imagine that in the last four or five years you have spent one hundred eighty, seven hour days, in rooms where nobody understands what you are trying to say and you are unable to comprehend what everybody else is trying to say. Now, that’s bound to gnaw into you a bit. Imagine that as you watch all the activity around you, you notice that what you are doing doesn’t even closely resemble what everyone else is doing. Hmmmm; bet that makes her feel like the odd man out. Imagine that the people working with you have little to no respect for your comfort zone and are incessantly pushing you outside of it. A bit of stress there, don’t you think? Imagine a setting where the people always want you to work with them instead of them working with you. Something’s backwards there. Imagine working with people who think you are simply stubborn, willful, and spoiled instead of fearful, uncertain, confused and afraid to add one more failure to the mountain that is now forming. Maybe the people in Abby’s life have this one backwards, too. Seems in that situation the words could just as easily describe the grown-ups as the child! Imagine that for the last three years you have been separated from one of the two people you depended on for emotional security and human interaction; understanding, unconditional acceptance and Unconditional Love. Imagine that one of your parents has little respect for the other parent and thinks nothing of upsetting the predictable and much needed rhythm of scheduled parenting time with the parent you miss so much. Imagine the grown-ups in your life giving you a hammer and telling you to go sew a fine gown, day in and day out. [See: Tisk! Tisk!] Any child, placed in the care of grown-ups who know you don’t have the tools to accomplish what they are demanding of you, can be expected not to feel safe, can be expected to experience insecurity in their presence.
It’s nice that people want Abby to have a social network, but language is the most significant and essential component allowing this to form. Put a child who does not have the pre-requisite skills to succeed with the tasks placed before them and pretty soon you’ll find them crawling under a desk to escape the pain of failure. Not only that, but when a child spends hours attempting to do things people want them to do that are beyond their abilities and most certainly outside their comfort range, when they go out for recess they damn well won’t want to go back inside. Is it fair to blame the child for our failures? The authoritative professionals in Abby’s life want Abby to develop appropriate social skills. How in the most intense thermal regions of Hell is someone who can’t talk effectively or understand adequately going to develop age-appropriate social skills? Knowing the authoritative professionals in Abby’s life are equally hamstrung; (Face it: Society has given them hammers expecting a fine satin gown to be created, too. Ain’t gonna happen!) knowing this does not make the damage done to Abby any less painful, or the ache in my heart any less agonizing.
Were Truth to be told, Abby’s behavior is well within the norm; entirely age-appropriate when the entire list of handicapping dynamics are considered. Abby’s behavior is entirely age-appropriate even without the handicapping constraints of Down syndrome. What child without the handicapping constraints of Down syndrome, so thoroughly hogtied with pathological language difficulties, would continue attempting social interaction after five years of painful, humiliating, failure? Failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure, failure. Can I stop now? Do you have the picture? I mean, God placed a good deal of redundancy into the system, but this is ridiculous. That kids without handicapping constraints manage to achieve satisfactory social interaction does not make them admirable. Their accomplishments have been realized with little to no effort. Normal speech and all the doors that are flung open because of it is a magic taken for granted by just about everyone who has it. Abby has struggled a thousand times harder to achieve her years of perceived failure. Her unimaginable effort makes our effortless language abilities pathetically trite; her years of perceived failure make our presumed successes worth less than sheep pellets. Which of us after years of humiliation would continue coming to work just to experience another day of humiliation; with a smile on their face no less?
I have just come to realize, when Abby watches a video, she gleans very little meaning from the dialogue. The dialogue flies by so fast, races from one character to another, she simply can’t keep up. Receptive and expressive language being such a difficult ordeal, she has developed an above average ability to read body-language. She comprehends the videos she watches by watching the movements and nuanced expressions of the characters, not by the words they are saying. Everyone Abby comes into contact with oozes with sympathy and compassion. She is inundated with good intentions. Likely, Abby doesn’t listen to a word you’re saying, unless there is a bond established by your body-language and there is a specificity of language involved. She comprehends meaning from what your bodily movements and facial expressions are saying: No. Make that screaming! For all practical purposes, Abby doesn’t speak our language. So, being the grown-ups in this relationship, we must learn hers.
The first principle to understand is the one which establishes for there to be a productive relationship there must be an overwhelming sense of dynamic respect. This means, the child knows without a doubt the grown-up working with them knows the child is always doing their best. This is consistent with a determined-universe philosophy. Believing this isn’t enough. Kids pick up on doubt faster than milk spills. They aren't fooled. If you don’t know this, Abby will immediately know you don’t know it. Even if you are a very capable liar, your body-language will communicate all Abby needs to know to cause her to withdraw her trust. And when you don’t respect and trust her, it is impossible for her to respect and trust you. Respect and trust are the rat-walls, the underlying foundation, for an emerging sense of safety and security. Not much is learning occures without them.
The second principle critical to a healthy grown-up and child relationship is the one which states: Observable behaviors are nothing more than superficial symptoms attempting to direct the grown-up’s attention to what is really ailing the child. A superficial symptom should not be tampered with unless it is a threat to their physical existence. The symptom should be allowed to exist. It is a valuable indicator for the concerned grown-up. When an observable behavior expresses itself, it is the grown-up’s job to assess the symptom’s underlying cause and not to address the symptom. Once the underlying cause has been addressed, if the symptom disappears, the method of addressing the underlying dysfunction was successful. If the symptom remains, the grown-up must go back to the drawing board and make another attempt at addressing the symptom’s underlying cause. To use behavior modification, Pavlov’s dogs techniques, or down and dirty, outright punishment, to erase the symptom simply suppresses the disease and eliminates the grown-up’s ability to gauge whether or not their efforts at addressing the symptom’s underlying cause was a success or a failure. Prescribing pain medication for a person with cancer eliminates the victim’s symptomatic discomfort, but does nothing to cure the disease. Treating symptoms and ignoring the disease is quite obviously less than prudent. A child’s behaviors don’t lie. Symptoms are authentic; almost sacred. Even if the child’s behavior is lying, the behavior itself does not lie. Spanking a lying child and sending them to bed without dinner may prevent the child from lying in the short run, or simply cause them to hone his or her fabricating skills, but it will not address the underlying dysfunction the child’s honest behavior was attempting to inform the grown-up about. The underlying dysfunction will be left to fester, an abscess will form and there will be an even more powerful eruption at some point in the future.
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