Dedicated to Teddy and Joel ..
I received a call from a mom who was worried sick upon hearing her child's bus ride will be one hour and a half to school. I try consoling her by saying Elisabeth's ride had been this way for six years and she appears to be adjusting to it. Although I have no way to detect her feeling about it or what actually goes on while in the bus drivers care one way or the other, I can tell she is in good hands by the smile and giggle she gives to him in the morning sharing a "high five " moment.
I explain to Worried Mom, I get the full report if she was happy, sad, sleepy, unusually quiet, or pale. When she gets off the bus into our home, I do the usual inspection of her arms, legs, and body in general while changing her diaper just to be safe. The only thing I notice is her fingers are shrivelled from her stroking her tongue and sucking on her tongue. She does this when she is left alone for long periods of time out of boredom but also out of pleasure after eating or before she goes to sleep. For this fixation I am selfishly grateful she cannot explore other parts of her body for now.
From my experience, these people, the bus people, are compassionate, engaging, and respectful to her needs. They are the first ones to recognize when our children are sick or in trouble. They were the first people who informed me that my daughter's other school was scheduled to close followed by a "I'm really sorry this is happening." The mother paused. There was silence. She begins iin one breath:
"No, you don't understand, he is too figidy after a few minutes and sometimes he can be perceived as having a tantrum and out of control. And to be left on the bus for this long? He does strange things that might not be understood by someone who is not trained to work with kids like him. He might take his clothes off or become fixated by his seatbelt and remove if he is unsupervised. He's fast. She continues with the question we all ask from time to time about services in general, is this humane knowing how tantrums and freakouts are initiated and then putting kids in an environment that causes it? How safe is it for the bus if the bus driver who has to stop the bus to investigate a situation he or she is not fully trained to understand or respond?"
I was silent. Very silent. I suggested asking the bus company to have somebody sit with him. "Can you call your pediatrician to write a note with an explanation?" This is practical and having a doctor's note will provide justification and she will pay extra for someone to sit next to her son. Her little boy, she explains presents as "autistic" but still has no prognosis or diagnosis to explain his neurological impairment. She jokes "I'll call the bus company, I'm sure they have a neurologist or expert on hand that can advise me."
Many of our children are helpless in this situation. Their typical developing peers can communicate if something is wrong. Our's cannot. It takes a long time to get used to being on bus for an hour and half. Shoes, baseball caps and clothes that get tossed out are just the "tip of the iceberg." Sometime, they become aggressive biting themselves or others. Maybe even putting the other kids at risk everytime the bus driver has to stop. The bus driver and monitor called me one time about one of the kids swinging at Elisabeth who showed no signs of distress.
We are frozen in a time zone trying to figure how we can provide and protect our children who have developmental patterns frozen in a different time zone of infancy. Their cognition impairment and neurological disorders cause their behavior to change as quickly as a second hand on the clock prompted by who knows what. When we are not there, it is natural for us to we worry. We feel guilty because we know things can happen but we don't know what or when or where or why or how. There are certain triggers we as parents, therapists, and special education teachers can recognize and respond. There are some we cannot and a lot can happen in an hour and half.
A whole lifetime can pass in one second.
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