Word-doodle of the day
I sat down to write. The boy was sitting beside me fascinated by images of someone’s youtube video of their Thomas the Tank Engine wooden railway collection. I have seen this video a thousand thousand times. It seems every time I see the boy, he ends up watching this video. I am immune to the nasal commentary announcing the “old-style Thomas… new-style Thomas… old-style Happy Birthday Thomas… new-style Happy Birthday Thomas….”
The boy noticed my open laptop and instantly intoned a demand, pointing to the screen and saying, “Thomas!” He has now repeated this same gesture and demand three times. I am immune to his demands. I refuse to negotiate with terrorists!
The earphones settled on my head, I listen to Rise Against. I am ready to write. I introduced the boy because he is the topic of the day.
It is the end of September and the boy is still not in school. It is the end of September and the boy is eleven and he is as diffident and unbending in his needs and wants as he was when he initially quit school in February last year. Our attempts to routinize his schedule so that he could be moved from his mom’s house to my house or from his mom’s house to school or the respite worker’s farm failed miserably this summer.
He needs the company of a parent or his respite worker. He prefers to enjoy this company at his mother’s house. Occasionally, he will venture to my house. Without one of these adults, he will run in search of his mother. This frustrates his brother to no end. It frustrates his mother because he is glued to her side, constant company to every environment of her day and week. It frustrates me because I cannot venture anywhere with him.
However, we are hopeful. He starts a new school with new teachers and new friends to enjoy. There is a pool of professionals proffering possible solutions to the stalemate. The intention is to transition him from his old school (where the situation had already changed over the course of the summer) to a new environment and then keep him transitioning throughout the year to the school he will be attending next year. It is a complicated and busy affair. This would seem to indicate that it won’t be successful (complexity is rarely successful with children, I find)… however, I am strangely hopeful.
If the boy can transition to these changing circumstances, he will find it easier to live the next few years of his life. He might even enjoy the opportunities that will be coming his way. Going to school here in town will offer him the opportunity to swim regularly (something that he loves). He may even forge some new friendships with local kids. There are a ton of possibilities that open-up this year and I am excited for him. And worried. The glass is half-full. Will he notice that or the empty-half?
The boy is again demanding the computer be turned into a Thomas the Tank Engine portal. He is bound and determined now and I am fighting to finish this sentence before he melts down and damages the computer accidentally. Alas… I must succumb to the demands.
The boy grew bored of watching Thomas on this machine. He enjoyed Hero of the Rails and then vacated the chair in front of the laptop. I am again in control and typing.
Some reading this are critical of my surrender to the boy. Why not force the temper tantrum and teach him the value of “NO?” That’s the thing, you see; he does know the value of “NO.” Yet, eleven years into his life, he also recognizes that sometimes “NO” means not ever and at other times “NO” means not now. He cannot abide the not-now-no. It is not consistent and he does not have the communication skills or language ability to understand the explanation of the condition. Some talk about training the boy in the manner of training a puppy to wait arbitrarily for a snack. Except he is not as simple as a puppy. The boy is brilliant. He is human. He knows that adults are flawed and arbitrary and this lack of consistency is abhorrent to him.
For example, there was an issue last year, when he was going to school, with his use of a particular washroom. There was a decision made that he should not use that particular washroom and instead should use another washroom. This change was a spectacular failure. He refused to change. There was no reason that he could discern for the change: the washroom was still a washroom and he had been using it for years. Locked out, he would sit and refuse to move from the chair beside the washroom, waiting for the door to open. He would sit for a long-time. He would go off schedule. I sometimes was able to rescue him and steer him to the other washroom (he still listened to me sometimes), but I could not always be there. However the waiting meant that he was off-schedule for the rest of the day (and he demanded a very set routine day-in and day-out).
This inflexibility is what defines him. He has very rigid expectations and responses to stimuli in his environment.
Others have suggested more physical, corporal approaches. The problem there is the same. The boy cannot make the connection between the situation and any physical interaction you have with him. Without the use of language to reinforce the reason, it is meaningless to him. The “old-fashioned” approach is as reliant on language as any “modern” approach.
Which means that we maneuver around the boy. Some say that this must be exhausting, but it is not necessarily so. If you were to buy a house and renovate it to make it accessible to your son, you can develop a mental picture of what it is like to maneuver around my boy. The difference is that, instead of renovating your house, you have to renovate your mind.
Imagine if the boy was wheelchair bound… you avoid the stairs and places with stairs. Identically, we avoid places where the boy could be unpredictable and hard to manage. Interestingly enough, I have only rarely had run-ins with people who are not kind and understanding about the situation once I mutter, apologetically, that the boy has autism.
I worry though that, as the boy gets bigger, people’s patience will begin to run thin. I hope not. I hope that the community will continue to grow with him. That is the key word for this time of my life: hope.
I just keep on hoping. That well is a very deep well, I find.