Thursday, February 7, 2013
Each day he would come off the bus carrying this heavy machine in his backpack. I would quickly take the backback off his back, and asked the matron if she would mind not putting it on his back because it was too heavy. She agreed.
As the days passed, I would get Mikey ready for the bus each morning,and wait outside for it to arrive. One morning , as he was boarding the bus, I handed his backpack to the matron (who was an absolutely lovely lady), and she said" you know, they told me at school to tell you that they want him to have his backpack on his back when he comes on and off of the bus." Normally, this would not have been an issue, but with that machine in there, it was far too heavy. He was only in first grade! I explained to her that I would discuss it with the teacher. It was decided that he would wear his backpack, but carry his machine in his hand.Still heavy, but at least it was not on his back.
We were also asked to use the machine as much as possible at home, even for the simplest requests. Here is where we ran into trouble. Mikey was six years old. If he wanted a snack or a drink, he would usually help himself. He would open the refrigerator and help himself to a bottle of water or a juicebox. He would also open the snack cabinet and choose whatever snack he was in the mood for. He was very independent, and we thought that was a great thing. However, his speech teacher kept requesting that we make him use the machine to request the food and drink items at home. This seemed silly to us. Yes, we wanted him to utilize his machine to make his needs known, however, if he already knew what he wanted,and was able to help himself, why use it? Yet over and over his speech teacher pressed on about this. The more she pressed on, the more irritated I became.
We finally got together for a meeting, and yet again, I was kind of "scolded " about using the machine for simple requests at home. I found it so interesting that here I was again, being told what to do in my own home, by a very,very young, single speech teacher. In other words, she had no children of her own, had no experience running a household filled with people, and certainly did not have to deal with autism 24/7. I tried to explain to her that it would be more annoying for Mikey to have to run to his machine,find the page for food, scroll down to find the request for juice,find the specific juice he wanted, and then make the request. By the time he did all of those things, he could have grabbed his juice and been done with it. I also thought that it was great that he was becoming independent. She disagreed. I finally put it to her this way...I asked her to put herself in his place, and take the machine home for a weekend. I wanted her to try to live like she wanted him to live. She would need to use the machine anytime she wanted to do anything, such as use the bathroom,grab a drink, eat, go out, etc. She looked at me like I was crazy. Of course, she did not agree, but I didn't care. I was only trying to prove a point. It was very easy to look from the outside in and tell us what to do, however, it was not necessarily as easy to implement these ideas in real life.
I went on to explain that being patient was a difficult thing for Mikey. I had three other children to care for as well. Why would I make him wait for a drink, one which he could easily help himself to, just so he could press the right buttons on the machine? Sometimes the machine did not always work, this only frustrated him further. Sometimes I might be in the shower, or helping one of my other children....again, why should he have to wait? Plus, we were getting him to say please and thank-you without the use of the machine,and that was our goal from the very beginning. I thought the machine was a great tool to utilize in school, and also great if he needed to express something he could not otherwise express,but for everyday life at home, it seemed to be a bit too much. Mikey was doing very well with the machine at school, and that was a place where he could not just go to the refrigerator and help himself, so I understood the need for the Dynavox. I could even understand the need for it if we were in a restaurant, but in our own home, I wanted Mikey to learn to help himself.
The speech teacher and I never really came to an agreement on this, and unfortunately, that remained true for many years. Mikey used his machine daily at school, and we used it at home for his homework. We were happy to watch him grow and become more and more independent. Were we doing the right thing?I cannot say for sure, but it was working for us ,in our home. This had always been one of my gripes about some people working with my son. Yes, they had degrees in their field of expertise, and yes, they worked each day with children affected by autism, however,I had yet to meet one that had a child with autism.I looked at it this way, in life, helping children with autism is what they did for a living. Living with autism was our life.