So, today is the day a
coworker worker from Sources is coming to teach me how to plan a behavior intervention and how to execute that plan for "Not So Little Man". I have, as she requested, created a list of short-term and long-term behaviors that I would like to focus on. It's not a very long list.
Holding this one sheet of paper, and it's meager contents, I cannot help but compare this list to the list I had when "Not So Little Man" was five years old. It's interesting,that now, when is in his teens, that there are less behaviors to worry about, yet in my mind they are more worrisome.
People expect great things from him. They're angry when he does not make eye contact. His peers don't recognize or reason as to why he's ignoring their overtures. Teachers can assume that his echolia combined with his excessive use of sarcasm is akin to sassing. Because "Not So Little Man" has worked so hard, and received so many interventions, it is less obvious than "Not So Little Man" has a disability. So the very gains that we worked so hard to achieve, at this point and time, or biting us on our proverbial butts.
One of my best friends also has a child who is ASD, previously known as Asperger's. Recently we were talking about this upcoming visit with a worker from Sources. I was also talking about the buttons of fliers that I obtained to put on the board of the college for world autism awareness month. My friend, in the midst of this conversation, made a comment about how she does not advocate for her son at the same level that I advocate for mine. She also made mention that she was not up-to-date with the autism community, news about autism, visual training, new therapies, pseudo scientific therapies and so forth. I don't how other people feel, but it makes me very uncomfortable when other people talk as if what I'm doing is noteworthy. That being said, her words were startling. She's a very active parent. She is often at the school demanding better services and accommodations for her son, finding therapists, and a multitude of other things that parents do. Not ever have I looked at her outlook on autism and felt superior, or felt that she was lacking. I think that every parent has their own way to advocate for their children. I certainly hope that I have never given the impression that I feel other parents are not doing enough for their children.
Regardless, we were discussing my short list of behaviors and the more important topic of how people expect our sons will have all the skills and behaviors that a typical child their age has. I know every child of spectrum is different-I love that phrase, “if you've met one autistic person, then you've met one autistic person." Yet this is a complaint I've heard of, and read about quite often. Sometimes this is a matter of the people around your child ( my child), not having an understanding for what autism means for that child. I understand that learning what autism is is a continuous process. But as per school district protocol, all adults are required to receive autism specific training prior to being involved with any ASD student.
On the plus side, "Not So Little Man" has some wonderful people working with him this year. Although his EA is excellent, due to the social stigma associated with having an EA, "Not So Little Man" is working very hard towards more independence within the school. This is very exciting to me, as it is the time when "Not So Little Man" himself is learning to advocate for himself. He is starting to recognize strengths and weaknesses, which I think is of invaluable experience.
It is my hope that once Jody leaves today, I too will have an invaluable experience. It's great that there's always therapists about, able to direct, train, and intervene with my son, but I need the tools with which to teach "Not So Little Man" himself to direct, train, and intervene with his own behaviors. Anyways this was not supposed be a rant, I just wanted to share my excitement with the upcoming meeting. I will check back in later.
*Dictated with Dragon.