Wednesday, June 2, 2010

This Blogger on "Square One" Awareness

Photo: C1 participates (sort of away from the crowd) in a watermelon eating contest during a neighborhood party. He didn't really "race" but at least he joined the activity. : )

It's June 2 now and just two months past Autism Awareness month. April 2010 was the first time in a few years that I haven't helped my group in Central Michigan raise awareness about Autism Spectrum Disorder (ASD) in the community. Unfortunately I didn't blog too much either. I had a good reason. My family and I left Michigan on March 22 and arrived to our new home in Washington on May 29.

Moving didn't mean I was totally excused from autism awareness. I've been actively involved in what I'm referring to as "square 1 awareness." What I mean by that is not so much explaining autism in general, but rather explaining how autism affects my oldest son. My ongoing mission has been to educate our neighbors and my son's playmates and teachers as well as our neighbors. Most people around here seem to know about autism in general, so mostly I've had to explain how autism and my son in general (for example, his quirky habits, what causes him to melt down, and what does and doesn't motivate him.)

My first step was to talk to the educators at the local elementary school since my son was to start school about a week after we moved. Talking to adults about autism and my son is fairly easy for me and I felt that what I had to say about him in terms of ASD was well received. That took a few hours, but I enjoyed talking to them and my efforts seemed to have paid off as things are going as well as we can expect them to go.

I found it to be harder to explain to the neighbor kids. Usually I don't say anything to children about C1 until something comes up. So on a sunny, warm day when my son kept insisting on everyone (two other boys and my younger son) playing inside instead of outside, I had a bit of explaining to do. My younger boy, C2, and I both explained that C1 has autism. That didn't change their minds about playing outside (I didn't expect it to), but they seem to still accept him to a certain extent. Eventually, my son did join them outside, but it took awhile.

The kids I talked to on that day live on our street. There are also a few who live on the street behind us. My husband took up the job of "square one awareness" when a middle schooler mentioned that my son "was a little bit different." After my husband told him that C1 had autism, the boy said that "no one around here would give him a hard time." That made us feel pretty good.

So yes, now the majority of our neighbors know. A lot of times we volunteered the information to the adults just in case they saw him running down the street screaming on a bad day. "Meltdowns aren't too pretty," is a line I use often when telling neighbors about how autism affects my son.

When we told one neighbor at a recent neighborhood party, he addressed our tendency to volunteer information by asking us if we were concerned about prejudice. We said no, that it didn't happen too often. We didn't say it, but what we really fear is prejudice developing because we didn't do our job. Fear and prejudice often develops as a result of a lack of knowledge and/or communication. So far, we think we've done our job of "square one awareness" pretty well and feel accepted into our new community.

However, our awareness work is far from over. The next step is educating an array of doctors, therapists and others (such as summer camp counselors) who will work with him in the future. As I have previously explained, it is not easy to get an intake (first) appointment with a doctor around here (much to my dismay) and we have to wait until July an appointment with his new pediatrician. However, our first appointment is with a therapist the third week in June.

I spoke to the therapist, a psychologist, yesterday and disclosed some details about my son so that he will understand better to work with him. It seemed to go pretty well, but we'll know a little bit more about how it will work out after the first appointment. So, yep, this new phase of square one awareness has already begun. It will go full strength ahead through the summer. We have a lot of appointments and even a summer day camp in July. Wish us luck as we continue our mission of awareness! : )


h.rivas said...

Julie - I can totally relate! And now, you've inspired me to work on my autism awareness! I feel like I never do enough - but I think that's because I'm not targeting and/or organizing properly! Kudos to you! Question, did you move to Washington because of the schools for C1?

Julie L. said...

Thank you for your comment. I'm not all that organized, but I try to communicate about my son when it is necesarry or when the opportunity arises.

We moved to Washington from Michigan for my husband's new job. The economy in Michigan is at the bottom of the list in terms of how well states are doing and his job there was in jeapordy. Relatively speaking, Washington is in decent shape.

Casdok said...

Good luck! Sounds like you are off to an excelent start :)

Cassavaugh Family said...

Julie, I have wanted to read this post for awhile but blogging kept getting pushed aside for other things. I love the term "Square One Awareness". It makes me think of something that has been a recurring thought recently. I'll try to explain it and this is my first attempt to put words to the thought. Sorry if this turns out lengthy.

Because of our great experience with peer buddies during the school year for S we decided to do a birthday party as it was last week after school was out. It turned out 3 (2 girls 1 boy) peer buddies were able to come. We also had 2 boys he knew from church for a total of 6 kids. So glad it wasn't more, it was just right. I had a visual schedule set up for what we would do and even involved Sam in letting him decide what should come first, second etc.

The party was so smooth, no transition issues from one to another activity. His peer buddies were right at home and knew exactly what to do or not to do. I met some wonderful parents in the process of this. At the end of the day I was thinking and evaluating how it went. The one thought I had was how nice it was to not have to explain to any parent about Sam because they already knew from the peer buddy process. Then I began to wonder what effective ways I can communicate to other adults about S as needed. It is basically the same idea as your square one awareness. I haven't come up with any great ideas for kids but don't have too many scenarios right now that force the need. I have been working with a piano teacher who wanted to take him on. I have realized how much information I want to share but don't want to overwhelm.

I have begun to make a list of things in general about autism that relate to S. as well as some of his quirks, preferred interests, how he identifies his escalating emotions, breaks, etc. I am going to turn it into a little info guide so to speak about him. It will change with time and need to be updated. But I figured I could provide this to a new Dr, teacher, parent of a new friend, swim instructor etc. and they would instantly have a mini picture into his world spreading a bit of autism awareness. Then if more information is desired it can be discussed and questions asked. I haven't finished it yet but I can't stop thinking about it. I realize its not everyone's style but it is my style and I am hoping it proves to be beneficial. I'll keep you posted on how it goes.