12-9-2010: Independent and Socially Acceptable
I had been thinking about creating Erika's World for quite some time, when I finally got the "push" that I needed: an assignment to create a multi-page web site as a final project for one of my classes. In designing the web site, I envisioned that Page Six would be a place where I could regularly update Erika's teaching staff regarding relevant events at home, including new challenges, breakthroughs, and behavioral strategies. In addition, if I am adding any new content (links, PDF documents) to other pages, I will also post it here on Page Six, to ensure that Erika's teaching staff is aware of the new content.
In the upcoming weeks, you can expect to find stories about Erika here. I may share smaller moments, as well as stories straight from the trenches (including days which we'd rather forget altogether, that have left indelible marks on our family). I will include reflections on how far we've come, the great challenges we are facing now, and the challenges we expect to face in the future. It is my hope that, if nothing else, our stories are a comfort to another family facing similar challenges. It is my greatest hope that sharing information in this manner provides knowledge and insight which will positively impact Erika's future.
Lastly, I feel more than justified in using this as a platform to express my disgust with the recent events in the Republican-controlled Michigan health policy committee, as they refused to allow the Autism Insurance Reform bill to go before the Michigan Senate for a vote, for the second consecutive year. Expect to hear much more about this as we move into 2011. Our children deserve much better, and they need change now.
While the rest of Erika's World was ready to "go live," I found myself struggling to find just the right topic to kick off Page Six. However, having driven Erika to school this morning (a rarity this school year), I had the opportunity once again to observe the routine comings and goings in her classroom, and I also had a few precious minutes to sit down and talk to Erika's teacher. I was struck by a few things right off the bat.
Among the names and schedules and other information on the chalkboard, I read, "Two Main Goals: Independent and Socially Acceptable." In case you have never been in a classroom filled with young children with Autism, let me bring you up to speed. There are no rows of chairs and desks neatly lined up. There is a child hanging from a hammock swing, a child laying in the beanbag pit area (who did not feel well and was soon found to have a high fever and mom picked him up), a few children sitting at tables after checking their picture schedules, and my daughter was being wrapped up like a pig-in-a-blanket on the floor, getting a deep pressure massage from one of the amazing paraprofessionals. The "Two Main Goals" were not up there for these kids to read. They were a constant reminder to the staff of the guiding principles they were working with here. The goals sound simple enough, yet these teachers (and students) have their work cut out for them. For me, it was a reminder that special education teachers, therapists and paraprofessionals in the public schools are incredible people who face challenges minute-by-minute, guided by outcomes which will take our kids a long way: being independent and behaving in a way that is socially acceptable.
Seeing the classroom also serves as a bitter reminder to me: just two years ago, in first grade, Erika was spending some time every day in a regular classroom, with her nondisabled peers. She behaved in a socially acceptable manner, and she was able to contribute in that setting. She would do "calendar" with them, as well as participate during their art classes. Her special ed teacher was committed to making sure that she had these opportunities. How quickly things changed. Her second grade year (with a new teacher) was a disaster, and we ended up having to move her to the intermediate school district (ISD) program, instead of keeping her within our school district. It is an understatement to say that we were extremely disappointed that the special ed teacher assigned to Erika at the beginning of her 2nd grade year was neither trained to deal with Erika, nor capable of dealing with Erika. By removing Erika from a very disturbing situation and moving her to the ISD program, we were getting a well-trained (and experienced) teacher and staff. The tradeoff is that she is much further removed from her nondisabled peers, and she is immersed in a classroom of constant movement/ distraction/ sensory overload. Not the students' faults…welcome to Autism.
In meeting with Erika's teacher today, I am reminded how much she is dedicated to doing whatever it takes to address the idiosyncratic behavioral issues that arise. Erika is a "smeller," which is not that uncommon for kids with Autism. This can create situations from time to time, which can be described as "not socially acceptable" (at best). Being a fabulous, committed, and insightful teacher, she started using different essential oils (a few drops of each scent into separate film canisters) as a distraction. Open the canister, and "Voila! Let's smell this instead. What does this smell like? Do you like this one?" The proactive behavioral approaches such as this remind me that Erika is with a teacher and staff who really do care about the kids, and while it's easy for an outsider to say, "This is what you should be doing," there is an intensity in this classroom which guarantees that everything will change, child by child, and minute-by-minute. Wimps need not apply here.
To Erika's teacher and teaching staff: thank you for all that you do.
Erika's mom (and her dad, too!)