Living One Week on the Spectrum Side of Life

When I first moved back to the U.S. from living abroad, I ‘traded’ in kind housing for re-writing and helping to better implement an IEP for a 12 year old on the autism spectrum.  It was my first time outside the classroom ‘observing’ what teachers do (I have been a teacher for 20 years and always a member of the student study team), what was not going on in the classroom, at the school or with divorced parents and how it manifested itself for this child.  I found out that not all teachers or schools are as committed to working with special needs students as I had hoped.

I am still in contact with this family and am called to consult for various IEP related items. The parents thought it would be great for their child to visit with me for one week as a ‘respite’ for them.  Since I was a teacher, understood autism and could maintain order,  the child had a connection with me and I had the free time, this was arranged.  It was an amazing learning experience and, much like my Peace Corps experience, I believe I gained more from it than the child who visited me.

One of the most gut wrenching experiences for me and the one which made me cry one night was when this child explained to me they could not understand if I was upset/angry.  The child had put some flowers in a book they were borrowing from me to do a drawing for a mosaic project. The child closed the book with the fresh flowers in it and the flowers mushed, essentially ruining the art on two pages. I explained that by not following directions, this was the result and we would not be going for the outdoor movie show by the bay that evening but instead would stay in and play cards. The child knew I was upset/disappointed on some level but ultimately told me that since I do not raise my voice when I am upset, it was hard for them to understand.  This amazed me as anyone who knows me would point blank state they can read my face with no need for verbal cues whatsoever to know what I am thinking. I have worked with special needs students before and this has never been an issue. I decided the best thing to do was sit down and show my happy/normal face and then my upset/sad/angry face so the child could see the difference. It worked and things flowed better after that. It made me realize how difficult it must be to navigate a world where even an ’emotional’ face could not help with all the information necessary to navigate social interactions.

During the week we went to The Exploratorium, The Tech Museum, cruise around the harbor, cable cars all over and The Aquarium of the Bay. In addition, this child went with me to RAFT as I prepped for a class to be delivered in another week and I thought they would enjoy ‘shopping’ at the mega rich creative RAFT warehouse but found out it was instead overwhelming.  Our afternoon during lab hours at the Mosaic Institute in Oakland was outstanding and the biggest success of all our activities. The student completed a jellyfish picture that was artistically well done in spite of this being their first experience with this media.

We volunteered at Ploughshares Nursery where I volunteer regularly, we spent time at the beach on the Alameda side of the bay and cooked our own meals. I learned that this child would only have turkey slices on a sandwich, not chicken – chicken was for salads, stir fry, etc.  Organic American Cheese slices from Trader Joes were THE CHEESE and in certain food situations had to be made into triangles.  Meals were ritualistic and there was a very specific order to things from the way vitamins were taken to having tea.

The one thing that seemed to leave the largest impact of all, which would have never occurred to me as being significant, was the free box that ended up being put down in the lobby of my building.  Apparently some neighbors were unpacking after their move and had random things to shed – a couple vases, some wrist bands, books, a metal box – all the usual stuff from after a move.  The child loved this box as it seemed to magically gain more goods at random intervals from when we left in the morning or after a couple days.  This provoked a whole conversation regarding the purposefulness of a free box, did I ever contribute to a free box, did I ever take anything from a free box, did I have anything I needed to add to the free box right now and so on.

As you might imagine, the week was a whole new exploration for me in education, ‘parenting’/babysitting/nannying, the conundrum of life and the larger questions of why I enjoy teaching.  It was emotional, thought provoking, stimulating, frustrating as all get out and amazingly rewarding. I am thankful for this incredible opportunity.

After I took this child back to the airport and the child was safely on the plane home, I went out and bought some hard apple cider and a package of chocolate fudge pop-tarts. I had maxed my limit and just needed the rush of an over the top bad carb fix. It is now a week later. I am still reflecting on all I learned. I added some things to the free box in the lobby and took two things out. My life has been altered and I gained much as a teacher and as a member of society.

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