To all who reached out yesterday – Thank you. The feeling of being overwhelmed that I was experiencing, receded and by the afternoon I was feeling back to my old energetic self. Amazing how something so simple as admitting out loud how you’re feeling can elicit such an outpouring of support which in turn can transform all those feelings into something positive. It made me think about how we – those of us who are caregivers and autistics should have a place where we could go to get support, ask questions, a place where we could come together as a community and just be, with no leaders or hierarchy, just a place anyone who wanted or needed could gather and reach out to like minded people. If such a place exists, please let me know.
Hunter College, here in New York City, is hosting the 12th Annual International Conference in Disability Studies in Education, May 25th – 27th and I will be attending one of the presentations – Autistic and Female: They say That’s Rare, and so many other things – with Elizabeth J. Grace. I am very excited!
The program looks fascinating and if I could, I would have liked to have attended the entire conference. Who knows, perhaps next year I will be able to.
On a separate note, Emma became frustrated yesterday while at school and bit herself. This has been an ongoing issue, one that began when she was at her special-ed ABA based preschool when she was just three. A boy bit her, on three different occasions, causing the skin to break and each time this happened we would get a call from the school telling us that this same child had bitten her, that they were doing everything they could to monitor him, but that while it obviously hurt her, no real harm had been done. Not long after that, Emma began biting herself.
It is horrifying to witness your small child, in such obvious pain, attempting to manage their upset by harming themselves. Emma bites her arm or hand or in extreme cases will punch herself hard in the face. We have used a variety of techniques hoping to stop the behavior, but so far none have worked, though she does not bite herself as much as she once did and rarely punches herself in the face any more.
A few weeks ago I reached out to a couple of Autists I know asking for their suggestions and one had some great ideas about things that might help, such as chewy tubes, which we have bags of and had all but forgotten, and having a favorite stuffed animal with her. I decided to ask Emma whether she would like to have a stuffed animal to take with her to school, and while she declined, she did say she wanted to have two chewy tubes in her backpack. We discussed how when she becomes frustrated she can chew on the chewy tube and Emma nodded and shouted, “I’m so frustrated!” then grabbed the chewy tube I was holding and jammed it into her mouth, gnawing at it furiously. I took her response as a positive sign.
I don’t know if anyone at her school remembered to remind her about her chewy tubes or if in the heat of the moment they were forgotten, but we will continue to remind Emma that the chewy tubes are with her and she can bite them instead of herself.
Telling her, “We do not bite!” or “You may not hurt yourself!” while well meaning and said with good intentions has NOT proven remotely helpful.
To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘
And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.