On June 1: I led a team of librarians in providing a workshop for faculty at our Summer Faculty Institute on campus. I had the opportunity to invite the scholar, writer, technologist and all-around great person Dr. Tom Mackey to provide the keynote for the information literacy track that the library sponsored. Because our campus is undergoing a general education revision, a discussion of metaliteracy and its impact on information literacy was timely. This is the first time that I have seen our library put forward such a cohesive effort to push library instruction out there, and I was proud to have been part of it. Some great conversations emerged that I hope will help the UD Library move forward.
On June 2: I took Jack to Christiana Hospital for a swallow study (the first since 2014), to learn if he had regained any function now that he has had electronic stimulation therapy during feeding trials for a few years. He was frightened by the large machinery (what three year old wouldn’t be) but we both tried to be brave. He, as the machines whirred and clicked, and I too while listening to the radiologist’s subtle narration: “Come on, Jack- Oh, no… No, Jack, oh n-n-no…!” Jack’s feeding therapist, Debbie, who has worked tirelessly with him on feeding, was visibly crushed by the lack of progress shown. I was not. While she may have seen advances in chewing, coughing to clear, etc., we still see plenty of aspiration at home, so this was no surprise. We’ve seen so many miracles. Alas, this one still eludes us for now.
On June 3: John and I joined a team of 15 educators, nurses, therapists, and administrators for Jack’s first IEP meeting. An IEP (Individualized Education Plan) is a very important document for special needs children who will require extra educational supports; the meeting represented an important transition for Jack. Because he is now three, he will no longer receive school and therapy services through Child Development Watch, (“CDW“) which is Delaware’s early intervention program. This IEP meeting would determine which therapy services would be provided to Jack and how frequently, and what school placement will provide the “least restrictive environment” for him. In the many meetings which led up to the IEP meeting, I was amazed to find myself feeling overwhelmed and inadequate despite my M.Ed and professional background. I found the back and forth between school district representatives, caseworkers, teachers and therapists dizzying. I encountered what it must feel like to be in a bad information literacy class, with a librarian who speaks in his own acronyms, his own language- but doesn’t take the time to gauge the learner’s needs and adjust his pace. Thus, it took a lot of work in the six months prior to the June 3rd meeting -a lot of reading, a lot of discussion with family educators and deaf education advocates- for me to gain a functional understanding of the issues and to build a sense of what questions I needed to ask, what to leave unsaid. Thanks to these partners and a great deal of careful groundwork, the meeting (which had shown every sign of being somewhat contentious) went smoothly, and we got Jack the placement at Delaware School for the Deaf that we had so hoped for in the coming year. We’re happy to report that he will attend school all day, 5 days a week, in a sign-supported speech learning environment starting this September.
In my last post, I wrote of trying to find ways for the “mother-and-advocate” self to be at peace with “educator-and-career-lady” self, and I think I’ve begun to hit on it. The Association of College and Research Libraries provides a Framework for Information Literacy which guides librarians’ thinking and ? teaching around information skills. One of the frames, entitled “Research as Inquiry” outlines several knowledge practices: actions regularly taken by those who are becoming more agile at working with information. I think this frame is especially helpful for parents of medically complex children, so I decided to map these practices, along with lessons learned and strategies that I have picked up in my own journey as a mother (who also happens to be a librarian) of a medically complex child. The piece is strictly practical in nature and will appear in the August edition of Complexchild.org. While I recognize that putting this work forth in an online magazine might not make it as valuable to those reading my CV as a peer reviewed journal article might, I think that the opportunity to help others as they struggle through the real challenges of negotiating information ecosystems on behalf of their own children is worth it.
I also was recently able to take over the liaison role to our campus’ Disability Studies minor. I volunteered our family to pair up with a team of students in the program doing a capstone project. They met with us to learn about Jack, talk about the services and policies that impact his life, and created a video to show Jack’s story. Their final project featuring our family is here. While the video probably gives us more credit than we deserve, this interaction with the students closed the loop for me. By sharing my experience as a mother of a medically complex child, discussing strategies, hopes and concerns with the students, we helped make the theoretical practical for them. By seeing the product of their work and observing their information gathering and creation process, my work as a librarian was greatly enriched. I thought about what it truly means to be a student tasked with creating new knowledge products which have a life outside of the classroom in a networked world. I drew greatly from this experience as I thought about how best to structure our summer faculty institute workshop for faculty. In essence: the students connected the practical to the theoretical for me.
It’s an exciting new avenue of exploration for me, and I hope to be able to develop it further by taking on new professional challenges, and by increasing my engagement with local disability advocacy groups.
Next post: A deeper dive into the educational and care arrangements for fall, and thoughts about the role of intuition when making care decisions.