June: The Professional is Personal (and the Theoretical is Practical!)

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Faculty program planning

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.

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Cramming for the IEP meeting

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.

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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.

imageIt’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.

May Update and Mother’s Day Thoughts

The Grotti family had a really fantastic Mother’s Day celebration last weekend, which included a hike, ice cream, and planting new lilacs in the yard.  Since I had been away at a conference for a few days prior, the kids were much more lovey than usual, and I think we all had a pretty tremendous time.

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Following Mother’s Day, we had numerous visits to the hospital for a combination of sick visits with Pulmonology, (Jack is fighting another virus and has been getting fevers pretty constantly for over a week) and follow ups.  Medically, there’s some positive news to share on several fronts.  Some time ago, Dr. Chidekel (Pulmonology) had given us the green light to place Jack on CPAP at nights rather than continuing with a breath rate on his vent.  With the exception of his most recent bout of respiratory illness, it’s been going very well for nearly 2 months.  This continued weaning from ventilator support is a great sign.  We’d love to say good bye to the incessant night-time beeping of that machine!  Our next visit is June 6th, and at that time we’ll schedule a sleep study to learn what’s really happening with Jack’s Co2 levels and with his brain at night.  This is likely to happen this summer.  There will also be another swallow study this summer to help us learn how much progress Jack has made with his eStim therapies.

Jack also had follow up visits with Dr. Piatt and Dr. Walter, who have continued to monitor Jack for any signs of tumor reemergence.  They indicated that we should have an MRI in November.  If that comes back clear, Dr. Piatt said he feels that “we can declare victory over that tumor”.  Another amazing piece of great news!

Jack wowed Dr. Walter with his spoken English skills–particularly when he stuck his finger in his ear and held it up to Dr. Walter, saying, “I got some potatoes in there!”  (I’m sure oncologists could use a good laugh every now and again, but I was a bit mortified by that one…)

I was struck during my recent visits to the hospital at how comfortable –happy, even– I felt when I was there.  I tried to puzzle through this very strange feeling, and a talk I attended by Dr. Kimberly Griffin, who studies the identities of transfer students through the lens of intersectionality helped me to make some sense of this.  For any working mom, identities are always in conflict.  When you explain to the crying child that you have to go to work, when you explain to the supervisor who was expecting something from you that you have to go fetch the sick child, there is an uncomfortable clash of very important identities.  I’m a woman, a mother, a wife, a daughter, a professional, a scholar, an artist, a writer, an advocate, and an educator (and these are just the identities that spring readily to mind).  As this intersectionality theory points out- we are all complex, and these identities wax and wane in primacy throughout the day, the week, the lifetime.

Lately, following some pretty wild shifts at my workplace, I have found my professional identity to be much like a hot, brittle planet orbiting a bit too close to the core of the system for its own good.  Navigating the context in which that identity exists has recently forced me to aknowledge the gravity that I have (unwisely) given to this particular aspect of my self.  Being at the hospital takes all of those questions and those unrelenting self-judgments, and silences them.  That planet is knocked into a completely different orbit when I’m back in those hallways, looking at all that could have been, and all that we have accomplished.  I can have just a single, comfortable “me” when I am there, and no one faults me for that– least of all myself.

I find myself mulling over this lately.  Is there a way to meld my professional life with this other identity?  Is there a way to take all of this theoretical and practical knowledge of information literacy specifically, and education and learning more broadly, and apply it to help other parents of a medically complex children? Is there a way that I can give back?

… I have some ideas.  But that will have to wait until the next blog post!

November: Communication and Motion

I am sitting at Jack’s bedside in a dark room strewn with toys as he naps. He’s had a rough few days of pesky fevers, persistent headaches that scared the crud out of me, and now things have settled into a familiar pattern of a bad virus. It’s not too bad- just some extra meds and breathing treatments throughout the day, and extra vigilance on our part. The missed work is the hardest part, and I hope we will get through this one without a hospitalization.

When Jack has headaches that are not caused by ear infections, I panic. I pace around a lot and chew on my fingers. We are very good at keeping the “what ifs” under stern lock and key in this house, but when I see Jack crying and clutching at his head, all the bad scenarios crowd around me, and I remember that the swamp is very near.

Oncology assures me that a reemergence of the tumor is not likely. The greater fear is shunt infection or failure. Thankfully, Jack’s bad headache seems to have coincided with what was probably a viral fever, nothing more. If we see it again, we’ll be heading to Dr. Piatt for a consultation, I think.

Perhaps one reason that my fears seem so amped up this time is that Jack has been doing so incredibly well.

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There are two very big pieces of news to report. First, Jack is beginning to communicate! He can sign “please” now, and “wash”. It is surprisingly difficult to teach a child who is not rewarded with food how to communicate. Turns out, the bath and playing with water are favorites, so perhaps that is why “wash” has had resonance with him. I’ve been staying up late here and there trying to learn signs. I’m now signing “thank you”, “mommy”, “daddy”, “bedtime”, “cup”, “cat” and “play” pretty consistently to him, in the hopes that if done enough he will pick it up. His receptive language has improved as well. If you ask him if he wants a bath, he will drop what he is doing and head for the tub. He is pointing to things with more consistency.

Jack watches everything, but he often seems withdrawn. We wonder, is that just who Jack is- more of an introvert? Is he cognitively different from us? What is he thinking?  It was as if John, Sam, and I were on an island, a solid place made of names, with rules and patterns that made things knowable. Jack seemed adrift on an ocean that we couldn’t bridge. His arm-waving was unintelligible to us; our constant chatter a barrier to him. When Jack first “got it” and began signing consistently for things that he needed help with or wanted, it felt like we had thrown a line into outer space and hooked the moon. A chasm had been crossed, and perhaps the moon was not as far as we had always believed it to be. Perhaps it had been sitting at the dinner table with us all along.

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Sam is Jack’s great ambassador to the world of language; the more Sam can pick up of some basic signs, perhaps Jack will pick those things up too, as it is clear that Jack wants to copy everything that his brother can do. Sam had been saying and simultaneously signing “please” for about three weeks before Jack joined in. He also signs “more” and (less consistenly) “baby” and “eat”. Sam’s own language acquisition has hit the explosion phase. He is saying new words every day now. The newest item yesterday was “bus”. It’s exciting to see Sam begin to construct partial sentences such as “Daddy go?” or “Bye to Daddy” and to follow simple commands. However, the command thing doesn’t always work out the way we plan…. the other day, he was carrying around a hunk of banana that he clearly was not going to eat. We asked him to go throw it away. He obediently toddled into the kitchen and returned empty handed. Only two days later did we discover the banana neatly placed in the pantry on top of some canned goods. Yuck!

The second exciting piece of news is that Jack is begining to walk! He’s not interested in the truck push-toy that Sam used during this phase. What he likes is the musical pusher that plays tunes when walked around the house. His gait is his own- he walks by lifting his whole leg from the hip in a very stiff-legged motion, stabilizing, and lifting the other. He hasn’t worked out the knees yet. The leg on the right is also turned outwards a bit, the foot pointing out rather than straight ahead. My feeling is, that’s great! PT and OT can work on the particulars with him- the motivation to walk is what matters most to us, and he’s got it.

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So excited to see where we go next!