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.
It’s been several eventful weeks for the boys since the last update.
Jack continues to work on his spoken and signed language. He’s recently picked up the sign for “sunshine”, “chicken,” “song/sing” and “again”. He is learning his signed alphabet and can very clearly make the hand-shapes for A, D, E, K, L, O, S, T, V, and W. He’s also using his spoken voice a bit more intentionally these days. He can now say (though it is not very intelligible) “ball”, “bye bye”, “hi”, “daddy”, and “boy”.
He had the opportunity to attend summer school for about six weeks in June/July, which just wrapped up this week. He just loves school- loves his teachers and friends, and especially the many opportunities for constructive play. Here are a few pictures that one of the nurses who accompanies him at school took for us, to document this wonderfully rich environment.
Heading off to school on the bus, like a big boy:
The sunny courtyard, complete with bubbles, water play, and a vegetable garden that the kids can tend:
Jack at song time, with his “twinkle twinkle little star” prop:
We are so sad to say goodbye to school for a little while, until classes resume on September 8th. During the hiatus, John and I are working on getting nursing coverage for an additional school day covered by Medicaid. I truly hope it will work out!
Sadly, Jack missed some school recently due to another hospitalization. Thankfully, this one was not nearly as dramatic as previous, recent hospitalizations, with no emergency surgeries required… though it did start with our first, panicky midnight ambulance ride. Our night nurse called us out of sleep concerned that Jack was having another seizure. We grabbed a phone and recorded the event so that a neurologist could see it. Jack was trembling hard, but I noticed very pronounced goosebumps, and he was responsive to us, so I wasn’t sure he was seizing. We didn’t want to chance it, so we rushed via ambulance to the emergency room. As soon as Jack got to the ER, a 103-degree fever spiked up, and an abnormal chest x-ray showed us the cause of the fevers- a minor pneumonia.
Though it was minor, 103-degree fevers sure are awful, and Jack was pretty sick there for a few days. He spent about three days recovering with lots of TLC from some of his old friends from his rehab phase. Lots of his new signs emerged during this period, while he didn’t have much else to do but practice. We also discovered a good way to beat the terror of a hospital stay… get a stuffed animal, and make it suffer through all the same procedures that the patient must suffer. Inhalers, stethoscopes, blood pressure readings, probes… any time someone came in to tend to Jack, we tended to his doggie immediately thereafter. A good strategy, I’d say! (At least it kept us busy.)
We’ve been out of the hospital now a little less than a week, and Jack is doing well. His current favorite activity is trying to hop, which he can’t do, as one side is much weaker and less coordinated than the other. So instead of hopping, he tends to look like superman going from a crouch to tip-toes- just barely lifting one foot off the ground to take off into the sky, one fist raised up high. We love it. It’s just such a Jack pose.
Sam is always at risk for missing out on lots of things because of the logistics that surround his brother’s care. So, this summer, I wanted to make a commitment to getting him on at least one trip to New Hampshire, where my parents have now moved. I spent weeks dreading a 9-hour journey with a toddler. But my little blond trooper did not disappoint! Here he is at the rest area enjoying a treat for his amazing behavior during the first leg of the journey.
We talked a lot about cars, diggers, trucks and big bridges during the drive, and we sang many hours of Sesame Street songs. He napped a little bit, but only really fussed during the last 15 minutes of the trip. It was great.
Once there, Sam got to go in a canoe, swim in a lake, eat chocolate cake, and just enjoy himself. He was able to have a long visit with my grandparents as well as with my folks. He’s still talking about the trip, and it’s easy to see why!
Here’s Sam on his first day of the trip, just after scaling a pretty intimidating “mountain” for a little guy:
And here’s Sam enjoying the lake. I especially love this picture as it gives a sense of what the world must look like to a two-year-old. A forest of big people!
Fall promises to be very busy for me at work, so I’m hopeful that the eventful spring and summer that we’ve had will mellow into a pretty peaceful fall. We’ll see!
I’m happy to have some good news to share. Jack is working with a speaking valve at last. I know everyone is eager to know just what it was like to hear his voice for the first time since he was a baby.
I invite you to share this moment with us! This video was taken halfway through his first valve trial at daycare with his speech therapist:
Generally, it takes trached children a while to get used to a speaking valve. It feels strange to them to have to force air up through the upper airway, past the vocal cords, to exhale. Their mouths and noses have been relatively unused for months, sometimes years. So, it was a great surprise to me when Jack acted as if nothing was different when we first put the valve on. We’d expected to try to get a five minute trial in. Instead, Jack kept it on – with perfect O2 levels – for 45 minutes! His speech therapists and nurses were thrilled.
Jack’s voice sounded rusty at first, but here’s what he sounded like just 24 hours later:
Now, two weeks after we started, Jack is able to tolerate around 4 hours at a time on his valve, and is beginning to try to make some verbal-ish babble sounds. He says “Daddy” by making the corresponding vowel noises; “Ah-ee!” He’s got a long, long way to go, but I think it’s clear that he understands the concept of speech, and understands that he may be able to obtain it himself.
There is another form of communication that Jack is beginning to really own, also, and that is ASL! He recently started morning preschool at Delaware School for the Deaf (“DSD”), two mornings a week. It took us about 2.5 months to get nursing, transportation, and (most importantly) the Medicaid funding necessary to make this happen. But we are SO, SO glad that it worked out in the end. Nurses N Kids is a great facility, and the therapies that Jack receives there are top-notch. However, it’s not an educational facility, and there aren’t many peers who have similar abilities to Jack in his room at the day care. We felt it was important to find Jack a rich learning environment with other children, and DSD has more than filled that role. The classroom is beautiful, the spoken language teachers are amazing and the deaf teachers / ASL language models are so kind, and so patient (with me as well as my boy), that it’s no surprise that Jack came home with his communication book that the teachers put together, pointed out his language model and showed me how to sign his name!
I hope to write a full entry all about Jack’s experiences at DSD soon.
However, this entry wouldn’t be complete if I didn’t let everyone know that Sam, also, is making some major breakthroughs. Yesterday, he was eating an English muffin pizza for dinner (a favorite), when Jack walked up to his high chair and peeked over the top, trying to get his attention. Sam looked down and very clearly said “No, Jack- I’m eating pizza!” All of a sudden- out of nowhere- these sentences keep pouring out: “Put the lid on it.” “I wanna hold it.” “Jack Jack is under the table.” Also, he seems to have learned his alphabet and can count to eleven:
(For those who find Toddlerish a bit hard to understand, the video picks up with Sam reciting the alphabet at about letter G. After I ask him to start again, he gets to about letter V and then looks out the window and says “Jack Ambulance!” since the ambulance was at that point pulling into the driveway to bring Jack home. He then counts up to eleven with a little prompting from Mom.)
Saying that I’m proud of Sam would be pretty much the understatement of the year. This little dude is curious, empathetic, and willful as all get-out. He’s also excited about Jack’s voice, and he often comments on it. Because we make a big deal out of Jack’s valve whenever it goes on, Sam complains that he wants one too. We try to explain that Sam doesn’t need one because he already can use his voice, but Sam seems puzzled by all of this. I think we finally made a little breakthrough today. We told him that Jack needs the valve so that he can use his voice, but that Sam can always use his voice- which is in his neck. I hummed while Sam held his hand on my throat to feel the vibration, and then he did the same on himself. I have no idea what does and doesn’t compute for a two-year-old, but he seemed satisfied.
There is much more to share, but time is short. I’ll be sure to update soon with more information about Jack’s school and recent doctor visits. As always, thanks for sharing the road with us.
Jack had another clean MRI of the brain this week, and a productive follow up visit with his neurosurgeon, Dr. Piatt. Monday will bring another follow up with Oncology, and we’ll decide how much monitoring Jack is going to need as we look to the future.
Since my last update, things have been going really well for Jack.
Jack has learned more than 25 signs, and is communicating with us nicely through gesture, some cooing vocalizations, and sign.
We had a great visit with pulmonology back in March, and we are now un-cuffing Jack’s trach several times a day for several hours to see how he tolerates it. if he tolerates it well for a few months, we may be able to fit him with a speaking (Passey-Muir) valve this summer! It will be so wonderful to hear his voice again. I have dreams in which I hear his laughter. I really long for that sound. Every day brings us a little closer, I think. All signs are pointing toward a successful move to a speaking valve; although he had many colds and aspiration close-calls this winter, Jack did not end up with chronic pneumonias– so his lungs have remained healthy despite the challenges that he faces. When you stop to think about that, it’s pretty amazing.
Although we hope for a successful move to a speaking valve, we cannot be certain that this will happen, and so we have been very involved in trying to get Jack enrolled at the Delaware School for the Deaf’s pre-school program with the hope of immersing him more fully in sign language. Although Jack has only a unilateral (one-sided) loss of hearing he does qualify for services, which is a great benefit to our family. We hope that Jack will be able to acquire language… not just the scattered signs that his mother has been able to pick up here and there. These services will also help us to learn what Jack needs from the family in order to help him to maximize the hearing that he does have. Once we finally get this going, the sign language scaffold will only strengthen Jack’s little brain– whether or not he is able to tolerate a speaking valve in the future. It’s not been too easy to get this going, however. Jack needs to be in the presence of someone who is trained in his care 100% of the time, which means that on preschool days his care will have to be split between a home-care nurse and his regular nurse-run day care center… a thing that is proving a bit harder to wrangle with Medicaid than it really should be. Once we get the final doctors’ notes, I think we will be alright. Fingers crossed!
And… man oh man this kid can walk! Here’s a video that gives you a sense of how much movement he’s now able to achieve on his own. He’s still unsteady, but he gains confidence every day, and we sure are proud of him.
Although there is so much good news, I should temper this with a bit of reality. Jack has been receiving e-stim therapies on his face and on his throat for about 6 months, but we have not really seen any improvement in his swallow or his ability to keep his saliva from aspirating into his trach. He remains extremely vulnerable to the threat of aspiration, particularly when he vomits. Over the last few months, he’s had some trouble with this. His nutritional requirements have increased, meaning that the volume of food that his stomach must handle is greater, and the rate at which his food pump delivers food to his stomach has also increased. We’ve seen some frightening night-vomiting, and some in the morning. We are still trying to find the right balance between safety, his need for mobility, and nutritional needs. But I think we will get there.
Now… Sam! Sam is doing great, and is adding simple sentences like “Shut the door”, or “Dinner is too hot” to his ever-expanding repertoire. He loves signing also, though he isn’t very consistent with how he uses it. He can’t say the “J’ or the “S” sound at the beginning of words, so we hear a lot about the adventures of ” ‘Gack’ and ‘Nam’. He’s become extremely willful! Now that language, mobility, and feeding himself are all in the bag, it’s become clear to him that his parents pretty much exist to thwart his further explorations of the world. So… we may have entered the Terrible Twos a bit early.
But, Sam is never intentionally rough or mean to his brother, whom he loves very much, and they play together pretty well. Here’s a video in which Jack and Sam each use their own modes of communication to tell me about their toy octopus.
Looking forward to more fun in the months ahead!