My world with Kate is both small and huge at the same time. Kate doesn’t have many friends, she doesn’t go on regular ‘playdates’ or off to activities on her own – instead she goes to school where she mainly works one on one with adults, she has therapy with myself and adults, she has a respite worker, and she visits the hospital to be poked, prodded, examined, and intervened with. She spends a lot of her life waiting, being touched by others, being pushed in therapy, and waiting while I have dicussions about her with all of these people.
Because of Kate my world is complex and requires quick thinking, advocacy, patience, ability to communicate in many ‘languages’ (medical, therapeutic, educational etc.) – even to learn a new language (American Sign Language).
I take advantage of every opportunity to engage with the adults in her life be they medical case conferences about her, clinic appointments with one of her 15 different specialists, phone conversations with consulting medical specialists from around the world, scheduled therapy sessions, scheduled educational meetings (with teachers, EAs, LSTs, principal, Board representatives, placement and review committees), discussions about community therapeutic care, or even conversations with our local community centre to place her in a basic preschool swim program. Nothing in Kate’s life follows typical procedures or processes. Nothing is easy.
But sometimes what I find most advantageous are the unanticipated and unplanned ‘hallway meetings’.
Yesterday, I had to walk the length of CHEO from Kate’s afternoon auditory verbal therapy session to another wing of the hospital to sign paperwork from metabolics/genetics, and then head to the cafeteria for a casual meeting with CHEO public relations (more on the purpose of that meeting next week). In the course of that short walk, I met Dr.P (Kate’s metabolic/genetics physician) and we had a brief chat about Kate, how she is doing, recent symptoms, our planned meeting next week – then I ran into one of Kate’s formal social workers at CHEO from the neurology department (we are now with palliative care social work at Rogers House), we talked about Kate, how much she has grown, her diagnosis, how she’s feeling etc. Finally, I reached my first destination and signed the required paperwork, and went to the cafeteria for my meeting. As we sat down, Linda the cafeteria lady came over to say hello – Linda is a kitchen worker at CHEO who has a Deaf daughter and she knows ASL. She has struck up a little friendship with Kate and always comes over to say hello, asks how Kate is doing etc. I finished my meeting and made a quick errand up to the clinic area of CHEO where I ran into 2 of my favorite phlebotomists – these ladies can get blood like nobody’s business – they asked how Kate was doing and asked if they would be seeing her soon. When I arrived at my clinic destination, I ran into Dr.Major, Kate’s complex care pediatrician who we are overdue to have a clinic appointment with. She asked how Kate was doing, recent symptoms, how did our TO visit go, asked me to follow up about scheduling a clinic visit with her etc.
Without going on…I think you get the picture. Hallway conversations as spontaneous as they are, can be very effective.
– I got to touch base with Kate’s metabolic/genetic doctor about how Kate was doing (he hadn’t seen her in several months). We discussed the current research going into Kate’s disease. We touched base about a meeting he would be having about Kate with her doctors at Sick Kids. And we planned to have a clinic visit.
– I got to touch base with Kate’s complex care physician at CHEO, briefly mention some concerns about Kate and planned to make an appointment as soon as possible with her.
Effective and efficient.
Today, I had a very similar experience at Kate’s school. As they are getting used to Kate, and we are getting used to them getting used to Kate, there have a been a few hiccups along the way. The latest hiccup has caused a lot of stress in this house for the past 72 hours. I didn’t have time to meet today, but I let the principal know as I entered the school that I would like to meet. I walked Kate to class and ran into the principal in the hallway – and there we had an unplanned ‘hallway meeting’, and I think we got much more done than any other scheduled meeting I have had at Kate’s school. We were efficient (because it was unplanned and we both had places to be), it was effective (a credit to both of us), and because it was impromptu (not to say I hadn’t been giving things a lot of thought) the filters were off and I feel like we were very upfront with one another. We agreed to follow up ‘in clinic’ (i.e. her office with the other educational professionals involved with Kate).
I left feeling better. A hallway conversation can do that.