from cruise ship to dinghy

Slide1There’s a familiar saying that floats around the our world about education services for our kids.  It speaks directly to moving from the preschool to the elementary school experience – we call it jumping from a cruise ship to dinghy, because almost all the therapy support from the schools dries up after kindergarten.

I was preparing to speak as a mom about transitions Saturday at a CHILD-BRIGHT workshop.  Now ‘transitions’ is a term the health professional world loves, and it is a more evolved term about being discharged from one service and moving into another.  (I especially detest the word ‘discharged’ and I’m glad they are moving away from it – as it reminds me of nasal discharge or discharge of the vaginal kind, or being spit out at the side of the New Jersey Turnpike, a la Being John Malkovich).

The word ‘transitions’ to me means change.  The professionals tend to put their own provider-centred lens on that, assuming this means moving from one of their programs to another.  To me, families should be the ones identifying what transitions are important to them.  For instance, for me, moving from the end of the school year to summer is a horrible transition, as I have to dig around trying to find childcare for my son so I can go to work. (This year I failed at that).  Another transition would be our move to a new home earlier this summer.  My boy’s adulthood is impending, so I’ve run around, panicked, trying to find my son a family doctor who will see him as he turns 19.  Each school year brings a new transition, with a new teacher and new Educational Assistants in Aaron’s life.  These are the transitions that matter to me.

I’ve never been accused of being subtle.  To take the cruise ship to dinghy metaphor a bit further, I created this cheeky image (above) which I showed to the workshop audience, a group of researchers and health professionals.

For me, this is what services for families and children with disabilities looks like throughout the years.  The last image is yes, someone drowning – and that is what looming adulthood feels like.  As I told the audience, the most important part of their work is to get a deep realization about what it feels like to be a family member afloat at sea. Change will only happen once they feel what we feel.  As pediatrician and IHI co-founder Don Berwick says in his 2014 book of his keynote presentations called Promising Change:

…”(change will happen)…when we realize that our white coats and our dark suits are disguises…our next big step is not to just serve people but to join them.

Services in the system – from cruise ship to drowning.  Pause for a moment to join me to feel what that might feel like to a family who has a child with a disability.  When that feeling finally touches your heart, then we can start to talk about change.

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