On the deck, waiting for the school bus.  Julia has taken it home two days this week and it has been ok.  So, yes, I have seen at least one kid move away from her when she gets on — we are not going to change the world.  We, she and I, keep talking and she has a few allys to stand up for her.

For the first time ever, Julia has a great many feelings about school ending.  AND school closes in two weeks.  She walked around the school the other day taking pictures with her iPad and then told me about them when she got home.  She has been crabby and grumpy.  She is telling me that she is excited about middle school but also that she will miss people.  Julia is inhabiting so much more of her world than she did a few years ago, so much more than last year.  (A side note: When Julia’s special ed teacher ask her about being crabby, Julia told her that she was crabby because of her period.  Her period actually ended on her crabby day but what surprises me is that she said that.  I have not talked about hormones effecting behavior either seriously or in jest.  I wonder where she heard it.  And this, just another sign of her being in her world.)

I mulched another part of the front garden for most of the day.  Did three trips to the mulch site — city owned and managed — and loaded up my plastic containers and black leaf bags.  I can only take as much as I can hold in my trunk.  If I use the back of the car, it stinks for most of the summer.  I’ve been doing one or two trips a day and gotten tired and sore.  Evidently the gardening chops are coming back.  Whew.

Much later.  Night now. Sitting outside on the deck in the dark.  It is still delightful!  My neighborhood is as quiet as a small city neighborhood can be.  People walking dogs chatting on phones or walking themselves with partners or friends and doing the same live.  Traffic from the surrounding busier streets and sirens going to our nearby hospitals — sirens and ambulances have such powers of remembrance.  So this is not the country like I imagine my sister’s porch on her farm in Virginia.  This is not a mythical fire escape in Brooklyn, but there are a few stars above, enough to wish on, and the leaves are finally thick enough to muffle the outside world.  I am pretty happy sitting here tapping away.

So, sitting on my deck in the dark tapping away is something that I’ve often longed to do but have kept myself from doing.  All the is conventional in me knows that my mother would have disapproved, and probably David would have disapproved.  And once the mosquitoes come out in full force, I will need no one’s disapproval to send me inside.  But for tonight, for right now, I am grateful for this delicious night.  I am grateful to not care if I am seen and thought odd.  I am grateful for stars and leaves and fresh spread mulch.  I am just grateful.

I read this lovely blog piece this morning “disney das” (http://adiaryofamom.wordpress.com/2014/05/29/disney-das/) — a review on the revised program at Disney for access for people with challenges.  I thought it was pretty evenly written, no rants and few complaints.  I agree with most of it.  Like that writer, Julia and I managed the theme parks pretty well at Christmas.  We were very laid back and Julia is very able to understand that we could sign up for a ride and then come back later, but like the writer, I need to acknowledge that the current policy would have been a night mare when we were there a few years ago.  And I think about those in our position a few years ago, those who will never be in as good a position as we were a few years ago, and wonder if that “happiest-place-on-earth” will even be a possibly for them.  There are always a few comments to that type of blog entry that show a complete lack of understanding of the family that have members with challenges.  The writer was accused of wanting a “better experience” for her children than is possible for other children and of taking more than her fair share of rides when a child with autism is skipped to the front of a long line.  One commenter — parent of a child with a “real” disability which translates to a physical disability — expressed his/her disapproval that the rise of autism diagnoses is the real reason for the change of policy.  If one in  68 kids gets a diagnosis, might that translate to one in 68 disney-visiting families asking for special treatment?  And how is that “fair” to those with “real” disabilities?

I admit to the usual initial feelings of anger and frustration towards these commentors but as I read on, it was the lack of understanding, the lack of generosity and the scarcity thinking of the writers that breaks my heart.  There was unwillingness to stand in the shoes of another.  Selfishness and utter and complete self-absorption.  Most of all, it is a lack of imagination.

Visiting popular theme parks can take planning and strategy for all families, but how many families with typical members plan that same way when they go grocery shopping or holiday visiting to grandparents or to the movies or a sibling’s school play.  How many parents need to scrutinize childcare providers for their 15 year olds or teach their children about safely crossing streets every day for three years.  And all of this kind of planning is easy-peasy compared to the planning that some parents engage in.  And so, that GAC (Guest Assistance Card) at Disney was a gift to those families.  For once, a family could indulge in the pleasures of an amusement park the same way that typical families go food shopping.  I guess to that extent the situations of families with typical members and those with members with disabilities changed places.  It was the typical families who needed to engage in strategy to make their way through possible melt downs  on long lines — still the typical four year old’s melt down is unremarkable compared to a nine year old on the spectrum tantruming.  The families with kids with disabilities was free to indulge in delights the way typical families might go from store to store in a shopping mall — almost unimaginable for many of us.

How to open the hearts of those who feel the pie is too small for pieces for all?  There is enough!  How to build empathy, compassion and community?  Even at a theme park and on a school bus.  Surely, this is what we all need — those who would begrudge Julia and I skipping to the front of the line for “It’s a small world” and me who can easily conjure up a dozen uncomfortable experiences to “help” the complainers understand my world.

One thought on “fair

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