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Friday, September 23, 2016

Advanced "Welcome to Holland"

I had a rough day yesterday while Janey was at school.  It had nothing to do with her---it involved worry and doctors that don't call back and midlife frustrations and general malaise and so on and so on.  She came home and lifted my spirits immensely.  She had such delight in the everyday afternoon and evening activities---having some cheese as a snack, walking to the ice cream store, hearing music on the way back and dancing, seeing Daddy come home, getting some Chinese food for dinner---it was great.  She even made us laugh with a new phrase.  She asked Tony for a ride and he said "Sure!" and she said "Are you joking me?"  She was a delight.

And for a brief moment last night, as I thought about it all, I was thinking how although she is very different than most 12 year old girls, there are many parts of who she is that are lovely in their differences.  She loves us wholeheartedly.  When Tony got her off the bus instead of me on Wednesday, upon seeing me when I got home she gave me a huge hug, just thrilled to see me again.  She has fun with very small pleasures---a song she likes, a trip to the ice cream store or McDonalds, a video that she's seen over and over.  She doesn't long for what she doesn't have---she isn't asking for Ugg boots or a North Face jacket or whatever else is in right now (and those might be totally out---I don't know, and that's part of it!)  For a minute, I was thinking "it's a different life, but it's a good life!"

Then it hit me---wasn't that awfully like what "Welcome to Holland" says?  Welcome to Holland--a well meant story written by a kind and caring mother about her specific circumstances that has turned into something tossed to every special needs parents as a way of saying "Quit all your griping!"  Of course I am being a little sarcastic there, but that's often what it feels like, like a way those who have never lived the life can say "What's the problem?  It's not the same as most lives, but it's just as wonderful in its own way!"

And I felt angry, really angry.  I felt angry for many reasons.  The big one was that having an afternoon like yesterday with Janey wasn't something that just happened.  It has taken many years to get to where we sometimes are today.  It has taken the dedication of many people---Tony and me, yes, but also many other people---all the people in the Boston Public Schools who have worked with Janey over many years (and they are an amazing bunch of people), the doctors and psychiatrists who have helped us find what seems like the right combination of medications, Janey's brothers, the people in the Hyde Park community like our neighbors and store workers who are happy and excited to see Janey no matter how she acts, my friends, both those I know in person and those I have met virtually, who give me ideas and support and love, the wider autism community who has shared their experiences and advice----it's taken a huge amount of people and work and knowledge to get Janey to where she can have an afternoon like she did.  It didn't happen just by somehow arriving in the wrong country and accepting that I was in Holland and not Italy.

We like feel good stories.  We like happy endings.  What we don't always like is hearing that it takes work, it takes money, it takes resources, it takes tears and false starts and dead ends and heartbreak and sweat and dedication and so much more to get to those happy endings.  And they aren't endings, really.  I've read about something called the "end-of-history illusion".  We as humans often feel like the stage we are at right now is the evolved, end stage.  We see work and change and developments in the past, but we sort of assume the future will be steady, that we have done the work and now we just sit back and reap the benefits, and that is of course not true.  The future will hold as much work and as many changes as the past, most likely.

Our society is set up for people to travel to Italy, not Holland.  A trip to the special needs world is not just a different trip, it's one where none of the guide books help you, one where you have no hotel reservations, one where before and after the wonderful moments you might have, there are many times of confusion, frustration, fear and despair.  There are kind people in Holland, amazing people who do more than you would ever expect to help you, there are beautiful sights, but don't let anyone tell you that it's just another form of Italy.  It's not.

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