Thursday, June 23, 2011

Shiny Happy People

The last couple of weeks on Facebook I have been enjoying seeing photos of friends' kids going to prom, graduating high school, finishing first years of college, even graduating pre-school (yes, there is such a thing now....don't get me started). In short, this time of year, the end of the proverbial school year (at least for those in the US, we Europeans have another month to go) is a time of transitions and a lot of achievement.  It is the time when we move onto new phases in our life, the next grade, the next step or a total change.  I still remember my own high school graduation, the weeks leading up to it were such a whirlwind, the end of an era, in some ways the end of childhood and a time when all possibilities were completely open.  I had a driver's license but wasn't yet in the driver's seat of my own life, so to speak.  Up until that point my parents, and particularly my dad were steering the ship.  That summer between high school and the first year of college was fantastic for me.  The world was there for the taking and although I had the feeling of freedom at other times throughout my life, I didn't have it in such unabashed abundance as I did that summer between high school and college.  I spent most of the entire summer on the Monongahela River with friends from high school, boating, swimming, hanging out, laughing and without a care in the world.  We were all taking the next step of our lives, together but separately and somehow that summer felt like both the beginning and the end of something and I enjoyed it with reckless abandon.

Now that I am all grown up with a daughter of my own, I of course want those same things for her. I so much want her to have great friends and a world of possibilities open to her.  I want her to have many of those kinds of summers spent, laying at the bank of a river, looking up at lightening bugs, talking about her dreams for the future, driving with the top down, music blaring.   Maya's autism doesn't define her but over the last  last few weeks when I have been looking at beautiful young women and men at their proms and graduations, part of me can't help but wonder if that is all in Maya's future?  Maya is very different from these young men and women I see in these photos, many of whom look an awful lot like the kids I went to high school with.  I am pretty sure she will still carry her resemblance to me into adolescence but I wonder if she will be able to experience the fun, the freedom and the wonder of being on the cusp of adulthood with all doors open to her?

I have said it many times before but for me as the parent of a child on the autistic spectrum it is somehow easier not to think too long term.  We think of this school year, the months ahead and try to stay in the moment, helping and focusing on each day, hoping that all those tiny, minuscule pieces will take shape into a big picture.  Still there are times when I can't help myself but to think of the longer road ahead.  Will she go to the prom (for the record I didn't, and I am fine), but will she have a free range of choices open to her, and  be bound only by her own desires and ambitions?  Or will her limitations define her freedoms and choices?  At the moment I would just be happy if she would start reading.

This week Maya has been at camp which is organized by her school.  It is an annual event where the kids go to a vacation park in the area together with school staff for 5 days.  For us, this is the first time that Leo and I have both been separated from Maya for this long a period.  We have spent nights away from her before and Leo and I have separately been away from home for a week at a time, but this is the first time she is away from both of us for so long.  She is doing great there, and having a fantastic time like I anticipated.  It is harder for me to be away from her than for her to be away from us.  But that is as it should be.

Today on the way into work, as I was watching the trees and then the sights of the city of Amsterdam pass by quickly on the tram, I was thinking about all I have learned from this beautiful, wonderful, happy little creature.  And while I know that she is much more than the sum of her autistic parts, I do think her autism has helped me to learn some beautiful truths that if she were a typically developing child I might only see through my peripheral vision.

My daughter has one of the sunniest dispositions of anyone I have ever met.  She is a caring, sweet, affectionate child who will always make the best of the circumstances she is in.  She is a child that knows how to make the most of a moment, to really live in it and she can find joy in the tiniest of things.  And because she can find it there, I also find joy in thousands of little moments with her.  Watching her play with her stuffed animals and telling them how proud she is of them and comforting them when she pretends they are scared or sad or bringing them all downstairs and putting them in a circle on the living room floor and having a story time with them.

We have all in some way been influenced by our own upbringing and bring that into our parenting either voluntarily or involuntarily.  I certainly recognize my parents in some of my parenting and there are times when something comes out of my mouth and I am taken aback because it is my mother or my father.  My parents were loving people but they, like many people of their generation had a tough time showing affection.  As a kid I felt starved for affection, particularly from my mother.  I knew she loved me  but once in a while I longed for her to make the display.  For my grandmother that always came so easy, she hugged and kissed us freely and I can still feel the touch of her delicate thumb stroking my hand as she held my hand in hers.  I can still feel the touch of my dad's tickle on my face as he used to do when he woke me up for school.  I always wanted my mom to grab my hand or put her arm around me for no reason at all, rather than just to keep me safe from traffic or to steer me in a direction.  She showed me her love in other ways but when I had Maya I was determined not to make her want for that and I have never held back any affection from her.   And because of that she is demonstrative too.  And as child on the autistic spectrum, Maya indeed has difficulty reading social cues but if you ask her how does she show someone she loves them she says (and often just does it), by holding hands or tickling someone's face or giving them a kiss.  And she does that freely, it's second nature to her.  She is a comforter.  On Monday when the bus was leaving for camp one of the little girls in Maya's class was crying her eyes out for her mom, having a little bout of separation anxiety and seeing her mom waving frantically at her was upsetting her more.  Maya was sitting in back of this little girl and she was really wailing at one point.  Maya got out of her seat, opened her backpack, took a stuffed animal out of it and walked one seat in front.  She patted the little girl on the head and stroked her hair and when the little girl looked to see who was touching her, Maya hugged her, sat down next to her and held her hand.  Maya may have trouble learning lots of things but she knows how to recognize when someone is sad and her automatic instinct is to try and give comfort.  My girl is a nurturer.  

Also she has amazing endurance.  The world is a scary place for her, she often has to fight her own natural instincts and urges in order to do things as she is expected to.  Each time she listens, each time she follows directions, each time she does what she is told, each time she looks someone in the eye when she talks to them, each time she sits in a circle and participates with other kids, each time she allows all eyes to be upon her without hiding under the table she is going against her own natural urges and instincts.  It's a battle of sorts and she wages war on it every day.  Many neurotypical people I know simply just accept and acquiesce those parts of themselves they wish they could change and say things like, I know I should be more (or less) X, but that's just me.  My daughter wages that battle every day, turning away from her own nature and fighting her way into her own developmental milestones.  If that is not endurance, I don't know what is. 

She has taught me a deeper meaning of patience and the true power that comes with building someone up rather than tearing them down.  With a kid like Maya everything has to be done in her own time.  She does not respond well to pressure, particularly time pressure.  Actually putting pressure on her has the opposite effect.  She needs the time and the room in order to do what is expected of her.  I've learned that it is better to just give her the space she needs to understand what is expected of her and to encourage her when she is insecure than to put pressure on her ('we need to go now').  This is not always easy for me because let's face it, whether we like it or not, life is at least somewhat about time and deadlines.  And I don't succeed 100% of the time.  Some days I am less patient and tolerant and  just want to 'get there.' Some days I lose my patience with her and do exactly what I know is counterproductive.  But a lot of times I don't, a lot of times I encourage Maya's success by giving her that space, by going against my own nature so that she can succeed and have the confidence that comes through doing.  

So, I don't know if she will ever be one of those shiny happy kids that wins MVP or is Prom Queen or graduates with Honors or gets a fantastic job.  I don't know if she will ever experience the freedom of young adulthood or be able to bask in a world of possibilities open to her.  But my daughter shines as brightly as any child and she has wonderful gifts within her.

That is something to be enormously proud of and I am.


  1. This is such a beautiful love letter to your daughter and such a testament to her character. Thank you for sharing her with us. I think the world is a better place because children like Maya are in it.

    I think all parents share your worries and fears about their children's futures, just perhaps to a lesser degree or for different reasons. Part of our job is parents is to accept and love our children as they are and to help them accept and love themselves. You are doing just that, and it's beautiful to see.

    My feeling is, if you continue to do that, she will naturally continue to push the boundaries of her limitations and to do things she never thought she could do (and maybe that you never thought she could do). And because she knows you accept her, and she accepts herself, she will push those boundaries, not in a stressful, self-deprecating way, but in an empowering way.

    She's still so young, and the world really is her oyster. Make sure she knows that, and you can't go wrong. :)

  2. Beautiful to read how sweet she is with other children and comforting the kid in the buss. Had to cry a little here :) She is amazing and lots of beautiful things will come on her way. Big hugs, Sandra Jadi.