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Jul 31 2013

When My Daughter is More Than Her Autism

By at 9:56 am

merry-go-roundWhen you are raising a child with special needs, it often feels like the diagnosis takes over your whole life.  My daughter has autism and there isn’t a day and often not an hour or a minute where autism doesn’t occupy center stage in our lives.

It’s there, everywhere you go,  throwing up hurdles and roadblocks, preventing joy, happiness, and discovery and sending your senses into overdrive at the drop of a hat.  In those brief moments that you are not dealing with it, you are likely talking someone’s ear off about it or blogging about it.

For myself I find that any given day with my daughter involves a lot of strategizing on my part.  I spend my day anticipating her day, trying to foresee where the trouble spots might be, what might be difficult for her and what might send her into sensory and/or emotional overload.  It involves thinking ahead a lot about where we are going, anticipating where the hurdles might be, and trying to find a way to avoid them or at least anticipate them so I can prepare her for it and try to minimize the chance that she will be overstimulated enough to lose control of her emotions and behavior and sink into meltdown territory.   

Doing this not only takes up a lot of room in one’s life, but often makes it challenging to just enjoy *anything* with your child, because you are always thinking about the next hurdle, the next challenge, the next trigger.  You end up so fixated on the autism that it is tough to remember that your child is more than just a sum total of a bunch of issues and behaviors and is also just a kid experiencing the world for whatever that may mean.

It’s great when something can remind you that there is something more than autism.

For me, that reminder came the other day when my husband and I took our daughter to Kennywood Park–in my opinion, one of the best amusement parks in America.  Although corporate owned for the past six years,  Kennywood still retains the homey feel of the park which was family owned and operated for over a century. Growing up in Pittsburgh as I did, Kennywood is a Pittsburgh institution and I wanted to share a place where I experienced so many great memories with my daughter. She was of course excited to go and especially looking forward to the three water rides in the park. Still, as much fun as a trip to the amusement park is for any child, for a child with autism it can be a land mine. The sights, sounds, smells, hot weather, and waiting in lots of lines, not to mention the sugar and junk food, are all triggers for her.

My husband and I agreed, as we always do on days where we go to places where there are so many triggers, we will be ruled by quality and not quantity. What matters is that our daughter has a good day, not that she ride every single ride. We would let hers, rather than our own, expectations rule the day.

So, we started off with the merry-go-round, went to the paratroopers, the kangaroo jump, and eventually the water rides. The lines took a while and waiting was tough. I watched her decompress by scripting and flapping her arms and I watched other kids and adults stare at her, comfortable doing so since my daughter didn’t make eye contact with them. I watched their glances and a few whispers as my tall-for-her-age daughter with b-cups lovingly clung to her stuffed seahorse and tried to decompress by kissing and hugging both her father and I repeatedly. I watched those same parents and kids look away the few times my glance caught their own.

Autism was there with us at Kennywood Park, as it always is.

But, when my daughter stepped on all those rides, I saw something else. As she turned round and round or flew up high or got drenched with water, I saw a girl, enjoying the thrills and freedom that a day at the amusement park brings to a kid. As she spun around laughing her head off with her dad on the paratroopers or on the kangaroo jumps with me, the first thing I saw wasn’t autism, but just a kid enjoying the thrills, happiness, and laughter of an amusement park. For that brief moment in time, she was just a kid.

Like any other.

And although I know already that my daughter is more than the sum total of her autism, it’s great that life can give us those reminders.

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