When I was your age we went to the beach every summer. We went as a giant crew: your Great Grandparents, your Granddad’s brothers and sister and a whole bunch of cousins. We would stay at a house on the beach and spend our days in the ocean and our nights listening to your Great Granddaddy Jack sing songs on the deck under the stars.
I would skip in and out of the tide pools, looking for shells and snails. I would sit and build castles and play with my cousins and will the sun to stay up all day. I was little and the beach was a magical place to me.
|Yep, that’s me.|
5 years ago, the summer before you turned 3, we took you to the beach the only way we could manage it: we saved up and reserved a beachfront hotel room for 3 nights. We knew it wouldn’t be the same, but we were hoping to give you a piece of the magic that I had saved up in my memories.
From this picture you might almost think it was a pleasant experience.
It was not.
It is something that your Father and I refer to, even now, as one of our biggest missteps in parenting. You didn’t want any part of the trip; not the hotel, not the car ride or the room service food. You screamed when your toes touched the sand, screamed at the ocean waves, screamed at the other guests in the hotel on the elevator. We took you to an aquarium and paid the exorbitant entrance fee, only to walk right back to the car in less than 15 minutes. We considered coming home from the trip early but, since the nights were not refundable, we stuck out every last disappointing day.
I don’t know how you remember it, Danny, but for a long time that trip was a very difficult memory for me. I remember standing on the deck of our expensive hotel room before we checked out to head home and saying goodbye. To the beach. To my expectations.
I was a Mom and the beach was a painful place for us.
It was your Grandma, 2 years later, that convinced us to give it a go again.
It was much, much better without a doubt. For the next 3 years we would travel to the Delaware beaches with your Dad’s family; we grew from a family of 3 to a family of 4. We were able to enjoy ourselves more but we never braved an entire week and we never planned to do much beyond playing in the littlest waves and hanging out at the house. Your interest in the beach had a predictable decay; after the first day we had to work hard to keep you on the beach more than about 20 minutes. On the last day you were happy to load up the car and come back home.
You were a creature of routine and familiarity, and the beach was a complicated place for us.
This year, though. This year.
We almost didn’t go. Being an adult comes with a lot of boring circumstances and predicaments and this year had its fair share. We were ready to scrap the idea entirely but the beach is part of your summer routine now – you started asking about the “beach house” on January 1st, as soon as the ball dropped. We were out of ideas for how to make it happen when our dear family friends offered the opportunity to travel together. And though I needed to believe it could work, I was so nervous that it would be a total disaster that I wanted to say no.
Oh, but thank God I didn’t.
It got off to a somewhat interesting start, but you impressed me immediately with your ability to cope with a pretty intense series of turnarounds and changes. We met up with our friends and you immediately threw yourself into the mix, running and playing and causing chaos. From the first moment, everything was different.
When we got to the beach, you headed straight into the water with your friends. Just days into the trip you were building sandcastles and jumping into the cresting water like a pro.
Like someone who had been loving the wind and the waves their entire life.
Like someone who would never catch the eye of a passing stranger; like someone who cast Autism and all of its burdens out into the sea and watched it sink into the horizon.
Of course, as impressive as it ultimately was, it wasn’t worries about your behavior on the beach that made me want to bail on the trip at first. It was the idea of living for a full 7 days with another family, even another family that we loved. You are used to being able to run the show around here; that is not a particularly compatible situation to take into a house with 8 other people.
Every day brought a new opportunity for the disaster that never came. There were bad moments of course, for everyone, but there was always recovery. There was always grace and forgiveness and treats and snacks in the kitchen. There was understanding, compassion and friendship.
This is where I struggle for the words.
As of the writing of this letter, we have been home from the beach for nearly a month. I just haven’t been able to put my thoughts about the significance of this trip into words. Even as people have asked us about this vacation, I have struggled to find a way to convey how just a week in that place somehow changed our entire perspective as a family.
I’ve always considered myself to be a powerful advocate for you, Danny. I’ve made no secret of my willingness and desire to fight with you and for you; to leave no stone unturned when it comes to what you need to succeed and be happy. But…this trip forced me to realize that I am not always the believer that I claim to be.
Because when the offer was on the table and the beach trip was suddenly possible again, my first thought was “no”. I didn’t want our friends to see what our world really looked like. What our mornings and mid afternoons and evenings and bedtimes could really be.
For all of my words about putting you on a pedestal and wanting to give you the world…I spend a lot of time trying to hide you. For my own pride, and for yours, I will still choose to sit out a lot of the time. And that is humbling to realize. It is, in many ways, the ugliest thing about Autism: the path of least resistance will almost always sell you short. And we will choose it more than we should.
This trip forced me to allow you to be received into the arms of another family – friends of ours for nearly 2 decades. Friends who have been a part of your life since the day you were born but that I have kept at arms length for almost as long, afraid that the effort that it took to manage your behavior made me a worthless relationship for anyone to maintain.
These friends accepted every part of you; loved and respected you in the highs and the lows. Their children folded you easily into their pack, and being with them made you happier than I ever dared to hope you could be all those years ago when you screamed at the ocean from the balcony of an expensive hotel room.
And, once again, I was taught the lesson that has been in front of me everyday since our journey began: your life changes when mybehavior changes. Not the other way around.