A Week At The Beach – with Autism

Well, our family of three just returned from our annual week at Bethany Beach. This year we were blessed with the most beautiful, spacious house a mere block from the beach and boardwalk. Other family members originally planned on joining and pitched in to help us afford this glorious rental, but then couldn’t make it after all, leaving us with a gorgeous five-bedroom home all to ourselves. The house was immaculate, with beautiful indoor and outdoor spaces – spacious screened-in porch, rooftop deck, comfortable beds, flat-screen TVs in all of the bedrooms – all of the little details were thought of – they even had Williams-Sonoma kitchenware enough for an entire catered dinner party of 12 for God’s sake! What could be better? It turns out a lot of things.

I know I risk sounding hugely ungrateful – and please, don’t get me wrong, I have major gratitude for being able to spend this week at the beach – we had so many wonderful moments. Eva running in the water, digging in the sand, exploring seashells, playing on the deck, gazing at the stars on calm, quiet, sea-scented evenings. But I am also going to confess that much of this “vacation” week was absolute hell for me. The first few days it was just Eva and me; for work/family reasons my husband couldn’t join us until mid-week. Eva and me. All alone in a four-hour, traffic-filled car ride to the Eastern Shore. Eva and me. Joined at the hip to go anywhere or do anything. This is where it gets tough.

I love my beautiful 5-year-old daughter with high-functioning autism and PDA behavioral profile (see http://www.pdasociety.org.uk for more info) more than anything in the whole world. No offense to my husband, but before she was born I honestly never knew a love like this could exist on earth. It is so intense it is unnerving at times, and as many parents will attest, terrifying to love someone so much. It makes you incredibly vulnerable, like your heart beating outside of your body. Having said that, how can I possibly explain how tortuous my time with her can feel at times? Yes, tortuous. Which makes me feel incredibly sad and guilty. But it’s the truth sometimes. In short, when she is dysregulated – which is a significant amount of the time, especially when we are doing exciting things out of routine, such as traveling – I am a mess. I have suffered from Generalized Anxiety Disorder pretty much my whole life, but my anxiety has reached new heights in the past few years in the context of Eva’s neurodevelopmental issues and behavioral problems, i.e. autism. A child whose moods do not ebb and flow like the tide, but escalate unpredictably like the waves coming towards you as you wade out into the ocean. You might begin to feel relaxed, enjoying the cool surf when – WHAM! – an unexpectedly large crest loops over you, crashing you to the ground. A child who wakes up and within seconds begins obsessively playing inside an imaginary world that you must join and understand, or the penalty is a mini-meltdown of screaming, throwing things, banging her fists on her head – or you. A child whose nervous system is so fragile, and whose sensory diet is so strict that more just one activity outside the house a day can push her to the limit. A child who is both interested in other people, wants to play with others but at the same time feels threatened by faces and frequently misinterprets the actions of others, which sometimes resulting in lashing out and alienating the very people she wants to connect with. I imagine her experience of the world much of the time is a bit like being Alice in Wonderland. And that makes me grieve for her, as well as myself. But most of the time I am able to focus on the positive, when she is in her routine and more regulated, I think “we can get through this,” “she will be okay” and marvel at her incredibly creativity and loving heart.

At the beach, though, tied to her 24/7, I started to feel a bit trapped with little recourse. I couldn’t walk to the bookstore or go get coffee without taking her along, which could of course sabotage her sensory diet for the entire day. Everything was already so heightened for her just by virtue of the excitement of traveling. So we spent much of our time the first few days indoors, waiting for my husband. We ordered in, and she played in all of the bedrooms with her stuffed animals, insisting on me making all of the beds so that she and her “pets” could try out all of the rooms. Our few sojourns to the beach (in the middle of unseasonably cold and windy weather I should add) ended roughly, once with Eva becoming sensory overloaded and tossing sand over other children’s heads and another time ending in wracked sobs after a shell she had been holding was dropped and swept away by the tide. Nighttimes were equally difficult, with our usual bedtime routine completely disrupted by new surroundings, and rough play eventually dissolving into frustration and tears. By the time my husband joined us, the weather had moderately improved and the sun began to come out. But my anxiety was so heightened by that time that I found it difficult to enjoy our family time on the beach, so worried about whether Eva would become overwhelmed and perhaps act out with other children. Then there was the slime incident, during which Eva got slime all over the rental house’s expensive outdoor furniture and upholstery – that was partially my fault for giving it to her in the first place. We are still waiting to see if our rental insurance will cover it.

In the end, driving home yesterday was somewhat of a relief. Eva did amazing, playing dutifully on the iPad, happily engaged the whole time. And traffic was merciful this time. It was a sparkling, sunny day, the weather had turned, and we were headed in the right direction. Eva told me she was sad to leave the beach and that she had had a good time – she always describes this week as her favorite part of the year – and she asked me, “Did you like the beach?” I paused for a second, and knowing the joy she had gotten from trip, replied, “I did, honey. I had a great time.”