-
Daemons, souls and family vacations
- Aug 1, 2009 at 7:46 PM
- By
- Comments (12) Total Views (391) Everyone can see this journal post.
I watched my little girl play on the beach. In a way, I was captive, unable to join her near the water, burdened by a heavy protective boot. I had surgery on my foot just two days before we left for Florida, and my foot was still bandaged, with a pin sticking out of the toe that I had broken. I was given strict orders to keep it clean and dry in order to prevent any infection from settling in. Those are tough orders to follow when we were making nearly daily visits to the beach. It was especially hard because it forced me to become a spectator of my own family vacation.
While my husband played in the waves with my older daughter and my in-laws, Lillian, my five-year old daughter, played on the shore. Sometimes she would take a tentative step toward the water and giggle as a wave washed over her feet, and she would jump a few steps back toward the safety of the beach. Generally, though, she was absorbed in the debris on the beach--mostly the seaweed that had washed up on the shore. She seemed to feel that her purpose was to return it to the water, and made many fruitless efforts to drop it back in, only to watch it wash back to her feet.
There were a few times when she would run the length of our section of beach (it was divided by some sand bags strategically placed about every fifty yards, making 'T's along the beach). Absorbed in her play, she would almost literally run into another person or family who was out to enjoy the sun and sand. At times, she would try to start a conversation. Her attempts were hindered by a limited vocabulary and budding but awkward interest in social interactions. Like many children with autism who are somewhat verbal, she tends toward repetition and fixates on one thing at a time. She would approach an elderly woman and gleefully show a handful of seaweed and point toward the water or dance about in front of another child, thrusting the seaweed in the other child's face, assuming that he or she would share the same interest. Sometimes, it was painful to watch. She would invariably be snubbed by the child, who doesn't know what to make of this jubilant child who had nothing to show for her excitement other than the slimy green mass that had been rejected by the gulf. The elderly women would usually be enchanted. They were happy to see a beautiful, happy child who just wanted to share her joy with them. But they had great difficulty understanding her--due in part to Lillian's unusual cadence of speech and the crashing of the waves. I could see from where I sat that the women would bend down toward her and listen attentively. Then they would look confused, still smiling, and look around for this little urchin's parents. Then I'd hobble toward them and claim her, thanking them for being so kind. I admit that I loved watching Lillian gravitate toward the sweet grandmotherly types who were, for the most part, charmed by her and unfazed by her uniqueness.
What struck me most, though, while watching the distance between us increase, was the sort of tugging at my heart that was at times painful. Normally, I'd follow Lillian on her adventures, whether my presence was acknowledged or even remotely desired. On these days, however, I was unable to keep up with her, even from a distance, with any more than a watchful eye. The farther away from me she moved, the stronger the tug. I had read the "His Dark Materials" Trilogy--the one that started with The Golden Compass--and found myself likening what I was feeling with what the heroine had felt when her daemon was being torn from her. It felt like a part of my soul was being torn from me.
A part of it was fear--knowing that she was out of earshot and should anything have happened, I'd have been too far away and too clumsy to have been able to reach her with any speed. A part of it was that feeling that was all too familiar to me, but hadn't cropped up in a while--the feeling of being completely isolated from Lillian's world. She was in a place where she was completely absorbed in her own mind and activity. We had worked so hard on her social awareness and skills that in everyday life, she didn't evaporate from the atmosphere, becoming something of a solid hologram, physically there but untouchable--a strange way to describe it, but I am sometimes at a loss to explain what it is to have a child with autism other than to put it in those terms. It is as if we are suddenly in different planes of consciousness. I can see her, and when she is close enough, I can touch her. But I can't reach her. It's like one of us is in a bubble. I'm just not sure if it is her, or me--if she has shut out the whole world or if I have been encapsulated and shelved from her awareness.
So I'd watch, ready to scream for help if anyone tried to take her, or in case she suddenly developed a desire to explore the undulating waters. The feeling of detachedness was nearly overwhelming, aided by the deafening crash of the waves and the hypnotic cry of the seagulls. Had we spent more than ninety minutes at the beach, I just might have gone stark-raving mad. It is so strange how the senses are distorted by the atmosphere of the beach--the way that voices that are close to you seem to float around from every direction. Add to that the heat and humidity, the breezes, the sounds of waves crashing, seagulls crying, the squeals of laughter that all seem to swirl and whirl around and blend together. At least, that is the impression I had from my position, perched on the edge of my beach chair, passively watching the activity around me. Under normal circumstances, of course, a day at the beach would have been, well, a day at the beach. But on this trip, I felt something like Jimmy Stewart in "The Rear Window"--wanting to be in the action but confined to the role of spectator, and in that role I waited with the suspense that one feels while watching a Hitchcock movie.
Happily, none of the dangers that worried me came to pass. The worst part of the time spent on the beach was that my older daughter suffered a minor sun-burn around her midriff--where I had neglected to apply sunscreen because her two piece was supposed to cover it. I hadn't taken into account that the waves would rearrange her suit some. But Lillian, sweet and curious Lillian. . . Lillian with some verbal skills and in the process of being trained to take an interest in other people . . . Lillian who still, and probably forever, will bear the characteristics and behaviors of an individual with autism. . . my Lillian had a wonderful time exploring the shores of St. Petersburg Beach. She probably saw it from a perspective that none of us could imagine, fascinated by the littlest of things, and things that would have escaped our notice or seemed unworthy of our attention. Maybe someday she will be able to tell me about her discoveries. Until then, I'll try to forget the sense that my soul was being pulled from me while she walked alone down the beach, and instead hold on to the pictures in my mind of her joyful exploration of the shoreline.
Comments:
I agree with aurorabunny, that was a beautifully written piece. i felt as though I were there with you. Thanks for sharing.
Thanks to both of you--for reading and for commenting so kindly. I'd been thinking about that feeling since we first went to the beach. I finally tried to put it into words.
Absolutely beautiful. I could visualize the entire scene.
I agree with the other comments. Beautifully written - you should have it published somewhere! Very vivid and eloquent.
beautifully written. i could imagine myself there.
That was beautiful. My son has Asperger's and I totally relate to feeling of relief when he gravitates towards older women, who seem to accept him for what he is and not ask questions. He does that naturally. Other children, besides his sisters, often don't play with him due to his fixations and he unclear speech. Added to that, he has a very high IQ and doesn't relate well to kids his age. I hope you can someday reach Lillian in the way you want to, but just know that you are reaching her in some way.
You brought me right back to my daughter's childhood. She's 13 now, but her early years were very much like Lillian on the beach. I loved reading that piece. Ya gotta love our little ASD kiddos, they are truly special and have a lot to contribute to the world.
That was a beautiful entry and I am sure that it touched the hearts of so many mothers and grandmothers out there! We have all had those feelings....I'm sure all of our collective souls have been pulled in the direction of these special children. You ought to think about having something published! Thank you so much....Beth100
Thank you all for your kind words.
I thought my experience would resonate with other moms--maybe with different players and/or in a different setting--especially with those who have children on the spectrum, but also possibly with those whose children have different challenges or even are typically developing. Those heart- and soul-tugging moments can happen to any mom, I think. But having a child with a developmental disability like autism can make those moments often more poignant.
I do like hearing from those moms (and grandmothers) who can relate to my story, so thank you again for your comments!
Already a member? Click here to log in
Check out these Tasty Treats from The Stir's partners:
Wow...this is a really beautifully written post. I know those feelings and you put them into words much better than I could have. It sounds like Lillian had a wonderful time, I know how much that is worth even when we're not sure why it was wonderful or what made it that way.
- aurorabunny
Message Friend Invite