Matt has always loved the water and going to the beach was always a time of high excitement. One of our favorite destinations is the Outer Banks of North Carolina. For Matt it was especially wonderful as it has the Wright Brother’s Memorial, light houses and shopping too. Matt loves historical places and every time we go we are obliged to visit the location of the first-flight sand dunes, the memorial and exhibits. Matt and I even walked the entire path of the distance the plane flew on one winter trip. It was very cold. The winter air biting our exposed faces and hands as we stepped along the path from marker to marker. It was important to him. I hate the cold but Matt wanted, no – needed- to do it and I just couldn’t say “no” to that pleading expression on his face. The memorial monument we have seen up close on sunny days and on cold, blustery days because it was expected of us. Matt took pictures of the artwork carved in the marble from every angle as well as the view from atop on each trip. We also explored several light houses over the years; Ocracoke, Hatteras, Currituck, and Bodie Island. I have a fear of heights and walking the hundreds of open stairs to the top of each light house was always an adventure for me – a white knuckle adventure! But Matt needed to go to the top, and so I went. Matt needed to experience the history, visit the museums and he always bought some small souvenir. It was a part of his routine. I had my own favorite spots, of course. For me, the water crashing on the beach was the absolute best place to be. Over the years we have walked miles on the beach, built massive sand castles and even driven the jeep on the sandy beach trails. We have jumped in the ocean when the water temperature was freezing (or at least it felt freezing in June) and lay on air rafts and watched dolphins swim right by us on hot summer days. Yep, we love the beach. The more secluded the better.
Over the years we have gone further and further away from where the crowds are and more toward the long stretches of deserted sand. It doesn’t matter to Matt. He would be fine in any beach area because his focus is always on the water, the sky and the beauty of the beach. I know he is looking at the beauty of it. He points it out to Tom (my husband) and I all the time. “Look at the sky” or “pelicans!” and even “Oh my!” are heard uttered on every trip. Has he always been this aware of his world? There were times when I wondered if he saw what I saw – but those days are long gone. In those days Matt was a young child, didn’t speak much and was very focused on the historical nature of the Outer Banks. As he grew into a teenager and his speech was more fluent I became aware that Matt saw everything I did and probably more. His artistic nature marveled at colors painted at sunset across the Pamlico Sound, the gracefulness of the pelicans in flight, the spray of sparkles as the waves crashed on sand. He drew many pictures and took many more with his camera. Matt was changing drastically during these years. His body grew tall and his voice deepened. He understood more facial expressions and body language and was eager to learn more. He watched his siblings interact and joined in good-natured banter, and he began to take mental notes about the likes and dislike of others. By this I mean Matt actually started to show signs that he cared about my fear of heights, my love of pelicans and my love of beach-combing for shells.
We have gone into the light houses many times and Matt knows that I have fears about height. Now as we walk up the stairs he sets the pace slow and reaches for my hand every few minutes to comfort me. It’s his way of protecting me. He has witnessed his daddy doing it a thousand times and understood that a strong hand can calm. When pelicans come into view gliding across the water and diving for dinner he excitedly points them out to me. He has seen his daddy show me a thousand times and has heard the excitement in my voice when I see those magnificent birds. He walks the beach with us, sometimes for hours without complaint, picking up shells. I know Matt has no real interest in the shells themselves, but he knows that I do. Matt picks up shell after shell, and not just any shell. He picks among the clusters only shells he has seen his daddy or I pick up. He shows them off with pride and slips them into a bag, just like we do. When we get home he offers his shells to us. They were for us all along.
On one of our last beach trips we stayed in Buxton and walked the point daily. We arrived shortly after a storm had passed through and the waves were still quite large and loud. One evening Tom, Christopher (our oldest son) and Matt were shell hunting where the high water mark left by high tide had deposited a multitude of small shells. I was at the water’s edge mesmerized by the waves in the moonlight. “Ok, ocean” I said out-loud, “toss me a really big shell!” A moment later a large wave crashed near my feet and as it pulled back to the sea I spotted a rolling shell. I ran to pick it up before the next wave could reclaim it. It turned out to be a prize catch. A large 10 inch conch un-broken and beautifully colored was firmly clasped in my hands for the very first time. I excitedly called out to the gang and they came running. All were astounded by my find and all immediately scanned the beach near the wave break. The time flew as each of us ran for shells and repeatedly chased back to beach by the waves. Matt was a big part of “the great shell chase of 2008". He ran toward the water and scooped up a shell and excitedly ran back up the beach as the next waved chased him. He brought his magnificent find directly to me, handed it off and went back to look for more. As we walked back to the Jeep we noticed the waves had deposited the fluorescent algae as well. Each step we took left a briefly lighted footprint in the sand. It turned out to be my absolute favorite memory of the beach.
The underlying story here is this. Matt blended in beautifully. He hunted shells, marveled at the glowing algae, commented on the beauty of the moonlight on the waves and joined in at every turn. It never even crossed my mind that Matt was autistic that day. He had learned over the years how to read facial expressions, body language and voice inflections and as he had matured his responses and actions had become second nature – not forced expressions or comments. Matt was just being . . . well, Matt. I thought about this long and hard and came to realized that autism plays less and less a role in my own perception of who my son is. I don’t think about autism daily, and in all actuality, I may go days without thinking about it. On days where I do think about it I am focused on how to help him achieve independence or discuss a subject with him, but I can’t remember the last time I actually thought about Matt as simply autistic. Although I am aware that Matt is still very much autistic, I don’t dwell on it and . . . . I don’t hate it. It is simply another aspect of who Matt is.
So this story is for those parents with young autistic children. I know your fear and feelings of helplessness upon hearing the diagnosis of autism. I know the hurdles you face and remember wondering myself if those mysterious and odd behaviors and frustrating speech patterns will prevent my son from enjoying his life. But I also know the joy of watching this same child grow and mature and slowly leave behind many of those characteristic autistic traits. I have watched my son grow, both physically and mentally. I watched him go from observing and learning social cues to actively practice the various interactions the rest of us take for granted. I have seen the subtle changes in his awareness. I know my autistic son can feel love, empathy, quilt, sadness, joy, and frustration, just like everyone else, and I understand just how much courage it takes for him to express himself. I understand your apprehension because I’ve been there, I know.
I also know that autism is a part of who this wonderful young man is – but it does not define him, nor does it take away from the other aspects of his personality or his nature. I accept him fully. For me, the revelation of that was mind-blowing. Acceptance is not just having an understanding of autism or being able to list a set of behaviors. Acceptance is having day to day interactions in which you enjoy your child’s company so much you forget about the labels and handicaps. It is something I hope each parent of an autistic child is able to do at some point – to know acceptance. You’ll know it when it happens - it will dawn on you that while you were celebrating the wonderful blossoming of the beautiful soul that is your child, autism didn’t even cross your mind.