My sweet Anya-Marie (Elizabeth) Joy is almost sixteen now. Our journey together has been difficult at times, almost unbearable at others, but like her name, she brings me great joy. Within hours after her birth, my husband and I noticed that Anya looked a little odd to us. She seemed to stare off into space. She is our sixth child, so we had some frame of reference on which to base our observations.
At first, we didn’t really worry about what we were seeing, but as time went on, she didn’t accomplish milestones at the same rate that our other children had. She didn’t look at us, she looked above us. She rarely smiled. We couldn’t ignore it anymore… something wasn’t right.
She was only mildly delayed in terms of motor skills, so by four years old she functioned physically quite well, except for extreme sensory integration issues. She was both hyper and hypo sensitive and required physical therapy from age two. She would stomp her feet when she walked, but would also scream if a light went on or a hair touched her body. Blessedly, we had dealt with similar issues with her older sister, so we recognized the problem and got intervention early.
By the time she was four, we were told that she had a low IQ and was moderately developmentally delayed. By age eight a diagnosis of Asperger’s (a mild form of autism) had been added to the list. As is typically with that combination of issues, the world was a threatening place to poor little Anya. She spent most of her time in screaming fits and meltdowns. Life was difficult for our entire family due to managing her problems and still trying to raise a healthy family and maintain a strong marriage.
At one point, an ‘expert’ suggested we find a ‘home’ for her. It was then that we decided to proactively change everything in our lives to help our little girl thrive. We read everything, studied anything, spent countess hours working with Anya. We were supported by some wonderful family and friends who wanted to help us, help her. We developed a plan and strategies, regularly changing them to adapt to her changing needs. We looked at all family outings as potential meltdown scenarios and developed coping and exit strategies when our worst fears materialized.
One of Anya’s safety zones was, well, me! A friend once referred to me as her Rosetta stone, because I could translate her to the world and the world to her. She went everywhere with me. My mom jokingly (and lovingly) called her, “mommy’s little barnacle.” She clung to me all day, everyday. As she got older she would even go to work with me, sitting quietly for hours as I had meetings.
A few years ago, things started to improve. She still went everywhere with me and still wouldn’t venture anywhere except school on her own, but her gifts and talents started to shine through. She has a love for the clarinet. She also has a wonderful gift for caring for small children, especially with children who have disabilities. As I would teach Adult Faith Formation, Anya would care for the children of some of my catechumens. One little boy was non-verbal, autistic. He would jump up and down as soon as he saw her. Anya also has an ability to take beautiful pictures. Her dream is to photograph special needs children.
A few years ago she was Confirmed. She chose Elizabeth as her Confirmation name, very logically, as she was already named after Jesus’ mother and grandmother, why not his cousin too?! She often contributes at youth group, goes on the March for Life and to the Steubenville Youth Conferences (as long as I am one of the chaperones) and will even venture to a friend’s house occasionally now and then.
She has taught our family patience. She has taught us to put another’s needs above our own comfort. We have learned to be flexible, to accommodate her rigidity. All of my children are loving and sensitive to the needs of others, especially to the disabled. She has helped us grown in the love of Christ, as we learned to love the least of our brothers.
She has grown exponentially in the environment of our family and has had a jump in IQ score and social skills. She is still measured as low, but low-average on most scales that measure intelligence and social functioning!
As my little ‘saint-maker’ sits beside me as I drive to work, I realize how much we have shared because she has always been by my side. I recognize that someday, she will be on her own, and that my passenger seat will no longer hold my chatty, constant companion. My heart flies at the knowledge that she has grown, but as I sit here writing this, I am wiping more than a few tears from my eyes. She has succeeded, but maybe I am the one who has grown. Thank you, Anya. We love you!