Beautiful Minds: Two Families Dealing With Asperger’s Syndromeby Ladianne on Mar 23, 2013 • 2:45 pm 3 Comments
Publisher’s Note: This article shares the perspectives of two families, each includes a family member who has Asperger’s Syndrome. We are aware that recent changes to certain diagnostic manuals and policies have resulted in shifts in diagnostic labels and their associated symptoms. However, this article does not seek to analyze diagnostic labeling or engage in debate around issues associated with that labeling. This article is simply the presentation of perspectives in an effort to help create awareness around the challenges related to raising children with particular attributes. Nothing in this article should be seen as medical advice of any sort. Should you have specific medical questions, please consult your physician.
To the parents who so graciously and generously shared their stories, we extend deep gratitude. It is our hope that your openness will help encourage and enlighten others.
Thank you! – TheFlyingSpoon.com
Sue and Mike’s Story:
When Sue and Mike went to Russia in February of 2001 to adopt their son, Jack, they had no reason to believe he would have any challenges outside those generally associated with babyhood. “When we got there and met him for the first time,” Sue recalls, “he was fine – laughing and giggling. We left the facility where he was living, went to court to complete the adoption, and when we came back and walked into the play area where Jack was, we saw that they had him in a walker and there was a fan above.” Sue says she and Mike noticed Jack’s attention had been captured by the fan. Now, years later, Sue thinks some of what she saw in his behavior in that institution may have been signs of things to come.
As Jack made his way through preschool, Sue says, everyone told her, and her husband Mike, that the delays in Jack’s development, and particularly his speech, were to be expected in a child adopted from a Russian institution. Jack’s parents put him in speech therapy, but eventually, other behaviors alerted them to the fact that there was something more than normal developmental delays at work.
“Jack started pulling other kids’ hair – particularly long hair. Everyone would tell us that behavior was normal for a child of Jack’s age, but that didn’t make sense to me for some reason,” Sue says. “At one point, I happened to be standing next to the mother of another kid in Jack’s class. The mom was a speech pathologist. We were standing there looking through a mirrored window into Jack’s classroom, talking about Jack’s behavior, and the mom suggested that perhaps Jack might have sensory issues. It was around that time that we noticed that if we took Jack to the grocery store and some other adult started trying to play with him by making funny faces, Jack would scream bloody murder. I would go into the store, and look at the other adults and think please don’t play with him…please don’t play with him.”
Sue and Mike continued to take Jack to speech therapy and, at the same time, began a whole new sensory-oriented routine as well. “We would do things like spin him around in an office chair, and then swaddle him, or help him do wheelbarrows up stairs. We were told these activities could help sort of rewire Jack’s central nervous system,” Sue says.
It was around that time that Sue and Mike found a physician who specialized in developmental pediatrics. Dr. Joe Stegman, or Dr. Joe, as Sue’s family calls him, has helped Jack and the rest of his family through all of the hard work associated with Jack’s beautiful and unusual mind. “We love Dr. Joe,” Sue says. “He let Jack get through the normal stages of young childhood before diagnosing him for sure. Up until last year, we would say Jack had pervasive development disorder, but last year he was diagnosed as having Asperger’s Syndrome,” Sue says. A steady course of behavioral therapies and regular check-ups with Dr. Joe, has made a world of difference for Sue and her family – and so has their choice to have open, honest, age-appropriate conversations with Jack about everything from his adoption to his very unique mind and the way it works. “Starting with adoption,” Sue says, “we were told it was best to let him know he was adopted – to make it part of his life all along. We have followed suit with that, thinking that if he grows up knowing he thinks differently from other people, it becomes part of him. We feel that the outcome of that practice has led to a lot more open conversation between him and us.”
Sue says Jack’s little sister, Tatiana, who is now eight, certainly struggles with her brother’s Asperger’s Syndrome, but Sue and Mike try to keep balance in their household. They say they definitely try to help Tatiana understand her brother’s behavior without putting huge emotional burdens on her. While all of that is tough, Sue says, the greatest challenge she’s personally had in raising Jack has been in learning not to worry what other people think or feel like she has to explain his “quirkiness”. Sue feels Jack has taught, and continues to teach, her entire family about patience, acceptance, and “pure” goodness.
Lynn and Michele’s Story:
Lynn and Michele knew their son Greyson was different from the start. He was unique, quirky, and – in their words – eccentric. Those attributes led them to pursue education at a local Montessori school. “I picked that school because I knew he was different and rather eccentric,” says Lynn. “I learned that Montessori schools try to teach to the individual child so I thought it would be wonderful for him.” Their experiences, however, turned out not to be so wonderful.
After noticing some specific differences between Greyson’s behavior and that of the other children in his class, and then going through play therapy, Lynn and Michele finally decided the Montessori school wasn’t the right fit for Greyson and opted to move him to another school. Finding the proper educational fit for Greyson has proven much harder than Lynn and Michele could ever have imagined, and they have decided to homeschool Greyson.
Lynn and Michele say it has been very difficult to watch him struggle to fit in with kids his age. Lynn and Michele say he is “emotionally behind, and also behind in his motor coordination skills and fine motor skills.” At twelve years old, Greyson still struggles to do simple things like tie his shoes. Michele and Lynn compare him to Sheldon – a very interesting and quirky character on the CBS comedy series Big Bang Theory. “He obsesses about things,” Lynn says, “ and gets crazy if they don’t happen or end up like he thought they should. We always have to surprise him when we are doing things or going somewhere because if the plans get changed he cannot deal with that.”
Along with all of the challenges associated with raising a remarkable kid like Greyson come myriad rewards as well, say Lynn and Michele. “The most rewarding aspects about Greyson have been the lessons he has brought to us,” they say. “We have learned that everyone has a story. No one can be judged just by what you are seeing on the outside. Things are not always what they appear to be.”
Of Greyson’s future, Lynn and Michele say: “We both hope for Greyson to be successful in life. He is extremely bright and intelligent so if he chooses to go to college there should be nothing to stop him from doing that. Most of all we wish for him happiness and that will come as long as he does in life what he loves. We hope he follows his passions wherever they may lead him sharing with the world the remarkable guy that we continue to love.”