BENEFITING: THE NEW ENGLAND CENTER FOR CHILDREN INC
ORGANIZER: THE NEW ENGLAND CENTER FOR CHILDREN INC
EVENT: 2013 Boston Marathon
EVENT DATE: Apr 15, 2013
Why am I running the Boston Marathon for The New England Center for Children (NECC)?
Yesterday, I ran 18 miles in 20 degree cold on a training run for the 2013 Boston Marathon on April 15. Half way through the run, when the chill, ache and fatigue started to set in, and I was soaked to the skin with sweat and had to change clothes so as not to freeze in the cold weather, I thought to myself “Why am I doing this?” Then, as always, I smiled to myself and thought, “Because it is for Jack.”
I am the parent of a 23 year old autistic adult named Jack. I have a husband John of 25 years and 4 other children, Tim, 24, a Graduate Student of the University of Binghamton now working in Syracuse, NY, Grace, 19, an Undergraduate Student at Boston University, Joey, 13 in 8th grade and Thomas 10 years old, in 5th grade.
My son Jack is a wonderful human being and he has autism.
No one expects their child to have autism or any disability for that matter. No one wakes up thinking that their child will struggle to learn and to do simple tasks we all take for granted. But it happens.
So you have this beautiful baby and you notice that he is not looking you in the eyes. He doesn’t respond to your voice. As he grows, you notice he is not pointing to objects he wants, he does not want to play with his brother, he cannot engage in or attend to a task, he sits alone in the sandbox at the playground, he won’t eat many foods, he isn’t speaking words, and he is beginning to have strange repetitive behaviors.
He walks around and flaps his hands and screeches. He has tantrums in the grocery store. He has tantrums at home. He won’t sleep at night. You have great difficulty potty training him. He doesn’t imitate actions or speech. He can’t seem to learn to dress himself, brush his teeth, or take a bath. He has no sense of danger and sometimes tries to flee the house and run into the street. You know something is terribly wrong but you don’t know what exactly. Then you are told after many many doctors’ appointments that he has autism and there is not much you can do.
You don’t know why this is happening, but you know you need to do something. So you pray and you pray and you stay up at night reading and searching for an answer. Your younger children start to bypass your autistic son in verbal abilities and cognitive skills. The family situation becomes strained and difficult. It is difficult to get the simplest of chores done such as grocery shopping and cleaning the house and helping with homework because of challenging supervision issues. Now your autistic son begins to have self- injurious behaviors and other behavior challenges. He hits himself in the head and he hits his head on objects. He needs supervision 24 hours a day. He is not learning the simplest of tasks. So you ask God what am I supposed to do? What do you want me to do?
Autism is a communication disorder which affects the person’s ability to speak, communicate, behave appropriately in social situations, read, write, perform daily living skills, work, play and function in society. It can be severe. My son Jack is severely affected.
That is the bad news. This is the good news.
Autism is a treatable disorder. There is a specific teaching method called applied behavior analysis (for short ABA) which has been scientifically proven to help people with autism learn, manage behavior, acquire work and leisure skills and become productive members of society. The basic idea is to break down tasks into very small steps using positive reinforcement to shape behavior and cognitive and social skills.
When Jack is about 4 years old, we learn that Jack needs this ABA teaching method to learn. After much searching for consultants who knew how to do this method and could effectively train others and teach staff how to manage a consistent program with Jack, we started a small school for Jack in our basement. We had 5 tutors and a consultant and 40 hours a week of one on one behavior therapy in our home. It was difficult and disruptive. But Jack began to learn.
He learned how to imitate behavior, respond to simple commands, talk with pictures, dress himself, toilet himself, follow a picture activity schedule to perform leisure activities and chores, etc. He learned to look in our eyes and point and communicate and pay attention. We did this for three years and we are not the only family. Many of our friends with autistic children did the same. They sacrificed time, money, in many cases careers and living circumstances to help their children.
And then the behavior challenges became too much for our family. Jack broke one of our kitchen windows with his head and we realized we needed more support. We needed a residential program which used applied behavior analysis as a teaching method. At the time, there were no programs appropriate for Jack in New York State. After a year of searching, we found an amazing school in Southborough, Massachusetts, 20 miles west of Boston, whose focus is teaching autistic children, many with severe behavior challenges, using this method of applied behavior analysis. This method was the only way Jack was able to learn a new skill. With much advocacy, the grace of God, and some help from our school district, we placed Jack at this school when he was 7 years old. This school is called The New England Center for Children (NECC for short) and Jack was in residence there for 14 years, from age 7 to age 21. When he first got there, there were days when he hit himself in the head hundreds of times. He hit his head on objects and had dozens of tantrums a day. Now, although he still of course has behavior challenges at times and there are still many new skills he needs to work to acquire, he uses an IPAD to communicate, he is happy, he is social, his eyes light up when he sees his family, he has some independent living skills, he works at his dayhab job shredding documents, stamping and sorting mail, and washing windows. In addition, he is learning new vocational skills. His behavior rates are down significantly, he goes to restaurants with his family, and he enjoys many leisure activities. And he is able to learn. He has had the opportunity to be the best that he can be which is what we all want for our children. The New England Center for Children most likely saved Jack’s life and we will be forever grateful.
Each student at NECC is treated with kindness, tolerance, dignity and respect. They are honored for their unique talents and abilities. They are encouraged always to work hard to live to their full potential and to be the best that they can be. The staff at NECC, from top administration to direct care behavior therapists, treat their students as if they have no limits, with love and respect, like a family. They provided hope when there was little left. They provided a place where Jack could learn and thrive. They provided a home and a family when we were far away. They provided encouragement when times were difficult and Jack was struggling. But they never gave up. They never would. I could never say enough about their respect for life and their promotion of the dignity of all.
Currently, Jack is in a residential program in Ossining, NY, our home town. This residential program is managed by an agency called Cardinal McCloskey Community Services (CMCS). We were lucky enough to find an agency in New York State, in Westchester County, who listened to us and partnered with our family and 3 other families to create a residential program for autistic adults using (ABA) as the primary teaching method. It took 2 years to get off the ground and NECC was very helpful and supportive throughout this difficult period. They still are. You see, the CMCS administration visited Jack while he was still a student resident at NECC. Jack’s new residential program is modeled after NECC’s residential program for autistic adults. What more is there to say………
I have run 4 marathons in my life to date. One of them was for NECC in 2010. I will run another marathon on Monday, April 15, 2013, for The New England Center for Children and for Jack and for all autistic individuals everywhere. No matter how hard a training run is or how grueling a marathon experience, it will never be as hard a struggle as it is for my son Jack as he strives every day to perform his life tasks as independently as he can in our world. I will always run for Jack. Every day is a marathon for him.