Helping Martin Succeed

As Martin, my strawberry-blonde, two-and-a-half year-old bundle of energy, continued lining up little cars the length of the carpet, I watched intently, hoping that the kind lady who interviewed us would return to tell me that we had nothing to worry about: Martin would be just fine. I knew, though, that this interview would not likely end so well. Still, I could not have been less prepared for the news: “Your son is developmentally 12 to 18 months old.” I couldn’t breathe. I think I nodded, and I know someone gave me some tissues, but I do not remember anything that was said to me after that.

In that moment, 17 years ago, everything we thought our lives would be, changed. Today, Martin is a happy young man. At age 19 and a half, he is developmentally 10 to 12 years old. Yet he attends a job training school, from which he works as a janitor two hours a day at a police station. He has friends he sees at school, and he loves going to church. Sunday morning Liturgy is his favorite. Since he knows the service intimately, he chants along and gives himself over to the work of worship with joy. He is quite a blessing to us, and it is now difficult for me to think of my beautiful son apart from his autism. He is exactly as our Lord God intended him to be.

Martin is not unique, however. In our parishes, in our communities, in our dioceses, in our archdiocese, in our patriarchate, and in the world at large, children like Martin and their families suffer from the effects of their disabilities with few resources to help them. This year the Antiochian Women, with the blessing of His Eminence Metropolitan Phillip, have launched a new project, “Children with Special Needs.” Our son’s story may give you some idea of how such a project can help these special children.

Immediately after receiving our devastating news, my husband and I enrolled Martin in a program for developmentally delayed children. We met once each week with a small group of other developmentally challenged children and their parents and, on average, four trained teachers. While we did not stay in the program long because of a planned move to a new city, it was here that the full range of Martin’s disabilities began to come into focus. First and foremost at that young age, his nervous system had trouble integrating his sensations. He was overly sensitive to sound (he could acutely hear sounds most of us filter out as background noise) and to light and the movement of light, to the textures of things in his mouth, to temperatures, to taste (for years he ate little else than peanut butter and jelly sandwiches), and to touch.

Martin often hit his head on the floor, on walls, on the TV screen, on toys, and on the ground, all in an attempt, we found out much later, to stimulate the nerves in his body. For weeks at a time, bruises and bumps covered his forehead. We considered a helmet, but he wouldn’t wear anything on his head. On top of this, problems with his senses made wearing clothing an uncomfortable, if not painful, experience. For almost two years he wore only a diaper, as most fabrics on his torso and legs irritated or hurt him. Shoes and socks did not stay on his feet for very long. The cure – “scrubs” with a surgical brush on his limbs to stimulate the nerves, and “compressions” of his limb and neck joints to release neurochemicals that create a sense of well-being and calm – would not be available to us until Martin was six. Only then were we able to provide occupational therapy for him through our health insurance. A normal child’s body releases these chemicals naturally when their parents play with them, and tickle them, and bounce them on a knee. Martin’s nervous system required jump-starting. Because of the high demand for occupational therapy, the therapists could only take Martin for two sessions each month, and eventually these services had to cease altogether when more severe cases overwhelmed their small office. Martin definitely could have benefited from more frequent and longer treatment.

Occupational therapy not only helps with sensory integration, it aids muscle development, coordination and strength gain. Martin needed help with all these. I will always remember the first time he jumped with both feet off the floor at the same time. We cried aloud and I picked him up, laughing. He laughed in my arms because I was laughing; he had no idea what he had just accomplished. The milestones I took for granted in my daughter’s development, I could not expect in my son’s. Any and all progress has been met over these last 17 years with the same enthusiasm. We strive to give him varied opportunities to build muscle tone and stamina. Lately he has been trying to swim at the gym and to bowl in the Special Olympics. Because he has a slight obsession with the Star Wars movies, we bought him his own bowling ball with a picture of C3PO and R2-D2 on it. The finger holes were drilled specifically for the way he throws the ball down the lane. Since getting his own ball, his average game score has improved. His strength and endurance have certainly increased. He often tries to flex his arm muscles for us while telling us that he is going to get big muscles soon.

Aside from problems with Martin’s bones and muscles, our greatest challenge has been communication. Martin did not speak until he was three and a half. Even then his speech was intelligible only to the immediate family. Some of his self-abusive behaviors – biting his arms and legs, some head-banging, pinching – reflected his inability to communicate his needs in ways that his father and I could understand. We did not have available to us a common communication device called a PICS, which is simply a book filled with small pictures of common items with the word typed next to it. Children who today cannot speak use this book to convey their needs, wants and sometimes their feelings to their caregivers. For them and their families these low-tech books and their high-tech counterparts – small computers that speak the words typed in them – are invaluable tools. We tried another method: sign language. This required great dedication on my part as I had to learn the signs and teach Martin, my husband, and our older daughter, Erin. This was not an easy task to accomplish on my own. But God’s grace allowed us a modicum of success. Over time, Martin learned to speak. When he first said “Mom, I love you,” we were overjoyed. Without dedication to helping Martin speak and communicate, he might never have been able to express his thoughts, or to tell us his corny jokes, or to articulate his needs and wants.

One of Martin’s pastimes is writing stories. Because of his occupational therapy, he is able to hold a writing instrument correctly and fairly well, considering his overgrip. Martin’s autism is accompanied by other problems, such as mild mental retardation, mild obsessive-compulsive disorder, and, on occasion, Tourette’s Syndromelike tics, both vocal and muscular. (He has never been diagnosed with TS, but his tics resemble those of TS patients.)

What he didn’t learn from therapy was how to read, and reading and math are his greatest areas of weakness. Therefore these are the areas with the greatest potential for growth. As an English teacher, I would have been proud to have discovered some secret to teaching reading to my son; instead, the truth of how he learned to read is a testament to his own desire and ingenuity. He watched movies – with the closed captioning on all the time. It almost drove us crazy to have the words to every movie he watched scrolling across the bottom of the screen. It took many years, but through the association with the words on the screen and the sound of the words being spoken, Martin started reading. For us, words are not enough to express our joy.

“Children with Special Needs,” the new project of Antiochian Women, will help provide children like Martin with what they need to live productive and less burdened lives. Martin never needed much of the equipment that many of these children require, but this sketch of one boy’s life may give you some insight into their lives of courage and hope, the details of which we will never be privy to. I thank God for the opportunity to share with all of you Martin’s success. I hope that together, with God as our helper, we will create opportunities for success in the lives of many other children and their families.

Gina Bernard
St. Andrew Orthodox Church
Riverside, California