PAPAS: A blessing named Jon
By Rev. Paul N.Papas II
Fri May 08, 2009, 10:42 AM EDT
One of the greatest losses in the life of a parent is when he or she hears the words, “Your child is disabled.” The diagnosis of a child with a disability disrupts the everyday life and plans of the parents, often forever.
That disability could be an obvious physical impairment or an unseen medical issue, such as a hole in the heart, respiratory issues, or a mental illness.
The words from the neurologist about their 1-year-old son, Jon, still echo. “The best I can tell you is for some reason Jon’s brain didn’t form properly which accounts for the severity of his mental retardation. And at birth something happened which accounts for his Grand Mal seizures. He may become a two-year-old mentally and then again he may not.”
Jon’s parents were sent home with those words and their lives changed. They were conscious of the safety needs of their daughter, Mary, who was seven years older, but even more so of Jon.
Children are supposed to grow out of their total dependence state. Jon never did. Children are supposed to learn what not to touch or put in their mouth. Jon never did. Children are supposed to learn what is safe and what is dangerous. Jon never did.
So they experienced what most parents of disabled children experience — constant vigilance, over- protecting the environment, supervising and educating everyone else who would have some part in Jon’s life.
As parents you have to provide a safe environment. (Fortunately, Jon was very passive and easy going so we could relax. Many parents have out-of-control, impulsive children who may not learn from their experiences).
When you go on an outing for recreation or a meal you’re quite vigilant. You notice things other parents might not. And if you don’t and your child is hurt you feel like a failure, even when there was nothing you could have done to have prevented the hurt.
When your child is 17 and a seventy-five pound infant who can’t be toilet trained and barely feeds himself, you’re protective whether he lives at home or not. When you think of keeping these children safe what usually comes to mind? Often it’s protecting them from others who would prey upon them. A lot of thought has to go into protecting them from themselves also.
Even a child with slight disabilities can be the source of ridicule, taunts and bullying from other children. Often weakness can bring out the worst in others.
“Without the support of others the effects of teasing, put downs and other non-physical abuses can be long lasting. What others say to this child can be so internalized and ingrained that it creates an inordinate need for acceptance. Repetitive rejections which occur for years can wear down a child.”
Parents or other caregivers can alert teachers or others who work with the children to be alert and intervene. A child can be given guidance on how to respond to the negative, painful remarks of others.
Don’t feel sorry for the teaser or bully. You can feel sorry for anyone who teases or bullies because they have unhappy hearts. And unhappy hearts are much harder to fix.
One of the greatest fears is that of sexual abuse which occurs all too frequently. The exploitation of the disabled at any age is a concern. These are children who can’t protect themselves because of physical problems and when there are mental limitations involved there may be confusion as to boundaries as well as to right and wrong. A disabled child may be manipulated or preyed upon by other children, siblings, adult helpers; camp worker, etc.
Yes we are to look out for and be vigilant to protect the disabled. Don’t let your vigilance over all these concerns for disabled children keep you from learning from them. They will be your greatest teachers—about life, loving and learning to adapt. “Jon taught us about life in a way we never experienced before. He changed us and for that we are eternally grateful.”
(The Rev Paul N. Papas II is a Pastoral Counselor with Narrow Path Ministries (located in Massachusetts and Arizona), founder of the Family Renewal Center and current President of NAMI (National Alliance on Mental Illness) Greater Framingham. NAMI Greater Framingham has support groups for family and friends in Framingham and Uxbridge, support groups for consumers in Marlboro and Framingham , and various Education Meetings on the first Thursday evenings of the months from September through May http://www.narrowpathministries.org, http://www.familyrenewalcenteraz.org, and http://www.namigreaterframingham.org.)