JBRF is a research organization –but some of us are also parents. Those of us who aren’t parents have been involved with the struggle long enough to share the perspective. The following is a statement of empathy and support to all the families out there.
Millions of us know that something is tragically not right with our children. They struggle with confusing and serious challenges which make it very hard for them to control their behavior, feel secure, direct their thinking in a productive manner, interact in a way to nurture social relationships…and basically, to thrive as we and they would love.
We come from all socio-economic classes, educations, cultures, and ages. Many of us have raised multiple children. We recognize that there are many influences affecting a child’s health and development, and that health and development, unto themselves, are hard concepts to define. What is normal? What is a phase? What is bad parenting? How do we know if what we observe is manipulation or the compounded effects of multiple drugs? How do we know that we wouldn’t be better off waiting “it” out, changing the diet, censoring the exposures, and limiting the schedules? Why is it that our children can behave so appropriately in so many situations but rarely at home?
We ask ourselves these questions all the time. Our families, friends, schools, doctors and the national temperament barrage us with them as well. While we do not dismiss these factors as pieces in the puzzle, we know that something more basic is robbing our children of their balance, development and happiness and that it may ultimately rob them of their lives. It also exacts a huge toll on our families. Siblings are subject to constant unpredictability and often aggression. Parents are exhausted, and often see their relationships deteriorate as they try to make sense of their child’s emotional pain and behavioral gyrations. Our hearts are broken as we not only try to limit the impact on our other children, but also try to keep our affected child’s personal, academic and social worlds from falling apart. Too often we have to say good-bye to our child and place him or her in the safest environment for all concerned. All these efforts are made while being careful to walk that fine line between advocacy, alienation and stigma. We don’t know what this disorder will look like as our children grow up, and we don’t know what name will ultimately describe it, but we do know that it is there.
There are generations of genes that will follow in our family lines. If we do not come to a clearer understanding of what causes the disease, it will cast a long shadow on our children and our children’s children. We look forward to a day when relief will be predictable, public perception will be neutralized and our children can flourish.
As an organization, JBRF will do what it can to promote the type of research that will replace shadows with sunlight.
As an individual, you can be part of the team to bring about change. If the research described in this site seems to explain your child’s condition, then educate his or her doctor, teachers, family and other caregivers. Insist that they consider a new perspective.
Do what you can to help us with our studies. Without family participation in studies and dialogue we cannot move the research forward or out there into the public domain where it will help your child.
And please, whenever possible, make a contribution to JBRF in order to keep the research going.