[Adapted from a paper By Sue Stuyvesant - who penned a short about why there were no parents at a meeting, after a public school administrator complained "Where are the parents?" The author of this adapted version wishes to remain anonymous.]

Where are the parents?

They are on the phone to doctors and hospitals, fighting with insurance companies, wading through the red tape In order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy. They are weary because everyone says they cannot help them, and oh, Autism is excluded from your health insurance policy because it is a psychological problem, not a physiological problem.

Where are the parents?

They are on the phone to school districts, teachers, special education administrators, trying to get what is just for their children. They are buried under a mountain of regulations and laws that purport to help them, but just serve to confuse them. They are trying to become school house lawyers just to get what the law already says they are their rights. They try to explain why it is not acceptable for Johnny or Mary to sit in the chair without stimulation for four hours a day, or why circle time is just not something that a child with autism can understand.

Where are the parents?

They are at home, diapering their 6 year old son. They are chasing their child, who does not understand the need to eat, or who is allergic to food, because of the exorbitant behavior the allergies to food bring on. They spend hours trying to convince a child to eat that has no interest. They are administering medications, hoping and wondering if there is anything that science will do to help.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through? It seems that Johnny ran out into the road because he did not know any better.

Where are the parents?

They are incapacitated, after the sleeping aid the doctor prescribed for Johnny had the opposite effect, and caused the child to stay up for 10 straight days. Somehow, they were not able to come to the meeting.

Where are the parents?

They are home reading books about behaviorism and psychology, hoping to learn enough to make some difference in their child's lives, because the professionals have told them that discreet trial or 40 hours a week of intense behavioral intervention is not appropriate for a child. The child needs to play; they say, but the child does not know how to play. The child needs to socialize; they say, but the child does not know how to play.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They have not slept in years. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. They cannot make the meeting because it was only acceptable to the professionals to hold it during the day, when the parent has to be at work. There is no vacation left, or sick days. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, just trying to survive.