Isaac's Story - Original Version, 1998

Introduction

Nothing can prepare a parent for the announcement "your child is autistic". In many ways, it is a similar experience to learning of the death of a loved one. When we first learned of Isaac's disability, we knew that the life we expected to have with our second child was not to be. In it's place, we have an existence that is both an incredible challenge and a unique joy. We hope that through our sharing, other parents who have an autistic child may see that they are not alone. Perhaps the worst feeling that anyone can have, once they discover that they have an autistic child is the feeling of aloneness. People are often cruel when your child's behavior in public is less than appropriate - for a neurologically typical child. We have had to modify our lifestyle to accomodate Isaac in ways that most people would probably find intolerable. Nevertheless, for all the bad responses we have received over Isaac, there have been those who have gone above and beyond the call of duty to be there for Isaac and indeed, for our entire family.

Isaac's Story

Isaac on horseback at Oneco Elementary School, age 4

Isaac's story is typical of many autistic children. From birth, Isaac was a little hyperactive, but otherwise quite typical. He was developing at a reasonable pace, meeting many of the milestones in the developmental literature. I can recall a remark to his mother that his speech was getting better than his older (by 20 months) brother George. Then, at first imperceptible to us, he began to slow down and then seemingly regress in his neurological development. While his physical development continued apace, we began to notice behaviors which were troubling. He was becoming more and more impulsive. The worst (still a major problem) is the tendency to bolt from us and wander aimlessly, without any sense of danger from such things as cars or water. Long before his diagnosis, we had many episodes where he would attempt, often with success, to take leave of our supervision. At daycare, he failed to integrate with the other children, raising serious concerns from the staff. At that time, we attributed his behavior to an "extra willful personality", not unlike his older brother. As it turned out, his older brother didn't exactly pass muster as a benchmark for typicality. George has now been identified as ADHD (Attention Deficit/Hyperactivity Disorder), as well as being in the "very superior" IQ range. The daycare staff finally required us to have Isaac assessed in order to continue to be cared for there. Apparently, they were having a difficult time retaining staff to care for Isaac. We went along with the assessment process, if only to prove the daycare administration wrong. How wrong we were! The people at the child assessment center were very thorough in their workup and told us that Isaac was PDD-NOS. PDD-NOS means Pervasive Developmental Disorder-Not Otherwise Specified, which is a catch-all term for Autism and related disorders. Our initial reaction was one of denial and disbelief - "not our son!" Fortunately this reaction did not hold us back from seeking intervention for Isaac. We found out that the schools here in Florida, at least in Manatee county, have a very good program for autistic kids starting at age three. Since Isaac had just turned three at the time of his diagnosis, we were able to enter him into the school program almost immediately. Autism is the sort of disorder that, if not treated with an aggressive program at an early age, is almost hopeless. In the past, autistics have been treated as mentally handicapped and basically institutionalized for life. As it stands, he has been in an excellent program for almost three years now and has made amazing progress. He has a team of educators working with him, all well trained and suited to the task of educating autistic kids. He receives occupational therapy, speech therapy and other programs designed to stimulate the learning process. We feel that if Isaac had not received the attention he has had, he would probably be well on his way to a much less happy and fulfilled life. He has a long way to go and I'm certain it will be a long time before we know his true potential, but the start he has made so far is very encouraging.

How Isaac Got His Name

In my family, the task of naming has fallen to me, probably because I did such a great job naming the pets! Almost everyone I know has a strategy for naming their children. Most of them pick a name that sounds good, or is popular or that their parents like. My criteria is a little different. I choose a name for its meaning. Isaac was probably my favorite for many reasons, which I will outline below. First, the Biblical reference. "Your wife Sarah will bear you a son, and you will call him Isaac . Isaac means he laughs" Genesis 17:18b-19a, NIV. The name is ironic; deeply religious significance mixed with laughing. Maybe thats why I don't think its such a bad idea to laugh in church every so often! Another individual named Isaac, the science fiction writer Isaac Asimov, is one of my heros. Another set of paradoxes - Asimov who was born in Russia, became an outspoken proponent of the American system, as well as a "devout" atheist. Isaac is also a family name, from several generations past on my mom's side - in the days when everyone had a vaguely biblical name of some sort. His middle names (yes I prefer to give my kids two middle names, rather than the standard one) are Alexander John. Both of Isaac's grandfathers are named John, and Alexander is the name of his mom's ONLY first cousin and his father. By various readings of his initials, you can also derive other family names. Of course the real reason I gave Isaac his name - Isaac Newton, probably the greatest scientist who ever lived. Isaac Neufeld means precisely the same thing in German.

Notes

1. Autisim: A spectrum of disorders marked by a combination of following indications; avoiding contact, over passivity, over agitation, difficulty socializing, obsessive behaviors, repetitive behaviors (rocking, head banging, hand flapping etc.), developmental delays, insensitivity or over sensitivity to pain, hyperactivity or hypoactivity, poor eye contact, insistence on "sameness" and other less common indications. The term "autism" covers a broad range of disorders that share some, but not all characteristics. As well, a person can be severely autistic or "higher-functioning" with many of the characteristics, but not all.

2. Stages of Grief: Psychologists have noted a pattern of behavior that people generally follow when confronted with a traumatic event, like the death of a loved one. Although there is some variation in the naming and sequence of the stages, they are similar to the following: Shock, Denial, Bargaining, Anger and Acceptance. The first reaction to the traumatic event is shock - or a lack of ability to comprehend what has taken place. Then comes denial, because the event is so difficult to deal with, the person tries to change their reality to something more pleasant. Once the person realizes that denial is not an option, they often begin to "bargain" with God (or a doctor or some authority figure) to change the circumstance. Then the person becomes angry when they realize that their bargaining is irrelevant or to no avail. Finally, once the anger has subsided, the bereaved comes to accept the loss and goes on with life. A person can become "stuck" in any one or a combination of these stages. A psychologically healthy person spends some time in each stage, eventually coming to terms with the loss in their life.

3. Neurologically Typical, or NT, regularly brained - i.e., not one of the folks who have some sort of dysfunction of the mind. The question is, of course, who are these people who are typical?

4. ADHD, Attention Deficit/Hyperactivity Disorder, is a neurological impairment that manifests itself in a combination of the following symptoms: hyperactivity, impulsivity, inability to focus on "boring" activities or subjects, disorganization, spatial and verbal dyslexia, unexplained irritability and emotional negativity. It is notable that many of the symptoms of ADHD are similar to those of autism. Many researchers in the field speculate that they may have similar causes, especially the genetically based explanations. Many ADHD sufferers are treated with a stimulant medication, like Ritalin that, oddly enough, allows them to slow down and focus.

5. The story of the biblical character Isaac is a fascinating study. His name derives from the Hebrew word "he laughs", which is drawn from the story of how his birth was announced. In the narrative, three men, deemed later to have been either God and two others, or three angelic beings, visit Abram (later called Abraham), the original patriarch of Israel, and announce to him that he will have a son. This clearly amuses his wife Sarai (later called Sarah), who is said to be 90 years old at the time. She laughs at the idea of becoming a mother at that late stage in life. The rest of the story is at least as interesting as this auspicious beginning.

6. Isaac Asimov: 1920-1992, Science fiction author and educator. He authored hundreds of books on subjects ranging from religion, biology, general science and most predominantly, science fiction. He is best known for his Foundation series, a kind of future history, centering on a scientist who invents a way of predicting the future, called Psychohistory. His contribution to the science of robotics is the idea of programming in a code of ethics, which he called the "Three Laws of Robotics".

The Three Laws of Robotics are:

1. A robot may not injure a human being, or, through inaction, allow a human being to come to harm.
2. A robot must obey the orders given it by human beings except where such orders would conflict with the First Law.
3. A robot must protect its own existence as long as such protection does not conflict with the First or Second Law.

From Handbook of Robotics, 56th Edition, 2058 A.D., as quoted in I, Robot.

We humans could learn a lot from his robotic laws! Asimov portrayed a universe that, while similar to our own, had the element of hope that humanity could mature and become something better.

7. Isaac Newton: 1642-1727, Discovered the laws of gravity, motion, optics and co-invented calculus. He wrote a book called Philosophiae Naturalis Princpia Mathematica, which tied together much of the science of his day, including many contributions of his own. He held the same position at Cambridge as Stephen Hawking does today.