Defining A Life (part one)

Several folks have asked me to write more about Son17 and his special needs. And I think it might be good for me to write about it. So please bear with me as I try to share my thoughts and some of our experiences in having a kid with special needs.

First of all, let me say that every kid and every family is unique. I'm not making any attempt to define a disability nor give advice on how families should deal with it. We all have our successes and failures in parenting and that is no different when dealing with a kid with special needs.

So let's begin with the obvious question - what is his special need?

Son17 was first diagnosed with ADHD (Attention Deficit Hyperactive Disorder). And trust me, he scored off the charts on the hyperactive part! But that was just the beginning. A few years later, as it was obvious there was more going on, his diagnosis was temporarily changed to PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). In other words, there was a lot going on but no one knew what. Eventually, that label was dropped. We returned to ADHD and added the diagnosis of Asperger's Syndrome. Eventually the doctors identified two more disorders - Obsessive Compulsive Disorder and Anxiety Disorder. And that is where we stand today - four disabilities all mixed together.

If you think that adding a new diagnosis is just like adding 1+1, then you would be underestimating the combined impact. An additional disability is more of a multiplication problem than an addition problem. Just imagine for a moment, a person with an obsessive, compulsive need to do something. The inability to do whatever they are driven to do can be extremely upsetting. Now combine that with the anxiety disorder. The degree of anxiety about not completing the task skyrockets. When he was younger, we watched Son17 scream and tantrum for hours simply because he could not get his action figure to stand up on the uneven part of the carpet. No amount of soothing or redirection or intervention would help. He would immediately return to the source of the frustration and anxiety. And he would repeat that process over and over, sometimes for days or even weeks, until the compulsive need to stand that toy up suddenly went away and would be replaced by a different driving interest.

What else has this jumble of disabilities brought into your lives?

For almost two years the only thing in his room was a mattress and a pillow. His hyperactive bursts of climbing furniture without the ability to make any judgments about safety, combined with his destructive tantrums turned all furniture into either a safety hazard or a weapon of destruction. It was simply safer to leave the room bare.

As he grew older and stronger, there were the doors broken by repetitive opening and closing or simply by being slammed. Holes punched in walls during tantrums fueled by fits of frustration and anxiety.

It was impossible to get babysitters once Son17 was old enough to do damage. For seven years, my wife and I never went anywhere alone together. One or both of us was always with him when he wasn't in school.

And his drive to do things combined with the lack of social judgment created problems in school from the very first year. In kindergarten, a curriculum was used to teach the letters of the alphabet called The Letter People. Each week a different Letter Person was introduced - from Ms. A with the Achoo sneeze all the way to Mr. Z with the Zipping Zippers. There was a picture of the Letter Person to color on Monday. A song to learn on Tuesday. And other fun aspects of the curriculum that Son17 just adored. He could barely wait till each Monday rolled around to meet the next Letter Person. Eventually, the wait became intolerable and he pilfered the entire curriculum from the teacher's desk. This was a first year teacher and she was horrified that this cute little kid would just steal things from her desk! Of course, Son17 saw nothing wrong with what he had done. He just kept telling us - "I had to see who was coming next". While we sympathized with the teacher and tried to explain to Son17 why this was wrong, we also had a great laugh over the whole thing in private.

But these snapshots don't tell you who Son17 really is. Those are just a few glimpses into some of the struggles in his life. But he can also be extremely charming and funny. He is more inquisitive than either of our other kids. He was reading and comprehending at a tenth grade level before leaving the fourth grade. He can be extremely compassionate and is easily upset when he sees other kids being teased or bullied - especially if the victim is another kid with a disability. And last spring he stood in front of our entire church congregation and shared his thoughts on spirituality, the environment, and his struggle to figure out "how normal do I have to be?"

The current movement among special needs advocates is to always identify the person first and the disability second. For example, a person with autism, not an autistic person. This language is intended to change other's view of people with special needs. And I'm sure that is a good thing. But we already know he is more than just his disabilities. The diagnostic labels, the test scores, the psychiatric evaluations and these few anecdotes do not make a person.

And yet, these disabilities will no doubt have the greatest influence in his life. For much of his life, he has been and will be defined more by what he can't do, than what he can.

And our entire family has adjusted to compensate for his needs and his deficits in more ways than we even recognize. We never decide to spontaneously jump in the car and go for a burger. He needs advanced notice. We didn't take vacations or stay in hotels for over ten years because his volatile behavior made that impossible. And anyone visiting our home would certainly wonder about the Lego's carefully arranged in the middle of the table during mealtime, the piles of books in odd places, or the plethora of "bouncy balls" - hard rubber balls that Son17 keeps all over the house as a tool to manipulate when he feels particularly hyper. But we barely notice these things any more.

For those of you patient enough to read this far, you still don't know Son17 any better than you would know someone else if you only had a few brief anecdotes from which to learn. This feels much like the parable of the five men who were blindfolded and led to touch different parts of the elephant. Each described what he was touching but no one described an elephant. And I feel like I've blindfolded you and you only got to touch the trunk. Defining a life is not easy.

I gave a presentation to some special education teachers a couple of years ago about being the parent of a child with special needs. One person asked me to summarize the experience in one word. That word would be "more". More doctors appointments. More teacher meetings. More mess in our house. More limitations on what we can do as a family. More medications. More specialists. More time alone because even our families, while somewhat understanding and sympathic, do not understand the disabilities and find it difficult to offer much help. More challenges for long term planning and long term care.

Son17 is a terrific kid. But he is also more.