Thursday, March 26, 2009

A special sort of anniversary

We interrupt this chronological story for something far more important at the moment ---

It was two years ago today, on Hollywood Boulevard at noon, across the street from the famous Chinese Theater, that I experienced a full-blown seizure, just two weeks shy of my 64th birthday. It was my first, and so far only, seizure, and no cause has yet been found. Most of the memories are still quite intense, although faded just a little.

We were on the first day of a family vacation, visiting our son who lived in Los Angeles, and traveling with one of our daughters and three grandkids. We checked out the handprints of the rich and famous and then went across the street to a crowded gift shop to pick up some camera supplies. I was immediately bothered by the flashing lights (strobe maybe??) and within seconds felt the need to get outside. On my way, I found that any object I looked at would break apart and/or jump to some other place in my field of vision. Nothing stayed where it should. It was creepy, but not nearly as creepy as when I started to feel both eyes roll back in my head. Somehow I made it outside and leaned against the building. That's all I remember until the EMT was gently questioning me before moving me into the ambulance. Some kind stranger must have helped me because I had fallen to the sidewalk and ended up with no bruises at all - just a very sore, bloody tongue.

I received excellent care at the nearest hospital and almost immediately found myself thinking about all the kids and adults I have known over the years who struggle with neurological issues. As soon as things started going whacky for me, I remember thinking, "This must be what the kids feel - how scary!" And then when I was released from the ER and told to avoid 'over-stimulation'---- I found myself closing my eyes as tightly as possible and covering my ears when we were in noisy places or there were bright lights or lots of color, etc. and then feeling very frustrated that it's really impossible to shut the world out, even though you feel a very strong need to do so. Also there is the feeling that your brain can play nasty tricks on you at any time, and you really have no control over any of it. Naturally, my thoughts then went to how I might feel if someone decided to put in place some sort of behavior mod program to deal with my anti-social behaviors - Now, that would really tick me off! As for the 'fun' things removed from my life - I recognized right away that going to crowded fun places had to be looked at completely differently. For a very long time afterward I immediately looked for a quiet area where I could feel 'safe' everywhere I went. This of course made me think of the kids we call 'runners' - they too are probably just trying to escape situations their nervous systems can't handle.

I have continued to receive excellent care back at home, and feel very fortunate that so far it seems to be an isolated event in my life. I do believe things happen for a reason. Maybe I needed to take better physical care of myself, and maybe I had a few more lessons to learn about the many kids who have been a part of my life. I certainly have a new appreciation for what they are dealing with - ALL THE TIME! How frustrating it must be to never know what your body is going to do, or what is going to set it off. How frustrating to be unable to enjoy the many activities that others do. And how frustrating it must be when others don't understand. They truly deserve not just our understanding, but our respect and admiration.

Friday, March 20, 2009

Special Education in the Early Years

During my coursework to become a special educator, I spent time in regular schools, where the special ed. classes were usually located at the end of a hallway, separated from the rest of the school both physically and figuratively. There were really only two groups of spec. ed. students at that time: "Educable" or "Trainable" mentally retarded. The first group received what is best described as a watered-down version of the regular curriculum and little or no opportunities to mingle with their more typically developing peers. The latter group (TMR) were believed to be "trainable" at best and thus were presented with a school day that focused on teaching them functional life skills and managing their various behavioral problems. Even as I type this, it pains me to put all of this into words - but I am simply trying to describe things as they existed in those days. I have heard elaborate theories about how we all do what we can with what we know and try to do the best we can with what is known at the time. I guess this is a good example of that theory.

I also was required to spend time in our local institution for children who fell below the cut-off point for TMR, or perhaps had serious medical or behavioral issues that made the level of care needed prohibitive for a typical family in their own home. The truth is that most parents of kids with more severe disabilities were strongly urged to place their young children in such an institution as early as possible. It was seen as the best thing for everyone involved --- the child would be cared for and the rest of the family could have a "normal" life at home. Many of the parents I knew in those early years told me their family doctors had recommended (very sincerely) that they not risk getting "too attached" to a child with disabilities; the assumption being that they wouldn't be with them for long.

In the institution where I spent most of my volunteer hours, I remember stark visions of a large room filled with metal cribs, and of course in each of those cribs a child lying helplessly and usually quite passively. In yet another huge room, there were all the kids with Down syndrome: linoleum floor, plastic furniture, and virtually noting in the way of stimulation (no TV, toys, books, or anything else!) The only ones who received any type of instruction were a few kids who had hydrocephalus and were transported very carefully in a sort of wagon to the classroom for maybe an hour of "school" each day. All children were fed, bathed, changed as needed, and from time to time given a small dose of staff attention - if an occasional compassionate staff member found time in their busy schedule.

There was at the time yet a third group of children with disabilities in all of our communities - those who lived at home, lovingly cared for by their parents but seldom seen even by their immediate neighbors. There were no day programs for them unless individual parents worked together to arrange and fund such a program - usually beyond the ability of families already stressed to the maximum by the impact of the child on the family - both emotionally and financially.

The term "learning disability" was not yet in use, and I am quite sure I had never heard the term "autism." This was the mid- to late- 1960's in Wisconsin, and I would assume across most of the U.S.

Tuesday, March 17, 2009

Those crazy coincidences

I had no intention of going to college. My dad had died when I was ten, my mother worked almost full-time and we were just barely getting by. Though college expenses were infinitely less back then in the 60's, we still had no money to send me - or my three younger siblings - to college. But the teachers in my high school were concerned. They kept telling me I was "smart" and had to do something with my life. One thought I should become a nuclear physicist, another suggested teaching gifted children. What they didn't know was that I was really good at memorizing facts and taking tests, but didn't really have any true understanding of the advanced math or science classes I was taking. And while I had played at being a teacher for as long as I could remember, "gifted" education had no real appeal at that time.

And then a very caring and wealthy relative stepped in and promised me a scholarship through the company he owned. Off I went - but very unsure at the time what it was I was studying to be. I took one education course, but found it extremely boring - and not at all challenging. The math and science courses I tried at the college level, on the other hand, were extremely challenging, but still of little interest or meaning to me.

I was sitting in a class called "Introduction to Mental Retardation" in my junior year, when the professor announced that a brand new program was starting up - to train teachers of the "mentally retarded." Funds were available immediately to anyone who was interested. In all honesty, it was the funds that interested me a whole lot more than the field, but I decided to give it a try - and the rest is history. I still disliked all the basic education courses, but found the field of disabilities totally fascinating. I earned my M.S. degree in what was called at the time "Behavioral Disabilities" and found myself one of only three fully certified special education teachers in the state.

Each of us could have our pick of where to teach, and at whatever level appealed to us. I had married and had a baby by that time, so I chose a school close to where we lived, and started at the elementary level, feeling most comfortable with young children.

That first class will always be very special to me. They taught me so much, ever so patiently, and I have been learning from my students ever since.

Saturday, March 14, 2009

Getting started

It doesn't really matter what the task is, the hardest part (at least for me!) is getting started. So here I go - I am enterting the 21st Century and starting the blog I have had in my head for many years now. My goal is to write at least once a week. Some topics will be long and reflective, others short and informative, maybe even a few humorous ones here and there. Most of all, it will be combination of my desire to help others learn from my mistakes, and my need to put thoughts into written form before I forget what it was I wanted to say. Topics will vary, but I can just about guarantee that most of what I write will have something to do with kids. That is what my waking life has been all about - and those few dreams from the time spent asleep I remember from the time spent asleep invariably have something to do with kids.

I welcome your feedback, and hope to improve the nature of the blog itself as I learn more about what this whole process is all about and how it can be used.

Welcome to my world! It's good to have you here sharing this space with me.