One Piece At A Time… One Day At A Time…
As I looked back over the last few years, there was no denying that our journey with autism had been a long and painful one, but, likewise, there was no denying that there had been many, many joys also and a much greater appreciation for even the simplest of treasures in life. A first glance, a first word, a first kiss… each smile, each step, no matter how small, had been so very cherished.
There were still so many pieces to my puzzle I needed to understand in order to help Zachary, but, I knew that if I persisted, each piece would eventually fall into place. My understanding of Zachary had increased so much in the last three years, and, as a result of that greater understanding, there was now much more joy and much less stress in my family’s life. Yes, we still had challenges to face, and yes, there were still many, many things I felt I still had to understand, but at least now, I understood enough of how my son’s brain worked to help him considerably in teaching him how his world fit together. Obstacles were now easier to identify and overcome. Each day, I continued to look for clues, in Zachary’s words and gestures. I knew they were there… and it was just a matter of time before yet another piece fell into place.
There were some things that were much less of a concern for me now – like spinning – but that Zachary still did – although to a much lesser degree. Even though less of a concern, I still found myself wondering – why – on so many issues as I lay on my bed as I so often did, thinking about this huge puzzle I had once only known as a word – autism.
The autism puzzle was one that had so captivated my life and that of my family. This disorder I had once so painfully prayed God would remove from my life, I now, with each passing day found more and more fascinating a puzzle to unravel. As such, even though things like “spinning” were less of a concern, I still pondered these issues in an attempt to better understand why it was these children behaved the way they did.
Spinning, with its motion and its integration of the parts into the whole, was an activity so many children with autism engaged in. As with so many issues, even though they were slowly slipping into the past, my desire to understand them was still very much in the present because I knew that understanding could so help the future of so many. And thus, even though some things I knew could eventually slip completely into the past, and indeed I had once prayed to have them become “just part of the past”, I now consciously chose to keep in the present. I wanted to understand autism and its many facets – and that included things like spinning – things I once would have been perfectly happy to leave completely behind if the behavior or issue ever completely disappeared in my son.
I knew all these things were somehow interrelated and as such, even though an activity in and of itself may be slowly drifting away, I resolved to try to remember all the pieces, past and present, because I very much knew that even those pieces slowly slipping into the past still held keys that, potentially, could unlock so much. I no longer looked at “just spinning” but looked for ways in which each piece fit into the whole, for ways in which all these things somehow fit together – because I knew – somehow – they did. All these parts to the puzzle fit together and were interrelated. There were no “isolated factors” that stood by themselves… all of it… had to somehow fit and that now made me look more closely for how these things could all be interrelated. For example, I knew spinning and colors both played a role in all this – but how were they related? Could these two aspects to autism somehow fit together?
As I considered “spinning and colors” for example, I remembered something I was embarrassed to say I had forgotten for so long. I knew light could be put through a prism and separated into the colors of the color spectrum – red, orange, yellow, blue, green, indigo, violet. What I had forgotten, however, was that if you were to take a circle and divide that circle into thirds and have one third red, one third blue, one third green and then proceeded to “spin” that circle, you would find that the colors “disappeared”. As that colored circle spinned, the red, green and blue were no longer visible, but rather, what your eye perceived was more of a white or light gray. Could this somehow play into Zachary’s fascination with spinning and colors? I did not know, but it certainly could be another possibility.
Of course, there were certainly things Zachary had spun that had only one color, and often, that color could be a rather “boring” color. And then there had also been “degrees” of spinning, at times involving very fast motion and at other times involving rather slow motion. To me, that indicated the fascination with spinning was very much tied to the motion itself. And then, there was also the issue of “the parts to the whole” discussed in my second book when I realized Zachary was trying to remove the parts of a wheel, and that when frustrated as he could not do this, he started to spin the wheel. There now seemed to be so many aspects to what had once seemed to be a simple activity – spinning.
Yet, although spinning and other pieces of my puzzle were not completely understood, at least what I had now come to understand in Zachary made it so that at least my world did not feel as though it were spinning out of control. I now understood enough in Zachary to keep things more in control and that allowed me to help Zachary more than I ever imagined I could. Granted, there were many things left to learn, but, at least now, I had enough to go on to help my son tremendously in breaking the code not only to language and communication – but, to life.
With each passing day, Zachary’s communication skills were improving. I had noticed, not very long ago, however, that Zachary was writing some of his letters backwards – a condition known as dyslexia. He really had not done this in the past – a few times – yes, but when I saw two errors in one word, needless to say, I was concerned. I had recently hurt my back and had not spent as much time doing homework with Zachary in the last month, and I wondered if that had contributed to this situation since he had been “away from homework” for a while. However, I also knew that many, many children with autism also had dyslexia and as such, this certainly was not something to “brush off”.
I wondered again how all this was related. Recently, as Zachary was getting ready for bed and he lay on his back on my bed as I changed his clothes, I noticed him looking at my ceiling fan. As the fan turned slowly, I asked Zachary why he liked my ceiling fan. I had asked him this question a few other times in the past as I tried so hard to understand the love of spinning in children with autism. There had only been one other time that Zachary had given me an answer to that question. In the past, he had answered that he liked “the wind”. On this particular night, when I asked him the same question, he answered: “forward”.
I knew Zachary had issues with direction changes. In the past, I had painfully seen that in our walks, in the fact that he almost drowned at the age of three when he had snuck out of camp at 10:00 pm or so and was found at the end of the dock, with a watered down diaper, holding on to the very end of the dock with just a finger or two, facing away from shore. I had seen this issue with “direction” in so many aspects of Zachary’s life. In the past, it certainly had also been something I suspected was at play with spinning also. I knew it had something to do with why Zachary used to hate seeing the VCR run backwards, it had something to do with why he screamed whenever we would make a change in directions in the car or whenever we put the car in reverse. And now, I was seeing an issue with the direction of things in Zachary’s writing of letters and numbers. Again, I knew all these things had to somehow be related. The only thing all these issues had in common was “direction”.
Just labeling “going backwards” when we put the car or videos in reverse had greatly helped Zachary. I knew labeling the proper direction for letters and numbers in writing would help also, but, now, I was truly beginning to suspect that one of the many critical underlying issues in autism had to do with processing of matters involving “direction” and “direction changes”. Letters and numbers, after all, involved motions that had many “direction changes”. This was all very new to me and now, I found myself with yet another issue to tackle. The question was – was it really a new issue - or just another shade of the same thing? I just could not help but think all this, once again, was somehow related. If that was indeed the case, then teaching letter and number formations, in my opinion, had to involved the use of arrows to show the proper direction involved for letters and numbers to be formed.
In the past, as I worked on “writing issues” with Zachary, I had noticed that providing references for each letter had always made Zachary much more enthusiastic when it came to writing. I had made practice sheets for writing letters and numbers and pulled those out for Zachary on a regular basis.
As we practiced letter and number writing, I came up with “tricks” to help Zachary remember how to write his letters. For example, an “A” was said to “look kind of a triangle with a bridge in the middle”. Although I had used some “left” and “right” in these reminders for letter writing, I would now include more of that given this recent issue with dyslexia, as I knew that additional distinction or qualifier would help him with this issue going forward. Examples of what I used for each letter and number were provided in the tables below. The short phrase(s) next to each letter or number was something I would say as Zachary wrote in order to provide cues for him in the formation of each letter. Again, I added a lot more “left” and “right” here than what I had used in the past only because I knew this would help Zachary in the future given he had a very, very good understanding of the concept of “left” and “right” as well as “up” and “down”, “top” and “bottom”.
Obviously, there were many, many variations to this. It was simply “the concept” I had wanted to present here.
I then did the same type of thing for small letters.
Again, parents could easily come up with their own “variations” to this. I had simply wanted to provide the “concept” here.
Such were example of hints I gave Zachary as he learned to form letters. Obviously, as Zachary’s interests expanded, these examples could change slightly to provide more vivid reminders. For example, lately, Zachary had discovered “mini-put”. Therefore, a small “b” could now look like a golf club. There were certainly countless reminders parents could use to help their children with letter and number formations. In my opinion, such associations had been quite valuable for Zachary as he learned how to write. Again, the “left” and “right” I added more of in the above examples as I knew this extra qualifier would now become quite important in addressing matters of dyslexia recently surfacing in Zachary and as such, I provided examples here so that any parent “starting fresh” who wanted to use some of the tricks I used with Zachary some idea as to how to possibly address this issue from the start in order to help with any matters of dyslexia that may surface in the future.
There was certainly no denying that autism had a new challenge at every bend. Yet, neither was there any denying that Zachary was making progress each day. Yes, there were definitely things that seemed like “steps back”, such as this recent issue with dyslexia, but there were also many, many steps forward. As a parent, all I could do was do my best to help Zachary and take each challenge one day at a time. Again, knowing the issues and what could possibly be ahead, in my opinion, certainly helped in planning “strategies” in order to address these issues as early as possible. I knew that many parents on discussion boards mentioned their children with autism had issues of dyslexia. I had made the mistake of thinking in the past this was a “non-issue” for Zachary given he previously had made his letters properly. That had been another error on my part. Obviously, if this was an issue for so many children with autism, perhaps all parents of children with autism should err on the side of caution and assume this was something that could very likely occur in their children and hence, address the issue right from the start in the teaching of letter and number formation. Again, for me, this would be another one of those - “if only I had known”. At least I knew what I had to do to help Zachary with this issue now. We would just have to go from there…
In spite of the new challenges, there certainly was no denying that Zachary was making progress. He was now more expressive than ever. Recently, when his sister Anika had taken his beach ball and was playing with it in the house, Fred and I could not help but giggle as we heard Zachary saying: “I’m jealous” as he asked Anika for his ball back. Of course, when an expression of emotion did not work well in retrieving his desired toy, “commands”, a form of communication Zachary knew to work rather well, such as “give me that ball”, were just around the bend. Zachary also loved music and on August 11th, 2003, the day before his 6th birthday, Zachary came to see me as I sat talking to his father in our home office and with a big smile on his face, he said: “Dance with me, mom”.
When we had first discovered Zachary had autism, I used to take him in my arms and dance with him to the music of Andrea Bocelli. This man was a blind tenor whose music I enjoyed tremendously. This particular CD was called Romanza. Neither one of us understood the words since they were in Italian. My knowledge of French allowed me to pick out a word here and there, but that was about it. Yet, Zachary, too, had always found this music so soothing. Now and then, as music played, I had always taken Zachary and danced with him and this had been our favorite music to dance to when he had been little. It was only recently that I had actually labeled for him what we were doing as “dancing” as I showed him how to move his feet and twirled him around. Granted, he was still very much an awkward dancer, but then again, so was I.
On this particular day, it had been pop music that played in our home when Zachary – for the first time – had asked me to dance. Anika had been in the kitchen, but somehow, she always kept an ear open for her brother and as such, we had all had the joy of hearing Zachary’s words as he asked me to dance. From the kitchen I heard Anika shout: “Did he say what I think he said? Did Zachary just ask you to dance?” I answered, “yes”, as I took Zachary’s hand and went with him to my bedroom where the music had been playing as I said, “let’s dance together”. In no time at all, Anika had joined us and the three of us joined in a dance as we all held hands. As with so many other precious moments, this had been something he had never done again – but that mattered not for now. The fact was – he had done it – on his own – at least once and hence, I knew that “reference” had been made and he had been able to properly apply it. Yes, autism had brought some very difficult moments to our family and I had no doubt there certainly would be more, but, there were now more and more of those golden moments too – moments like this that you come to treasure forever in your heart.
Indeed, where there once had, it seemed, only been tears – now, there could be joy again and a giggle here and there as Zachary, with each passing day, exposed the pearl that had for too long been hidden within. There was no doubt that he was now very much part of this world and that he enjoyed it tremendously. As his sixth birthday approached, and the state fair opened on the day of his birthday, we did the “countdown” to “scary rides”. I had taken Zachary to the fair last year and he had absolutely loved it. Atari had a software package called Rollercoaster Tycoon – it was among both Zachary’s and Andrew’s favorites. Although we had originally purchased that program for Anika, in no time at all, Zachary had also become an expert rollercoaster builder and there had been many a time when Anika looked over his shoulder at his latest creation as she asked Zachary: “How did you do that”? Zachary certainly had a talent for building roller coasters that looped and twisted in a seemingly endless manner. The ups and downs of roller coasters, I was happy to see on the computer as opposed to having those roller coasters be part of my daily life. I knew there would certainly be more roller coasters ahead for our family as we continued our journey through life with autism, but at least for now, the ups and downs had settled a little and the hills no longer seemed as insurmountable. Staying focused and on track had been absolutely key for our family as we all worked at “saving Zachary”.
One day at a time… one hill at a time… one bend at a time. Certainly, the ride had been very rough at times, and it may be again in the future, but, the ultimate key to the autism roller coaster of life, in my opinion, was to hang on tight to – our child and each other – and – to never lose hope…