Zachary’s Progress – In Michigan (August 2000 – Present)
Almost every book I had read indicated that autistic children needed a “routine” and that taking them out of the “routine” was too stressful for them. That may be true to some extent but with everything going on in our family the summer of 2000, it was no understatement to say that Zachary had no routine at all. If anything, he strived on change and that was a good thing because life was full of change. We made several trips to Canada. There were three weeks of constant contractors with changing work crews showing up at various times (up to five vehicles at a time) at our house as we prepared it for sale…the painters, the window washers, the window “fixers” (a couple were not opening properly and so we had those repaired), the deck cleaners/ stainers, the squeaky floor fixers, the linoleum layers, the carpet layers…and then all the potential buyers who came to see our house, many on several occasions...it seemed never ending. There was the “living in the basement” for three weeks, the packing up of everything we owned, the constant showing of the house to potential buyers, the moving of all our possessions into a truck, and the moving away from a familiar house and neighborhood to a new one...with a few trips to Canada mixed in there. If that was not “changing routines”, I do not know what was!
In spite of it all though, overall, Zachary did very well during this time and continued to strive. He liked to see “what those people were doing in our house” and at times, it was difficult to keep him out of their way (as it would have been with any three-year-old). He did not care about the “routine”. He was fascinated by all the “goings on”, curious, as any “normal” child would be.
We decided to move to the Upper Peninsula of Michigan, closer to our family in Canada. When deciding on a home, the realtors in the towns we considered all asked if we were interested in “lakefront” property. Given our near drowning episode with Zachary that summer, the answer to that was always a quick, “absolutely not”. We had looked at homes quite close to the border but did not find anything that would really work for us and so we settled for something three hours from the border. On August 24th, we drove north to the Upper Peninsula, ready to close on our new home the following day. No one had informed us that the county fair was going on and that there was not a hotel room to be had for at least an hour outside of the area. So we drove an extra hour (eight hours in all that day).
That night, we slept in a hotel (another break in routine) and Zachary was fine. The next morning we got up, fed the children and by noon, headed out, driving the one hour back to our new town. On the way there, I saw something on the road. Then - again, I saw it...wild turkeys...and they were huge. I was driving and told Fred, “did you see that...the turkeys on the side of the road”? Fred had this look on his face that I perceived as disbelief, so I said, “What, you don’t believe me”? He replied, “No, I’ve never seen one and I am just thinking I probably won’t get to see one again”. He thought he had missed his only chance to ever see a wild turkey. It turned out that we saw over a hundred during that one hour drive. How funny!
Our “closing” in Illinois was handled by our attorney. Procedures began at 3:00 p.m. They were not complete until around 6:00 p.m. as a result of complication on the side of the buyers of our house in Illinois. We had informed the realtors for our new home that we would not close on this one until after the first closing had completed earlier that day. We were all exhausted to say the least… throughout all of this, we had both Anika and Zachary with us in the car, driving around, waiting on the call from our attorney in Chicago informing us that the first closing was complete and that we were now able to finalize the second. We were in “closing procedures” until about 7:30 p.m. By 8:00 p.m., we were in our new house. This was a newly built home. Oddly, the house was very hot - and try as we may, we were unable to get the thermostat/furnace to shut off...in August! It was extremely hot and muggy in there. The only way to get the heat to turn off was to throw the breaker for the furnace. We spent approximately the next hour or so feeding the kids and unloading a few critical items from the moving truck - the king size mattress we would all be sleeping on and a few blankets for the night.
Then, around 9:00 p.m. all the fire alarms started sounding...and it was loud. Our fire alarms in Illinois were both carbon monoxide detectors and fire alarms in one. We did not know what was going on and right away, since we could neither see nor smell any fire, my thoughts went to carbon monoxide. Was the fact that we had turned off the furnace turned off some ventilation of some kind so that carbon monoxide had accumulated in the house? We knew nothing about that stuff...all we knew was that all the alarms were blasting. Within a matter of thirty seconds or so, we were all in the car.
I called the realtor from my cellular and explained the situation to him. I told him he had to get someone out to the house to figure out what was wrong as soon as possible and that we would be sleeping in a hotel that night since we could not take any chances. The realtor felt so bad about the entire situation, knowing what a long day we had had, and with an autistic child, that he called the contractor out that very evening. At 12:30 a.m., that same night, the realtor came to our hotel room. Since we had been in our car for most of the day during the Illinois closing procedures and chose that as the place to stay to wait for word that everything was clear with the closing of our old house, the realtor knew our car from having spoken to us next to it on so many “updates” during the day. My attorney from Chicago would call the Michigan realtor’s office to let us know how things were going in Chicago and the realtor would inform us of any incoming calls via cellular. We drove around town and went to a local park to keep Zachary quiet and came to the real estate office on an “as needed basis” until we were finally ready to close on the new house.
That night, the realtor tracked down our car by going to various area hotels to see if it was there. He finally found the right hotel and called us from the hotel lobby. I met him there and he explained how two wires were just barely touching in the thermostat and that was what had prevented it from shutting off, and that it was now fixed. He also explained how in Michigan, the law required that all new homes have fire alarms “wired” to the fuse box. When Fred threw the breaker for the furnace, it activated a timer of some kind and one hour later the alarms sounded. I was informed that this was how the alarms were set up. OK, fine, I was too tired to discuss anything else. I was more upset for Zachary than the fact that we had to sleep in a hotel when we should have been in our house. Zachary’s hearing had always been very sensitive to sound and those blasting alarms did not help his situation.
We slept at the hotel that night and returned to the house in the morning. Within a week, everything was pretty well unpacked and put away. That summer, Zachary’s “routine” had been non-existent, and in spite of it all, he did exceedingly well and adjusted to the new house almost overnight without a problem.
The first weeks in our new house went by quickly. Not long after we moved there, I had a horrible nightmare. I dreamed Zachary got up during the night and went outside. In my dream, it was winter and very cold and Zachary had almost nothing on, a diaper and t-shirt only. When I awoke, I told Fred about the dream. Given Zachary’s near drowning as a result of his sneaking out of camp at 10:00 p.m. in Canada, we both agreed to get additional locks. I called a locksmith and had him install deadbolts on my doors. They were low enough for Anika to reach, but well out of Zachary’s reach for a couple of years at least. The locksmith informed me that it was against fire code to have the locks so high because my children needed to be able to get out by themselves in case of a fire, should both parents be overtaken by smoke inhalation. Our new house was a ranch and Anika knew how to open the windows and get out should a fire occur. We had the “blasting fire alarms” too...and Fred, being from a farm background, still got up around 4:00 a.m. to get work done because those were the best hours of the day for his “quiet time”. Because of Zachary’s constant “waking” in the first two years of his life and also now due to the fact that he was autistic, Fred and I were both light sleepers.
Although Zachary usually slept through the night now, I explained to the locksmith that the odds of my child sneaking out in the middle of the winter and shutting the door behind him, automatically locking it, were much greater and a greater possibility than a fire. Zachary had already snuck out once at night and almost died, I was not about to risk it again. The locksmith understood. He had me sign a waiver stating his company would not be liable in the event of a fire and installed the deadbolts. He put one on the front door as well as one on the door leading to the garage. Before we knew it, September was over and October had rolled in with all of its color.
Prior to moving, Anika had asked whether or not we could have a dog “at the new house” and in October, I finally broke down and decided to get one for her. We lived on 1.3 acres and that was plenty of room for a dog. Our yard was at least six times the size of the yard we had had in Illinois. Unknown to Anika, I got up one morning and started looking on the Internet. Soon, I found exactly what I was looking for, an Australian Shepherd pup, male, three months old - about six hours from where we lived.
I showed Fred the printed article, with picture of the pup. Of course, Anika wanted to know what I was looking at and as soon as she realized what it was, she was overcome with excitement to say the least. I phoned the lady who had advertised the pup on the Internet. It was still available. Anika and I got in the car and headed out. Most people would never drive six hours one way to buy a dog, but this dog was a special type of dog. Australian Shepherds were farm dogs that herd cattle. If they did not have a herd to protect and gather, the family became their “herd”...and they protected it! Anika insisted it be “her dog”, but my intent in buying this particular dog was just as much for Zachary as it was for Anika. Lucky, the dog that had barked to warn us when Zachary snuck out of the camp was an Australian Shepherd. These dogs were among the most intelligent of all dog breeds. As herding dogs, they had this instinct whereby they immediately went into action when a member of the pack went astray. Well, it would not be long before that dog proved to be the perfect dog for the kids.
Within a week of buying Patches, we started taking him to the park next to Lake Michigan in the area where we lived. This was a beautiful park and we spent a great deal of time there with Zachary. During that first week we had Patches, on one of our park outings, Zachary broke away from me and started running off. The dog was still just a pup at three months old and all the kids at the park loved to play with him. We had moved to an area of the park where there were fewer children and Zachary had broken away from me and was running toward the lake – of course! The pup immediately went after him, grabbed Zachary by the arm of the jacket, pulled him down to the ground gently to stop his escape and laid on top of him. This was the dog for me! I was thrilled. Later, as Zachary tried to break away again, the dog would position himself perpendicularly in Zachary’s “run path”, blocking him from going any further.
My sister-in-law had told me how her dog acted as a school crossing guard whenever her daughter came home. My sister-in-law lived just outside of town, and there was a big curve in the road close to her house. Due to lack of funding, the school bus crossing guard program had been eliminated. Each day, when Lucky heard the bus coming, she would run out in the middle of the road, in front of the bus, wait for Jamie to get off, make sure she heard no cars coming and, then “escorted” Jamie across the street when it was safe to do so. Another time, at my in-laws camp, my sister-in-law had a woman come up to her saying “what a great dog she had”. She had been watching Lucky for close to a half hour.
There was a main road not too far from camp, and a smaller side road led to the camp itself. The side road had a little dam below it, but you could not see it from the road. My niece and nephew often played by the dam. On that particular day, this woman observed Lucky and could not believe her eyes. This particular side road was only wide enough for one car to fit comfortably on it. When Lucky heard a car coming down the side road, she ran up and literally parked her butt in the middle of the road, forcing the vehicle to come to a stop prior to arriving at the area in the road where the children were playing below near the dam. Lucky then walked across the area of the dam, the car following behind, and then, as soon as the car had passed the area where the children were playing, she would get out of the road and let the car go. Australian Shepherds were great dogs for anyone who had children... but since they were herding dogs you had to have a yard that was large enough for them to run at pretty good speeds since they needed to burn up that energy. This was not a dog you could keep tied up all day...they tended to get cross if you did that. These dogs needed at least ¾ of an acre to run. Less than that did not seem to be enough.
On a trip to Canada once, Zachary was falling asleep in the car and his head was really slouched over. Patches was laying on the seat beside Zachary. When he noticed Zachary’s head going further and further down in front of him, Patches placed his neck area underneath Zachary’s head in order to provide support or a “pillow” for Zachary. Another time, he saw Zachary was losing his balance while playing outside and he rushed in front of him to break his fall. Like I said, these were great dogs for kids and this breed, in particular, was fantastic for children with special needs. Although Patches always wanted to play with Zachary, it would take Zachary a long time before he would actually initiate anything when it came to the dog, but, sure enough, while on that same trip to Canada when Zachary’s neck was strained as he slept and Patches provided a “pillow”, Zachary would later reach over and actually “pet” him for the first time. We were all thrilled. Patches quickly became a “star” addition to the family.
My determination to bring Zachary into “this world” continued in the beauty of the Michigan fall. Zachary was now identifying a lot of shapes, including stars. I had put stars on Zachary and Anika’s bedroom ceiling, the kind that glowed in the dark. I literally put about one thousand of those stars on their bedroom ceiling. Of the one thousand stars or so on his bedroom ceiling, I had put some in specific patterns. If you looked closely, you could see a big balloon, a happy face, a cross, a huge rainbow, a heart, a circle (Zachary’s favorite shape), and the big dipper.
One night, as I was getting ready to put the children to bed, I made a point to show Zachary the stars in his bedroom and then took him outside, to show him the stars in the sky. You could tell he understood… stars were these shinning things in the sky. In Illinois, due to all the lights of the city, he had never seen them. In Michigan, he had never noticed them simply because he was always inside, in bed, by the time they came out. With the fall, however, as the days got shorter and the nights longer, the stars came out earlier and so now, he actually saw them. His little eyes just glowed as he looked up at all those twinkling lights. After that, when I would put him to bed, I would say, “Look at your stars” and he would look up at the ceiling, and that was often enough to calm him down for the night... not always, but often.
It was also around October of 2000 that Zachary started to put more words together. He used to talk with only one word, unless it was a short phrase or “idea/concept” that naturally went together...like “See you later”. But now, for the first time, he was starting to put words together that did not necessarily belong together. He was starting to say things like “yellow circle”. His pronunciation of words continued to be fantastic, even for “big” words like “caterpillar”, “alligator”, “elephant”, “rhinoceros”, etc. He was singing more now. We would hear him singing “Twinkle, Twinkle Little Star”, “I’m a Little Tea Pot”, “Baa, Baa, Black Sheep” and a bunch of other songs he now knew. Although he did not always know all the words, he would sing them the best he could and then kind of hum the rest under his breath. When Anika noticed him singing, she would sing too, as we did, always encouraging any new, positive behavior. Before we knew it, it was November.
It was during the month of November that I took Zachary to the park and for the first time, he actually showed interest in another child. There was a little girl there, about three years old. She was hidden behind her mother so that we could not see her, but we could hear her crying. Zachary actually extended his neck to see her, wondering what was wrong. That was another one of those “golden moments”... a small sign of social interaction, of “noticing” other children...another glimmer of hope. Whereas I had missed so much in his behavior when he was younger, and missed so many of the signs of autism, now, I noticed everything about his behavior, down to the most minute detail. Each day, I had more and more to be thankful for. By the end of November, Zachary could count all the way up to 57...in perfect order.
Zachary was making great progress and with the holidays approaching time went very fast. Anika was now on a swim team. She went to practice twice a week and had swim meets almost every weekend. It was our time together. We camped out in school gymnasiums throughout the Upper Peninsula, as did the other parents during swim meets...only I made it a point to really take time to hug Anika while we rested on her sleeping bag between events. She loved the extra attention...without Zachary... and I loved that time to be “just with her” too! I was so thankful to have her for a daughter.
Anika was a blessing in and of herself, but she was also a fantastic sister for her brother, and just as determined as I was to “save Zachary”. Often, she would ask me if I thought we were doing a good job of “saving Zachary” and I told her yes. She would ask if she was helping a lot in “saving him” and I always made sure she knew her help was invaluable. There were many times she would help us to just keep an eye on Zachary and keep him entertained. With Zachary, an extra pair of eyes in the room was always handy. He always got into everything. More than anyone, Anika could get him to play and run after her. She was a constant ball of energy and could easily keep up to her brother whereas Fred and I were more prone to getting discouraged and tired at times...and yes, we “felt” our age a little more (Fred and I were both in our late 30s).
Although the winter months were the most difficult since it was harder to go outside and play for any length of time, it would be during the month of December 2000 that I noticed a lot of change in Zachary.
Like most families in America, we celebrated Christmas. That year, I had only put the tree up in December. Zachary had one particular video that had a Christmas tree in it. One day, as we were sitting there watching this video, he walked right up to the Christmas tree and pointed for the first time ever and said, “Christmas tree” clear as a bell. Anika and I were sitting nearby and had once again been lucky enough to witness another leap forward. Fred, unfortunately, was in the office, but he was thrilled when we told him about it. That was on December 23rd, 2000. On the 26th of that same month, he pointed his finger to six or seven things and called them out as he touched the computer screen for each object. I had previously purchased “I Spy” books, by Jean Marzollo, and now, he pointed to everything I asked him to point to. “Show me the star”...he pointed to it, “show me the pig”....he pointed to it...”show me the turtle”..... he pointed to it....everything he knew, he pointed to. These books became a great opportunity/tool for teaching him about new things and for increasing his vocabulary. Of course, he still had “his days”, but more and more, it was toward the end of the day that things got bad. Mid afternoon naps were now out and Zachary often grew quite tired by night. Fred and I were always relieved when it was finally time for bed.
By now, Zachary loved to brush his teeth. At first, he did not like it but I found the trick to brushing his teeth was counting them as I brushed them. He loved anything that had to do with counting. As time went on and the months past, you simply had to say “brush teeth” and he would run to the bathroom and open his mouth. That came in very handy for dental visits. I often wondered if the toothpaste had gluten but I did not think so since he did not seem to react to it in any negative way. I used Crest toothpaste. Regardless, I never put very much toothpaste on his brush…barely smearing the middle section was enough. I recently started to brush his teeth without counting them out loud. Although he found it a little stressful, he was ok with that.
Zachary also loved to take a bath at bedtime... actually, at any time. He simply loved water. Often, I would put Epsom salt in his bath since many books I had read said it helped calm autistic children. As he took his bath, I often made bubbles for him. Again, that was something he loved to do at any time. Big bubbles, little bubbles, any bubble was fun to him. Of course, the bath often “woke him up” and he thought he should be allowed to resume his “activities” rather than get to bed.
Zachary has always been a softhearted child. You need only speak firmly to him and he started the old “quiver lip” and broke out crying. Once, when my brother came to visit, Zachary got a hold of a pencil and was running away with it. My brother was afraid he would hurt himself and in a louder than usual tone, said “no”, but it was not a shout or anything... simply a man Zachary hardly knew giving him a stern “no”. He stopped dead in his tracts and started the lower lip “quiver lip” thing as I called it…then he broke out in tears. My brother had only been worried for his safety. He did not mean to scold Zachary in any way. Regardless, often now that was all it took, a firm, “get to bed” and Zachary ran for the covers. There was plenty of time the next day to resume fun activities.
Christmas time was always a special time for Zachary. I had purchased a carousel that played Christmas songs when Zachary was still a baby. Each year, around Christmas, I would take it out for the kids and put it in their room. Now, Zachary loved that carousel more than ever. He liked the mirrors, the lights, the turning motion, the music. I still use it to “de-stress” him. When he is having a bad day, I take it out and let him play with it.
At Christmas in 2000, Zachary also received a little wind up train. It had a key in the side and you just had to wind it up and let it go on the floor. It would go all the way across the floor. Zachary loved it. As the days went on, more and more Zachary’s play with toys was appropriate. He actually pushed cars along the floor instead of just tipping them over to spin the wheels. The need to spin had decreased significantly. Sure, it was still there, but much less so. Whereas before Zachary could spend hours spinning if you let him, now, he spun a few minutes, often a few seconds (ten or so) and moved on. On December 31st, 2000, another leap forward. Fred was always the one who made pancakes for Zachary from a gluten-free mix. On that day, he asked Zachary, “Do you want pancakes?” and Zachary replied, “No”. It was the very first sign of actual “conversation” taking place.
Although I had read that winters were supposed to be worse for autistic children, here we were in December, and Zachary was making great leaps forward. He was very discriminating. While playing a game once, I had stated something was a circle. He corrected me and said “oval” and he was right, it was an oval. That month, I also spent a lot of time teaching Zachary the phonics for each letter. By the end of the month, I would say a letter and he said the sound for each letter I called out. Soon December of 2000 came to an end, and with the start of the new year came so much more hope for Zachary. Fred and I were slowly getting our son back, and Anika, the brother she so dearly loved. Zachary was still a long way away from being free of autistic behaviors, but the grip autism had once had on him was slowly being released.
January of 2001 brought still more good news. While watching a video on January 1st, 2001, one that had the word “apple” in it, Zachary looked as though he was starting to sound out phonics, like he was attempting to read the word. When he went to bed at night, I often laid next to him until he fell asleep. Many times, he said things like “green circle” while he laid in bed, something totally unrelated to anything I was saying to him...it was simply “something to say” for no reason at all. He said it over and over and over...almost as though that was what he was “seeing” in his head at that moment. On one night in particular, I was absolutely amazed. He started with the letter “A” and said, “A is for apple, B is for bed, C is for cat” and so on. He did the entire alphabet that way, giving an accurate word for each letter of the alphabet, ending with “Z” is for zebra”. He had videos that took him through the alphabet like that but the amazing thing was that then, he started over, using different words for each letter, most words different than what he had used the first time through, and again, the word was accurate for each letter. At times, he said all his shapes before going to bed, “circle, square, triangle, rectangle, star, heart, hexagon, octagon, pentagon, trapezoid”...it was as if he was in “neural overdrive”, “ordering” his world while he was still awake, putting things “in order” before he went to sleep. It was the wierdest thing I had ever seen.
Although Zachary made great progress in certain areas, he was still well behind in others. He still was not potty trained and social skills were still very, very limited. At almost three and a half there was no desire to use the bathroom. I had bought a potty training video and although he liked it a lot, still nothing. I used to sit him on the potty, sometimes for quite a while, hoping that if he “saw the stuff” in the potty, he would make the connection. I took a game of chess and put all the pieces on the board, on his lap as he sat there. Within fifteen minutes, he could identify and say the name of each piece... a pawn, a queen, a king, a bishop, a rook, a knight and upon request give me the proper white or black piece. I played games with the pieces, blowing a particular one off the board completely. Zachary thought that was absolutely hilarious. I even found games to do with the plunger to keep him entertained.
I actually moved a television set and VCR into the bathroom to help pass the time. Sometimes, I think he got a little too comfortable in there, or had a little too much fun. We also blew bubbles and that was a favorite too. In spite of the games and the long hours of “training”, still nothing. I could not believe it. How could he be so intelligent in so many areas and yet be so behind in others. The whole potty thing was most discouraging. I was so tired of changing diapers. I tried, and tried and tried to potty train Zachary...for over six months. Still, no desire whatsoever to use the bathroom on his own. I finally gave up, figuring he would learn how to go on his own. I had put so much work into this and it was a total failure. My sister-in-law confided in me how her son, now eleven, still needed a diaper at night. I was so discouraged! Depression was actually starting to “set in”. I actually started including “God, help Zachary be potty trained this year” in my prayers. During that time, Anika received a chess computer game and now Zachary came to really enjoy watching her play chess on the computer...that was about the only positive thing that had come out of all this.
February was a typical February. We had lots of snow and shoveling helped distract us during the difficult winter months. All I pretty well did that month was try to potty train Zachary and work on phonics. Soon, he started to actually be able to read a few words. I was absolutely amazed. Again, how could a child be so intelligent and yet have such difficulty with a simple thing like potty training?
March was soon upon us. I spent March break in Canada helping my sister with her nine children. She had gone through a serious depression and I wanted to give her a little bit of time to herself. So, while Fred visited with his family, I babysat ten children. Zachary always did better with me and I felt he was too difficult to leave full time with my in-laws. My in-laws had a long hallway in their house and Zachary would spend quite some time just running up the hallway, then running down the hallway, running up the hallway, then down again…over and over and over. This was my son, and it was hard on me. I could just imagine how difficult it must have been for his grandparents, in spite of how much they loved him. Anika loved to play with her cousins and so she too was with me although I took her back to the farm to visit too.
Fred took Zachary a couple days that week, but it was difficult to work on a farm with a special needs three year old to watch and so, primarily, Zachary stayed with me. I was thrilled to get back home after that babysitting job! I loved my nieces and nephews dearly, but that had been exhausting on me. The youngest of my sister’s children was fifteen months old and she had a very serious diaper rash. The best thing for that was to keep her bottom dry and “aired out”. Zachary had himself had some bad diaper rashes in the past, but nothing this bad. I slept my niece bare butt in a crib all week and I slept next to her, on the floor with Zachary. Being a light sleeper, I would hear her whenever she wet. So, two or three times a night, I got up and changed her bedding... and got at least one load of laundry going during the night. When my father-in-law saw me come into the house the night before we returned home, he said, “You look like you haven’t slept in a week”. He was right.
We finally did make it back home that last week of March... and I think I had never been happier in my life to see my own bed. I slept from about 4:00 p.m. until the next day. The next morning, I got up and started working with Zachary again. Needless to say, he had not received as much attention as he was used to in the last ten days or so. On March 23rd, I gave Zachary a full banana...a rather large one. Prior to that, I had limited him to half a banana. The hand flapping reappeared! The more Zachary learned phonics, the more he could make out words and sound them out. Here he was just a little over three and a half and already, by March 28th2001, he could read the following words: zero, zebra, bat cat, mat, hat, sat, sun, fun, dog, frog, hug, kiss, mom, dad, banana, tomato, log, bus, jam, ham, can, van, man, ten, men, bug, tree, pot, hot, star, moon, leg, egg, pop, mop, run, food, rat, cup, up, top, cap, cot, got, get, pig, wig, big, bib, bed, gum, bag, tap, fox, box. He was now counting to 100 perfectly. It was exciting to say the least. Luckily for me, Zachary had always been a “hugger”. As I tried to make up for the attention he missed earlier in the month, it seemed I hugged him more and more each day.
With April and May came the sun and still more progress. The month of April got off to a bad start. On April 1st, 2001, I awoke at about 6:00 a.m. to Zachary who had come into my room, thrown himself onto his knees on the floor, and with his butt between his legs as he sat and rocked himself back and forth, his eyes closed and his arms holding his head, he blurted out, over and over again, “It’s ok...it’s ok... it’s ok”. I was in absolute shock. What was wrong? I did not know but I rushed over to him, put my arm around him and repeated gently, “It’s ok, it’s ok” as I picked him up and brought him to bed with me. “It’s ok” were words I had always used to calm Zachary down whenever he was having a difficult time and now, he was using them to calm himself down. That was the only time something like this had happened since we had changed his diet. I wondered if he had somehow gotten a hold of something he was not supposed to eat, but I really did not think so. We were always overly cautious and cleaned everything constantly, counters, floors, etc. Anyway, he calmed down fairly quickly and went back to sleep as I hugged and “sniffed” him. “Sniffing” him on the neck always calmed him down, and it still does to this day...do not ask me why, I simply know it does!
During April, I used Zachary’s need to order things to teach him basic living skills. As I peeled potatoes to make him French fries, I called him over to help. I pretended to drop some of the peels on the floor. He picked them up without any prompting from me and put them back in the little pile of peels on the kitchen counter. Each time he picked some up, I reinforced his behavior with a “good job helping mom peel potatoes” or “thank you”. “Good Job” and “Thank You” were big reinforcers for him and I had used them for the past year. Slowly, I asked him to do a little more. I would say, “put the potatoes in the bowl”, or “put the peels in the garbage”. At first, I noticed a need to put the peels in the trash one at a time. After a while though (maybe a couple of weeks later), he figured out that that was not too efficient and started to put the peels in the trash by the handful. If he dropped some, he was always careful to pick them up and dispose of them properly. Then I had him help me with rinsing the potatoes. Zachary never missed an opportunity to play with water. He now responded to multiple simple commands: “Let’s go walking”, “let’s put your hat and coat on”, “let’s put your shoes on”, “let’s go to the park”, “let’s go to the store”, “put that in the trash”, “give me a hug”, “give me a kiss”, “show me your bobo” (a French slang for the area that hurts).
April went by fast. Since we had failed to rake the mountain of leaves in our yard in the fall, I undertook that project in April. Fred helped me best he could. We had 1.3 acres and most of it was “cleared” but we had literally, over a hundred trees on the property...mostly oak. It took me about eight days of raking, almost non-stop to pick up those leaves. Never again would I do that. It was during one of these raking days that Zachary was almost hurt very badly. He had “no fear” or concept of danger. He did not perceive danger the way a normal child would. We now live on a very small side street...there are only four houses on our street and traffic was light to say the least. We were all in the front yard, raking one day. The very front of our property had a small hill. We had been in front, raking for close to an hour. Out of nowhere, Zachary decided it would be fun to run down that little embankment. From the corner of my eye, I saw a car was coming, and although we lived on a very quiet street, this car was driving a little fast. I yelled, “Zachary, NO!” He stopped. The car was about fifteen feet from him by the time it stopped also. That was all I needed - we were getting a fence!
That project would be the next one we tackled. We looked on the Internet, comparing the available options and tried to figure out what it would take to do the job ourselves. We had decided to go with a six foot, chain link fence. We finally decided to go with a local company and have it done. They could not put the fence in until the first of June -that was the best they could do. It turned out that given other developments in April, we would pretty well be home bound indoors anyway. In late April, we noticed charges against our bank account that could not be explained. Fred and I both held a Masters of Arts in Finance and were very much on top of finances in general. So, when these particular charges came through, they jumped out at us right away. Our bank could not explain it. We knew right away the withdrawals were fraudulent and it did not take long for us and also the bank to figure out we had been victims of identity theft. Having caught it right away, we suffered no financial damage whatsoever, just a great shaking of our confidence in the financial systems of this country. I documented everything. My file was close to an inch thick and unfortunately, that was all it became for our institutions... another file with no resolution whatsoever as to how it happened or how to prevent it from happening again! We spent the better part of May protecting ourselves from any further financial violations by calling major credit reporting agencies and having a fraud alert placed on our records, etc.
Before we knew it, spring was almost gone and summer would quickly be upon us.
On June 3rd 2001, Anika did her first communion. June of 2001 would be a month to remember. June 7th through 10th, our new fence went in. What a relief. I could finally be outside with Zachary and not have to chase him as he tried to run off into the neighbors’ yards. I had latches installed, high up, where he could not get to them. They were the kind that automatically locked the gate when you went out and swung the door shut. So, for Fred, Anika and I, they were very convenient. We could all go in and out easily but Zachary could not. He needed the help of someone to get out. He was never outside alone but now, he was restricted to our back yard and that allowed the rest of us to enjoy the outdoors a lot more. We made a lot of campfires in our back yard. Luckily, we lived in a town that allowed them since many residents had over an acre of property. Last fall, whenever we made a campfire and tried to get a little quality family time, we found it would not be long before Zachary would get up from his camping chair and start running around our “fire pit”.
Needless to say, when that happened, as it often did last fall, the quality family time was over and either Fred or I would take Zachary into the house for a bath. There were times when he could start the “fire dance” after just five minutes of lighting the fire, and at other times, he would go up to a half hour or so...it varied. Thankfully, this year, the “fire dances” were pretty well all gone. Zachary now sat in his chair and enjoyed watching the flames or he would go and play in his sand box located further away in the yard. In 2001, we found his love of water to be more of a problem than fire. June was a trying month, but there were definitely some joys.
It was during the month of June, that we got another great breakthrough. Zachary started to “pretend”. He had not done that before. I had a turquoise plastic cup and turquoise plastic ball that happened to fit perfectly on top of the plastic cup. One morning, while I was still in bed, Zachary took the cup and put the ball on top of it. Then, he went up to Fred who was working in the office and he said: “IIIIIIIIICCCCCCCCCCE CCCRRREEMMMM CCCCOOOONN”. Fred had no idea as to what Zachary was saying. Zachary tried again. “IIIIIIIIICCCCCCCCCCE CCCRRREEMMMM CCCCOOOONN”. Again, Fred looked at him with a puzzled look. Not able to figure out what Zachary was saying, Fred came into the bedroom with Zachary and asked if I could make it out. “Zachary, show mom”, I said. There came those words again, “IIIIIIIIICCCCCCCCCCE CCCRRREEMMMM CCCCOOOONN”....only this time, mom knew exactly what he was saying. I repeated, “Ice Cream Cone... very good Zachary”. I took the cup and ball from him and pretended to lick the ice cream cone. Zachary thought that was absolutely hilarious. He spent much of his day trying to make us all take some of his cone.
Fred told me later that when he failed to understand what Zachary was saying, Zachary looked at him and said it slower. Fred told me how Zachary must have thought “he was stupid” because the more he tried to communicate it, and the more Fred failed to understand, the slower Zachary pronounced it for Fred. Not only had Zachary pretended he had an ice cream cone, but he had initiated the play with Fred. Zachary did more pretend play as time went on. He pretended to be a frog, to bark like a dog, meow like a cat and so on. Soon, he could do just about any animal sound you asked: a cow, a rooster, a pig, a duck, a donkey, a sheep, and so on. Zachary also loved the movie “Toy Story”, both the original movie and “Toy Story 2”. Both of these movies had been made by Walt Disney Productions and Pixar. He started saying, “To infinity and beyond”... just as Buzz Lightyear did in those movies. It was funny. Yet, he was still very far behind in social skills and I knew that. There were other areas to work on too.
Many times, our “work” was outside. We took walks all over the place. Zachary had always loved the outdoors and weather permitting we spent a few hours outside each day. The fenced in yard was wonderful. June 11th, however, we found two deer ticks in our yard. The area where we now lived was polluted with deer. We were only two miles or so from a national forest and the deer, at night especially, walked through many of the city streets freely on the edge of town. Some of my neighbors had commented that they had seen up to ten deer in their back yards. They were nice to watch. Prior to having our fence, we would occasionally see a deer come within ten feet of our house. Now that we had the fence, they were prevented from coming in. Although the deer were now “out”, the deer ticks were still very much “in”.
Not wanting anyone in the family to get Lyme disease from the deer ticks, Fred and I resolved to clear out the rest of the bush we had in our yard. Zachary’s lack of pain sensation as we had seen in the past made us fear that even if a tick bit him Zachary would either show no discomfort or be unable to tell us about it. That was all we needed! We cut every shrub inside the fence – a section of property 161 x 200 feet. Only trees remained. Anything less than six feet high was gone. Our muscles were in serious pain throughout that project. It took us close to ten days to complete that project. We brought in about ten truckloads of topsoil in order to seed a new lawn where there had once been bush. Talk about a project.
Fred spent days moving the dirt from where the trucks had dumped it in the front of the house, to the back yard, a distance of approximately two hundred feet – one way. We ordered two truckloads at a time, and Fred would take one wheel-barrel load at a time to the back yard. Each truck had eighteen cubic yards of topsoil. Fred literally created little “paths” on the lawn he went back and forth so much. I think the topsoil company wondered how we moved it all so fast. I told Fred he should write: “Fred’s Excavating” on the side of his wheel-barrel and show it to the truckers. Fred moved dirt for hours – each day! Through it all though, he kept his sense of humor and “sang the cheer” he came up with to encourage himself. “One wheel-barrel, two wheel-barrel, three wheel-barrel, four... you can do it... more, more, more... talk and load, just give me a hand...you can do it, we know you can”. The first time he sang it, sweating as he loaded more dirt, I found it so funny that I just about wet in my pants.
The entire project would take close to a month. With the brush clearing project out of the way came another trip to Canada. Fred spent the rest of the month and half of July there, helping his parents with haying on the farm. I would come back and get Anika the last week of June. She spent about two weeks there and would come back when her cousins (my sister and her children) came to visit. I kept Zachary with me in Michigan to continue working with him. I took him to special events at the park and went for walks with him along the beach on several occasions. With the return of summer, I was looking forward to finally teaching him how to swim at a local beach. We had just returned from one of these special summer events at the park. It was Sunday, June 24th, 2001. Zachary was exhausted and so I let him play on the computer in the living room, one of his favorite activities.
I thought I would write a quick email to Fred and Anika. I was not out of the living room more than two minutes when I heard a thump in the living room. Zachary had decided that instead of playing at the computer, he wanted to mark up the computer table with a lead pencil. He had climbed onto the table to do that and as he marked up the table, he failed to realize how close he was to its edge. He fell onto the television stand next to the computer table and then onto the floor. I rushed to the living room when I heard the thump. Zachary was standing there, in front of the table, crying. In retrospect, I was surprised I did not faint from what I saw.
I knew right away he had broken his left arm...it looked awful. Between the wrist and the elbow, right in the center of those two joints, his arm had a very odd, almost forty-five degree angle. His arm looked much longer than normal – kind of like the length of an extra hand had been added to it. The bone had not gone through the skin, but I knew right away his arm was broken. I quickly grabbed the phone and requested an ambulance. Then, as I was speaking to the dispatcher, I realized it would be faster for me to take him in myself. The hospital was about ten miles away. I told the dispatcher to forget the ambulance but to call the hospital to tell them I was on my way in with Zachary. I gave the dispatcher Zachary’s birthday and headed out the door with him as quickly as I could. I was a total wreck; tears were now flowing on both our faces. I felt so bad. I only figured out what had actually happened after I came back home from the hospital and saw the markings on the table. I had not noticed them when it first happened... all I could see was Zachary’s broken arm.
It was approximately 4:15 p.m. At the hospital, the nurses were nice as were the doctors. They kept telling me not to blame myself, that this happened all the time with kids, that you could not watch them 100% of the time. That did not help...I still felt so horrible. I explained to the hospital staff that Zachary was mildly autistic and that he had no insurance. On two or three occasions I asked for an estimate of the costs. I had been informed that Zachary required general anesthesia. Even though the bones had not come through the skin, with little ones like him, the doctors stated they preferred to put them under completely. I felt so guilty over the whole incident - I wanted Zachary to experience the least pain possible. He had broken both bones in his left arm and the breaks were about an inch apart. He was asleep for about fifteen or twenty minutes while his bones were reset and cast in surgery.
Even though the procedure was a non-invasive procedure, with the skin not needing to be cut at all, the hospital still categorized this as “surgery” since a bone surgeon/specialist had to reset them properly. I called Fred in Canada to let him know what had happened. As I sat there in the waiting room, I thought back over the past year and how we had been through so much... the autism and all that it had involved, the near drowning, the near hit by a car, the identity theft, and now this. When was life going to get easy again? I picked up the Bible on the table next to me and started reading the section on Psalms. My eyes first fell upon Psalm 102...”Prayer for an Overwhelmed Saint”. I laughed and cried at the same time.
I began to read, “Here my prayer, O Lord, And let my cry come to You. Do not hide Your face from me in the day of my trouble; Incline Your ear to me; In the day that I call, answer me speedily...” As I read, a horrible thought came over me. I knew that thousands died each year from general anesthesia...would Zachary be one of them? I looked down at the Bible again, and once again looked for comfort in its words. I scanned the pages...Psalm 55, “Cast Your Burden On The Lord”... “Give ear to my prayer, O God, And do not hide Yourself from my supplication. Attend to me and hear me; My heart is severely pained within me, And the terrors of death have fallen upon me, And horror has overwhelmed me. Cast your burden on the Lord, And He shall sustain you;”. I glanced over to Psalm 57...”Prayer in the Midst of Perils”...”Be merciful to me, O God, be merciful to me! For my soul trusts in You; And in the shadow of Your wings I will make my refuge, Until these calamities have passed by. I will cry out to God Most High, To God who performs all things for me.” The more I read, the more I believed. Zachary was in God’s hands I told myself, not man’s. He would protect my son - I trusted Him to do so. Zachary would be ok. About ten minutes later the doctor came in and told me Zachary was in recovery and that I could go see him. From the bottom of my heart, I said, “Thank You God!” to the Lord who had protected my son. I got up, and then thanked the doctor also. I went to the recovery room. Zachary was awake but tired. We were taken to another room upstairs where we would stay for a couple of hours just to make sure he was fine. The doctor saw no need to keep him overnight. Finally, after another exhausting day, we were able to go home.
Within a week or so, I received the first bill. It was close to $4,000.00. The bills for Zachary’s broken arm would total about $5,500.00. Fred and I could not believe it. Most of the charges were for the hospital, not the two doctors (surgeon and anesthesiologist). I asked the hospital how they could justify such charges. I had close to $600.00 in charges just for nursing care. The nurses had not been in Zachary’s actual presence more than an hour or two. I did not know any nurse who made $600.00 or even $300.00 an hour. Then there were charges for surgery. Zachary had been put in a completely sterile environment for this procedure. I told the business office that this was a non-invasive procedure... that the skin had not even been cut... that this procedure could have been done on a sheet on top of a manure pile and Zachary would have been fine. Putting him in a completely sterile environment for this procedure was not necessary. The business office person then stated, “Well, if it was my child, I would want the best.” I told her again, “IT WAS NOT NECESSARY!” ... and this time I added...”HOW CAN YOU SLEEP AT NIGHT CHARGING PEOPLE SO MUCH FOR SIMPLE PROCEDURES LIKE THIS?” There was no response. She then offered to put me on the “payment plan”. I stated that I did not need “her payment plan”, that I could afford to pay for my son’s procedure...and again, I stated, “How can you sleep at night”? I hung up.
Zachary went to bed around midnight. I spent the better part of the night watching over him, making sure his arm stayed elevated to reduce any swelling. He instinctively knew to do that though....both during his sleep and his waking hours. Zachary had to have a fiberglass cast on for approximately six weeks. Summer had just started, and now he could not even go in the water. If he did, it would ruin his cast and he would have to get another one. Life had just gotten a lot tougher. I had to keep this child away from all water for six weeks...a child who loved to play in water...outside, at the kitchen sink, in the bath, at the park.... everywhere! How was I possibly going to do it? I just had to - there was no other option. I was not about to pay a fortune for another cast. In the morning, I pulled out the bag the hospital had given me. It had Zachary’s clothes in it from the night before. There had been another casualty, a special t-shirt I had bought for Zachary while we still lived in Illinois. I had purchased it at a truck stop about a month after finding out that Zachary had autism. I had done a quick weekend trip in April of 2000. It was upon my return home that I had found this t-shirt in a truck stop where I had stopped to get a bite to eat. On it were the words: “Be patient with me... God isn’t finished with me yet!”
My son’s special t-shirt had been cut from each sleeve to the neck and down each side to remove it from Zachary the night before. I looked at it and cried. Why was life so difficult now? Oh well, there was a sweatshirt he did still have though, and that one was just as “fitting” for Zachary. It was his “Bugs Bunny Tasmanian Devil Sweatshirt”. Given all the things he destroyed over the last year, that one also was a “sweet memory” shirt. Although I missed seeing the “Be Patient...God Isn’t Finished With Me Yet” shirt, like with so many other things, I found it useless to attach myself very much to anything because the odds of it being damaged or destroyed by our little “Tasmanian devil” were pretty high. As I cried a little over the ruined t-shirt, I thought again how difficult the last year had been. Even a simple thing like a haircut was a major undertaking. Although I had usually cut Zachary’s hair with a pair of scissors in the past since he did not have that much of it, when it started to thicken and grow quickly last year I decided to have a barber do the job. I was terrible at cutting hair, as Fred could then attest to (he used to ask me to do it once in a while), and so, I figured I had to go with a barber and get Zachary’s haircut very, very short. It had been April of 2000.
I had taken him to a barber with thirty years of experience. Zachary hated any type of “motor” back then and so I knew even hair clippers would scare him... although I did not realize to what extent. I explained to the barber that Zachary had autism. I told the barber, “You have two minutes...”. Then I held Zachary while the barber hurried to cut his hair with the clippers. That thirty years of experience paid off, in two minutes, the barber was done. Even though it did not take long, Zachary was still in tears. That was his first and only trip to a barber. I decided once again cut his hair myself. Most times, now, I cut Zachary’s hair while he slept...and, over time, I actually did a pretty good job. As I had looked at Zachary resting in the hospital the night before, playing with his hair, I realized he was due for another haircut.
The following week, my sister was supposed to come visit me...and she was an expert at cutting hair. She had nine children, seven of whom were supposed to come visit. Due to Zachary’s broken arm, I thought about calling her to cancel, but, she had gone through a depression that year and she had so anticipated this trip as had her children. I decided not to cancel. On June 29th, I headed up to Canada with Zachary, one more time. I stayed a day or so at my in-laws before returning back home with Zachary, Anika, Patches (our dog that had been in Canada with Anika), my sister and her seven children. The two vehicles followed each other. I think my in-laws must have thought I was completely nuts for undertaking this project. While we were there, Zachary was Zachary. The broken arm did not slow him down too much. Feeding him still consisted of basically chasing him around the room and putting food in his mouth. My father-in-law always commented that Zachary should eat at the table. I simply replied that this was far down on my list of priorities - that I was just happy to see him eat... then the discussion was usually over. But, he was right. Zachary eventually needed to learn to eat by himself. So I started working on that too.
In June, at least, I had learned something that did come in handy. My sister showed me how to cut Zachary’s hair and how to do it in a way that kept him entertained. It was so simple. All I had to do was give Zachary a bowl to hold and I counted the “clumps” of hair as I cut them and put them in the bowl. Zachary loved counting and so that was the trick to keeping him quiet and still while I cut. This brought a sense of “order” to the process of cutting hair.
I found that with Zachary’s “need for order”, it was always best to let him finish what he was working on, no matter how insignificant it seemed to me, prior to taking him on to the next thing. I found that to be true in almost everything. If things were not exactly in order, he got very stressed out. Everything had to be in its place. At times, that made even the simplest tasks quite difficult. For example, I remembered that back in January of 2001 while taking Zachary for walks we barely got twenty feet away from our property before he noticed something was “out of place”. A snowplow had gone by to clear the roads after a snow storm, and Zachary noticed that there were little chunks of snow on the street. Of course, to him, they belonged on the snow bank with the rest of the snow. He proceeded to try and put every single “stray” chunk of snow back on the snow bank. There were literally dozens of snow chunks along the road. After about half an hour of that, needless to say, I could no longer take it any more. We had only walked about thirty feet from our property...so much for the enjoyable walk. We then headed back to the house. Zachary was in tears because I had pulled him away from his “unfinished work” with the snow chunks.
From the start of our battle with autism though, as much as I could I allowed him to finish his tasks before making him “go on” to something else. I usually took the extra time needed. If he had to throw all the shoes in the closet before going for a walk, I would let him do that. If he felt the need to put all the sticks in our yard in one pile, I would let him do that. If he felt he had to pick all the dandelions he saw while on a walk, I would let him do that. Eventually, he came to realize himself how time consuming that was and on his own, he stopped doing many of these “complete the task” behaviors. He no longer had to put all the chunks of snow back on the snow bank - he did not have to pick up all the rocks or sticks, or dandelions, or flowers. He, himself, came to the conclusion that it was futile to try to do these things because there was just “too many of them” to “completely finish the task”. I think he first gave up on doing these “complete tasks” because he simply tired out. Perhaps then, he noticed “nothing bad had happened” from not “completing the task” ... he just came to see that some things, you simply cannot do...and that it was ok.
It was also in June that Zachary started to play with the telephone. He picked it up, said, “hello... goodbye” and then hang up. Of course, it was no time before he figured out the buttons were fun too!
July had finally arrived. On the third of the month, Zachary had a follow up visit for his broken arm. It went well. His bones were healing nicely. On the fourth of July, the kids were all out, running through the sprinkler. Of course, Zachary saw them from the window and wanted to go in the water also. Although he hated eye contact, he had a way of begging with those little eyes of his...it always made me melt. I debated, should I let him? I knew the doctor had strictly advised against it...and I could be facing needing a new cast if his got wet. I thought...I could get around that. I took two kitchen trash bags and one at a time, put them over his cast and made a couple of good knots at the top of his arm, close to the shoulder, so that the cast was “doubly” protected but not so tight as to prevent proper circulation. Then, I let him out. I made sure we moved the sprinkler several time so that the grass/mud did not get too slippery for Zachary. I kept telling him to “go slow”...and for the most part, he did. He particularly liked just standing above the sprinkler and getting wet that way as the jets of water moved back and forth. That was a huge blessing as it minimized any falls from running. Looking back, I do not know if I could do that again...that too, involved, yet, more stress. I was surprised I had not somehow died from a heart attack with everything that went on this past year.
After about ½ hour, Zachary had had enough... he wanted to go in. When I got to the garage door, while still outside, I took off his loose t-shirt and his diaper. He was completely nude. No one was around other than my twelve-year old nephew, Frank. Inside, my sister and some of the older kids had locked the door leading to the garage from inside the house. We could not get in. Frank and I started knocking on the door, saying, “Open the door”.... out of nowhere, Zachary loudly chimed in with “I’m naked!”. Frank and I just looked at each other in disbelief. Had we heard what we thought we had heard? Frank was the first to say, “Did he say what I think he said?”. We HAD both heard it...clear as a bell. I did not know where Zachary had picked that up, obviously he must have heard it at some point in his life and he obviously knew exactly what it meant as he used the phrase in a proper context. Still more proof that Zachary knew much more than he ever let on. To this day, he has never used that particular phrase again. That night, on July 4th, I took my sister and her children, Anika and Zachary to see the fireworks over Lake Michigan. We had a perfect spot and the children all enjoyed it tremendously. Although it was not the first time Zachary had actually been taken to a fireworks display, it was the first time he actually enjoyed it and marveled at all the colors blasting in the sky.
With the warm summer nights, we decided to put a tent out for the kids. It slept six. I did not let Zachary sleep in it but he did get to play in it during the day. He was thrilled to be in there to say the least.
It would also be in July that Zachary started to actually ASK for what he wanted. Prior to that month, he had limited himself to repeating words and identifying objects. The first time I noticed him actually asking for something, Zachary and I were in the car and on our way out the driveway to the store. I heard him say, “water”. I was going to keep backing up, but then it hit me that for the first time, he was actually ASKING for something. I stopped the car and went in to get him a cup of water. I wanted to reinforce his “asking”, to let him know that if he asked for something, I would give it to him. Well, after that, he was off to the races as far as “asking”...although primarily only with one word commands.
On July 10th, Zachary said, “I want milk”. He finally started to use small sentences... primarily commands again for what he wanted. The two weeks with nine children to care for in the house went fairly well. The thing that was particularly great about that time was the fact that it forced Zachary to be in the presence of a lot of people, most of them children. My sister’s three youngest children, ages four, three and fifteen months were constantly getting “in Zachary’s face”. No matter what he played with, they wanted it too. That created a little bit of “tension” for him, but he adjusted rather well. Sure, he yelled out a scream once in a while, but, for the most part, he did ok. We explained to the children that they needed to “help Zachary play” because he was not used to playing with a lot of other kids and they were more than willing to comply. They kindly offered their toys and shared with Zachary. Zachary was not particularly big on sharing. I loved having them around to “force him” to interact. He had to start learning these skills.
July 13th was my brother-in-law’s birthday, and since his wife and children wanted to be home with him on that day, we headed out early in the morning...back to Canada, again. I visited with my in-laws and another one of my sisters for one day. That was the first time my father-in-law saw Zachary sitting at the table and feeding himself with a spoon. I could tell his grandfather was happy to finally see the progress in that with Zachary. Although my son was almost four years old, this was a skill he was only now learning and because of the broken arm, I still did not know for sure whether or not he was left handed or right handed – he always “switched hands” when eating, picking things up, etc.
Zachary was starting to say a few short phrases he had heard so many times. Things like, “How are you?” to his grandfather as he came in from outside, or “See you later”. He had told that to his grandfather as we were leaving to head back to the US. The funny thing was that he then added, “Come back soon”. Tantrums were almost non-existent. Zachary still had a tremendous need to burn excess energy though and being on the farm always provided a nice opportunity to take him for a walk. Anika showed him how to feed the horses grass. The huge draft horses were behind a fence, and still Zachary and Anika were both less afraid of them than I was. Fred, Anika, Zachary, Patches and I headed back home the next day.
My father who was in Canada, also visiting family on the same weekend, agreed to bring my eleven year old niece and her nine year old brother back to my house on his way back to home. Again, two cars followed each other. During his short visit to my house, I showed my father how Zachary could now read certain words on a chalkboard. We all cheered as Zachary read the words. Any kind of cheering became a great reinforcer for Zachary. He was so proud of himself and loved to please us by showing his new skills.
I kept my niece and nephew for most of the summer in order to help my sister. This too, proved “most challenging”. To say my niece and nephew did not get along with one another was a great understatement. They fought constantly, and that added to my exhaustion. But, I had promised my sister I would keep them for the summer in order to help her out and I was not going back on my promise. As often as I could, I took the three older children swimming, almost each day. Zachary stayed at home with his dad during those outings. I took them to tourist areas, to the state fair, to as many places as possible to make their summer fun. I insisted they read two hours each day, as did Anika. I had them read a children’s encyclopedia and then tested them on the material. In addition, I made them work on the computer, on educational software. They hated the fact that I forced them to read each day, but too bad, if they were spending the summer at my house, they were going to read. The girls pitched the tent I had bought Anika for her birthday on July 27th. I had given it to her early so that they could all enjoy it throughout the summer. July finally ended and August 2nd had arrived...the day Zachary’s cast came off.
I had warned the doctor that Zachary did not like motors and drills and that it might be difficult to keep him still. In anticipation of that, the doctor requested the help of another man to help us get the cast off. All in all, it went fairly well. Zachary finally had his arm back. I asked the doctor, “So, he’s fine now... he can do anything he used to, right?” The doctor looked at me and said, “Well, his arm is about 80% healed at this point. You’ll still need to keep a really good eye on him for the next four weeks to ensure he does not fall and re-fracture it...that’s a common occurrence”. I could have died right then and there... another four weeks! Well, at least Zachary could now come swimming I thought... that should be safe enough. I took him swimming as often as I could. The park district had placed a big slide in the water for the summer. For Zachary, it was perfect. There was only about two feet of water at the bottom of the slide. He absolutely loved it. When he had enough with swimming, he would simply say, “All done”. That was my cue to leave. The older children did not like the fact that how long they stayed at the beach depended on a four year old. Zachary had turned four on August 12th.
Even though he was only four, Fred and I both felt as though we had invested ten years worth into that child. My sister-in-law had bought him a pair of pants for his birthday. They unzipped at the knee and turned into shorts. They were loaded with pockets, something Zachary loved. They were great for holding rocks, acorns and other special items he found during our many walks. Summer finally came to an end and near the end of August I went alone to take my niece and nephew back to Canada.
September was now upon us and with that month came more progress. One morning as I was sitting having coffee, I realized that I had never actually taught Zachary “his name”. Sure, he responded to “Zachary” but he did not identify that as a “name”... I had never labeled it as such for him. Knowing it was important for him to be able to answer the question, “what’s your name?”, I worked on teaching him that during the month of September. I started with the question, “what’s your name?” and then I would answer, “your name is Zachary, my name is mommy, the dog’s name is Patches, your sister’s name is Anika.” Then I asked him his last name. I made a game of it, using the dog’s name, I would say, “Is your name Zachary Patches?” That made him laugh. He knew it was not.
Finally, within a couple of hours, he knew his entire name, although, when asked, he still made a game of giving me the wrong answer... answering “Zachary Patches” as he burst out laughing. I then tried to teach him the concept of age. That was a more difficult one for him to grasp. I said, “How old are you?” and I answered, “Zachary is four years old”.... and I followed up with “Zachary has four candles”. He remembered the four candles from his birthday... he loved candles... and blowing them out. When asked when his birthday was, he knew to say August 12th. That one was easy enough to teach him. It was also in September that I noticed Zachary’s toe walking had almost completely disappeared.
For the first time ever, he also picked a bouquet of wild flowers. In the past, he would pick flowers and always pull the flower part off the stem. Now, he actually picked a bunch of flowers and put them in a vase (a plastic cup) when we got home. He then set his flowers next to him as he worked on the computer. Every once in a while he still pulled the tops of the flowers off, but he was definitely learning that a bouquet was nice too. That same day that he first picked a bouquet of flowers, we had seen a little girl in the distance. When Zachary got close to her, he said, “hello”, and then he simply kept walking. He had finally acknowledged another child.
In October, we worked on yet other new things... days of the week and months of the year. I had a laminated poster with the days of the week on it. I took Zachary’s hand and went down each day, slowly saying each day out loud, “Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday”. I did that twice. Zachary repeated them as he took his hand and went down the list. He did not simply know them from the poster though. When I took the poster away and asked him, “What are the days of the week?”, he rhymed them off, one at a time, in perfect order. That was all it had taken. He had an amazing memory. The next day, I figured, ok, now let us try months of the year. I thought for sure it would take at least a week to teach him those. Since I did not have a poster for the months of the year and using a calendar was not working out (he wanted to flip the pages constantly), I took a sheet of paper and put a marker in his right hand, hoping that was his preferred hand. To this day, I still did not know for sure if he is right or left-handed... he switches off. Anyway, I guided his hand as I proceeded to write the months.
I wrote January in one color, February in another...and so on...all the way through December. I knew Zachary was a visual learner and thus, I wanted him to have the months written out in front of him to help him learn them. I then read the months over with him a few times. Each time I said one he repeated it. In no time, he took his hand and pointed to each month as he read each one down the page. I then took the sheet away to see if he remembered them. The first time through, he forgot a couple, but in no time, he knew them all, once again, in perfect order. It had only taken him a couple of hours to learn the months of the year.
In October, I, myself, also came to understand something else quite clearly. I had purchased fifty coloring pencils and a dozen various colored markers for Zachary. Zachary had never shown any interest in coloring. That was a skill I now wanted to show him. Try as I may though, he still showed no interest. All he wanted to do was play with the pencils and markers on the floor, and, yes, sometimes on the walls or kitchen cabinets too. I had been careful to buy only washable markers and the pencil came off easily enough. With everything we had gone through as a family in the last year, if there was one thing I had learned it was not to get too attached to material possessions and not to “sweat the small stuff”. After an hour or so of trying to get Zachary interested in the task of coloring, I gave up. I went into our home office to talk to Fred. I was so discouraged. I explained to Fred how Zachary simply wanted to “play with the pencils”, scattering them all over the floor, aligning them by placing all “pointed tips” together and all “bottoms” perfectly next to one another.
As I said that, it was like I was hit by a bolt of lightning. Every time I had tried to introduce a new learning tool, be it flash cards, books, marbles for counting... anything, Zachary always needed time to “play” and “touch” them first. He used to stack all the flash cards rather than show any interest in what was on them, same thing for the books. A stack of books, or flipping through all the pages had always been more interesting than what the books actually had in them. The same had been true for computer programs. If there was an “arrow” to go forward (as in a “book” on computer where you had to turn the pages with a mouse click), he liked to “turn all the pages” instead of stopping to see what was on them.
I now knew that for each new thing I introduced as a tool, I had to give Zachary the time to get acquainted with it by allowing him to touch or play with the new item until the “newness” had disappeared. So, that night, when I went to bed I told Fred (who was always up before me) to give Zachary the pencils to play with first thing in the morning. It took three or four days before I could actually sit down and use pencils “as pencils” rather than “toys” or things that were “nice to scatter, align, or touch”. I now saw how this would definitely be another reason any intelligence testing of autistic children could be so difficult and misleading, at least for Zachary. Anything new first had to be made “familiar” to Zachary before he even considered using it “appropriately”. He went through an almost “ritualistic” familiarization process...stacking, spinning or aligning new things best he could. That had, in a way, also been true with his toys. New puzzles could not be used as puzzles until the pieces had first been “stacked” one on top of the other, then scattered. Flash cards could not be read until they had been stacked one on top of the other, then scattered. New cars could not be used as toy cars until they had been flipped over, and the wheels spun endlessly. Everything went through some kind of ritualistic familiarization process. Once the “newness” was gone, the new tool introduced could be used for its intended purpose.
After a few days of letting Zachary play with the pencils, I finally noticed he spent very little time with them any more. The physical newness of the pencils was gone. I then sat him down at a table, put a pencil in his hand and started to make letters. The newness was now in the actual tool and how it was used, the various colors they made, etc. I could now ask Zachary for a specific pencil color and he gave it to me. I used it to color. Then, I asked him to pick another one, not telling him what color to take. As he selected one, he told me the color and handed it to me. Soon, I was giving him the pencil, instructing and assisting him as to how to hold it properly in his hand (we alternated because I still did not know for sure which hand he preferred) and helping him color in the coloring book. Finally, the task was interesting in and of itself and he enjoyed it.
With the beauty of fall colors, the walks outside increased and became more and more enjoyable as I pointed out the various colors on the trees. On one day, while out for a car ride, an absolutely gorgeous rainbow appeared over Lake Michigan. Zachary had always been told about rainbows, but, in the past, when I had tried to show him one, he never really seemed to see it. This one was different. There was no missing it. As we came down a big hill toward the lake, there it was, right in front of him...a perfect rainbow...one end of the arch to the other, over Lake Michigan, and the various color spectrums were quite thick. This was no tiny rainbow. It was huge and it was gorgeous. When Zachary saw it, his eyes just opened up. “A rainbow...” I said. He finally understood what a rainbow was and that these things actually existed in real life. I tried to explain to him how it was there because the sun was shinning on the raindrops in the sky. I did not know if he grasped that, but I did not care. He had finally seen a rainbow!
In October, we also noticed that Zachary now enjoyed more fascinating videos. He no longer limited himself to videos that “labeled things”. He now enjoyed videos that had storylines. He started selecting the videos for his viewing pleasure by himself, or telling us which one to put in when he noticed the one we had in our hands was not the one he wanted to watch. He loved Walt Disney’s “Winnie the Pooh” series, “Tarzan”, “Jungle Book” and so on. He laughed at funny scenes and it was great to hear his laughter. On October 11th, Zachary looked me directly in the eyes and said, “it’s ok, it’s ok...”, kind of like it was ok to look me in the eye. He still had a hard time with eye contact, but he was improving and slowly there was a little more of it. I practiced eye contact by saying, “look in mommy’s eyes” and if he did, I praised him. We did everything we could to encourage eye contact and spark his interest. Since he liked circles, I asked him to look at the circles in my eyes. Eye contact was still difficult though, no doubt about it.
We continued to find new games. One of his favorites was the “non-sense color game”. In this game, we called out something out of the ordinary and tried to “out-do” the other person’s “non-sense color item”. For example, I called out something like “purple cat”, Zachary answered “green dog”, I called “orange turkey”, he called “pink horse”, and so on. Although this may seem ridiculous, what it did was actually stimulate Zachary’s imagination by prompting him to imagine those items. I knew most autistic children had a very difficult time with “pretend” or “imaginary” play and this was one fun way I found to stimulate him to imagine the unexpected or “non-ordinary” and develop his creativity. In a funny way, it helped take the “order” out of his world by allowing the unusual to come in.
Another game we played was based on Fox Video’s Dr. Seuss’ Green Eggs and Ham. I used the “would you, could you eat them” concept to teach Zachary more words. I said, “would you, could you...on a telephone pole” as I pointed to a telephone pole, he answered with “would you, could you...on a tractor” and on and on we went... “on a quad-motto, on a skateboard”, etc., etc., etc. for close to half an hour at times. It was another way to stimulate his imagination and increase his vocabulary at the same time.
With the use of more words and the newly found communication skills, Zachary was now asking for what he wanted more often. When he was hungry, he came around and said, “spaghetti”, or “ice cream, or “cookie”, “cup cake”, “bacon and cocos” (“coco” being a slang for “eggs” in French) - all casein and gluten free items, of course. I found that if we did not respond right away to his demands, he used more words. For example, Anika had once locked herself in her bedroom to work on a craft. She did not want Zachary coming in for fear that he would destroy her artwork. Zachary came knocking at her door and yelled, “open door”. She did not answer. From the office next to Anika’s room, I then heard, “open the door”...and then, “open this door, Anika”. Fred and I just looked at each other and laughed.
With November, came another interesting development. For the first time ever, Zachary used slang. Fred had been trying to put a video on for him. As he fast forwarded through all the previews at the beginning, blocking Zachary’s view, Zachary said, “Whatchya doin’ ?” Zachary also started to “correct” us now also. After lunch one day, I told him I had to wash his spaghetti face. He chimed in, “spaghetti and ice cream face”. He was right, he had eaten both, as was clearly evident from his smirky little face. I simply responded, “yes, spaghetti and ice cream face”.
Zachary also understood the concept of danger now. When he saw a car coming, he rushed to my side. When he practiced “walking on logs” in the backyard (a few trees left in four foot sections that were downed for the fence installation), he said to himself, “be careful...”, he understood that fire was dangerous also, although he loved candles. I had a small candle I lit for him once in a while. I allowed him to admire it in the dark but was always careful to say, “Don’t touch- just look”. The first time I did that, his eyes just glowed and he had a smile from ear to ear. Of course, blowing it out was fun, too. But, again, I made a point to say, “hot wax” as I showed him the melted wax in the candle.
Everything has a lesson in it... every walk, every trip, every video...everything. In November, I taught him that after lunch, you put your dishes in the sink and now, he often did it without a reminder. When he ate a banana, he now automatically threw the peel in the trash. I still did not like to give him too many bananas though because I still found they increase hand flapping and the “push your forehead along the floor” behavior. I was beginning to work on sequencing with him....”eat your spaghetti first, then ice cream”.
He still had a hard time with the concept of same or different. He seems to do ok with it at times, but not always. He could easily help me unload the dishwasher and put all the big spoons together, the little spoons together and so on, but when asked to show me which two items were the same or which one was different in a book, he did not seem to do that well. So, I was not 100% sure he really knew that concept at this point. Of course, he may very well understand but just be playing his “wrong answer game” again. I was not sure on this one. He understood the concept that five cents equals five pennies. He was starting to understand basic addition and subtraction also. I still tried to come up with new games whenever I could. One of the latest was my “attack roll”.
Zachary had always loved to throw my folded laundry on the floor if I failed to put it away as soon as it was folded. I started having him help me fold dish towels. One time, I noticed him “rolling up the towel”. I took it and started “attacking him” with it. As we played, I called it “my attack roll”. He thought that was hilarious. Now, I fold the towel in two, and he often makes the roll himself.
Zachary also started to converse a little in late November. When his sister told him, “get up Zachary” one morning, he replied, “I want to sleep”. Whenever I encouraged him with something new, I always sang my little song, “you can do it, you can do it, you can do it....I know you can do it, yes, I know you can do it”.... when trying new things, Zachary would sing it to himself, “You can do it, You can do it, You can do it”...at times, even using the correct pronoun, “I can do it, I can do it, I can do it...”. Slowly, we were making progress.
Each month, each day, had its ups and downs. With steps backwards came steps forward. Some weeks were much harder than others. We were now in November of 2001 as I completed this book. I noticed slightly better use of pronouns this month. If he fell and hurt himself, he usually said, “are you ok?” or “are you alright?...much as I would have said to him. Once, after he fell, I heard him say, “I’m alright”. He was finally also learning how to dress himself now. I had made him too dependent in that regard, never forcing him to do it. I simply got tired of doing that for him. So, now, we practiced that, too. As he sat on the floor, I gently threw him his pants and told him to put them on using both hands. I did the same thing with his socks. He still hated doing it by himself, but, if he tried, he could. He knew how to put his hat and mittens on as well. Boots were still a little hard for him, as was his shirt, but that was coming along too. Although he can not actually put the two sides of a zipper together, he was always eager to zip one up. He still hated wearing anything but sweatpants. At this point, this fell in the “not that big a deal to me” category although I would have to work with “different clothes” this year.
Zachary had indeed made great progress in the last year and a half. He rarely had tantrums. His little fits did not last that long any more. He still was not potty trained although he would do a “big boy pee-pee” standing up if I took him to the bathroom. He still never asked to go by himself although he certainly felt the discomfort of a poopy diaper, so I was hoping potty training would occur soon. I was making him lift up his training pants too, another thing he hated to do. I had not worried too much about potty training in a while though...I figured when he was ready, it would come. In the grand scheme of things, it would not matter if he learned to do a specific task at four or five as long as he learned it. He still liked certain repetitive movements, like filling and emptying a jar with sand (more than normal), and spinning on occasion, although usually for short periods only.
I found that when he got stressed out, he still needed his “de-stressers” as I called them, toys he could spin a little, his carousel or a ceiling fan he could watch go around, and videos on shapes, colors, numbers or the alphabet. He needed those a little each day to calm down when things got to be too much. Although he very much still had his days, each month brought new progress. Zachary had mastered many software programs for his age group and was doing quite well on programs made for children up to age six.
When asked to put letters in the proper place to spell words (up to four letters), he could easily do it. He now recognized a ton of words and could read them. These included an entire flash card set. Specific words I knew he could read were: cap, nap, lap, map, tap, well, tell, bell, fell, sell, bed, red, fed, led, fan, can, ran, van, man, pan, cold, gold, fold, hold, sold, kite, bite, duck, luck, suck, bus, us, fish, wish, dish, cat, hat, bat, sat, fat, rat, goat, coat, boat, box, fox, sox, pool, tool, fool, cool, moon, spoon, noon, loon, cow, now, how, star, car, far, bar, jar, book, cook, took, look, hook, net, get, jet, let, pet, jam, ham, dam, ram, sun, run, bun, fun, pig, wig, big, fig, dig, zoo, moo, boo, too, top, hop, cop, pop, mop, log, fog, dog, hog, jog, nest, best, pest, rest, ball, call, hall, tall, wall, fall, dad, mad, sad, had, bad, tent, bent, sent, rent, went, tree, see, bee, free, rain, pain, gain, train, rug, bug, dug, hug, mug, pot, hot, lot, not, got, jeep, deep, keep, weep, band, hand, sand, land, hill, pill, will, fill, boy, toy, joy, make, lake, bake, cake, take, rock, clock, sock, block, lock, kiss, miss, nut, hut, but, mom, feet, foot, teeth, go, Zachary, bumblebee (one of his favorite words), water, wave, video, stop, yellow, lemon, orange, potato, tomato, carrot, milk, on, off, shut, under, open, animals, alligator, muffin, Panasonic (the brand name on one of our televisions), all the days of the week and months of the year, and much more. If he knew the phonics, he could pretty well decipher the word.
What I once considered his greatest problems, his lack of flexibility and need for order were now also much better. On November 21st, after coloring a few pictures with me, I let him stack his coloring pencils, only this time, like ends were not all together...they were mixed and they did not have to be perfectly aligned. The pen caps did not have to match the same colored pen. He purposely mixed them, putting a blue cap on a yellow pen, a green cap on an orange pen and so on. The thing I found so difficult with Zachary was that in so many cases, he would do something and then later, he would refuse to do it again. For example, I have never heard him say, “I’m naked” except for that one day in July. He has never said, “hello” to another child since September. It was almost as if he figured he knew “this task” so there was no need to repeat it. It was hard to explain, because it was not with everything that he was like that.
I found that for most of the day, each day, he did rather well, but when 5:00 p.m. rolled around, that was when things got really difficult... almost each day. When he got tired, that was it...he became impossible and it still gets very draining on all of us very fast. A bath, some play or a movie often helped, but every day, that was usually “the time”. Trips to the store helped keep him entertained although he was still quite sensitive to certain sounds (i.e., P.A. systems, humming of freezers and lights in grocery stores, etc.). Often, he had his hands on both ears as we went through stores. I found that when distracted though, he was better able to tolerate those “background noises”. He did not stare at lights the way he once used to. That behavior disappeared months ago. I often wondered if he was going through some kind of seizure when he used to do that. I did not know.
I still used a vaporizer to help reduce congestion/facilitate breathing when he slept during the dry months of November through March and put a vaporizing rub on his chest to further help when I saw he was somewhat congested. I rarely used any medicine other than a very occasional Tylenol or Dimetapp (maybe twice a year). I had a tremendous fear of antibiotics given that I believed they destroyed the healthy bacteria in the intestines. I preferred to try home remedies first. So far, I had been lucky. I kept him away from other children who were sick and made sure he got his supplements to keep his system strong. Zachary has not been on an antibiotic in close to two years. He was finally communicating more too!