Zachary’s Progress – In Illinois (April 2000 to Mid –August 2000)
In addition to changing Zachary’s diet, we now realized that he needed a lot more one on one time. It became the family’s project to “save Zachary”. We were determined to do it and that was that. Failure was not an option. Sure, there were and still are difficult times, but we just resolved to take things one day at a time. In the beginning, just ten minutes at a time was hard. We now saw Zachary’s behaviors for what they were and understood how ill he really was. We had to show Zachary that our world, the real world, was more interesting and fun than whatever he was seeing in his own mind as a result of this “drug-induced type” state he was in due to his inability to properly process gluten, casein and phenols.
The one great blessing we received almost immediately after changing Zachary’s diet (two to three weeks into the diet) was the fact that for the first time in longer than I could remember, Zachary now slept through the entire night. Like most infants, when he was first born, he had been up a lot for feedings. Then, for a few months, he actually slept pretty well all night. That only lasted for a few months though. After that, Zachary would wake up each and every night, two to three times a night. Almost always, he woke up crying or screaming. Usually, he ended up in our bed and after about ½ hour or so, he would fall asleep.
Often, however, no matter what we did to comfort him, he pulled away from us and just cried and cried for hours…and he stared at one spot, constantly…like he was seeing something there which totally captivated his attention, through all his tears and screams. Those were exhausting times. We were so much into the “routine” of bringing him to bed with us that we simply saw it as “normal” for him. Finally, after 2 ½ years, all of us slept through the night and it has been that way ever since. Sure, like all other children, once in a while he woke up during the night, and we took him in with us, but those days were rare, and when they happened, he certainly was not waking up crying and screaming like he used to. The extra hours and better overall sleep were great blessings given what lay ahead for us as a family.
The first, easiest thing to do was to focus on more physical outpourings of affection. We hugged and kissed him now more than ever and made it a point to do so much, much more. Even though he now slept through the night, it was not unusual for me to take both my kids to bed with me just to give them more hugging and that security that mom was there during the night. Unfortunately for Fred, he slept in a spare room more often than either he or I probably would like to admit. The reason I took both my children to bed when I took Zachary was twofold. I wanted to make sure Anika did not feel left out and I felt that her hugging Zachary would also help the children bond to each other, and that was important to me. Anika, after all, was also part of this huge project and as it would turn out, she would be an immense help.
Although he was two and a half by the time we figured out what was wrong with him, Zachary had always been in the same bedroom as Anika. We had an extra bedroom for Zachary, but ever since Zachary had been born, she had wanted his bed in her room. When he outgrew his crib, she insisted he sleep with her. So as Zachary outgrew his bed, her single bed went into the spare room and the double bed from the spare room went into the kid’s room so that they could sleep together at Anika's insistence. I was fine with that. I also knew how many other families slept with their kids. When I still worked at Ameritech I had once made a comment to co-workers that I was tired because the kids had slept with me the night before. My co-workers knew how old my children were. Almost immediately, three of them chimed in saying they had thought they were the only ones who slept with their kids…and some of their children were eight to ten years old. We all laughed and agreed that with all the hours we put in at work, that was some of the best “hugging time” we had with our children.
It was unfortunate that society had become so obsessed with “proper parent-child relations” that parents were afraid to admit such things in public for fear of being thrown in jail for child abuse because society automatically assumed child abuse. That was a sign of a sick society, not necessarily of a sick family. I had to develop patience to allow the children to sleep with me so often. No matter how big the bed, they had a tendency to sleep in “star formation”, arms and legs spread out, or the ever-popular “perpendicular alignment” so that I ended up with about six inches of a bed that was six feet across.
Anyway, if Zachary was with me, “being there” when he woke up was easier than having to run to his room early each morning, something I did most mornings. The reason that was so important was because right from the time he opened his eyes, I would start “working” with him. I would touch his hair and say, “hair”, then his eyes and say, “eyes”, then his eyebrows, eyelashes, nose, cheeks, lips, mouth, teeth, tongue, chin, neck, shoulders, arms, hands, fingers, fingernails, tummy, bellybutton, back, legs, knees, feet, toes, and toenails. Each day, I would do this, starting from the hair and going as far down on his body as possible before he was even out of bed. If he continued to stay in bed, I would initiate play with my “bellybutton bug”. That was always a favorite and it could always make him laugh. I would take two fingers and pretend I was a bug going along his body until I got to his bellybutton and then I would tickle him a little. There were days when I could be there with him playing in bed for up to an hour before he decided he wanted to get up. I would count his fingers and toes. He always loved it when I got to the end of the five fingers and said, “five fingers” in an upbeat voice. Soon, he would put up each of my fingers, wanting me to count them out loud as he lifted each one.
Since autistic kids were usually very much behind in social skills, early in the “save Zachary” project, I told Anika, now seven, she had to do everything she could to get Zachary’s attention to get him out of “his world”. It was not long before she figured out how to do it. She used “flowing fingers” as I called it. We were all in the basement of our house (in our family/rec room) and I saw her march right up to Zachary, take both her hands and “flow” her fingers down Zachary’s face. Then, she ran off saying, “you can’t catch me…you can’t catch me…”. She did this for probably a week. It was not long before Zachary was in fact running after her. Anika also vividly participated in playing “My Boy”…another one of Zachary’s favorites.
In “My Boy”, Fred, Anika and I would each take a hold of Zachary, usually one of us held his shoulder, and the other two had one of his legs so that Zachary was completely off the ground. Then, we all “fought” for ownership of Zachary, each of us gently pulling Zachary toward him/her. We made it so that one person looked like s/he was “winning” but then, someone else would “win” and we would go back and forth with him like that a few times. He absolutely loved it.
One thing Zachary did not love was “horseback rides”. Regardless, we tried over and over again. Often, Anika “rode” with him, making sure he did not fall. I think that was when Fred and I most felt the effects of “age” on our backs and knees. The room was forty feet long and that was a lot of “riding” back and forth. Eventually, Zachary got used to it, and the more he got used to it, the “wilder” the horse got/had to be, not to mention the fact that the poor “horse” got more tired and sore, so much so, that the only way to end a ride was to “fake death”. At times, even that was not enough for the kids to stop riding! It got to the point that Zachary was now asking for the horseback ride by motioning he wanted “on”. He pushed Fred on the back, pushing him toward the floor and that was the sign to assume that dreaded position that was so hard on the knees... when Fred was too tired to play, I would be the horse. To Anika, it did not matter who played the horse, she loved it more than Zachary did…then and now!
Another favorite was “zoom rides”. Zachary and Anika had always loved the sensation of vertigo. Fred and I debated back and forth as to whether or not to encourage certain behaviors in Zachary and this was one of them. Zoom rides were so much fun for the kids that we decided to allow them. A zoom ride was no more than Fred picking up Zachary (or Anika) in his arms and turning while he held him (or her). Zachary’s back (or Anika’s) rested on his forearms so that the child getting the “zoom ride” was in a horizontal position looking up at the ceiling. Of course, you had to exercise judgment when doing this so as not to get too dizzy yourself and fall or lose control and Fred was always good about that, making sure the kids were always safe. But they absolutely loved “zoom rides”.
Verbal reinforcers were and still are very important to Zachary. For example, it did not matter what we were doing with Zachary, we would always say, “Good job” or “yooo-hooo”. After a “zoom ride”, I would say, “good job doing a zoom ride” or in the morning, “good job counting fingers with mom”, “good job letting mom count your teeth”, when we would go for a walk, it was “good job walking with mom” so that he always knew or was told “what we were doing” and he was always praised for cooperation/participation.
We would take Zachary on countless walks and trips to the park. Luckily for us, there was a beautiful little park we could go to about a block and a half away and another, larger park about three blocks away. Both were close enough to walk to and that proved to be a good training ground. We lived in a huge duplex and I recalled when we first started the daily walks how I had not even made it ten feet pass my property when Zachary would throw himself down on the pavement, right in front of the neighbor’s house. The neighbor happened to be outside at the time. Julie had been our neighbor for about five years now and she knew Fred and I were good parents. I think that was why she was absolutely stunned when she saw me simply walk right over Zachary and come over to talk to her. She had this “What are you doing?” look on her face, totally puzzled as to why I ignored Zachary like that. I explained to her that Fred and I had just found out Zachary had autism and that I could not reinforce these behaviors in any way. I had to simply ignore them. So, as Zachary had his little fit on the sidewalk, I talked with Julie. It did not take too long to get rid of that behavior once Zachary realized he was not getting anything out of it. I was always so ambitious and excited when I decided to go for a walk and get outside, but it was never long before reality set in.
I could go forty feet, then down the block, then all the way to the park without a scene. If I had the misfortune of walking past a new lawn ornament on the block, that was always difficult, especially if it was “twirly” in nature, like a wind catcher of some kind. Zachary always wanted to “spin” things and anything like that would attract him and ruin the walk. You had to fight to get him away from it. Eventually, he got better with dealing with them and a firm “no” sufficed to go on. Once I was at the park, I was “home free” since Zachary loved it there. Of course, that was only if no child at the park had brought a bicycle or any type of toy with wheels. If that was the case, then Zachary would just run over to the bike, tip it over and start spinning the wheels…and then I had another fight on my hands. I always thought to myself, I should be enjoying these walks, but often, they were absolutely draining. If I had to pull Zachary away from some wheeled apparatus at the park, be it a bike or something else, then I would often have to carry him home on my shoulders or in my arms as he kicked and screamed since he would not leave on his own. As we walked each day, the neighbors got used to seeing us always out together, Zachary holding my hand with his little fingers… or Zachary crying on my shoulders… or Zachary kicking and fighting in my arms.
Slowly, but surely, the walks got better. Our neighborhood in Illinois was a great one. We lived on a cul-de-sac and although there were about twenty five families living in duplexes on that street, we pretty well all knew each other. Each year, during the summer, we had a block party, including games for kids and adults, the fire truck “hose down” (for adults and children alike) and truck inspection for the kids. In our suburb, the fire department came out and hosed people down in the street at block parties in the summer if they were not too busy with their normal duties and were asked to come a couple of weeks before the party. If you were lucky enough to be the last block party for the fire department that day, the firemen stayed a little while and ate with you. It was great for kids and adults alike. We always used to give a good donation to the fire department for taking the time to do it. I guess for them, it was better than sitting in some firehouse all day when there were no emergencies. It was also great for community awareness as they spoke to the kids about what to do in case of a fire. Needless to say, our block was a great one. People knew and cared for each other. The block party was always a terrific way to welcome those who were new to the “street” each year. On Saturdays, if two neighbors were out talking on the sidewalk, it often was not long before there would be five families out there talking. We really enjoyed each other’s company. Given how closely knit our neighborhood was, it had not taken much time after finding out that Zachary was autistic before the entire street knew it. And I did not say that in a negative, “gossipy” way, what I am saying is that our neighbors who cared very much for us were all very saddened by the news we had been given about Zachary and you could see it hurt them too.
As the days and weeks went by though, we continued to walk and the walks got easier. Now, when neighbors saw me walking by with Zachary, they would come up to me and comment that he seemed to be doing much better on walks, but I had not “seen” Zachary’s real problem until much later, July of that summer. We were now in very early May of 2000.
On May 7th, Zachary had slept with both Anika and me. Fred had slept in the kid’s room. On the morning of May 8th, around 6:00 a.m. I awoke to a funny sensation. I had been sleeping on my stomach, without blankets, something I rarely did. Zachary was already up and standing by the bed next to me. As I laid there sleeping, he kissed me from the back of the leg up to the cheek...about eight kisses in all....bang, bang, bang....one after the other in rapid fire sequence. I was stunned. He had NEVER kissed me before that. I cried and cried. For the first time in a long time, my tears were tears of joy, not sorrow. I had cried each and every night for more than a month and would continue to do so for close to two more months...autism had so devastated my family... but this time, the crying was good. I never forgot that date... May 8th, 2000… my first kisses! From then on, the kisses flowed freely.
That same week of May, I had a dream that must have come from God himself. I dreamed I was in a special room with Zachary, in my house. My dream was in color and I could see all the colors in this room perfectly. When I awoke that morning, I felt so strongly about this dream that I told Fred, “you have to watch Zachary today, I need to paint”. Fred looked at me, puzzled. That was the very first thing I told him that morning. I explained my dream to him and so he understood my need for the “room of colors”.
I had grown up in a family of ten children. My mother, needless to say, was a stay home mom and her children were her life. She had always said that children needed to be “stimulated”, that they needed to always be made “part of the happenings in life”. Every book on behavior therapy that I had read since learning of Zachary’s autism emphasized the need for a simple room, basically white walls, a table with two chairs for one on one interaction and no distractions. My dream was so vivid and so specific and so against all that, as were my mother’s words, that I now recalled, that surely this dream had been sent to me from heaven. I went to the store and got the paints I needed for my “room of colors”. Then, I went back home, emptied the room and started painting. All of these paints were very glossy/shinny.
Per my dream, the ceiling I painted a royal blue. The wall on the left when you entered the room I painted a vivid royal purple. The wall next to that one, I painted a vibrant green. The wall next to that one, I painted a brilliant red. The last wall, I painted a bright yellow. The closet doors and the door to the room, all of which were along the purple wall, I painted a shinny, pumpkin orange. As I took a break once the walls had been painted, I rested on my back in the center of the room. It was like being in a Rubik’s cube. Each corner of the room had a different color combination. Any child would have loved a room like this one. My break was over, but the masterpiece recreation of my dream had yet to be completed. On the green wall, I painted huge shapes, each over a foot high and up to two feet in length. There was a red circle, an orange triangle, a blue square and a purple rectangle. All were at Zachary’s level on the wall. On the red wall next to it, I painted big black numbers, one through ten. Each number was about one foot in height. Under each number, I painted the appropriate number of “x”s, one “x” under the number one, two “x”s under the number two and so on, all the way to ten. Again, everything was at Zachary’s eye level. On the yellow wall next to the red one, I painted all the letters of the alphabet in various colors. There were red letters, blue letters, brown letters, purple letters, orange letters, green letters. I visually split the wall in half and started painting. In the far left corner was the letter “A”. I went across and painted a “B”. I painted as many letters as I could up to the middle of the wall. The letters were anywhere from eight inches to over a foot in height. There had to be variety. They were not one right next to the other but rather went a little up, then down, then up, then down. For that same half of the wall, I continued painting all the way down toward the carpet, ending in the middle of the wall, at the bottom, with a “Z”. I then did the same thing, only backwards to the other half of the wall. So, the far, top right corner of the wall had a “Z” on it. I worked my way toward the center of the wall, “Y”, then “X”, and so on… again, all the way down, this time ending with an “A”.
What that gave me was a wall that provided challenge for Zachary because the letters were not in perfect order as you read them across the wall and it also gave me one other thing. The design of my wall made it such that with his hand, Zachary could literally touch each letter. The masterpiece in my dream had now been perfectly reproduced and it was beautiful. My mother would have been proud. It certainly “stimulated” the eye and the imagination. It had taken me three very long days to complete. I painted all day and went to bed around three a.m. each night. I was exhausted, not to mention the fact that I had multiple colors of paint all over my hair. I must have looked like quite the work of art myself. I cleaned up and put fans in the room to help it dry and get the smell out and went to bed. Again, it was approximately 3:00 a.m. Zachary had been kept away from my project, for good reason.
After a little rest, I got up and returned to the “room of colors” to check things out. The paint was now dry. I was so excited. I did not realize Zachary was also up. Before I knew it, he was in the room with me. I kissed him good morning. His eyes were alive with fascination. He looked all around the room. Then, he walked up to the “alphabet wall”, put his hand on the capital letter “H” and said “AAACCCHHH”, then he went over to the capital letter “A” and blurted out “AAAAAAAA”. You could have knocked me over with a feather! Zachary had never uttered a single letter before that. His entire vocabulary consisted of about 5 words - if even that. He had lost so many words he had once used in the past. How was it, I wondered, that he knew these letters?
I quickly figured it out. Having worked in telecommunications, Fred and I were big on computers. Zachary used to love them, too. We had one program in particular that was his favorite, Dr. Seuss’ ABCs, by Living Books. (A Broderbund Company). We had paid about $14.00 for this software. Zachary could sit there and either listen to a narration that went through each letter of the alphabet, big and small (the “READ TO ME” option) or he could click on the interactive part of the program that also went through all of the alphabet, big and small (the “LET ME PLAY” option). Each letter had a little “script” that went along with it. For example, on letter “A”, it said: “Big A, little a…what begins with A? … and then it gave a lot of words that began with “a”…all of these words appeared on the screen, along with a picture of each item/word and so that Zachary could read along as well as see “what” that was. The “Let Me Play” option allowed Zachary to discover all kinds of fun hidden things that related to the specific letter on the screen. This was a FANTASTIC program for any child. It took about twenty minutes to get through the “Read to Me” and Zachary used to love sitting there and listening to it. He could listen to it three times in a row in one sitting. He also enjoyed the “Let Me Play” option tremendously as he was quite good with the mouse for a two and a half year old.
I knew that this had to be where he had learned the letters. I just did not realize he actually “knew them” until he blurted them out in our “room of colors”. Within a couple of days, he was saying and touching each letter with the palm of his hand as he said the letter. His pronunciation of the letter “Y” was particularly appropriate. Zachary would go through the entire alphabet, pretty well saying each letter almost perfectly, but, when he got to “Y”, he would have this drawn out “WWWHHHHYYYYYYYY”. It was particularly funny when he learned to sing the “ABC song” because he would still have that drawn out “WWWHHHHYYYYYYYY”. Fred and I kind of found it funny in a way and at times, when Zachary said that letter “WWWHHHHYYYYYYYY”, we told him we had asked ourselves that very same question many a time.
In addition to the alphabet, we worked on numbers, counting each “x” under each number and on shapes. In no time (a matter of days), he knew all those too. He was repeating everything I was showing him and taking it all in. In the morning, he now often ran into the room and went to his favorite shape, touching it with the palm of his hand and saying “cirrrrrrcle”. That room became our primary study room for the month of May and most of June. I purchased a little table and two chairs for the room. Looking back, that was a waste of money. Zachary preferred to simply sit on the floor. I touched everything in the room. I would touch the carpet and say, “carpet”, and he would repeat it, I would touch the wall and say, “wall”, and he would repeat it, I would say “ceiling” as I pointed up, and he would repeat it. Everything I said, he repeated. I worked with him on all the body parts, and those he repeated too. After a while I wondered if that was all it was, just repetition, or if he actually understood. I had read a lot about autism and the “echolia” that was exhibited by most autistic children. Echolia was just that, the repetition of words. Everything I had read on it though seemed to indicate that this was all it was, simple repetition. Zachary had only been on his diet/supplements for about three months. Still, I knew that for Zachary, it was not simple repetition. Sure, he was only repeating the words physically, not conversing, but he was taking it all in and learning. He had a fantastic memory. Now, he became a sponge for new words. I could see him absorbing everything. I just knew he understood.
The first situation whereby I KNEW for sure that he understood was a rather funny one. Zachary was having one of his more stressful days. Yes, there were still many in spite of our progress. Fred once made a comment that, “if we were so stressed out, imagine how difficult it must be for Zachary himself”. That was so true. I rarely spanked Zachary, but he had received a small slap on the butt in the past on probably one or two occasions. Anyway, I do not even remember what it was he had done to make me lose my temper. He was still always breaking things, making an absolute mess of the house whenever the opportunity presented itself (almost every hour) and he still had a lot of very difficult days. On one of those days, I turned to him and said, “You better listen to mommy because I am going to slap your butt”. Since it was summer and we were in the house, all he had on was a t-shirt and a diaper. He started running away from me, hiding his little behind with his hand as he exited the room as quickly as his little feet would allow, kind of looking back to see if I was following behind. It was so cute I just cracked up right there and started laughing... but he had given himself away… I now knew for a fact that he understood what I had said. That little brain of his was working much more than he had let on in the past.
To further stimulate his brain, I sang songs to him and played classical music when he went to sleep. He loved to be sung to. During the day, I would act out the songs. “The Itsy Bitsy Spider”, “Hickory Dickory Dock”, “Old MacDonald Had a Farm”, “I’m A Little Teapot”. Every child’s song I knew, I acted out and I involved him by touching him as I did it and he loved it.
The month of May went by quickly. Although we were making great progress with Zachary, he still had “his days”, those extremely long and difficult days that just never seemed to end. Every once in a while, he still would hit his head in frustration, throwing himself down on his back and inevitably hitting his head on the floor as he went down. We actually considered putting a bicycle helmet on him in the house. I found something simple to help a lot with this situation. Whenever I saw Zachary getting frustrated, and I knew it would just be a matter of time before he “went down”, I started saying “gentle, gentle” as I held him best I could as he “went down in frustration”. Frustration episodes at bedtime were also difficult, as he would often throw himself back from a seated position down onto the pillow, often hitting the wall as he did it. Again, the use of “gentle, gentle” and my holding of his head as “he went down” decreased the intensity of the motion. I found that I could not stop “the motion” itself, but I could decrease its intensity significantly by the use of those two words and my hand around his head. Eventually, the intensity with which he “went down” decreased significantly. I found myself using the words “gentle, gentle” for several motor problems including any “going down episodes”, leg and arm banging, hitting, etc. Those two simple words eventually helped him learn how to control his motor movements and frustrations. When everything got to be too much for the rest of us, we took trips. We were without family in Illinois and that made it very difficult. We could not go out to eat as a family and it seemed our entire life focused on Zachary. The last week of May, exhausted from the month’s happenings, we found ourselves visiting family, again, in Canada.
Most of the month of June was spent in Illinois, however, and again, during that month, I spent a lot of time at the park with Zachary. I drew letters in the sand and he called them out. Then, I mixed letters and numbers. Then, I drew “happy faces”, stickmen, dogs, cats, chickens, rabbits, elephants, giraffes, anything I could think of to keep his interest. Each animal drawing was accompanied by a sound provided I knew it (I still did not know what sound a giraffe made). I drew shapes, and slowly added to each shape to show Zachary how they were part of the world. For example, a square plus a triangle made a house, a circle with numbers on it made a clock and each time, as I drew the “combined shapes”, I told him the name of the new object. Zachary was absolutely fascinated with shapes and numbers.
Teaching him colors was more frustrating. Over and over I showed him objects, told him the color and then tried to see if he knew it. What was unusual with colors was that he did not seem to be able to learn them, or at least that was what I thought at first. I worked with him on colors over and over and over. When I asked him a color, he would often give me the wrong answer. Finally, one day, even though I still thought Zachary did not know his colors, he started taking objects and one at a time, he called out each color for that particular object…he seemed to know them all…and remember, I thought he did not know any of his colors because that was what he had “indicated” when I worked with him on this particular subject. Now, I knew he knew them, and knew them perfectly...at least the basic colors (red, green, blue, purple, pink, black, brown, orange, yellow, white, gray). It was almost as if he wanted to wait to “know them all” before he showed me that he knew even one of them. Things were still difficult with variations within a color (i.e., navy blue vs light blue).
As I worked more and more with Zachary, I came to see how he would “play with me” by often giving me the wrong answer on purpose. I noticed this one day, as we worked on the computer. I knew Zachary knew all his letters and numbers and yet, when asked to “click on a letter or number”, he would purposely select the wrong one. In fact, he would pick every other choice before selecting the correct one…that I knew he knew…just because that was a fun thing to do. I cannot explain his reason for doing this, but that was the way it was with him. Some days, he would pick the right thing first off. Other days, he would prefer to pick all the wrong answers first or pick the right answer “in the middle”. It varied depending on what he felt like doing.
The important point here was that given what I experienced with Zachary, in spite of the fact that he knew all his letters and numbers, you would not necessarily know that if you “tested him”. He made a game out of picking the wrong answers, or he simply found it “interesting” to do so. I could now see why so many of these children could be labeled as “mentally handicapped”. Therefore, as far as I was concerned, intelligence testing for Zachary or any such children needed to involve parents who knew what their child did or did not know and the “games” they played to help ensure testing revealed accurate I.Q. levels or knowledge bases. I could see how a child such as Zachary could need to be tested several times by someone to properly evaluate his knowledge, to get a true picture of what he actually knew. Any one time test would really be a “luck of the draw” based on how Zachary felt like behaving on that particular day.
I decided to give Zachary another test of my own. Continuing with my mother’s theory that children needed stimulation, I suggested the entire family take Zachary to the zoo. Fred just about cringed at the suggestion. A year earlier we had been to Brookfield Zoo near Chicago. It had been a complete disaster. Zachary was very cranky and in spite of our efforts to show him the animals, he was not interested. I recalled how on that trip to the zoo Zachary could not see the elephant, so plainly there - in front of him – because of the fact that a little squirrel was about three feet in front of us and twirling a nut in his hands as he ate it. The “twirling” of the nut captivated Zachary’s attention, not the elephant. We had tried to raise his head and have him “see the elephant”, but that only made things worse. He started screaming from the top of his lungs. Things went downhill from there! Every parent around looked at us, wondering what was wrong. Here this quiet child had just exploded into loud screams out of nowhere. Any parent of an autistic child knows all about “those stares”.
Anyway, that had been about a year ago. In spite of his reluctance, Fred agreed to try “the several hours outing thing”. We packed up snacks for Zachary and our precious Red Flyer Wagon that we had used to take Zachary on so many “wagon rides” and headed out. Zachary enjoyed car rides and so getting there was uneventful, despite the longer than usual ride as a result of that never-ending summer construction on Chicago highways. Soon we were at the zoo and off for the adventure. Amazingly, this time, Zachary enjoyed it... he noticed the elephants, the giraffes, the lions, the bears, the dolphins, the monkeys, the birds, the water fountains... and yes, the squirrels too. The outing had been a great success. Fred, Anika and I were thrilled. Zachary slept all the way home. He was totally exhausted.
Having done so well at the zoo, we thought we would try the Field Museum in that same month. The Sue dinosaur exhibit was on display and that was something we wanted Anika to see. So, once again, we headed out for a family outing. This time, we took a stroller instead of the red wagon. Since Wednesday was “free admission” day, we went on that day. That in itself was a mistake. Every school in the area must have had a trip to the Sue exhibit on “free Wednesday”. There must have been thousands of people there...the place was jam packed. We found a place to park near the planetarium and walked over to the museum. It was a beautiful day and we rather enjoyed the walk. We made it to the museum and went over to the Sue exhibit in the large exhibit area where you first come in. After that, we started touring the rest of the museum. We started on the upper floor and then came back down. On the main floor was an animal exhibit. There were bears, monkeys, turtles, snakes...just about everything you could want to see... Fred and I had been commenting on how we needed a couple of days to see everything - it was too much to see well in one day. Everything was going well...both kids were enjoying it and so were we. As we walked around the animal exhibits, I would tell Zachary the names of all the animals. For the most part, he just looked and remained quiet, probably because he knew all these.... bear, monkey, tiger, and so on. Then, when rounded a corner and I went over to the orangutan display. I told Zachary, “orangutan”. To my surprise, Zachary said, “orang...tan”. I turned over to Fred and said, “Did you hear that, he said orang...tan”? We were both thrilled, as was Anika. I was so thrilled in fact that I tarried in front of that display a little longer. Fred and Anika had moved on. I had mentioned to them that there were lions “over there”. That was where Fred and Anika went. I did not know how it happened, but that was the last I saw of them in the museum. We got separated and with all the people in there, I could not see them any more. Anika had been tired of walking and so Fred had been pushing her in the stroller and I had Zachary on my shoulders (a good forty pounds or so). I looked and looked for them, but to no avail.
I went to a security guard and asked if I could have them overhead paged. I explained how Zachary was autistic and that he was getting a little tired (we had been looking for Fred and Anika for over half an hour). To my utter surprise, the guard informed me that the Field Museum, this huge place where tens of thousands come each year, had no public announcement or P.A. system. “So, what do you do if a child gets lost?”, I inquired. “We take them over to the information booth and wait for the parent to show up”, he responded, as he pointed to the booth. “What?”, I said. I could not believe my ears. “This is how you handle lost kids...in Chicago!”. I walked away. I knew Fred had surely noticed we were missing within a couple of minutes. He was also “a very protective parent”, so I knew Anika would be ok with him and that he would not let her out of his sight.
Knowing I would be unable to hold Zachary on my shoulders for very much longer, I started the walk back to our car that had been parked at the planetarium. I knew Fred and Anika would eventually have to go there to get back home. Zachary was fine throughout the entire ordeal “we” were going through, enjoying the ride “with a view” from mom’s shoulders. The perfect Chicago tourist taking in all the sites. We finally made it back to the car. I put on the air conditioning, gave Zachary a snack as he sat in his car seat and we listened to music as planes went overhead and either landed at or took off from Meigg’s Field by the lake.
After about an hour, Fred and Anika showed up. Fred had his “panicked, stressed out look” on his face. I could see him coming but he had not seen us sitting in the car yet. I got out of the car and placed myself in his line of sight. Anika saw me first and she told her dad. I could see the relief on his face. We were all happy to be back together, everyone fine. We headed back home. That was enough of the “big city” for us.
With each passing day, weather permitting our outings now consisted mainly of walks to the park. On one of our many trips there (we often went two or three times a day), I put Zachary in the “baby swings” and slowly pushed him back and forth. It had taken him quite a while to get used to them, but he was finally at the point where he enjoyed it. Anyway, on this particular trip, a woman was pushing her child in the little baby swing next to mine. Her child must have been about a year old. As she pushed her baby, she called out, “wwwwooooonnnnnee… tttttttwwooooooooo…ththththththrrrrrrreeeeeee”.
Upon hearing that, Zachary just looked over in amazement. He looked at the woman and her child and then at me. He had this look of, “mom, she knows that too” on his face…a look of both puzzle as to where she had learned “that” and a look of fascination all rolled into one. It was the first time I recalled Zachary ever actually “noticing” anyone. He had never shown interest in anyone outside the immediate family before. But, now, he was realizing that “other people” knew some of the few things he knew. It was as if he finally understood there could be some form of “communication” with “other people” walking around. And, that made “this world” a little more interesting now. I went out of my way to continue to show him how things I was teaching him fit into the world around him. I was absolutely determined to show him “real life” was more fun than anything in his “autistic world”.
Unfortunately, that month, Zachary had to take another trip to the doctor’s office. I suspected he had another earache. He had that same crankiness he always had with earaches. As I started to speak to this doctor, in the immediate care facility (after hours, evening clinic), I explained Zachary had autism. I also told him that we had no insurance, but that we were fine with paying cash. I could hardly believe what happened next. Even though there were other patients waiting to be seen in the facility (nothing urgent it seemed), the doctor actually took the time to read Zachary’s records quite carefully. Zachary’s pediatrician worked in the basement of that building and so his file had been sent upstairs since I once again had been “put off” long enough that I was forced to take him to the evening facility.
The doctor read the records for close to a half hour... and he asked me questions that had to do with Zachary’s progress...not just questions one would ask about earaches. Other than the physician who confirmed our fears about Zachary’s autism, he was the first to treat Zachary the way he needed to be treated, as a very sick child. I realized then and there that because we were paying $80.00 for the visit instead of the usual $10.00 co-payment, this man could actually take the time to be a doctor and treat his patient the way a doctor should treat a patient. When we did have insurance, Zachary never spent more than 10 minutes in the presence of a doctor...it was always the HMO/PPO “in and out” visit. Not having insurance was actually a blessing because, for the first time, I realized Zachary’s care was much better without it... even though it was more expensive.
Like the month of May, June went by quickly and had brought many little joys, the kind of little joys parents of autistic children cling to in the hope that their child was indeed making progress. I came to notice ALL the “little things” I probably would never have noticed had Zachary not been ill. Every step forward became a treasured memory. Although many of these steps were “baby steps”, every once in a while I got one that I just knew was a breakthrough, as had been this episode with the “123 lady in the park”.
It was also around this time that I noticed the extent to which Zachary used family members as tools, ways to get something, rather than people with whom he could communicate and have fun. More and more, he would take my hand and use my hand to show me “what he wanted”. If he wanted a snack, he would take my hand and put it on the pantry door. If a toy needed to be fixed or pulled apart, or a puzzle made, he would take my hand and push it toward the object to indicate he wanted me to “do something” with that particular thing.
To him, people were primarily “tools” to get things done. Social interaction was basically non-existent. Zachary never initiated play with other children and on most walks to the park he did not notice them at all. There was no desire there to play with other children. Things that “spun”, like the wheels on their bikes, were more interesting to him than the children and that was what usually captivated his attention. In addition to “spinning wheels”, he would find object to spin on the wheels. Zachary would put rocks, little pieces of paper, anything he could on the spinning object. As the wheel spun, he would focus on the rock or piece of paper, or whatever he had placed there. I did all I could to minimize these autistic behaviors. I always explained to other children at the park why Zachary tipped their bikes over to spin the wheels and amazingly, most of them were very understanding and said it was ok with them. Yet, I felt this need to constantly force him to interact with me by drawing in the sand, showing him new things as I touched them with his hand, like tree bark, tree needles, tree leaves, grass, gravel, sand… everything became an opportunity to teach him something. I did everything I could to get his attention away from bicycle wheels and other “autistic behavior stimulants” at the park.
Getting his attention away from these often proved challenging. Creativity was a must. I would sweep him up in my arms, giving him a “zoom ride” as I took him away from the undesirable object and moved him closer to something I wanted to teach him about. Picking him up “upside down” in my arms was another favorite. He loved to be carried upside down (and still does). I would put the lower part of his legs on my shoulders (by bending his legs at the knee), and with my arms tightly around his stomach and holding on to his clothes tightly with my hands (“just in case” he tried to get away from me), I would walk a little ways with him upside down.
A ride on my shoulders was another way to distract him and always a favorite. Often, when things got to be too much, that was usually how I ended up taking him home. I taught him how to “give me five” that month. In spite of how tired I was, I always felt I had to be interacting with him, constantly stimulating him to discover “our world”. I came to feel guilty if I took a few hours for myself, almost to the point of driving myself crazy, I think. Finally, I came to the realization that I had to make more time for myself - and Anika, especially, and that it was ok for Zachary to play on the computer by himself, or watch a video or two while the rest of us “took a break”. We had purchased a lot of educational videos for him and that was “learning” too. Life went on in ten-minute intervals, in 30-minute intervals, in one-hour intervals. We lived one minute at a time, one hour at a time, one day at a time. My sister-in-law had given me a gift I cherished deeply. It was a small plaque that stated, “Mothers of boys are busy from son-up to son-down”, words that rang so true.
Our life was a constant whirlwind. Plans were no longer for “next week” or “next month”. When we took trips, they were usually “on the spur of the moment”. I say “on the spur of the moment” because they usually happened after several weeks of intense and exhausting focus on Zachary, to the point that we could not take it any longer and had to “get away”. So, when either Fred or I suggested a trip to Canada, it often was not very difficult to convince the other spouse to go. We had made a list of “things to pack” for both kids and kept it in a file in our home office. It was always right there, ready to be pulled out at a moment’s notice. It included everything we needed for Zachary, clothes, shoes, boots, specific foods and snacks, sea salt and pepper, list of his supplements, diapers/wipes, sippy cups, toys/videos/educational cds…everything. I also included all of Anika’s things on the list too. It just made packing a lot easier. I found that without such a list, packing either took much too long or we forgot something we needed. I had made many copies of the list and would bring one with me for “re-packing” at the other end when it was time to come back home. To this day I still use that list.
It seemed each time we went to Canada we realized how we longed to be closer to family. Twelve-hour trips were too long for Zachary and when he got stressed out, the entire family was stressed out.
Whenever we got back from a long trip, Zachary was absolutely thrilled to be back home. He loved to play with his own toys and sleep in his own bed. Fred and I had gone back and forth as far as what toys we should or should not allow him to have. His urge to “spin” things was still quite strong. For a while we put away everything that Zachary could ‘spin’ and there was a lot of it. Any little thing that even moved on any toy, he attempted to spin. I would estimate that close to 85% of his toys had been put away at one time or another. Then, we decided that the only way to really know if he was getting better was actually to let him have access to those things that were once so obsessive to him when it came to spinning. So, within a few weeks of putting them away, out came the toys again. The stress on the family seemed insurmountable. All aspects of our life had been so violently uprooted, tossed around and we were still trying to figure it all out…to pick up the many shattered pieces. The reality of autism had set in now. The old family we once had was gone, killed by this adversary and, understandably, we were having a very difficult time adjusting to the new family dynamics.
Fred and I, like all couples, had had our share of fights, but we were still very close and loved each other very much. Having an autistic child tested that love. It seemed in those first few months after finding out Zachary was autistic we argued more than ever. We had never argued so much as we did during this time. Anika’s world was falling apart, too. All this fighting, all this stress made her think we were surely going to get a divorce, in spite of our attempts to reassure her that such a thing would never happen, that we were just really, really stressed out over Zachary. She would say that she was trying her best to help, and we knew that. Still, I saw Anika - a couple of times - walk away with clenched fists. We told her over and over again that the fighting was not her fault at all and that things would get better soon. But, I could certainly see the impact on Anika. Most times, when she ate, it almost had to be “in secret”. She loved so many things Zachary used to love but could no longer have...things like cheese, macaroni and cheese, common cereals, regular toast, ice cream, cookies, etc. We never ate as a family any more. We either ate first or Zachary did. We could never be all together at the table because Zachary would want our food. That was very difficult.
I constantly had to remind Anika never to leave so much as a morsel of food of anything anywhere. The counters were always wiped clean right away and all leftovers put away immediately. Regular cereal was placed high, on top of the kitchen cabinets away from Zachary’s reach. It was difficult explaining to her that what was good for one child was seriously detrimental to the other. I, myself, found it difficult to tell one child one thing and the other the exact opposite when it came to food. I would tell her, “eat this, it is good for you” and turn right around to Zachary and try to make him understand that for him, cheese was dangerous. That was the case for so many foods. Anika felt very “guilty” that she could eat certain foods... and that her brother could not. I kept reminding her that it was for his own good, but that did not seem to help too much. Watching her diet became important too. She had always been a slim girl and I certainly did not want her developing an eating disorder. When family came over to visit, I was always making sure no child or adult gave Zachary something he should not have. I fed everyone and had everything put away, leftovers and dirty dishes, before I myself would sit down to eat. This autism thing had totally changed our lives. All our hopes and dreams for Zachary had been shattered only in March, and although just three months later he was doing great strides, he still had a long way to go.
Our hopes for Anika’s future were also at risk. We did not want her having the burden of a sick brother later in life. Already, I could see what Zachary’s illness was doing to her. She felt all our time went to Zachary but we made it a point to be more sensitive to her needs in spite of all the time necessary for “saving Zachary”. We found the best thing was to make her understand why we had to do this - that it was not just for Zachary, it was for her also. I let her sleep with me often during this time and hugged her a lot at night while Fred slept with Zachary or in the spare bedroom.
The stress, on all of us, was immense. Our focus as a family on “saving Zachary” was exhausting all of us. Like every human, I asked myself, “why me?” I had read so much on autism that I was sure it was a matter of a genetic predisposition manifesting itself through food intolerances. One time, during a particularly bad argument with Fred, when I was “feeling sorry for myself”, I blamed my husband and blurted out that all this was his fault...that the “genetic sewage”, as I called it, came from his side. After all, he had one sister with a PDD child and another sister whose child had all kinds of allergies. There was none of that on my side. It had to have come from “his” 50% of the genetics. At the time I said it, I was angry, still mad at having to deal with this situation. Of course, I regretted those words later, but, too late, they had already been spoken. Fred had always been such a wonderfully supportive husband…how could I have said that to him. I knew he cried over all this just as much as I did. I was fortunate in that my husband was a very forgiving man. He knew I was angry and hurt.
We both knew the whole situation was totally stressing us out as a family and we wanted to be closer to our relatives. So, in mid-June, we decided to move closer to Canada. If we did not have enough stress in our lives already, we had just added more. And we had decided not to go through a realtor but sell the house on our own. Our duplex was in a nice neighborhood, but ours really had not received many updates since it had been built. We spent about $12,000.00 updating our home prior to putting it on the market. Homes in our area had just skyrocketed in price in recent years and I knew we could sell it fast and at a good price if it “looked good”. So, we had painters come in and repaint the whole place…it just about broke my heart to see the paint go over my “room of colors”…I could not look. There had been so many memories there. I think it equally broke the painter’s heart…the paint I used was so bright that he literally had to sand it down before he could paint the wall, and it still took three heavy coats of fresh paint to hide the paint I had used. He was not expecting that and it slowed down the project a little. I had spent three days in there…and so did he! The rest of the contracted painting team laughed as they checked in on his progress... the last guy to the job was assigned “that room” and all the other painters were thankful they had arrived early enough not to get that particular room. The team of painters included four men and it took them just over two weeks to finish the entire house. Everything was repainted.
The man who had lived the house before us had painted the railing to the upstairs gray, along with the kitchen cabinets, bathroom cabinets, the wood trim and doors throughout the house. All of that had to be repainted. I did not know what it was about people and their need to paint over wood. I liked wood and would never paint over it myself. In addition, the kitchen floor and the upstairs loft had really bad squeaks in the floor at about the most walked on area. If there was one thing I hated, it was a squeaky floor. There was nothing like trying to be quiet at night not to wake the kids and then hitting “the squeak”. I insisted those be fixed. The longer I lived in that house, the more I came to hate that gray paint and those squeaks. I told Fred that as a woman, I would never again buy a house that had squeaky floors like this one did right in front on the stove and at the top of the stairs just off the loft area. I did not want to lose a perspective buyer because of that. Although the house was only ten years old, the floor in the kitchen was a ten-year old linoleum and it was yellowed. We decided to completely redo the kitchen floor and fix the squeaky loft as well. If we were going to sell this house, I wanted it to move quickly in order to minimize the stress on Zachary and the rest of us. It took two men an entire day to re-do the sub-flooring for the kitchen floor and lay down the new floor covering. Finally, we put new carpet throughout the house except for the basement. That carpet was only two years old and it still looked great. We also had a huge two level deck in the back and had that re-stained.
The couple attached to our duplex was an older couple. Bob was around fifty years old. That man absolutely loved to landscape. His side always looked fantastic. I had done a lot with the flower beds on my side since we had moved in but they never looked as great as his did…not even close. Anyway, Bob offered to do the yard work for us. He mowed our lawn (something he used to do whenever we went on vacation, without us ever asking), put all the new wood chips in the flower beds and made them look quite nice. I always used to tell him he should go into landscaping. He did a lot of work and it looked great! I would really miss Bob…what a guy… and I would miss his wife, Julie, and the others on the block too, but for us, it was time to leave the city. I think Bob and Julie were glad we had decided to “upgrade” before leaving because if we had sold our side “as is” prior to the upgrades, we would have significantly dropped their property values since we were the “attached” duplex to theirs.
I attended a “For Sale By Owner Seminar” and got all that rolling. We received a lot of calls and showed our home to several families. Some families came back four or five times. We were constantly showing our home to interested buyers. We had twenty six hundred feet of living space, a home large enough for any family. Real estate prices around Chicago were outrageous as far as I was concerned and our home was reasonably priced for this fast growing area. Anyway, within five days, we got a buyer that seemed to fit the bill. He was very interested. Our place looked like a “showcase”. We had completely emptied the house and put everything in the garage before the painting had begun and never moved it back in. We literally lived in the basement, sleeping only on mattresses. We lived like that for a total of about three weeks. I had several very interested buyers, but the one in particular had come back five times and really wanted to buy it. He simply had to arrange for financing.
Again, the stress of the whole situation soon became too much for all of us. I told Fred to take the sign off the front lawn. We had had enough people interested that we should be able to sell it without further showings. The last week of July, we gave Bob and Julie the keys and a telephone number where we could be reached and we headed up to Canada, again. I told Fred, “either one of these families we have shown it to buys it, or we did not sell this year!” Well, we did sell and for a better price than I had hoped for. Of course, our neighbors were thrilled! We had received the best price of anyone selling in this area in the past year and a half or so.
We stayed in Canada that last week of July and returned to the US in mid-August, about ten days prior to our closing on the house. It would be while we were in Canada that I would come to understand more about Zachary’s particular situation.
Zachary always just loved water a little too much for my comfort. My babysitter who was one of my neighbors had an above ground pool that was about six feet deep in the middle. The pool bumped up and rested against a small hill, so that if you were on the hill, you could easily fall into the pool. Jennifer was a great babysitter, but you never knew what a child could do and so, I had always given her strict orders with both Anika and Zachary, that if they were outside, they had to have a life jacket on, every minute. I did not care if they were playing in the front or the back (we lived on a quiet cul-de-sac); I wanted both my children to wear life jackets when they played outside at her house. My neighbors, although I loved them dearly, must have all thought I was a fanatic I am sure. Well, my fears were not unwarranted.
While in Canada during the month of July 2000, on Anika’s eighth birthday, Zachary’s lack of flexibility as far as “direction changes” almost cost him his life. My in-laws owned a cabin by a lake and kept telling Fred and I to go there to “relax”. On my daughter Anika’s eighth birthday, there would be a small family get together with a few of her aunts, uncles and cousins up at the lake. All day, Zachary had worn a lifejacket if he was outside; even if there were many adults around, I had always had a fear of him drowning. Before we knew it, it was close to 10:00 p.m. and we still had not done the birthday cake thing.
We finally got around to the birthday cake for my daughter who had turned eight years old that day. Zachary was almost three years old. Since Anika was born in July, I thought I would put sparklers on the cake instead of candles. I had just made myself a cup of decaffeinated coffee and seen Zachary next to me while I was making it. Less than two minutes later, the sparklers were lit on the cake and we were all singing “Happy Birthday”. While we were still singing, my sister-in-law, Christine, said, “where’s Zachary?”, thinking he would like to see the sparklers. As soon as Fred heard, “where’s Zachary?”, and knowing how much Zachary loved the water, Fred instinctively ran outside in a heightened state of alert.
It was now getting to be quite dark. I started to calmly search for him in the bedrooms, thinking for sure that he would be playing under a bed or something. As we searched every room and the attached garage/storage area, it soon became evident that Zachary was nowhere to be found. Almost everyone went outside to search for him. I was a total ball of nerves and stayed inside, thinking we must have just missed a spot in the three-bedroom camp. I began to search closets, look under every bed, etc. Where could he have gone? I had just seen him about two minutes earlier. That was right about the time Lucky, my sister-in-law’s Australian Shepherd barked outside. Australian Shepherds were farm dogs, and if they did not have a herd to protect, the family became the “pack”, and especially the smallest member of the family became the one they naturally wanted to protect most. Although Lucky had barked, no one had paid attention to it…we were all inside... so we thought!
In spite of the fact that Fred had been sitting by the door in a rocking chair, Zachary had indeed managed to somehow sneak past him and everyone else and go outside. On one side of the camp, there was a creek, flanked by a road that curved near the property we were on. A fifty-five mile per hour limit would not allow a car enough time to see Zachary and stop had he made it to the road. I knew that if Zachary spotted a road, he would follow it. If he got to the road and decided to walk “the line”, he would follow it...that could be the sideline indicating the shoulder or the centerline...whichever one he happened to “get to”. Then, he never went “off course” unless forced to by someone else.
On the other side of the camp he could get lost in the bushes. From the front of the camp, it was probably about eighty feet to the lake. Once outside, Zachary could be at the lake within thirty seconds. There was a small dock going into the lake. Fred went up and down the property shoreline, a span of probably seventy feet. As he went by the dock, at 10:00 p.m. or so that night, he thought he saw something moving at the end of it. There was Zachary, at the very end of the dock, facing away from shore, chest high in water, with a watered down diaper, holding on to the very end of the dock with his little left hand. Had he taken one more step forward or lost his footing, he surely would have drowned. Looking back on that night, I knew that because of his lack of flexibility in changing direction, Zachary would not have “come back” toward shore.
This had been too close for me! As Fred and I went to bed that night, I said to him, “Come to camp, relax…. we’re leaving in the morning!”. The experience had only further stressed Fred, too, and he totally agreed that being close to water like this was just too dangerous for Zachary. The funny thing was, I had never realized just “how much” Zachary lacked flexibility in changing direction until that experience in the summer of 2000. Before that, I had attributed his screams in stores when I changed direction to his having wanted to see something more closely in an aisle or to his not having been able to touch something he wanted to touch, to those terrible twos that never seemed to go away. His throwing himself on the ground early on when we went on walks, I just saw as “autistic behavior”, not recognizing at the time that this was more than that, that the problem was the whole “change in direction” thing. As I thought about it some more, I now “saw” the problem…it was the “change in direction”. It all made sense now.
I recalled that on early walks, if the parent taking him for the walk, or the family, together, decided to go the way opposite to that Zachary wanted to go, he would throw himself or “collapse” down on the pavement, on his back, screaming and refusing to get back up. He would pull the “jelly legs” routing if you tried to make him stand. Looking back, I could now see why that was, but back then, I did not make the connection, that this particular problem with changing direction was part of his condition. I used to just see everything as part of the catch all of “autism” but I did not see “the particular problem” until the near drowning episode. I now “saw” the real issue and how this immense lack of flexibility had nearly cost him his life. I resolved to work on making him more flexible when it came to changes in direction. It would still take a lot of work to get Zachary to overcome this particular problem.
When there were no “distractions” at the park, I would practice making Zachary “change directions” without his realizing it. He would get so into playing that he would not notice what I was doing. I would show him, “walking backwards”, then “walking forward”, “walking sideways”, “going up the stairs”, “going down the stairs”, as again, I made a game of direction changes and explained to him what I was doing as I did it. I would make him chase me in the park, again, switching quickly from one direction to the other...over and over. Eventually, walks to the park did become fun again and I really enjoyed them. As often as we could, we would go as a family and all get involved in Zachary’s play time. If kids Anika’s age were there, I would just let her do her own thing because I knew how hard all this was on her too.
Although we spent most of our time with Zachary, we were seeing we needed our time too. Anika was in swimming lessons three times a week and on a soccer team. That helped her tremendously. Fred and I took turns taking her out to restaurants. We found it very difficult never being able to go as a family any more. We used to love doing that. For Fred and I, quiet time usually came while Zachary was on the computer or while he watched a video. We kept these to educational videos and software. No junk!
We spent a lot of money on educational videos and software for both Zachary and Anika. For Zachary, some of the best ones we had were called “Baby’s First Impressions TM” by Small Fry Productions out of Atlanta, Georgia 30360 (800, 521-5311, www.small-fry.com). There were several videos, each covering a specific subject such as shapes, numbers, animals, foods, seasons, body parts, opposites, sounds, etc.. These were excellent. Another good series was by Babyscapes TM. These included videos on colors, letters, numbers, and shapes in motion. BabyscapesTM was at Box 37038, Las Vegas, NV 89137 (888-441-KIDS, www.babyscapes.com). Another good series was the Richard Scarry’s Best ABC, 123s and Learning Songs Video Ever. These were available at most major retail stores. The best series for Zachary, however, were the Dr. Seuss Beginner Book Video Series by Random House (Randomhouse.com). These were available through Amazon.com under the “videos” section. At first, Zachary did not like these much, but later these videos became absolute favorites and their “silly” themes were enjoyable for the entire family. These were all excellent videos and well worth the cost.
For Zachary, the best educational cds we had found for computer use were the following:
Living Books (a Random House/Broderbund Company). This company provided the following software: a) Dr. Seuss’ ABCs (Zachary’s all time favorite for a very long time – the one that had taught him the alphabet without my even knowing it – also available as a video through Random House!), b) Dr. Seuss’ Green Eggs and Ham, c) Dr. Seuss’ Cat in the Hat, d) The New Kid on the Block, Poems by Jack Prelutsky and many more. These were excellent programs as they all had a “Read To Me” feature whereby Zachary could just listen as the pages “were turned” or a “Let Me Play” feature whereby he could interact with the “book”. This company could be reached at 800-776-4724. Broderbund also made a program called “Kid Pix” that allowed children to use clip art, “paint” and develop creativity. Another excellent software program.
Knowledge Adventure made several programs under the Jump Start brand name. Again, these were excellent. These included: Toddler, Preschool, Pre-K, Kindergarten Reading, 1st Grade, Reading for 1st Grade (one of their best for Zachary right now), and several others. This company could be reached at jumpstart.com or 800-542-4240.
Knowledge Adventure also has the “Reading Blaster” and “Math Blaster” line of products and again, these were excellent. For these products, we contacted blasternaut.com or 800-542-4240 (same number as the “Jump Start” series).
The Learning Company made several programs under the “Reader Rabbit” brand name. Again, these were excellent. These included: Playtime for Baby, Toddler, Preschool, Kindergarten, Math (Ages 4-5), Reading (Ages 4-6), 1st Grade and several others. This company could be reached at learningco.com or at 617-761-3000 (customer service).
Scholastic made a product called “I Spy Junior”. I found I could really use these programs to help develop Zachary’s vocabulary. I would point to things on the screen and tell him what they were. I also used the “I Spy” books by Jean Marzollo to teach him the names of dozens of everyday objects/things. The books could be picked up at pretty well any bookstore. The Scholastic software could be obtained through Scholastic.com.
As far as music, we played a lot of classical music for Zachary. That, we often did just by finding a good classical music radio station, although we had our own CDs as well. He also loved to listen to soft harp music when he went to bed. For travel, we found that a series available through TIME LIFE Music kept Zachary the most entertained/happy/ quiet. This was the “100 Kids Songs” from “Mommy and Me”TM and “100 Sing-A-Longs for Kids”. We had purchased both of these via Time Life Music as a packaged deal. Time Life Music could be reached at Timelife.com.
We found another tool, a “healing” CD put out by John Hagee Ministries. It cost approximately $20.00 and consisted of verse after verse on healing as contained in the Bible, set to a soft, musical background. We played that CD for Zachary quite often. For those who are interested in obtaining this CD, it can be purchased through John Hagee Ministries at web site jhm.org or 800-854-9899 (product #O3C).
A word of caution on CDs. Zachary’s love for spinning was not limited to inexpensive things. He used to constantly put a finger through a CD hole and then spin the CD on his finger as fast as he could. Unfortunately, we lost many a good program that way. It got very expensive very fast to have to replace CDs. I do not even want to think of how many we had either totally lost or had to replace because of this. So, I started to work more and more with Zachary as he worked on the computer (although he was quite capable of working on his own). The computer was a powerful tool for Zachary and we encouraged his use of it, in spite of his young age. There was software out there for one year olds and we believed autistic children such as Zachary needed all the advantages they could have, and the computer was something he absolutely loved.
Although the cost of some of these resources did get to be pretty substantial, there were ways to limit expenses. A list of “recommended gifts” to family members to have some of these items purchased for birthdays, Christmas or other special occasions was always an option.
The entire subject of computers/CDs brought me to another discussion that needed to be addressed. One of the many books I had read on autism went through “good jobs” for these children. As I read that book, I got very discouraged. I think it was surely written by someone who did not fully understand how brilliant many of these children often are. The jobs were primarily janitorial, some assembly line type work, etc. I must say that I really disagreed with that author...so much so, that I ended up tossing the book in the trash because that WAS where it belonged.
In working with Zachary over the last eighteen months or so, I found that his love for learning was great. He loved to solve puzzles, work on the computer (I say work because almost everything he did was educational), count, and now, read also. I think any position that involved the use of these skills would be a valid career choice for such children. That would include things like computer programming, private investigator, chemist, medical examiner, FBI agent, mechanical engineer, etc.
If there was a puzzle of any kind to be solved, or things that needed to be “in order” or “where they belonged”, these I saw as ideal career choices for autistic children. My point here was simply to tell parents not to underestimate their children or to drastically lower their expectations for their child. Zachary needed a chance before he needed a label. I was not willing to label him as quickly as everyone else wanted to. Older books on autism indicated that up to 75% of these children were mentally handicapped with Intelligence Quotients of 60 or lower. Not being able to communicate properly because his brain was not functioning properly as far as “normal communication” did not make Zachary “mentally handicapped”. And, knowing what I now knew of Zachary and how he made a game of “giving wrong answers”, I saw this all the more. I truly believed many of these children were in fact quite brilliant. Everyone was good at something my mother always said. I was determined to find that “something” for Zachary and encourage it.
Having worked with programmers in the past, I knew that even a self-taught programmer was often better than one who went to school to learn computer programming because a self-taught programmer had a “talent” and “love” for the discipline. I promised myself that as Zachary grew, I would focus on his talents rather than focusing on his weaknesses. We lived in a world that always wanted to emphasize social skills, and I have to say, that in today’s society, not having the “block’s biggest partier” was not necessarily a bad thing. Social skills would come as Zachary continued to develop. In the “grand scheme” of things, did it really matter to me down the road whether or not Zachary learned to say hello to another child at age two or at age four...probably not. I knew that Zachary could and would be a value to society. The inability to physically verbalize something or difficulty in communicating did not mean that he was mentally handicapped and I never forgot that. I would not allow one or two tests to label a child as “in the 1st percentile or 50th percentile. For too many children, I now felt, testing was not really “intelligence testing” but rather a way for schools to make their case for more funding! It is also easier to blame failing schools on “brain damaged children” than on incompetence and lack of accountability within the school system itself.
Again, this brings me to another unpleasant discussion...the fact that autism, like so many other learning difficulties/health issues was too often a matter of BIG BUCKS!
The more “special needs” kids schools have the more money they get and make no mistake about it. In Canada, for example, it used to be that money for a “special needs” child was actually “Velcroed” to THAT child. My sister-in-law in Canada saw first hand how laws changed and now, funds for “special needs” children, such as her PDD child went to “special programs” not to the individual child and so, in most cases, the school used this money “at their discretion” for “what they needed” to “build up” their programs. My sister-in-law, in Canada, for example, fought and fought for her PDD child (now 11).
About $17,000 had been allocated to the school for Andrew specifically, and when “Velcroed” to the child, Andrew had his own “aide” at school for most of the day. As the laws changed and the funding for special children “went to the program in general”, Andrew lost his special aide. The school did not care if he learned. His mother went to school to help with her son almost everyday. She was less than pleased with what she saw as “special education”. With no aide “for him” specifically, Andrew was being left behind at an increasing pace. With too many “special needs” children (up to six or seven) for one aide, children were falling behind - more than ever. Lessons, my sister-in-law had seen, were almost non-existent or unplanned. “Something” was simply “pulled out of a bin” and that was the lesson or homework given. When my sister-in-law suggested role-playing exercises in communication, the school “could not allow it” because that could not “be added” to the computer’s software for the board of education...the “administrative software” did not allow for that. As a result, my sister-in-law pulled her son out of school and decided to home school.
Andrew was doing much better now. But, the school insisted on coming to the house to “check up” on him. After all, they had lost funding...$17,000 for one child alone. My own sister was also a schoolteacher at elementary level (many teachers in my family) and each time I went to Canada, she saw Zachary’s progress. She also told me one time that there was no way Zachary would get the time he needed in a school setting. Surely, I felt, the same situation existed in the US.
“Special needs” children, I believed, were quickly becoming the “money generators” for the school system...the “reasons” for “more funding from the government”. How else could you explain the fact that so many children were now on medication in schools? Did not the fact that a child was on “medication” in and of itself “prove” to the government that these were “special needs” children? Parent after parent told me how “the school” had suggested medication for their child – even when the parents and other adults saw absolutely no need for it. Only the “school administration” saw the “need”. Why was that?
I am not saying that medication was not necessary for some children, but rather that I believed it was being used more and more as a “reason for additional funding”. Unfortunately, as my sister-in-law saw first hand, for too many of these children, school had simply become a “glorified babysitting service”…and an expensive one. The genetics of the last generation had not deteriorated such that so many children could now be so “learning disabled”...I just did not believe that! Also, why was it that we now had all these “hyperactive” children in our schools, children that now “needed” medication? First, I would certainly question one’s definition of “hyperactive” in our school system. Could the fact that we had so many “hyperactive children” possibly have anything to do with the fact that children often now received only ten minutes to eat lunch and had perhaps fifteen minutes of outside play time. The fact was that today, kids had less time outside to play and burn energy. Recess was shorter or non-existent as children were sent to “detention” instead of going outside to burn off some of their energy.
I was a very active child when I was young, but being energetic should not make you an “automatic” candidate for drugs. There are always alternatives - that was how I looked at things. I did not have to put Zachary on prescription medication for hyperactivity... magnesium supplements could help him with that and $15.00 provided a one-year supply of magnesium supplements. Prescription drugs “proved” that a child was “special needs” and, for schools, that was more profitable! Too often, when you want the real answer to something, unfortunately, today, look no further than the all mighty buck! My advice to any parent would be to find out how much your child was “worth” to the school system if labeled as a “special needs” child...and then, to get a second opinion from an independent source, someone who had absolutely nothing to gain financially from evaluating a child as a “special needs” candidate. Only then would I, as a parent, even consider labeling my child as such.
I firmly believed that for those children in today’s schools who were indeed “special needs”, those funds should absolutely be “Velcroed” to that specific child ... not to “the system” as that was simply asking for abuse and misappropriation of funds...with the child being the ultimate loser in the end! I was sure not all schools looked at children as “budget dollars”, but I feared too many did. John F. Kennedy once said: “Children are the world’s most valuable resource....and its best hope for the future”. Too many schools - and parents - had forgotten that!