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WADE'S STORY
  Wade was born February 10, 1973 in Gallup, New Mexico. He had a fever while we were still in the hospital, so they took him out of the nursery and put us in a room together at the far end of the hall. I nursed and changed him and took care of him when he needed attention. The doctor kept us in the hospital an extra day to see if anything developed from his fever. They couldn’t account for why he had a fever, but the doctor said that he didn’t have a normal startle reflex. I wondered how important that was and assumed it would develop later.
Wade had one ear infection after another the first year of his life. The first time the doctor put him in the hospital, because he was very dehydrated, he was about seven months old. I was concerned because I breast fed him and he had NEVER accepted a bottle or a pacifier. The doctors told me they could handle that and implied that I had just spoiled him. I would actually enjoy a little more freedom, if they could get him used to taking an occasional bottle. On the third day he was in the hospital the doctor phoned me at home, saying they needed me to come in to nurse him. He said you have a VERY PERSISTENT baby (Wade continued to demonstrate that over the next 23 years). We lived 100 miles from our doctors and the hospital, and we had three other children, the oldest being seven years old at the time. That was a very difficult year.
When Wade was one year old he weighed 13 pounds (birth weight was 8 lbs. 8 oz.). He looked like the pictures I had seen of starving babies in third world countries. Just when it seemed like his ears were cleared up and he been off antibiotics for a few days, he would get a new ear infection. It was not unusual for me to put him down for a nap thinking he was fine, only for him to wake up in an hour vomiting, with a fever of 105. The doctor had me take him to the PHS hospital in Chinle (only Navajos would allowed to be patients there) everyday to weigh him and then report to the doctor and he would decide if we needed to take him to the hospital in Gallup or not. When Wade was 13 months old I asked the doctor what he was thinking when he saw a baby that was never healthy. He mentioned two or three options, but the only one I had ever heard of was cystic fibrosis.
The doctor thought it might help if he took Wade’s tonsils and adenoids out. We were in the process of scheduling a time for the surgery, when the doctor asked, “Do you have a dog?” I said, “No, well, not really. We have a little poodle. That doesn’t count because they don’t shed.” He said, “Get rid of it and all of the plush stuffed animals, dust (not an easy task in the middle of the Navajo reservation), feather pillows and wool blankets.” We did everything he told us to do. It was very hard to give our little dog, Alfie, away and our girls, especially Robin hated to give all of their stuffed animals away, but Wade was so sick that we were willing to do anything that might help him get well. Wade was now drinking from a bottle and the  doctor suggested that we put him on Pro Sobee, the same as Lucinda and Doug had been. That was the end of the constant ear infections! Wade gained weight and became healthy for the first time in his life.
It had become very difficult for Wade to be separated from me and he screamed whenever I needed to go anyplace without him. He wasn't willing to share me with others, either. If I was on the telephone he would set up a racked until I got off the phone. He had learned that when I was teaching piano lessons, one sure way to get me off the piano bench and paying attention to him, was for him to play with the telephone. He disrupted lessons for some time with that little game, then one day I decided that it didn't matter. I was not planning to call anyone in the middle of teaching a lesson, and I didn't want anyone to call me. I instructed my students to ignore Wade and his telephone activity. When the telephone trick didn't get the usual reaction from me, Wade walked around the room (25ft cord) tapping it on different objects. When I continued to ignore what Wade was doing with the telephone, he finally walked over and handed it to me, as if to say, "Hey, didn't you notice that I have the telephone. Aren't you going to do something about it". I said, "That's nice, Wade. You go play with the phone while I teach this lesson." Without even realizing it, I had stumbled onto a very powerful tool. After that, the telephone was never an issue. That solved that problem just like that!
The psychiatrist in Salt Lake City said that Wade could talk, but he was just too lazy, because we gave him what he wanted when he pointed and squealed. He told us that if Wade wanted a piece of gum, we were to insist that he say the work "gum" or he couldn't have it. We wanted to help Wade, so we followed the doctor's instructions. Three days later, I was awakened from a sound sleep, with Wade standing by the side of my bed, gouging my cheeks with his little fingernails. He was very angry with me. I phoned the doctor the next day to see what the plan was now. He said Wade and I were in a power struggle (duh!) and to cancel that plan. I was happy to get things back to normal.
Sometimes we wondered if Wade would even grow up. He drank bleach, kerosine, an entire bottle of Triaminic syrup, etc. etc. We kept the phone number of poison control handy and put little green "Mr. Yuck" stickers on containers in an effort to let him know what was dangerous for him to drink.
We lived in our mobile home while we looked for a house to buy. It was parked in a mobile home park just off Highway 50 East, going into Carson City. It is six or eight lanes of very heavy traffic.  One day Wade headed for the highway, I chased after him, only to witness him race across the road without even hesitating. I waited for a break in the traffic so I could get across to get him, holding my breath that he wouldn’t decide to come back before I could get to him. When I caught up with him he was laughing and thought we were playing a fun game. In the four years our family lived in Carson City, I became more familiar with the traffic on that road. I marvel to this day that he escaped being hit when he ran across that road.
Wade screamed at pre-school everyday, from the minute I walked out the door until I came back to get him. The teacher and I decided that we would try just 45 minutes a day. After a few days she hired another woman who could take him in their little library and close the door so it was not as disturbing to the other children. After two or three months of trying everything they could think of, the teacher told me they would give it one more month. If the situation didn’t improve, they would have to give up. I understood their position and appreciated their extraordinary effort to help him. About that same time, our doctor in Reno had prescribed a new medication for him. She didn’t know if it would help him or not, and we wouldn’t know for a few weeks. Just as Wade’s “probation” came to an end, the medication kicked in. His teacher said she hadn’t believed it was possible for him to behave the way he did, now. When I stood at the door for a minute to talk to his teacher, before school one day, he tried to push me out the door. He wanted me gone!  He happily finished out that year and attended there the next school year, “graduating” in a little cap and gown with the other children.
When Wade was about five years old, he had his first grand mal seizure. I had no idea what was happening to him. We waited about 45 minutes in the emergency room before we saw a doctor. By that time, Wade was sitting quietly on the table. The doctor just said, “He looks like he is fine now so you can take him home”. Perhaps he thought this had happened before and I knew what was going on. I told our pediatrician what had happened and she prescribed seizure medication for him. That became the new norm.
Wade became more and more difficult to manage at home. He banged his head and screamed for hours everyday. The doctor thought he might have to wear a helmet to protect his head. He continued to have NO language. He seemed to understand most of what we said to him, but he had no way to let us know what he wanted or needed. We might get in the car to go to Big- O-Tires (for example), but he may have thought we were going to Dairy Queen. When we stopped at the tire store, he would open his door, drop to the ground, bang his head on the asphalt and scream. I took him to Easter Seals and they said it seemed to them that he was similar to a stroke patient, they can hear and understand but they can’t talk. They told me that those patients become extremely frustrated.
At age six, Wade could ride a two wheel bike as well as any six year old. The problem was that he would race out of the house, without any clothes on, and take off on his bike. He’d turn right in front of cars. We thought he didn't have any judgement! We’d be out looking for a little naked boy on a bike and hope no one was looking when we found him. Our friends who lived about two blocks away owned an ugly old gray pickup truck. Wade absolutely loved that truck. Many times our search for him ended when we found him playing in the bed of that truck. When they decided to sell it, they offered it to us first and we bought it. Even that didn’t keep Wade home. We put sliding chains at the top of our doors and the windows were kept closed and locked. That didn’t keep him in, but hearing him dragging a chair over to the door or hearing the window being opened alerted us that he was taking off. The scariest time was when we found his bike next to a pond. We couldn’t tell if he was under the water, but we knew that he was fascinated with water. A short time later we found him - totally dry, playing over by the school buses.
If Wade could get his hands on a permanent marker he would draw on the walls, wood paneling, carpet, drapes, his clothing (if he was wearing any) and himself. Once he poured a gallon of bleach on a load of colored clothes that I hadn’t removed from the washing machine. Wade didn’t seem to realize that he was being a problem. He was just trying to occupy himself. One time he cracked two dozen eggs on the kitchen floor, then dumped five pounds of sugar on top of it. While I took care of that, he would move on to his next project. We had been having a lot of problems with the toilet over flowing. The plumber retrieved a handful of toothbrushes that Wade had flushed down the toilet. I had wondered what was happening to all of our tooth brushes. He enjoyed watching them swirl in the water before they went down.
 The first summer we were there, we were concerned about having a power lawn mover around out children, so we bought a hand push lawn mower. Doug just pushed it across the lawn to try it out and Wade raced over and stuck his hand in the blades as they turned, cutting off the end of one of his fingers.
We bought the largest bouncy horse we could find, hoping it would be an outlet for some of this energy. The horse sat quiet and took up space, but Wade loved his peddle fire engine. He removed the steering wheel and took it everyplace he went. I guess that was his security blanket. If it was ever misplaced, we had a major crisis on our hands.
One night about midnight, Court and I were in bed with Wade lying between us, and he was screaming. I was alarmed when the door bell rang and I looked out of our bedroom window before going to the door. My worst nightmare was about to come true. A police car was parked in front of our house, with its lights flashing. When I went to the door the officer asked, “Do you have a little boy?” I replied, “Yes”. He then asked what our little boy was doing. I answered that he was screaming. When he asked why Wade was screaming, I told him I had no idea, which was the truth. About this time, being distracted by all the excitement, Wade quit screaming and came out to see what was going on. They could see that he was fine. I told him that there are homes where children are abused and there are homes where parents are abused, and that our home was one the latter. (That was how I felt at that moment.) A week or so later, we were getting ready to go to a dentist appointment and I had Wade ready to go a few minutes early. He found waiting very frustrating, so he was lying on the front lawn kicking and screaming. I was at the window, keeping an eye on him, when a police car pulled up and two officers got out of their car and started walking towards him. He took one look at them, got up and ran in our house. They looked at each other and got back in their police car and drove away.
How could the police suspect us of abusing our children? I knew that I didn’t want the police at our door again, so I told everyone in the family to just give Wade whatever he wanted, so he wouldn’t scream. Ten year old Robin said, “Are you serious?” I was, at least at that moment. It only took a day or two to realize that we couldn’t live like that (we were creating a monster). My attitude changed to “We're doing the best be can. If they don’t think it is good enough, they can have him." We didn’t hear from the police again.
Wade loved carnivals more that anyone I have ever met. Doug, Wade and I were riding a Ferris Wheel when it stopped with us on the top (Ferris Wheels have always made me nervous). Wade decided to get off! He was about six years old and small enough to fit under the bar the attendant had snapped shut. When I told him to sit still, he screamed, stiffened out his body, sliding under the bar. Now he was sitting on the footrest and his weight make our seat tilt forward. Doug was screaming and I had a hold of Wade’s hand, trying to pull him back up in the seat. I was able to get him back on our seat, but I swore I would never take him on the Ferris Wheel again.
Another time, Wade and I were riding home from a doctor appointment in Reno when he opened the front passenger door and stuck his leg out. I decided I couldn’t take him in the car without someone else being there to help supervise him.
I told Court that Wade was ruining our family. I thought we needed to find a place where they knew how to take care of children like this. He said, “You don’t mean that.” but I really did. I couldn’t live like this anymore. Someone referred me to a doctor they felt could recommend a good place for Wade. I explained to the doctor that I didn’t want him to only have custodial care. I wanted him to be loved and taught the things he was capable of learning. The doctor told me there was no such places. He said that I should take him home and do the best I could with him. I was disappointed to have not received an address and phone number of a facility that could accomplish what we had struggled to do without success.
I got on my knees and asked for help. I expected the answer to be that our children would be changed, but I was the one who changed. I discovered that I was better able to deal with the challenges we faced.
When Wade was eight years old, he started to try to use gestures to communicate. We briefly considered using his “signs”, but then we thought about the fact that our family would be the only ones who would be able to understand him. We wanted to make him as functional and independent as possible, so I decided to go to college and learn sign language. His special education teacher was adamantly against that idea. She said, “If you teach him sign language he will NEVER talk.” I said, “He may never talk anyway and he has to have some way to communicate.” As we taught him a few signs, he started to talk. The more signs he learned, the more he talked. Much of his speech was not understandable to strangers, but now, for the first time in his life, he could communicate his feelings, emotions and desires to us and his teachers.
We were surprised to learn that our new school district didn't have a local program for Doug and Wade. Wade was tested and placed in a program run by Utah State University in Logan, 25 miles North of Brigham City. Each of our boys spent two hours each way traveling to and from school everyday. That is difficult for any child, but especially for a child who is hyperactive. Their buses came for them between 6:15-7:05am and they arrived home between 4:30-5:00pm. Managing their bus behavior was a constant challenge.
 
The first summer we were in Utah we took advantage of living close to the amusement park, Lagoon. Court and I had been to Lagoon as teenagers and we were excited for our children to enjoy the experience. We hadn't been there long before we lost Wade. We searched from the ground and from the air for four hours, with no success. Security hadn't seen him. It was a hot day, he wasn't familiar enough to know where to get a drink of water or where to find the restrooms. As the sun started to set, I could only imagine the worst. How could he just disappear? I believed he must be in the large pond used for the paddle boats. I had a terrible feeling of fear and dread. Then suddenly, out of the middle of nowhere, there was Wade, sitting by the trunk of a big tree. He was thirsty and hot, but he was okay (I couldn't help but wonder if someone had abducted him, then decided he was more trouble than he was worth, and brought him back).
Just before Christmas that year, Wade's teacher called to say they were having some of the children's eyes examined. She said they would like Wade to have his eyes checked. They
would pay for the appointment but they wanted us to schedule it and take him to it. I thought of all that I needed to accomplish before Christmas, and I didn't think there was anything wrong
with his eyes, but I agreed to take him to see their eye doctor.  The doctor examined Wade's eyes three times, thinking he had made a mistake. Finally he said, "WADE IS LEGALLY BLIND. His vision is 20/400! He can't see anything that is more than a few feet away from him." He added, "He doesn't look blind."
We couldn't have been more surprised, but this did explain several things. It explained why Wade ran or rode his bike right in front of cars; why he tried to get off the Ferris wheel while we were stopped on top; why he opened the car door while we were traveling at freeway speeds and how he became lost at Lagoon. We must have walked away from him, expecting him to follow us, but when we got a few feet away, he couldn't see us and he lost us in the crowd.
Wade would run through the living room and if our tank type vacuum was left out, he would trip over it. He always had to make a little adjustment to run through the doorway instead of running into the wall. I thought he was just klutzy. It never occurred to us that he couldn't see.
Seeing what life was like in an institution, made me very thankful we hadn't put Wade in a place like that. He would not have learned and progressed as much as he had in our home and he would not have experienced the quality of life we have been able to provide for him. I think we would have visited him there and felt justified in putting him there, because without a loving, nurturing family, he would not have improved and he would have behaved (as an adult) the same way he behave as a child. I am extremely thankful to the doctor who told us to keep Wade at home, at a time when most other parents of children with disabilities were being told to put their children in institutions.
When Wade was about ten years old, his Cub Scout den spent a day at Camp Kiesel with several other dens. His leaders invited me to come along to supervise Wade. While the other boys participated in activities that were too difficult and of no interest to Wade, he and I walked along the paths, enjoying the natural beauty of the mountains, forest and streams. We stopped to sit on a rock and I asked Wade if he knew who had all of this made for us. When he indicated that he didn’t know, I explained to him that Heavenly Father had created this for us. He looked alarmed and asked, "Is he done, yet?” Apparently he thought it needed a little more work, perhaps some curb and gutter and indoor plumbing.
Our family benefitted from the knowledge, training and experience Robin received. Robin remembered the doctor who instructed us to not give Wade anything unless he would ask for it. He said that Wade could talk if he wanted to. He was just being lazy. This is what Robin has to say about that. “ One of our greatest basic human needs is to communicate our wants/needs and inner self to those around us. We will use any modality or device within our capabilities to do this. In all of my experience as a speech therapist, I have never met a person who refused to communicate simply due to laziness.”
She also commented on how sign language had influenced Wade’s ability to speak. “Up until Wade was eight years old, he did not have an effective way of communicating with those around him. He had been unable to use verbal symbols (language) to represent what he wanted, felt or experienced. He literally had no expressive verbal communication. When he was taught sign language, he was given the gift of language. For the first time he had a symbol system he could use to express himself to others. It was only after Wade learned this visual system of sign language, that he began to formulate verbal language ability.”
In 1985 our school district decided we had enough special education students in our area to stop busing them out of town take responsibility for providing a program in town. That was wonderful news. Wade would be able to go to school in town. Doug was too old since it was a program for elementary school students and Doug was 15 years old at the time. Jeff, the director of the sheltered workshop, was the teacher hired to teach the new class. I was thrilled for Wade to have him for a teacher. That gave me total confidence in the success of that program.
Two years later we were able to help get a new program started at our local high school. ( click here to learn more about this program and how we did it did). The district made a wise decision and moved Jeff up to be the teacher. Now, both Doug and Wade had Jeff for their teacher.
Wade still did considerable screaming and would hit his head or leg with his hand when he because frustrated. It was hard to know what would trigger his outbursts. He contributed a few holes in the walls, too. Lucinda seemed to say and do things that frustrated Wade and it was not uncommon for him to bite her hard enough to cause bruising. We tried to be very careful how we phrased things to avoid frustration or misunderstandings. It was like walking on eggshells.
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