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Toilet training Carl.

Toilet Training Carl

I'm sure that one time or another, most of us have been told of our children's limitations. Whether physical or mental, their disabilities will keep them from achieving. So we were told.

In our case, our son, Carl, was diagnosed as being severely disabled; that even educating him was a "waste of monies." Milestones that parents of normal children look forward to as their children grow, we couldn't even expect to hope for. Like toilet training.

A little background on our beautiful son: Carl was born July 25, 1978. We took home what we thought was a normal, healthy baby. Little did we know what was ahead of us. When he was six months old, we became a little concerned. He did not seem to be developing as we thought he should. Carl was seen by several doctors who said that all babies develop at different rates.

At eleven months, we had Carl tested at the Winston Prouty Center in Brattleboro, Vermont, a pre-school for children with a wide variety of problems. He was diagnosed as being developmentally delayed. (That's what they all tell you when they don't know what's wrong.) When he was 14 months old, he began attending the Prouty Center five days a week. This continued until Carl was five years old.

When Carl was two, he was seen by specialists who told us that he had suffered from some sort of damaging brain insult or injury. They asked us if we had considred the nuclear power plant in our town as the cause. When you don't know the cause, you consider anything and everything. Was it something in our water? Was it the deodorant I used when I was pregnant? Was it bad genes? We all go crazy with it.

The specialists recommended that my husband Bill and I go for genetic counseling. At the time, we thought that meant blood tests from each of us which would tell us whose fault it was. How wrong we were! If nothing else comes from having a special needs child, you sure learn a lot. Now I even know what an IEP is!

Finally, we wanted more answers, so we went for genetic counseling. The genetic specialist, Dr. Eugene Hoyme, was one of the kindest doctors we've met. (And we have seen many.) He asked us a lot of questions, measured Carl's head, studied his face and ears, and even looked at his fingerprints under a magnifying glass. Dr. Hoyme left the room for about five minutes, which seemed like an eternity. Then he came back with his diagnosis: Rubinstein-Taybi Syndrome.

He looked at Carl's baby pictures and told us that he could have been diagnosed at birth, had anyone known what they were looking for. Many children with RTS have very obvious facial features and other health and physical identifying characteristics at birth. Carl had none of these, and there is still no concrete answer as to what causes RTS.

Enough of that. We all have our own stories and that is how ours came to be.

Carl attends a regular school in another town, with a self-contained classroom for students with multiple disabilities. He is very active and needs constant supervision. His development has been slow, but he is making progress. His level is about that of a two to three year old, with his speech and fine motor skills below this level and his gross motor skills above it.

TOILET TRAINING PLANNING

In September of 1987, Carl got a new teacher, Jan. She had extensive experience toilet training children with severe disabilities. Jan seemed nice and she seemed to know her stuff. She said she had not seen a child more ready for training than Carl. At his IEP meeting Jan asked us if our bathroom was upstairs or down. I replied that we didn't have a bathroom, we had an outhouse! Her jaw dropped open and she had nothing to say. Then the school nurse spoke up and said, "You didn't know you were in Vermont, did you Jan?" Jan had recently moved from Pennsylvania.

She gave us the book, Toilet Training the Retarded, by Foxx and Asner. Did that mean our son was retarded? Must be. I read the book. It wasn't the easiest book to read. Sort of like reading a manual on How to Clean Toilets. I got a basic understanding of what we were going to do with a few modifications to fit Carl's needs.

We all have ways of coping with our children, and humor is one of the tools we use. That is how we survive. At the beginning, Jan said to buy bigger underpants than Carl would normally wear. I didn't even know the size he would wear. I had never bought anything but diapers--about 16,425 of them.

Jan got her bigger underpants. My sister has a costume shop and just happened to have a men's pair of BVD's in size 56. I put them in Carl's bag and off to school they went. Thank God, Jan, too, can appreciate a little humor.

THE EXPERIMENT BEGINS

We started the toilet training program on January 19, 1988. If we had known what we were really in for we may never have begun. No achievement is minor though, and we know what it takes for our children to reach even the smallest goal. I visited Carl's classroom on the first day of the program to get more directions. As I walked in the door, I almost cried. There he was sitting in the corner with Jan, a spoonful of food held to his mouth. She was saying, "Carl wet, no eat."

But Carl loves food. This was the program? This was what we would have to do? No way! It seemed so barbaric and so cruel. I have a soft spot when it comes to my oldest son. I can't do this to him. To make matters worse, my mother-in-law was with me. She saw it too and I know it hit her soft spot for Carl. I saw the water welling up in her eyes.

Part of the program was to give Carl as much fluid as he would take. He's never been a great drinker, so this was going to be tough. We gave him salty fluids to make him thirsty, and on the first day he drank 72 ounces of fluid. Compare that with the 24 ounces he usually drinks. There were six accidents that first day, and lots of Positive Practices.

Positive Practice -- how we came to hate those two words. Positive Practice is a six-step part of the program. First, make him feel his wet underpants, then help him pull them down, make him sit on the toilet, get him off the toilet. Next, sit him on a chair and say, "Carl wet, no eat," while holding food near his mouth. Then start over from the top -- five times! Then there were the dry checks every 30 seconds, making Carl feel his pants and saying, "Carl dry, good boy."

We had to chart everything. How much he drank, when he voided, either in his pants or in the toilet. Looking back over all his charts, I found a note I had written at 7 p.m. on the third day, "Bedtime, thank God." We spent so much time in the bathroom, all our time, except when Carl had a success. The bathroom was where we lived for much longer than we wanted to.

WEEKEND PROBLEMS

Weekends were the hardest. Bill worked every one. We made arrangements for our other son, Alex, to be away for the first few as it was too intense and, at three and a half, he would have a hard time. It affected all of us. Bill would come home from work on the weekends and I would be in tears saying, "Bill, I can't do this anymore." I would even try and let him get his clothes changed before saying anything, but I couldn't. He was kinder than I would have been. I'm afraid I would have called and said I have to work late, and sit in the car somewhere! We would take half-hour shifts.

Carl would get so frustrated, so angry, he would pull our hair and scratch our faces. He cried, I cried. One day I heard Alex tell Carl, "You see that piece of ham? You can't have it until you go pee-pee on the toilet."

One thing that really helped to preserve our sanity was school. Jan carried the weight of the program during the day while Carl was at school. The program could not have succeeded without her participation in this joint effort. There were days I just didn't want to try anymore. Jan said it was taking longer than she expected. Carl was so stubborn. There were many times I was hoping Jan would say, "This is not working, let's forget it for now." But I knew there was no turning back. The more successes he had, the more determined we became. It was a battle of wills; who was going to win? In the end we all did. Especially Carl.

REWARDS

Another part of the program -- a very important one -- was rewards. Carl has a passion for magazines. He would kill for one. He used to eat them and tear the pages out, and our floors would be carpeted with pages of magazines. Now he just flicks them and mouths the pages. When he had a success, we would give him a big fat magazine.

Carl also loves music, so we used a video tape of the group Highway 101 playing their songs. He must have watched the tape 400 times. He got so he would have a success, then go out of the bathroom directly to the television.

Of all the school years we have had, this one had more snow days than any I can remember. Jan always showed up on those days. I will never forget her for that. There were days my mother or Bill's would come over to help. And what a help just having someone to talk to.

We had to be very careful about what Carl watched on television. One time, he was watching a movie called "Rat Boy." It was about a creature who was half rat, half boy. Carl was laughing so hard, he wet his pants. Then there was "Ewoks" the sitter brought. That one got put away.

Then there was the cat. Alex wanted one so badly. Carl was quite mean to Kitty. He would carry the cat around by the tail, flicking it like one of his magazines. The cat didn't scratch Carl, so he would chase that cat around the house laughing and wetting his pants. This was well into May and Carl had had several weeks without accidents. Bye-bye, Kitty. We found a good home for the cat and I really think Alex understood. There are sacrifices we all must make on a daily basis, but this was a big one for Alex. The cat was not worth all the work we had put into Carl's independence, just to have him regress.

SUCCESSES

Several months into the program, Carl was doing really great, with more successes than accidents. We still had to watch him carefully, but not with the intensity of the previous months. One day I was coming down the stairs, tripped, and fell, twisting my ankle. I was on the floor in agony, and Carl was standing at my feet laughing so hard at me that he wet his pants. I could not get up, my foot hurt so much. All I could think was Positive Practice, Positive Practice . . . I have to do Positive Practice. Finally I stopped seeing stars, but the pee was running down the floor and I was getting wet. Get up...Positive Practice, Positive Practice!

It's been over a year now. We cannot recall the last time he had an accident. He has also learned to pull his underpants and pants up on a verbal cue or a sign. A special success, since fine motor skills are one of Carl's lower skill areas.

In October of 1988, Carl went away to be bowel trained as he has a lactose deficiency, causing very loose stools. He also needed to be monitored at night. He is doing well; it is much easier than the urine training. He is about 80 percent there. We know he will succeed; it may not be next week or next month, but ask us in a year. There is no time factor with our kids. Never put a time limit on our kids.

One of Carl's biggest rewards came when I wrote to Highway 101 to let them know that without knowing it, they had been a big part of Carl's success. They sent him an autographed picture of themselves. On parents' night at school, Jan hung the picture out in the hall with a note saying Carl had received this as a reward for a special achievement he had made. And on Jan's desk is a picture of Carl sitting on the toilet with my sunglasses on, just smiling away. She only shows it to certain people. People who understand.

There are achievements for our kids. And there are rewards.

PHOTO : At the beginning, Jan said to buy bigger underpants than Carl would normally wear. I didn't even know the size he would normally wear. I had never bought anything but diapers--about 16,425 of them.

PHOTO : Nancy R. Dunklee lives in Vernon, Vermont with her husband, Bill, and their two children, Carl, 11, and Alex, four. She is the owner of Barn Door Wreath & Greenhouse. She writes that she will soon begin training for Parent to Parent of Vermont, a new program for parents with a child with a disability to provide support for parents who have recently learned that their children has a disability.
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Author:Dunklee, Nancy R.
Publication:The Exceptional Parent
Date:Jul 1, 1989
Words:2333
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