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By Sherry Engstrom
John, who has PKU, is our second child and is now 18 years old. He is a freshman at the University of California San Diego. He is majoring in Biology, and may study computer science in the future as well. John also runs his own business, EZ TECHNOLOGIES, He specializes in computers and Web pages. Our daughter, Eley, age 21, is a student at UCLA majoring in English (with an Education minor. She will graduate as an Honor student in June and will pursue a Ph.D. degree in education.I am a full-time real estate agent. My husband, John, is a retired Marine. He now works for Carmax as an Operations Manager.
While John was growing up, he always had a very busy schedule. He played sports, learned to play the violin, and went to Chinese school every Sunday afternoon, So that he can speak Chinese fluently. He often was picked by his teachers for school functions (science fairs, TV show projects, computer conventions, etc.)
Both my husband and I have been involved in John's PKU management. We both had to remind him to drink his formula, and we made the formula most of the time. He has been managing his food choices since preschool, though. As he was growing up, we let him attend any birthday party because we had confidence in his abilities to choose what he could and could not eat. However, I always called the mother first, to let her know what John could have. We tried to let John live as normally as other children.
Dealing with the Diagnosis and Beyond
When I first found out that John had PKU, I was hurt, angry, and scared. I really did not understand what PKU was all about. I could not figure out why such a rare disorder would strike my baby John. It took some time for my anger to subside. I realized that it was just something I had to deal with, so I decided to make the best of it. I promised myself I would offer John all of the same opportunities that children without PKU had. The doctors, nurses and dieticians were very patient and supportive of me during this time. They not only tried to help me understand what PKU was, but they also comforted me.
Raising a Successful Child
I think some of the big factors in John being so successful in spite of PKU is that we have a very close family and he always had the support he needed in any arena. We were all there to look after him and help him in all of his endeavors. At a very young age we tried to instill in him the understanding that he was no different than anyone else and could accomplish whatever others could.
Academics have always been a priority in the family, and John was no exception. He was given every opportunity to succeed and we did not lower our expectations for him. We had every faith that he could do as well as our daughter.
As soon as John could understand people speaking to him and he could speak, we began explaining "yes" and "no" foods. He really had no problems dealing with it. His questions were mainly regarding why he had PKU and why the other children did not. We just explained to him that everyone is different in some way. Like people had different color eyes, people had different kinds of bodies. Some were like his and couldn't have a lot of protein, and some people could.
When John was in preschool, his ability to manage his own diet was tested. Everyday snacks were served, usually by moms who didn't know of his restrictive diet. Well, one day hot dogs and chips were being served. John simply passed on the hot dog and asked for potato chips. The mom who happened to be serving the food chided him for not wanting to eat "real food" and wanting "junk food." She told John that if he wanted to eat chips he had to eat his hot dog first. John just told her "I can't eat hot dogs, they will make me into a dummy!" The mom just had no idea what John was talking about and had him sit there and watch the others eat. It wasn't until the teacher returned that the situation was corrected.
John has never eaten forbidden foods nor has he ever expressed an interest in it. At one time, his doctors even offered him a "challenge" in which he could eat regular foods for a period of time and they would monitor his levels. John did not wish to deviate from his diet and declined. John really does not seem to have any problems in managing his diet, though he has never liked his formula very much.
We never made PKU seem like a disability when it came to John because it really did not impede his success in school or his ability to participate in many activities. When John was younger, we simply explained PKU to his teachers. But John was always responsible for knowing what he could or could not eat. When he grew older we gave him the choice of explaining his diet to the teachers himself or having us explain it to them.
We don't really know if John was treated in a negative manner by either his teachers or students because of his PKU. It seems that all kids going through school endure some kind of teasing, but John's PKU was never a big deal. It did not affect anything except the foods he ate or did not eat.
Any activity that involved food was not a huge disaster when it came to our family. We simply made sure that we brought food for him just in case there was nothing he could eat at whatever function we attended. In many cases, it made him feel special to have us bring food just for him.
Our regular Chinese meals accommodated John's diet because they were full of vegetables, rice and noodles. We did add more vegetables to our diet so that John could always have a selection of food at the table. To our knowledge, John has never felt held back by his dietary restraints. We have tried hundreds of special recipes for things that he likes and can eat, and he doesn't seem to mind. He always tells us he'll live longer by eating so healthy!
John has always been well adjusted. We have never given him a reason to feel any different.
Our kids were taught about PKU together. It was always important for us to know about John's diet and be able to help him. Our daughter and our nephew (who lived with us at the time) did a science project on PKU in third grade in order to teach others about PKU. This was our way of helping them understand PKU in scientific terms rather than simply as a diet.
We also have taught the others that they share responsibility in helping each other out. There always has been a kind of protectiveness in the way my daughter treats John. They both care about each other a great deal. In fact, when the military was making cutbacks in the budget by discontinuing the formula, my then-seven year-old daughter challenged the decision by writing a letter to the President of the United States. She was answered through a letter, which stated that the decision would be reversed! At the age of seven, my daughter thus changed military policy to benefit John and other children like him.
John is not your typical teen. He has his moments of rebellion, but he is very good about his diet and very successful in his endeavors. He has been Editor- in-Chief of his high school paper, graduated first in his class from high school, has started his own business, and is a very bright and friendly person.
There have been many people who have been helpful in supporting us with John's PKU. The clinic has been instrumental in educating us, helping us with advice and food, and has been so caring towards our family and John. Some of the people who have been there along the way whenever we needed it with both PKU and not PKU-related situations are Dr. Wolfinger, Michelle Hall, Iris Crump, Linda Bethel, and Theresa Huang.
A Chance to Brag
John has so many outstanding characteristics. Most important to us he is healthy and happy. He is also very friendly and pleasant to be around. He is very respectful of others, is very empathetic towards others, is generous, and very bright. We could not ask for a more wonderful son.
Reflections of a Parent
We really thank God for what we have. Even though John has PKU, he really is a wonderful child. These past 18 years we have shared many laughs and tears with our friends and family. Through John's PKU, we as a family learned many things regarding nutrition, genetics, and other biological processes. We also met many nice families and people. We can't say that John's PKU did not give us problems, but we learned to deal with it. Those trials only made us stronger.
Looking back at being a parent, I have made so many mistakes. I wish I had not been so strict with both of my children. Because of my high expectation, I put a lot of stress on both Eley and John.
My advice to other PKU parents is keep your child on the diet as long as possible, and treat them just like any other child that does not have PKU. Don't let PKU become an excuse.