Kimberly Patterson is the mother of two children with PKU, Chelsea 8 and Noah 7. The children live an active and normal life, both involved in various sports and other activities. Kimberly always thought the toddler years would be the most difficult with the associated dietary problems. But she found it more difficult to have the children in school. She met the problem head-on by sharing information about PKU with her children's 1st and 2nd grade classmates. Her excellent ideas are very applicable to MSUD. Following is a condensation of her article from the March '99 newsletter of the Association for Neuro-Metabolic Disorders.
It was tough for me to see my children's heartbreak over being "different." At times my PKU children have expressed feeling powerless regarding their diet and lack of diet choices. They have voiced such things as:
- "Mommy, some kids at school say that my milk stinks."
- "I wish I could eat what the other kids at school have so that I am not different."
- "When I bring plain pickles or mushrooms or whatever to lunch, the kids say, 'Ooh, that's gross!'"
- "I wish I didn't have to bring my milk (Phenyl-Free) to school."
- "Today I felt left out because Justin brought a birthday treat to school and I couldn't have it. It had nuts in it."
I have heard it said, "Knowledge or understanding is power." So I decided to give more "information" to Chelsea and Noah's peers by way of a "PKU Presentation." I went to their school classes armed with resources on PKU and ready for questions. Their teachers were more than happy to let me come in and share with their classes.
This is what I did:
- I read a story to the class titled Denny the Dragon and his Magic Milk by Nancy Beiman, Maria Rosetti, and Holly Wolf. This is a story about a dragon with PKU. As I read the story, I picked opportune points in it to relate to my children's life and diet. It is printed in black and white similar to a coloring book. I made copies of each illustration in the book and distributed them to their classmates and requested that they each color a page and sign it, so that my children would have a memory of their class as they read their book.
- I showed them a photograph of our family (we have 2 PKU and 2 non-PKU children) and talked about genetics a little - well, as much as you can with 1st and 2nd graders.
- I took out the low-protein food list and explained a little more about counting Phe's. I let the children choose food items that they were curious about, and then showed them how to look them up and find their Phe value.
- I showed them two of our low-protein cookbooks and explained that I have to prepare some of their foods with special ingredients that we order through the mail.
- I brought a can of Phenyl-Free and passed it around the room, letting the children smell and feel it. We talked about how we prepare the formula each morning and how important it is for Chelsea and Noah to drink this every day if they want to feel good.
- Then we opened the floor for questions. The children were so insightful and curious. What a delight to see my children answering their classmates' questions with confidence and pride!
- We showed the class the diet record that we had been keeping for the previous two days. Then I explained how we send the records in with a blood spot to PKU clinic's lab in Ann Arbor.
- I took Chelsea and Noah's blood sample right there in class, so that their friends could see what they go through. Both of my children were a bit nervous about this so I reassured them that they did not have to do it, that we could wait until later in private. But, they both decided to go ahead. Their friends were so great! Chelsea's girlfriends were very empathetic and gave her hugs afterwards. Some of them asked questions like: "Did it hurt lots?" and "Were you afraid?"
Both classrooms had such a great response to the presentation. The teachers and assistants had really great questions too. My children both rushed in the house that afternoon after they got off the bus with smiles on their faces and comments like: "Mommy, everyone thinks I'm famous now." "I think my friends in class understand PKU now." What a return for just a small investment of my time! I only wish I had done it sooner.
If any of our MSUD parents try this idea, or have used another other ideas that worked, it would be interesting to hear about your experiences. I wish I had done this when our daughter was in school.