PKU school program

Tips for Starting School

Starting school is an exciting time. For parents of a child with PKU, there are a few extra challenges. Below are some ideas which may help.

Communicate with the principal and teachers as early as possible (before term 4 ends in December)

Try and meet with the principal and / or kindergarten teachers well before your child starts school to explain what PKU is and the needs your child will have, e.g. supervision during eating times, assistance to take their supplement. Some schools have a special needs teacher who contacts you to discuss PKU further. Sometimes they may also suggest to attend a staff meeting to run an information session for all the staff.

Provide the school with written information about PKU

Send a letter to the Principal with more detailed information about PKU and put in writing the specific needs your child has. A sample letter can be found in the ASIEM PKU Handbook. Provide the school with a list of foods that your child is able to freely eat. Suggest the written information is copied for the class teacher to have on hand. Generally the kindergarten teacher keeps a copy of the information with the roll so that relief teachers would always be aware. The office would also have a copy of the food list with a picture of your child on the wall alongside those provided for children with other health conditions / allergies.

Meet with your child’s teacher again to reinforce the information

A few days into term 1, meet with your child’s classroom teacher to check how things are going and give them the opportunity to ask questions. Make sure they know how to contact you should they have any questions / issues. Occasionally food is used in the classroom to explain concepts, e.g. sweet vs sour. Ask your child’s teacher to let you know in advance if they are using food so you can provide a PKU-friendly alternative.

Discuss taking supplement with your child and their teacher

Make sure your child and their teacher knows how to take the supplement and at what time. Some kids duck out of class at a certain time each day to have supplement. Different schools will have different requirements, depending on whether they view the supplement as ‘medication’ or a ‘dietary supplement’. You may need to provide a letter from your child’s metabolic specialist.

Check the canteen situation

If your school has a canteen, check the ‘menu’ to see what your child is able to have, e.g. fruit, juice. Your school may have ‘special food days’ where they have different foods such as pasta. On these occasions you could send pre-cooked pasta with your child for school lunch.

Have food ready for celebrations

Provide the school with a container of low protein cupcakes that they can keep in the freezer to give your child when there are celebrations e.g. birthdays. You could also advise the teacher a couple of store-bought treats they could have and they could keep a bag of them in the drawer just in case.