A Parents Perspective

School Starters

Preparing for childcare, preschool and school

A Parents Perspective

As Parents, you may be anxious about how your child is going to cope going into school. How will they manage with the new routine? How are you going to manage packing a nutritious low protein lunch every day that they’ll actually eat?

Our supportive community of wise and organised IEM parents has put together a bunch of brilliant top tips for parents of school kids of all ages who are about to head back to school.

We all know our kids are amazing and precious and we also know that our kids might have to face other issues concerning their metabolic disorders when they’re attending school.  Children of different ages will obviously have different needs and encounter different issues at different stages of their schooling.  These are some of the of potential issues that may be faced by children at school, and how you can develop strategies to overcome and deal with these issues.

Below you can read Caelan’s parents experience with sending their PeeKabU kid to school.

Caelan’s Parents Experience


As parents we all have expectations of what will be your child’s experiences at school.  Personally, I want my child to be happy and comfortable at school because I believe this provides the foundation on which effective learning can occur. Following from this, I have the expectation that his emotional and social development will be nurtured and cultivated at school.  The school environment should be safe and accepting of him as an individual and to promote his feelings of self-worth.  I also expect that he will learn, so that in the future his choices are maximised.

But what happens when reality doesn’t meet your expectations?  We’ve experienced some bumps in Caelan’s experiences at school.  I’ve taken Caelan to school to discover they are cooking gingerbread men that day, or they’re having an Easter Egg hunt.  We’ve been given no notice, and I’ve had to come up with a quick solution on the spot to ensure that Caelan will also enjoy the experiences as much as he can.  I couldn’t do much about the gingerbread men as we lived too far away for me to just go home and quickly make up a batch of low-protein gingerbread dough.  I got him the lowest-protein alternative I could find in the local shop and took them back to school.  With the Easter Egg hunt, I did the same.  The best solution really is to ensure effective communication between the teachers and yourself, and to set up strategies in advance to anticipate these problems to involve every child as fully as possible in each learning experience.

Other issues we’ve experienced have been parents just handing out Easter Eggs at Easter time, or chocolate at Christmas time without consulting us first.  Each individual school may have policies about this, but again the best preventative is effective communication.  There have also been special occasions at school where the canteen has had a different menu, like on the last day of school when Caelan’s school often has pizza meal days – pizza, ice creams and drink.  That has been less of a problem, as this is communicated through the newsletter or a note to take home.  Knowing this in advance means that we can come up with alternative solutions – making a low protein pizza and providing a low protein icy pole.  Then we get to cooking activities…there are many instances in which having a child with a metabolic disorder can make the school experience a little trickier than for other children.


There are going to be instances in which there may be ‘bumps’ along with way – the tricky situations particular to having a metabolic disorder.  As I have said, effective communication is an important key to smoothing these bumps. Communication is a two-way street between you and the school.

Parents are responsible for giving the school information about the condition, educating them about the condition and the treatment and about the needs of their child.

The school is responsible for meeting the needs of the child while the child is in their care.  They need to plan to ensure the health and well-being of the child, and to optimise the learning environment to address the educational requirements of the child.  The school needs to inform you of occasions and instances in which your child may feel excluded, or your child may not be able to fully participate in a school activity because of their disorder.  Sometimes these instances are not obvious or apparent and may be thought of during the planning stages of these activities.  Also, teachers and school staff are busy and may mistakenly and inadvertently overlook potential issues. As a parent, you can assist teachers and the school to plan in ways that include your child in the best way possible.

As a teacher and a parent, I want to keep the communication positive and as open as possible.  This encourages open discussion, working together to achieve solutions and basically means that the teacher and parent are ‘on the same page’.  The outcome, as it is jointly constructed between parent and teacher, will be more satisfactory to both parties.  There will be more consistency between home and the classroom, which in itself is beneficial to the child.

There are times when as a parent, you may feel upset or have not-so-quite positive feelings about what is happening at school.  It probably won’t really be in your or your child’s best interests if you go off at the teacher.  Take a deep breath and try to maintain a calm tone!  If you continue to feel frustrated, your school will have procedures to address issues – so best to approach administration and let them know how you are feeling.

It is important to inform other parents in the class of your child’s condition and what this means.  You will need to speak to your child’s school or teacher prior to, or at the start of the school year about opportunities to do this.  Your school may have an information evening in which you will have the chance to verbally address other parents, or you may get to hand out a letter to the other parents with your contact details so that they can contact you directly with questions.  Alternatively, your child’s teacher may include this information as part of a class newsletter or informational letter at the start of the year.  Again, you will need to talk with your child’s teacher about the best way for this to happen.

Enquire at the canteen.  You may be able to come to an arrangement with them.  In our case, the canteen will heat up vegetarian gluten-free pasties I have found in the supermarket that are relatively low-protein.  We place a frozen pastie in Caelan’s lunch order bag and order a salad to accompany it.  I ensure it has his name clearly written on it so that the canteen knows not to add the egg and cheese that are normally part of a salad box.  I usually write this on the lunch bag anyway (no cheese, no egg) just to make sure in case there is anyone new working in the canteen not aware of Caelan’s requirements.  We also make sure that Caelan’s teacher is informed that he is having a lunch order, so that she can check it is all correct when it is delivered to the classroom. At the start of the year as part of the discussions with the school you can ask if there are any procedures for special diets at the canteen.  In the canteen at Caelan’s school they have typed alerts about allergies and other food requirements of students at the school.  This could be a useful preventative measure.  Caelan the gets a warm pastie delivered in the lunch basket along with all the other students.  The only issue we have had with the canteen is that he may only have this on pie and pastie days – Mondays and Fridays – so that the other students in his class won’t be saying why can he have a pastie when we can’t.  I should have been more proactive about this and perhaps advocated for Caelan by seeing the Deputy principal at the school and perhaps coming to a more satisfactory arrangement – like informing the other students why Caelan can have this on any day (i.e. Because he can’t eat the other food the canteen has to offer other than the salad box).  How far you wish to take situations such as this is an individual decision but try to get the arrangement sorted out as early as possible so that you can get into a routine and make the whole process as smooth as possible.

Children in school may have fruit time, a time in which they share fruit.  I’ve provided a list of fruits and vegetables that Caelan can eat without having to be weighed, such as watermelon, rockmelon, apple, pear, carrot and tomatoes.  This is laminated and placed in the kitchen area.  The staff are aware and monitor the fruit Caelan eats.  There are fruits that Caelan does not share at all, such as banana.  The situation has been different at both schools Caelan has attended – in Kinder we had the ‘free list’ up, and I provided other fruits in a lunch box that I had weighed out for him, just to give him a little more variety.  What you do is whatever works for you and the school or the teacher and is limited only by imagination!  It is also determined by your child’s individual diet and needs.

Enquire about supervision during lunchtimes.  This is especially important in the early years, such as in Kindergarten or Pre-Primary.  We found that Caelan was really great about that and would check with us before eating anything not provided for him in his lunch box.  Also be sure to ask about ‘treats’ that may be brought into the classroom, whether by other parents or even by the teaching staff.  One of our experiences has been that children were getting food as rewards for behaviour, or as special treats, provided by the teacher and assistant.

Caelan has been having Physical Education and Health during the year with a specialist teacher.  When I found out the class was to be learning about the healthy food pyramid, I saw his classroom teacher, and asked that an explanation be given to accompany the experience for Caelan – that these are healthy foods for other students in the classroom, that Caelan has other food that is good for him.  We have always differentiated between the needs of our two children – one who doesn’t have PKU and one who does – saying that they both have different needs.  Hayden, our non-PKU son, needs this particular set of foods to keep him healthy.  We go on to explain to them both that these foods are not healthy for Caelan.  Caelan needs these particular foods to keep him healthy.  You both need different things to keep you healthy.  Anyway, we wanted this message to be given to Caelan at the time of the health lesson.  This didn’t eventuate, and I had a long discussion, at bed time when the questions happened, explaining that no chips were not healthy foods for other people to eat, but that because his diet is different they are more healthy for him than they are for other people!  We had to re-explain the whole thing and assure our worried child (worried because he thought he was eating an unhealthy diet) that his diet is perfect for him.

At the start of the year, let the teacher know that as a parent you can be a resource.  Ask them to inform you in advance of any potential opportunities so that you have time to prepare and provide the relevant resources.  If you feel comfortable enough, and the teacher is in agreement, you may wish to come in and answer questions and talk about the disorder your child has.  The explanation of the disorder would obviously be tailored to suit the developmental level of the students in the classroom.

Another situation that may prove difficult is cooking.  In our experience this year, Caelan’s class has done a lot of cooking.  It has been great when the teacher has asked me in advance about the foods they will be making and Caelan has been able to eat the food with the other children at school.  However, there have been times when he has had to make things to bring home for his brother to eat, while the other students get to eat the food in the classroom.  This has made him feel quite sad, not really an optimal situation for him.    Again, ask questions at the start of the year and let the teacher know that there may be alternatives that could be used.  I would emphasize the fact that you want your child to feel included in all, or at least most, classroom activities.  Ask if there will be cooking during the year and ask to be notified in advance of what is to be cooked or if there is a way that you could be included in planning for this.

Going to school is a big challenge for everyone.  Good, effective communication is the key, and continuing that communication on an ongoing basis throughout the year is very important.