Leaving your child in someone else’s care is a stressful time for any parent. But leaving a child with an Inherited Metabolic Disorder at the school gate comes with an additional set of worries and concerns.
In this blog post, teacher and mum, Alison Hardy, shares her experience of preparing her daughter Poppy for school, and offers advice to parents and teachers on the key questions to ask.
Was choosing a school any different for Poppy?
Our experience of choosing a nursery for Poppy wasn’t easy. Poppy has a Urea Cycle Disorder called Hyperornithinemia Hyperammonemia Homocitrullinuria (HHH) and one nursery refused to take her because of her condition, which was very distressing. Fortunately, we have one daughter already in mainstream school. So, we had some idea of what to expect from the application process. The main difference was we contacted the Special Needs Coordinator at our first-choice school and started discussions about Poppy’s needs as soon as our application went in.
What are the key questions to ask when choosing a school?
- What experience do you have caring for children with special needs?
- Will the teaching staff be happy to administer medication?
- Can the kitchen weigh and measure your child’s protein intake?
- Will the school allow your child to eat outside of regular mealtimes to maintain energy levels?
- What’s your procedure for sharing medical information with supply teachers?
How are you preparing Poppy for school?
Poppy is very excited about starting school. She is definitely ready! I’ve explained that she will be sitting with all her friends, so she won’t be frightened, and that she must tell a teacher if she doesn’t feel well. Food is a real source of anxiety for us, as children are encouraged to have school dinners. To control her protein intake, Poppy will have to take her own packed lunch. We don’t want her to feel left out, so we’ve let her choose her own special lunch box and will involve her in selecting and preparing all the food she takes with her.
What will the first day of school be like for you?
I’m in no doubt my anxiety levels will be off the scale! It’s a new experience for us all. But Poppy is ready and she will take it all in her stride.
Alison’s Action Plan for Parents
- Before you apply to a school, talk to the Special Needs Coordinator and ask whether the school can manage your child’s medical condition.
- Once your place is confirmed at a school, keep talking to them before your child starts school. Establish a point of contact and build the staff’s knowledge and confidence to care for your child.
- Tell the school you must be kept informed of all illnesses circulating at school. It’s better for you to have too much information than too little.
- Make sure every member of staff knows your child and what to do in an emergency.
- Explain the physical limitations your child may have and if they need to do any physio during the school day.
- Prepare an information pack for the class teacher to include:
- A medical diagnosis sheet.
- Information sheet on your child’s condition (download from the Metabolic Support UK website).
- A photograph of your child.
- Your child should also carry their BIMG information sheet and a copy of their hospital notes in their school bag.
Teachers – what you need to know:
- Key symptoms to look out for.
- How often and what the child needs to eat e.g. for snack time.
- What to do if the child is unhappy or falls ill.
- How to administer medication.
- Who to contact in the event of an emergency.
- Any changes to the child’s condition and how this might affect treatment.
Alison writes a blog about her family’s journey living with an Inherited Metabolic Disorder. You can read it at: poppysjourney.wordpress.com and you can read more about Poppy’s story on our website on the following link: https://www.metabolicsupportuk.org/alison-hhh/.
Alison will be speaking at our Patient Days this Autumn and giving further advice on steps to take with children starting school.
For more advice on your child starting school, please contact our Core Services team on 0845 241 2173.