How can I prepare my child for going back to school with a stoma?

How can I prepare my child for going back to school with a stoma?

A new school year brings with it so much hope and promise. For me working, in education it has always felt more like New Years than New Years itself. It's such a milestone when your child progresses to the next academic year. Another Summer has passed making memories and letting them be kids for that much longer, in a world where it seems so keen on advancing at an exponential rate. I think we can all agree that the youth of today seem to be growing older at a far quicker rate than generations before them. 

Dealing with the anxiety of sending you child to school

For any parent it can be an anxious time having to trust a stranger to care for your child all day, in the hope that they come home happy and inspired by them. I have never underestimated the seriousness of a parent dropping their child off, and the duty of care you have to that child not only in terms of their education, but their emotional and physical wellbeing too. 
What really throws a needle in the hay stack is when you are sending your child in with a physical or psychological need that the school have little knowledge or experience of. Now that brings anxiety off the Richter scale I can assure you! With my little ostomate going into Year 2 I am learning each year how to ensure the transition is as smooth as possible for both of us.

Rachel's tips

Here are some pointers I live by:
  1. Identify the main member of staff that deal with children with extra needs and make contact. Make a call and introduce yourself to the main office and ask for a call back, as it is likely the person you need will be very busy. Office staff should know who the person is you need and facilitate contact. Initially, you don’t need to explain everything, just express your interest in the school and explain the child's condition.
  2. Call your child’s medical team and ask them for advice. They will deal with questions about education daily and will know what to ask the school that’s specific to the condition. Ask them what should be in place in the school already, as a minimum and what the child will need. Until the child is on role at the school in question, legally they don’t need to have it in place. However it is good for the school to know what would be expected from the start. They can suggest what equipment should be placed, and you can discuss what your ideals are and your intentions. I never sugar coat anything, and make sure they are prepared for all eventualities. You can gather very quickly whether they would be accepting of this or not.
  3. Ask the schools you are interested in for a visit and look at the facilities they have. This will tell you ALOT about a school and how they would welcome you and your child. One school I visited used the disabled toilet as a broom cupboard! Another told me they couldn’t support my little man as they didn’t have the staff. They hadn’t asked me if he was statemented meaning he brought a school extra funding to pay for another member of staff to provide support. When a school doesn’t want to learn or take interest, that to me is a sign that isn’t the school for you. They might be the best school in the world on paper, but if they can’t make the effort to at least show interest from the start, then you and your child deserves more. 
  4. Ask in the ostomy community (whether it be online or face to face) if anyone else has experience of working with the school in such a manner. It isn’t always possible to find another child in the same situation as yours as not everyone is open and sharing online. This can be really difficult, but if you do find someone whether it be through clubs, friends or Facebook groups, their knowledge is worth its weight in gold. 
  5. Ask the school how many members of staff are trained (if some are already) on the cares needed for the child. They should train multiple people in the event of staff absences, and all should receive training from a medical expert. You don’t have to organise this yourself, the school will make contact and arrange a suitable time and day. I have always been invited to go and I always have, as I want to make sure that all concerned are happy and comfortable with what is required. My boy needs to be taken care of by people who are competent and confident with what they are doing, for him to feel secure in an educational setting and the challenges he has to face with his condition. 

You know your child best

Remember, no one knows your child better than you. You are within your rights to ask any question, however big or small and express concerns. Like I said at the start, leaving your child in the care of others is a huge thing to do, and if you have any queries that need answering ring, email, visit if you have to. No stone should be unturned, and it is the schools job to make sure you are satisfied that they will provide the care that your child needs and deserves.
Where an ostomy is concerned, the products used and the approach to the child is different for all. There is no size fits all, not even for adults. The training a stoma nurse will give is standard practice, but not necessarily using the products you do, or with the extra little steps your child is used to.
My little one uses a waistband to hold his bag and feeding tube in place. He uses REFRESH spray from Respond Healthcare Ltd which does the job of 3 products. Its these steps that if you don’t need regular contact with your stoma nurse and some changes to the routine have been made, they may not know. I insist on me showing the school staff exactly what I do and the stoma nurse is happy to oversee and answer any questions. This works very well as it ticks the box for the school doing everything by the letter, and I know they have seen me his carer doing it exactly how it needs to be done, to provide consistency between home and school.
If you have any questions please don’t hesitate to reach out and message me on Instagram through @gutsy.mum. Until next time, Rach x
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.

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