Back to school

Back to school

The summer holidays seem like distant memories, and it has been rain, rain, rain, ever since! For families with children with additional needs it can be a tale of two cities. It may have been respite if the child copes better at home, or it can be difficult with the care provided by the schools lost when employment and other children need to be taken care of. My summer was the first with a baby and my eldest, both with stomas, medical appointments, and not to mention a big age gap to contend with. Trying to entertain the both was difficult, but we made the most of our time together and made lots of memories as a family.

A new academic year brings new staff to come acquainted with. If like the schools in my local authority, teaching assistants must be changed every year, it means new faces. As a parent I find this an incredibly anxious time. It is hoped the new members of staff will be empathetic, open, and willing to learn about a condition that before my first born joined the school, they had no experience of. 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. It is one of the biggest acts of trust by a parent/carer when dropping their child off, and the duty of care they have not only in terms of their education, but their emotional and physical wellbeing too.

Here is a list of checks I carry out for the new year:

1. For the new academic year, staff training should have been organised before the summer. Check that it has been done or will be soon. Staff changes last minute can affect this being different from when you left in July. It can’t be helped, but the school must have another plan in place. Check that multiple staff are being trained to allow for staff absences. I have always been invited to go and always try to, 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 the educational setting, and the challenges he has to face with his condition.

2. Call your child’s medical team and ask them for advice if you need it. Part of their job is to deal with questions about the educational setting. They will have someone who can be a main contact for the school. A new year may bring with it targets for your child in terms of their needs and how their independence can develop. The stoma nurse in our case was very supportive in helping set realistic and manageable goals. 

3. Check what medical supplies are in the school if they were left from before the summer. I have done a new box of supplies to make sure the dates have long enough on items, and the size of spare clothes are bigger. I also include a step by step plan with photos of the stoma care routine, and make sure they have all the contact information they need. This should ideally be done in July, or simply ask for the old supplies back as you give the new ones.

4. Ask in the ostomy community (whether it be online or face to face) if anyone else has experience of a situation you may be facing with the new academic year . 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. You can even post questions anonymously if this makes you feel more comfortable.

5. Ask what the school is going to do to protect the child’s dignity and what they will do to keep them safe and happy. Schools must do this anyway, but I find hearing it from new staff calms my anxieties.

6. Ask what schedule there is for emptying the stoma bag and what checks they will do to ensure there are no leaks. This must be age appropriate and shared with the child and most important, makes the child feel comfortable and safe. For older children, it may be a subtle gentle reminder to self check, for much younger children it will be more hands on. Your stoma nurse will advise what is the most suitable approach. 

7. Last but by no means least, ask your child how they feel about the new school year. Do they have any concerns, worries or anxieties that you could support them with? Also discuss what they are looking forward to doing to provide balance. Is there something they want to achieve by the end of the new year in terms of their own independence? This may be in the form of emptying their bag or helping do bag changes.

Where an ostomy is concerned, the products used and the approach to the child is different for all. There is no size that 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 three products. It’s these steps that if you don’t need regular contact with your stoma nurse to put in place, they may not know about.

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 school’s job to make sure you are satisfied that they will provide the care that your child needs and deserves. Depending on where you live, and the local guidance, you may qualify for an IDP (Individual Development Plan) where hours are allocated for the care of your child in the classroom. This should be looked into well before your child starts school. In my experience it took 18 months to get things in place. Do your research and always take medical advice. 

Best of luck for the new school year!

Rach x