Preparing a child for school with a stoma | by Rachel

Each milestone feels like another mountain to climb, and your child with medical challenges going to secondary school would certainly count as one. I am giving my perspective as a parent of a child with a stoma, and appreciate that the situation would be very different if there are other medical needs involved. As always, this is my life experience and should be taken as such.

Do your research

Deciding which school your child will attend is one of the most important decisions you will make. There is a lot of pressure to get it right and even with all the research in the world, until they attend, you won’t truly know. As a minimum, visiting the school and getting a feel for the place is a priority for me.

If a school wants to learn and hear everything about your child, that’s a great sign. If they are open and willing to learn, even if they have not had a child like yours before, that’s exactly what you want. For me, unless the attitude is like this, the school doesn’t deserve my child attending.

Toilet key/pass

Whether your child has a plan in place or not, if they have needs centered around toileting, a disabled toilet key (if needed) and a pass are essential. All staff should be aware of the children who have these on their registers. Your child should be able to use this subtly to maintain as much dignity as possible.

Disabled toilet access

Unfortunately, I have worked in and visited many schools that use the disabled toilets as a storage room. This makes me extremely frustrated, as my mind goes first to visitors. What do they do if they need access on site? I have often been told that it is because they don’t have anyone who needs it. For me, this is no excuse, and shame on them.

When visiting a school, I will always make a point of checking the disabled toilets to see if they are fit for purpose. Taking their word for it is not good enough, and they will rarely admit if it is used for storage. By seeing it yourself, you can be sure.

If a change of stoma bag is needed on school premises, check that the disabled toilet has the appropriate space and accessibility to do this. Is there somewhere to lay out the items needed? If it is not suitable, let them know and hope they will work with you to make it suitable. It is your child’s right to have somewhere safe and accessible.

Emotional support

Attending school with medical needs should mean your child is eligible for emotional support during school hours. This type of support will look different across schools. Things to bear in mind and discuss would be:

• Will there be a key person to speak to?
• If they have a stoma bag leak at school and need to take a moment to compose themselves, is there a safe space to do that?
• If they are struggling emotionally during the school day, when and who can they go to?

If these questions can be answered and solutions provided, I would ask that your child can meet a key contact before starting, and be made familiar with where they are and what their name is. This should ideally be done before the new school year to ensure that at the start of term they do not need to be taken away from their peers and feel different.

Be prepared

Hopefully your child is prepared to do stoma bag changes at school if needed, but that may not be possible due to their circumstances. This is where an agreed plan is needed, and further meetings and preparation will need to take place.

The primary school your child attended should be able to provide guidance and help you liaise with the secondary school to put things in place. Transition for Year 6 pupils to secondary school starts early in the year, so make sure to check in with your school SENCO (Special Educational Needs Coordinator) to see how that will work for your child. With this in mind, I would definitely start looking at secondary schools in Year 5. Visits, meetings, and putting plans in place can take a very long time.

Where stoma bag changing equipment is concerned, you will need to decide whether you want your child to carry it in their bag all day, or if you want to discuss the possibility of having some stored on school premises. Quick and easy access here is essential, and with school sites being much bigger than a primary school, it may be best for them to have it on their person. This is something you and your child should talk about together.

Finally

This is a huge transition for you and your child. Getting hold of members of staff may be harder than in a primary school setting. There are far more children in a secondary school, and you may go from your child being one of a handful needing extra support to there being many more.

As a parent who has had to fight for provision and plans with the council, and found themselves on the phone and emailing the primary school more often than I would like, it creates great anxiety. Having a meeting with the primary school SENCO about how transition works, and visiting and speaking to the SENCO in secondary schools, has provided me with clarity and a clear plan moving forward.

It may work differently depending on your postcode, so ensure you speak to the right people and do your research.

Good luck to you and your child.

Rach
@gutsy.mum