Importance of Raising Awareness in Schools

Raising awareness was and still is the main objective of my blogging and posting on social media. I started 6 years ago as an exhausted new Mum to a baby boy born with Total Anglionic Hirschsprungs Disease. This meant all of his colon and part of his small intestine needed removing within a few weeks of life. It meant he started life in hospital in intensive care. It meant 6 weeks had to pass before we could take him home. It meant bowel washouts three times a day and endless needles, scans, checks and to date 10 operations. Now he is 6 years old.

Despite the pretty gloom and doom picture I have started with, it doesn’t stop there. Jake has grown to be a courageous, fun loving, social butterfly, who loves non stop talking and playing with his friends. He has got to a stage after so much setback and medical intervention that he is now hitting the same milestones as his peers. He is my little miracle, who when I look into those beautiful blue brown eyes, I find myself transported back to those hospital days. It felt like they would never end, with 12 weeks being his longest admission. It amazes me how as his Mum I will never be able to forget the feelings, the hurt, the fear, the anxiety, yet he doesn’t and probably won’t remember a thing of those early years…

When he reached school age there was a lot of preparation that had to be done to enable him to go, so that I felt confident that he would be looked after and feel safe and secure.

There are many things you can do to engage a school to raise awareness and ensure your child feels as happy and confident as could be in their educational setting. These include:

1. Arrange a meeting with the teacher and SENCO to explain the condition and make sure they understand what the child’s day to day life is like. In our case Jake was the first child they had with a stoma so education really was key here. I produced step by step flow charts and detailed explanations together with photos. Staff could keep this with the stoma bag changing kit to help visually support what had been discussed. If you are not medically trained, taking on such care for a child as a Teaching Assistant can be very overwhelming. We have been lucky to have brilliant ones who have learnt from scratch and done a great job. Anything you can do to support them would be greatly appreciated and can only help your child in a situation where they may only be used to yourself caring for them. If the child knows the school staff are confident in what they are doing, it helps alleviate any anxiety they may have.

2. Charity days are commonplace in a school whether it be a non-uniform day or raising funds for the PTA. If there is a charity that has supported your family which you would like to give back to, having a non-uniform day with a suggested donation of £1 per child is a great platform to start a conversation. Email the Headteacher and ask, they can only say no! But, if they say yes what a brilliant thing to have done for you and your child. Raffles and competitions through social media can also work towards the same thing. It creates awareness of supportive charities and can give the child confidence in using their unique position to help others.

3. Where invisible illnesses are concerned, other children may not realise the child in their class has a stoma unless they know them outside school. Schools may suggest the ostomate share their condition and talk about their bag to the class in a show and tell format. This should only be done if the child wants to and the teacher creates an environment that is comfortable and nurturing to ensure the child benefits from it and gains something from it. If that would not be the case, I personally would not suggest my child do so. For me, being an ostomate I would be happier doing it myself and using it as a teaching opportunity to talk about invisible illnesses and the importance of kindness. This would place importance on the understanding that just because you can’t see someone in pain or struggling it doesn’t mean they don’t experience it.

4. This one is very left field, but at Jake’s birthday parties I have always done a little photo area where we have photos from the early years to the present. I am so proud of my little man. I always make sure to put a message of how proud we are and include some photos of our time in hospital mixed with other lovely memories of him. For some this may seem strange, sad and negative, but I like to see it as a testament of how strong he is. How much he has overcome, the fights he has fought, have all made him what he is today, and for me that should be celebrated. In turn this is also raising awareness. You could also approach charities and ask if there is information, pin badges or little tokens, that you could use in party bags to  carry on the conversation when the children get home.

5. Suggest some books the school could have in the reading area with a few of my favourites being ‘Oscar the unstoppable’, ‘What’s in a colostomy bag?’, and ‘Awesome Ollie’. A Buttony Bear is a teddy bear with a stoma and bag added to it which could be used as a wonderful teaching tool for learners to be exposed kinaesthetically to what life is like with a stoma through role play and discussion.

However big or small, your actions for raising awareness are all honourable. One little ostomate Jessica, who’s Instagram account @jessicasstomajourney is an example of going above and beyond what can be done. If you are looking for advice and ideas they are sure to chat to Kim, her Mum who is lovely either through engaging in her content or through inbox messaging. Jessica has won awards and raised thousands of pounds for charity whilst supplying Buttony Bear’s to her local hospital. She really is the most incredible little girl. It is exhausting having a child with a chronic illness. Just getting through the day to day tasks of life, teamed with the medical intervention you have to provide, makes for a somewhat chaotic and draining time of it. You don’t need to be doing anything more than what you are comfortable to, or discuss and share anything you don’t want to. As long as the relevant members of staff are educated and supported in giving your child the care they deserve, that’s the most important thing.

Until next time, Rach x

@gutsy.mum