Kirsty's School Hosts OCNDS Awareness Day

Written by: Claire Whitehill

Kirsty goes to a mainstream school that has an Autism unit attached to it, and she spends much of her time in the Rainbow Centre away from the rest of her class. She has been at the same local school campus since she was 4. She is now 11 and loves walking, cycling or scooting to school around the corner from home along with her friends, which she has known since they began in nursery together. Many of them are protective over her because she is much smaller than them and because they have grown up noticing that she behaves differently to them.

Kirsty is often isolated from her peers at school, although she spends afternoons in the same classes as them, she does not join them in the playground for break or lunchtime and rarely uses the school cafeteria. She is afraid of being knocked over by the other children who are larger than her, finds it difficult to cope with the noise of the large numbers of children due to sensory overload and prefers playing on her own due to the social communication difficulties she experiences due to the Autism. This means that although she is a little celebrity around the school, most of the other children don’t understand why she is different and sometimes separate from them.

The school held an awareness day for another rare disease earlier this year, which gave us the idea to ask them to do the same for OCNDS and the CSNK2A1 Foundation. They were unable to do this on April 5th OCNDS awareness day due to the Easter school holidays, so we arranged to celebrate on 21st June instead. They had also included an article in the school newsletter about the monuments lighting up on April 5th and links to the newspaper articles which Kirsty featured in at the time.

The school advertised the event in the parents’ newsletter and invited children to wear mufti,  their own blue and green clothes to school instead of uniform for a £1 donation. They also sourced fundraising doughnuts from Krispy Kreme, which are £7.50 for 12 pieces, which they then sold for £1 each and raised £522 from the mufti and cake sale combined. The school also wrote an account of the event with photos in the newsletter at the end of the week.

The school was decorated with green and blue balloons and our OCNDS banner was hung on the school gate to greet the children as they arrived. Jennifer kindly sent tie dye t-shirts over for the teachers and they were very popular amongst the staff and students,  with many people asking if they could have one. We also shared wristbands and window stickers for the event.

Some of the children made blue and green posters to advertise the event, which were displayed around the school. Kirsty’s teacher made a presentation using our brochure which was used by every class teacher to educate the children about OCNDS. It included the main symptoms, the word cloud about our children’s character traits, some information about the monuments which had lit up on April 5th and photos of the newspaper articles which Kirsty had appeared in.

This has helped not only to elevate Kirsty’s celebrity status within the school and local community, but also to allow the children to understand better why Kirsty is different to them and may not join in with their games in the playground. Often children ask us why Kirsty is so small and behaves in a way which is so much younger than her peers, hopefully this will go some way towards raising awareness and understanding, and encouraging acceptance within the community.

We were very touched that the school had gone to such a great effort to make the event happen and to make us feel like we are included as part of the school and the local community. It really meant a lot to us and we are incredibly grateful for their support.