The Children's Respite Trust (CRT) provides care for children with disabilities across Sussex and Kent. They firmly believe that no family should be left to care for a disabled child alone so offer respite sessions in the community and at their centre in Uckfield. For many parents respite is a chance to do things some of us may take for granted. They worked tirelessly during the pandemic, with reduced funding, and still continue to strive to expand their provision. They recently were successful in gaining Ofsted registration, which means they can offer longer respite sessions in future, which will require additional funding.

My family has greatly benefitted from CRT since 2018, when my son Ethan was four. Ethan is now nine-years-old, has autism and significant learning disability. His biggest need is adult supervision, along with a quiet environment, as he finds noise and enclosed spaces overwhelming. He also has an impulsive desire to abscond from settings, either due to anxiety or for the sensory feedback from running. This makes accessing public activities almost impossible, which makes me feel isolated and worried for my daughter Isla, Ethan’s twin, that she is missing out on a “normal” childhood.

Over the years, CRT have provided us, and other local families, with regular ongoing support, including: weekly 1:1 respite for Ethan in term-time, holiday sessions 1-2 times per week, and a sibling's club for Ethan's twin sister Isla, to spend time with other siblings of children with disabilities. I appeared on BBC local news this time two-years ago to highlight the need for funding and the importance of CRT's work, which can be viewed here for further information:

https://www.bbc.co.uk/news/av/uk-england-sussex-56090426

East Sussex County Council cut funding for Ethan’s school’s specialist wrap-around care in 2018, and, since then, there has been no other suitable resources for Ethan and other children with complex needs outside of school, our family, so we would be lost without them. I petitioned this a few years ago and received overwhelming support, but the outcome was disappointing. Even activities which are deemed inclusive and appropriate for SEND locally, are unfortunately not suitable for my son.

I have always wanted to give something back to the Children's Respite Trust, as I cannot describe how they have benefitted my family in the years we've been involved. I hope by doing something completely outside my comfort zone this will publicise this amazing charity, and provide much-needed funding for CRT’s future plans.

To find out more about CRT’s amazing charity work: https://www.crtcharity.org/