Julie tells us about her son Theo and how the family desperately need respite care for him. 

We are Frank, Julie, our 12-year-old daughter and Theo, aged 11. Theo is autistic and has ADHD, severe learning difficulties and pica (meaning he eats or craves non-edible items).

Theo is loving, caring, creative and, along with his sister, is the light of our lives. He loves campervans, swimming, boats and water generally. He gets so much joy from the minions, Mickey Mouse and friends, and the Cars movie. He is very active and is constantly running, climbing and stimming. He can use lots of spoken words and is learning more each day. In terms of dislikes, being told that he cannot do something is very hard for him. We try to accommodate him and his requests as long as they are safe, but that isn’t always possible.

When Theo is anxious, which tends to be regularly, he becomes easily overwhelmed and his nervous system just can’t cope. He really struggles with transitions and has little awareness of danger, sometimes posing a risk to himself and others. We think he has a demand avoidant profile and we are trying to learn about that and adjust how we approach helping him. He has high support needs and requires 24/7 care and constant supervision to ensure that he is safe. We try our best to help him regulate and to co-regulate with him, although we don't always get this right and it is an ongoing challenge. When his needs are not being met, this has a massive impact on his sister who also needs support but is often not getting that support from us. This is due to us having to act quickly and often without warning to prevent Theo being in danger.