Kinton and Lanre's story highlights some of the things that would have made their journey so much easier.
Summer 2020 in Gloucestershire
Over the years we have worked very hard to have positive experiences as a family, including days out. Over time, with trial and error, we have come to realise the things that Alex does like (e.g. trains and being outside, but not wandering aimlessly around) and does not like (e.g. castles or museums) and we plan around that. For example, last summer we went to Scotland and this summer to Gloucestershire, choosing houses to stay in that had a lot of inside and outside space with things to do on site.
Part of the preparation is researching what places are like in advance. What is there going to be for Alex to do and can he cope with it? So we choose to go to places where we know we will have something to enjoy and that will not cause him stress. Or we choose somewhere with space where we know he may find it OK with our support. We do not always show Alex pictures of places we are going (he might not really understand, as he has very complex learning and language and communication disorders) but we do say one-word prompts for him, like “train”, “seaside”, “lunch”, and use the “first and next” planning, to explain the order in which we are going to do things.
This means choosing places and activities that will work for Alex. They might not be what his siblings or we would choose for ourselves. When Alex went to a residential special school a few years ago we were able for the first time to take our other children on a holiday so we could enjoy a wider range of activities together. We are very conscious of the impact of the restrictions in trips and holidays on our wider family life and we are trying to make up for that while our other children still want to go on holiday with us.
- Ignore people who may stare or comment (Alex does not understand which helps).
- Plan for what will work well in advance and try and find that. It is best to focus on what will not be stressful, than to be too ambitious.
- Seek respite and short breaks so that you can bring your other children on breaks they will enjoy too at other times. This helps ensure siblings do not lose out on positive holiday experiences doing things they want to do too.
- We have a car now, which helps with accessibility. We did not have one when Alex was young. If you don’t have a car you can still do things like go for a walk outside or go to the local park, or to an autism-friendly showing at the local cinema.
- You could also try to find an inclusive swimming club where all the children can go. We did this for Alex (they provided one-to-one support) and his siblings went at the same time. With support, over 7 years, he learned to swim 400m on his own. We were very proud of him.
Mary, Alex’s mother
Laura’s communication passport has helped her mother plan the best care.