Throughout August, families raising disabled or seriously ill children share their experiences of summer- the highs, the lows and the things they wish more people understood.
Rebecca and Lee have three children; seven year old Archie, five year old Chiara and three year old Sebastian.
We caught up with Rebecca to hear how summer is for her family.
How are the summer months?
“Summer is my favourite time of the year. When I had children I was so looking forward to the long school holiday and lots of days out at the beach.
“Archie especially loves being outdoors, running free and playing in the sea and sand, he loves swimming. Chiara also loves swimming and playgrounds. Sebastian likes long walks in his pushchair.”
“But summer isn’t quite as I expected. All three of our children are autistic, they are non verbal with some quite challenging behaviours.
“We find most places are too busy in summer. If there’s likely to be a queue it can’t happen – something like a 5 minute queue for ice cream they simply can’t manage.”
Days out over summer
“Summer is a potential sensory nightmare, often adding to the challenge of getting out and about. The heat, need for sun cream, tourist crowds (we live in Devon!), hot car, melted ice cream, sand in little toes all make it harder for the children to cope with summer activities.
“The children each need at least 1-1 supervision out and about, which means we cannot go out as a family without an enabler or knowing there will be extra adults who can support us. If I take one child out, that leaves my husband housebound with the other two if we don’t have support.”
“Meal times are a challenge generally, but even more so on a day out. The children struggle to sit at a table. They have quite limited diets so it can be hard to make sure their foods are available. They will also help themselves to food they do want even if it’s on someone else’s plate, so need watching closely and more than once I’ve had to buy someone a replacement meal!”
“A few years ago we got a grant for a lay-z-spa from family fund. The lay-z-spa has been amazing for our children. It helps them unwind and gives them something to enjoy on hot summer days stuck at home.
“I would love to be able to take my children on a sunny beach holiday, but for many reasons don’t see this being possible any time soon. We are lucky that our local Early Years Complex Needs service arrange lots of activities for families in holidays and we rely heavily on their support to access days out.
“It seems that once they are school age there are very few options for children with complex needs to access normal summer experiences that other families may take for granted.”
“Our children are just like any other children.
“Archie, Chiara and Sebastian love to run and splash and play and explore. They enjoy trips to the beach, parks and the zoo, they love ice cream or chips at the beach.
“They deserve to access these experiences the same as any child.”