Over the next month, families raising a disabled or seriously ill child share their experiences of summer- the highs, the lows and the things they wish more people understood.
Katie and Rikki live in Southampton with their four year old son Edward, and baby Ellie. Edward was diagnosed as autistic when he was two years old.
Summer brings its own set of challenges for Edward, and what they can enjoy doing as a family.
How are the summer months?
“The summer is often viewed as a ‘break from preschool/school’ or a fab opportunity for family time. For Edward, it takes most of the summer to adjust to the massive change in the weekday routine. The initial few weeks are filled with meltdowns, wobbles and anxiety.
“We find the summer months incredibly difficult for Edward. He can not tell the difference between hot and cold, so often wears layers in the heat, and ends up being very tired and grumpy. Subtle changes like sun cream or wearing a sun hat can take several weeks to adjust too, and for Edward to accept.
“We find day trips more challenging. Places are busier, more crowded and these are some of his more prominent triggers for meltdowns. Most of the places we visit go above and beyond to support his special education needs requirements, but we do occasionally encounter a venue or trip, that isn’t as accommodating. We tend to stick with places that other SEN families have recommended, or use access cards.
“Edward is a fussy eater, whose biggest challenge is finger foods or wet foods. He can’t tolerate cold foods in his mouth so we find this more challenging in the summer, as ice poles and ice cream are a no go. We rely on yogurts and other fridge temperature items to keep him cool. Eating out, or picnics, can pose a challenge, so we often have to bring food from home or factor this in, in advance.”
With a grant from Family Fund, the family were able to go on a break to Butlins.
“Butlins is fantastic for Edward. It’s the only place where we’ve taken him that he manages to cope around lots of people and noise. He absolutely loves it there! Edward has achieved so many firsts there that he wouldn’t have managed at home- dancing with other children, meeting new people, and going to a restaurant and eating calmly. It’s not just about the holiday, but actually Edward takes so much from it that he can bring back.”
“Swimming is a therapeutic activity for Edward. It’s his one happy place and Butlins is somewhere that has free access to swimming all day. It provides him with a release. As a parent carer, it’s really lovely, and reassuring, to see my child coping and doing activities alongside other children.
“Even though he has moments of distress and struggle, Edward really is a joyous child, able to build really strong relationships with familiar people, over time. He is a lovely, free-spirited boy, with a wonderful sense of humour.”
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