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.<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
Summer brings its own set of challenges for Edward, and what they can enjoy doing as a family.<\/p>\n\n\n\n
“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.<\/p>\n\n\n\n
“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.<\/p>\n\n\n\n
“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.<\/p>\n\n\n\n
“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.”<\/p>\n\n\n\n
With a grant from Family Fund, the family were able to go on a break to Butlins.<\/p>\n\n\n\n
![\"Little](\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2023\/07\/image0-768x1024.jpeg\")
<\/figure>\n\n\n\n