Throughout August, families raising disabled or seriously ill children are sharing their summertime experiences – the good bits, the tough bits and the things they wish more people understood.
Eight-year-old Isaac lives in Yorkshire with his adoptive mum, Amanda, and older sister, Andraya. Isaac has been diagnosed with Foetal Alcohol Spectrum Disorder (FASD).
We caught up with Amanda to hear how summer is for her family.
How are the summer months?
“Summer with a neurodiverse child is extremely difficult, and it’s an added difficulty that Isaac’s disability is an invisible one.
“He loves big open spaces and places to scream and shout, but this comes with drawbacks, when all the other children are there too. It’s too busy for him; with lots of noises, smells and lots of people all trying to join “his space” it always ends with Isaac being unregulated and we have to leave. He cannot control his temperature and doesn’t do well in the heat so trying to manage that as well as enjoy family time is such a struggle. His window of tolerance becomes minute.
“There’s places we’d love to visit just like any other family but there’s never a quiet time or a specific quieter day so theme parks, parks and swimming are no place for a child like Isaac when it’s busy. He doesn’t do well with routine changes so Isaac goes to a holiday club three times a week where he knows what’s he’s doing and who his big person is. He thrives off adult interaction.
“Isaac loves to be in water, we have a pool that stays up for the whole of summer and he will be in it from morning until night.”
Is there anything you wish people knew about summer?
“People live in their own bubble with blinkers on and enjoy spur of the moment things with their families. We can’t do that, we live by a now-and-next board and it cannot be altered.
“It’s so tiring and restricting. It would be nice if people were to see a family out and see them doing things a little differently, and instead of staring you could just ask “can we help in anyway?”
“We’ve been asked to leave soft play centres because Isaac has had meltdowns. The judging stares are soul crushing.”
“In recent years, we received some family break grants from Family Fund.
“We go to the same Haven holiday park every year. Everybody there knows Isaac. They give us the same caravan each time and greet us when we arrive, which is lovely. The break offers us all a massive chance to re-charge and feel relaxed.”