03/07/2026
🩵 Summer is incredibly lonely at times…I want to take the opportunity to use our page to voice real experiences of what it’s like 🩵
Please take a moment to read from one mums perspective…this is real life 🥺
Summer is, sadly, an incredibly challenging time for our son, A, and for our entire family.
A requires constant 24-hour supervision and can never be left alone or unsupervised. He is extremely dysregulated and can enter a fight-or-flight response—almost always "fight"—without warning. This makes leaving the house exceptionally difficult and often unsafe.
Many of the places that other families enjoy during the summer are simply not accessible to us. We cannot safely take A to playgrounds, cafés, shopping centres, forest parks, or anywhere near water because of the significant risks associated with his unpredictable behaviour. Even the limited places that may be suitable require at least two adults to support him safely. As my husband works, I am unable to take A out on my own, leaving us largely confined to our home throughout the summer.
Although our home has been extensively adapted to meet A's needs, his behavioural challenges mean that keeping him occupied for long periods is extremely difficult. The constant need for supervision, intervention and support makes life at home exhausting, isolating and, at times, claustrophobic for all of us.
Our wider family life is also significantly affected. Visiting relatives is often fraught with challenges, and it is almost impossible for us to invite family members into our home due to A's support needs and behavioural difficulties. This has resulted in increasing isolation for all of us, including A's sister, whose opportunities for typical family experiences are greatly limited.
A also has a sleep disorder and is frequently awake from around 3:00 a.m. This has a profound impact on the entire household. The chronic sleep deprivation affects our physical and emotional wellbeing, making it even more difficult to manage the increased demands of the summer months.
For most families, the summer holidays are a time for children to have a break from school routines and for parents to enjoy spending quality time together as a family.
However, without additional support, the summer holidays become a period of survival rather than one of rest, enjoyment or creating positive family memories.