Wake me up when September’s here

By Joanna Grace from The Sensory Projects

20th August 2018

Over the last few weeks, many parents will have been booking time off work and looking forward to days on the beach plastered in sunscreen and crunching down on sand-filled sandwiches, whilst the children run wild and free and then fall fast asleep in the car on the way home.

But for parents of children with complex needs, the summer holidays can be a very frightening time indeed.

One parent recently confessed to me that at school, her son was supported by two members of staff all the time. When on the rare occasions she gets a respite, it takes a team of four nurses to provide the care that she provides herself. She can do it, and she does – she has to, she has no choice. But to do the work of two people, four people, twenty-four seven, seven days a week, for six weeks is … well, quite frankly it’s not survivable. I know this parent will set herself to the task, and I also know I will see her break, maybe emotionally, mentally, physically, maybe during the holidays or maybe when the relief of September hits.

Of course, all parents are flat-out during the holidays with young children, the nonstop co-ordination of play dates and activities, and what to do when it rains. But those parents are being parents. The mother I was talking to won’t get to be a mum again until the holidays are over.

Because when you are flat-out fulfilling the medical roles required to keep your child alive, there is no time for play – or maybe there is but because you are so overstretched you don’t see it; you just don’t have it in you. You are broken, ignored and forgotten about. Who wants to play when they feel like that?

Parents of children with special educational needs and disabilities used to have access to play-schemes running throughout the holidays, often at their child’s school, that offered fun activities and oodles of tea or coffee and support. Sadly in a time of budget cuts, many of these schemes have had to close down – leaving families isolated and alone.

What can we do?

Well if you are running an event, make sure you’ve thought about how children with additional needs could be included. Have you advertised the event somewhere they can find out about it too? If you are friends with a parent who has a child with additional needs, make sure their child gets an invite to your play-date, or just pop in on them and bring biscuits. You don’t need to physically do anything; just be there, listen, and let them know they’ve not been forgotten.

If you do know of a great play-scheme offering accessible activities, please add it to the list we have been creating here. And if you are looking for a place to play browse the list, maybe there will be something there for you.