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Summer holiday? Not for us

24 August 2016

The school holidays are a time when most families relax, but when you have a child with severe autism, the school holidays are often when the real work begins.

Lucy Marsden

The school holidays are a time when most families catch up on sleep, take a trip abroad, or maybe just enjoy a break from their normal routine.

Not so for us. When you have a child with severe autism, the school holidays are often when the real work begins.

Our son is now 17, and has severe autism and a learning disability. He is an extremely active young man, likes the outdoors and has no sense of danger. He would think nothing more of running into the middle of the road and needs two people supporting him at all times outside in the community.

All this means that we are basically working a 24-hour shift. I can never take my eyes off him for a second. Without school to break up the day, it can be enough to bring you to breaking point.

It’s also difficult for my other children. Often we can’t go out as a family because of his needs, so they end up on Instagram, watching as their friends whoop it up in the big outdoors.

So short breaks, where your child spends time with a support worker to give you a rest, are essential for parents on many levels. They are provided by local authorities and charities, and they are an absolutely vital lifeline for parents of children with a severe learning disability.

Having access to short breaks for my child means I can take my other younger children out of the house and spend time with them, or even do something as simple as drive them to a friend’s house. After all, it’s their school holiday too.

I didn’t even know short breaks existed until my child was 13, even though the professionals around us knew I was struggling. No-one had told me.

When you bear in mind that 85% of marriages of families with autistic children break down due to stress, it’s shocking that many parents aren’t even told what support is available.

We’ve been accessing short breaks for four years now, and I haven’t had any problem with the commitment and genuineness of the people caring for my son, although I have been worried at times about their lack of autism experience.

However, I have been extremely stressed by the administrators ‘above them’ in the office. There is always a mass of paperwork to fill in, which feels like a box-ticking exercise. To say that the authorities are working with parents to shape the activities is totally tokenistic.

I have even had a call from the service provider saying my son wasn’t suitable for the scheme, as he wasn’t into team-building. I felt like they had completely missed the point, that we were being penalized for having a child with complex needs.

I have also found that some of the sessions on offer just aren’t accessible for children with complex needs. We were offered an all-day session at the bowling alley, for example, which was far too much for my child – or any child! – to cope with.

The only real success I have had were with two breaks supplied by two amazing charities. One was on a farm and the other was at a theme park, and they were run by bright volunteers who looked after my boy and loved the activities as much as he did! It was perfect for my son.

Sadly, demand totally outstrips supply and you only get to go once on these kind of breaks.

The world of a carer of a disabled child is about many different things, but I have found that processes seem to come before people. The system is impenetrable, and it seems like the biggest concern is budgets, not people or families.

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