Tag: respite

It’s late summer as I write this and I know that many families like mine, like yours are reaching the end of their energy reserves. Our children with additional needs more than most require a “village” to raise them. And the support systems of school, clubs, respite seem to become very scarce indeed during the holidays and this is especially true of the long summer break.

Does your child sleep? Can they ever be left unsupervised? If the answer to these questions is “no”, chances are that you have now had weeks of unending alertness and your body and brain have had enough. Not to mention juggling work, finances, extended family who may just add to the chaos. So… what’s to be done?

The first thing I would suggest is to throw out the “should” book. The stories we tell ourselves of what family life “should” look like. In this book, the holidays are so often portrayed as a blissful time with siblings playing happily together, parents watching on with tender smiles. We need to pay attention to what our children and we need – whatever that may look like.

In my case, going away on “holiday” was never an option. The stress of transition, the difficulty in managing medical supplies and the uncertainty of what that holiday might look like meant that going away was absolutely not worth it.

Our three children had very different needs, so we tried to meet them as and when we could. Mostly we stayed home and tried to keep normal daily routine going – that was the easiest way to thrive. Our daughter even had school uniform dresses because she found the change too difficult (I did buy different colours of school dresses for my sake!!). She would often plan lessons and “school” activities as a way of coping with the fact that her routine had been disturbed.

For our youngest son, the holidays usually meant badly needed rest, so he was often in bed much of the time. Anything more ended in tears of exhaustion.

And our eldest thrived in holiday times. He found the routine of school dull, unchallenging and restrictive, so the freedom of the holidays was a relief – IF he was given complete control! And he often found the first couple of weeks very difficult as he managed the change from one environment to the next.

Seemingly small things allowed us to create really happy memories – one summer, we splurged on three boxes of Lego that gave us a wonderful family afternoon. Not much maybe, but it’s a memory all of us carry to this day.

Finding somewhere that feels safe and comfortable for days out, or even half days can be remarkably replenishing. Each year, I would try and save for a year’s pass to Chessington World of Adventures, or Wisley Gardens (those happened to be close and work for us). In fact, we mostly used those for after school picnics, never venturing on the rides, but enjoying a space that felt safe.

Maybe one of the biggest and most challenging “shoulds” that I gave up was the notion that we should stay together as a family unit during holidays. While we did this during the summer, Christmas was the one that felt hardest. But for a number of years, we split the family because it was better for everyone. One child went to their grandparents (sometimes with one parent) and the other two stayed home. This gave everyone a break, and allowed the children to have their very individual needs met. Otherwise, how do you manage one child who cannot leave home, with another who desperately needs to get out?

We need to build a new set of stories I think, to share with each other how holidays can be so that we and future families allow themselves to trust their instincts and holiday in the way that suits them. To that end, I’d love to know how you holiday! Please share some ideas in the comments 🙂