19.07.17

Our daughter’s been on holiday. So have we. Separately. Just for a few days, but still. And now we are home again and all in one piece.

When she was eight she went away without us for the very first time. We didn’t have respite then. We had accepted an invitation for her to join several students from her school who were going to Lourdes. While we expected no miracles, we welcomed an opportunity for her to expand her horizons and for us to have a break. Never have more tears been shed than when we left her with her temporary carers at the airport. It was hard seeing her with a group of her own people in that setting. Airports are meant to open up the world, but we could see already that hers was going to be so much smaller.

When we collected her a week later, everyone looked exhausted. She was thrilled to see us. They had been active by day but the nights were long. Although we had briefed her one-to-one supporter in detail, I don’t think they quite believed that sleep could be such a complicated thing. Our daughter had put on weight too, being given food as a pacifier in the middle of the night.

Several years on our girl went on a school trip to a residential centre. Again she and staff came back looking shattered. She had not slept more than a couple of hours each night and the photos we were given were upsetting. She looked so absent in most of them. We were assured beforehand that she would enjoy the outdoor activities on offer but in fact she was not able to participate much as they were not appropriate for her after all. It seems her physical disabilities were too particular and didn’t quite fit in with everyone else’s.

They said she had enjoyed the experience, the great outdoors, but the idea that for her observing was another way of taking part didn’t ring true with us. Watching her peers doing things she couldn’t do couldn’t have been that much fun. And zoning out at such times is a good coping strategy.

This time around she has been to a holiday camp with two-to-one support. If the videos we’ve had are anything to go by, she’s had a fantastic time. Shows, fairground rides, ice cream, stories. Even sleep.

We had to change plans at the last minute as one of the carers taking her was unexpectedly unable to go.  Much to our relief other members of the team stepped in but this meant making yet more complicated and expensive arrangements. Then our daughter became unwell on the evening before they were due to leave. We had already left for our own little adventure.

Our first couple of days away were tinged by the worry that we might have to return home early if her health worsened. In spite of our careful planning, would she have to stay home after all? How disappointing for her. One of her carers had made flash cards specific to the trip. Our daughter was intrigued by them. When we left with our bags packed, she had apparently picked them up, checked them over and made her way to the front door.

I’m pleased to say that she did perk up and when she finally arrived at her holiday destination (albeit two days later than anticipated), she took to her new environment like the proverbial duck to water. Her carers were determined that she would make up for lost time and delighted in sending us pictures showing that this was certainly the case. Despite her holiday being shortened, it had all the elements needed for having a jolly good time. The smiles said it all.

She came home with a book she had chosen from one of the onsite shops: Peter Pan. And has been looking at it ever since. A nice souvenir. Perhaps this will be the start of something.

View the other Life in our bubble blogs here

Leave a Reply

Please note: our response to comments will be for general information purposes only and does not constitute legal advice.

Your email address will not be published. Required fields are marked *


Share this post

Categories

askRL: Q&A series

Benefits

Child Trust Fund Access

Court of Protection

Developing Vulnerability Series

Disabled and Vulnerable People

Estate Administration Series

Finance and Investment

Guest Blog Posts

Individuals and Families

Later Life

Life in our bubble

Planning for the Future

Power of Attorney

Real families, real stories

Renaissance Legal News

Transition Series

Uncategorized

Wills and Trusts