Life in our bubble: Just Saying

01.11.16

People have often asked us what we consider to be the most difficult aspect of our daughter’s complex needs. We’ve talked about this and come up with different answers over the years as her life has unfolded and developed. Today I would say what I find hardest is the fact that she is non verbal.

A fairly common misconception of our daughter by others is that she has nothing much to say. Of course this is absolutely not so. She has loads to say and is good at getting her point across in her own special way. It just requires time, an acceptance that she understands so much more than she could possibly articulate, and an openness to have a chat with her in a way that suits her. Those closest to her get this.

It’s awkward being with someone who doesn’t speak isn’t it? How to relate to them, what to say. All this is so natural to us but we are mindful that it’s not the case for many people. Our girl has the gift of a great sense of humour and her laugh has broken the ice on many occasions. It’s infectious. A well placed sneeze can work wonders to set her off and start a conversation. It can happen anywhere and often does. She can also switch off just like that if she is ignored or spoken over. She’s no fool.

I’d love her to be able to talk to me in no uncertain terms how she feels about her life at the moment. Her smiles, hugs and squeals of delight at being home as she surrounds herself with her old familiar things are a good indication I suppose. The living room floor is covered with her stuff and we are covered in her kisses.

For once I am not clearing up after her at the end of the day, not putting the dvds away that she has pulled off her special shelf looking for that particular favourite, and not putting the scattered stacking cups and Russian dolls that she so loves back in their box. And I’m leaving the jumble of picture books that she has been checking out, turning their pages in eager anticipation of what she might find. She knows what makes her happy and I am drinking it all in tonight.

As well as the laughter and affection from our girl these past few days we have glimpsed periods of quiet contemplation from her. At these times she’s been sitting perfectly still, a thoughtful expression on her face, far away but present. We can only guess at the depth of feeling of what is going on in her head.

Our daughter is now back home with us, at least for the foreseeable future. Some things just don’t work out how ever hard you try to make them do so. We’ve explained to her that she won’t be going back to the care home she has lived in for the past 9 months. We’ve told her we are very happy to have her home and that there will be good things ahead for her. For now, that’s all we can say.

View the other Life in our bubble blogs here.