We have been working on creating a ‘communication passport’ over the last few days with a speech and language therapist. The idea is that people who our son will meet will be able to read through this and get an idea of how to approach him, how to talk to him and make him comfortable and to understand some key likes and dislikes, before finding out through meltdowns or silence.
It’s a great idea. Managing it will be a challenge though, as already this document is 19 pages long and although key information is contained in it, I wonder how much time a person will have to read through 19+ pages before they engage with him. I think the audience will be selective with people who will be spending regular time with him and will be able to understand it over time.
We are also working through a similar process with a ‘medical passport’ intended to give Nurses and Doctors a guide as to how to engage with our son should he need to be admitted to hospital and what reactions to certain situations they may find. Again, a great idea, but I have this nagging doubt as to it’s practicality given that is also over 20 pages long.
I think, what we really found with this process is just how complex disability can be. We obviously know it first hand for our son, but many people will be in a similar situation and have to manage one aspect which impacts on another, and another.
We try and face life with all it’s challenges as a positive and opportunity filled time, and when you have to sit down and discuss with the many professionals, how it really is – you can’t just brush it aside at times like this – it can become very disheartening and keeping a positive attitude throughout is hard.
I’m sure many people will have been through the same, and after two weeks of coinciding assessments and reviews, essentially talking about the worst days our son has and the impact of those dark days, we all now feel emotionally exhausted and in truth, quite low.
However, never wanting to let this keep us down, we accept we have been through it, most are now completed and the usual routine of check-ups will kick in periodically again and we have decided to have a ‘deck’ built for us – rather than do it myself – which will allow easier access for our son encouraging him to get outside when the sun does actually shine and he and his dog can sit basking with a picnic and flask of coffee and his pot gardens and pot ponds can be brought into easy reach, not to mention a setting for his camera to picture the many different birds we see – including those nesting in last years boxes.
I wrote a piece on ‘what makes you happy’ and actually, certainly in our world, it’s those small things, like sitting in the garden with a flask of coffee – sure we love to visit the beach and coastal cafe’s, but sometimes, that ability to step (or wheel) over the doors threshold onto a purpose built staging, and sit in the sun with a drink …. it’s all we need