So my first post was a nutshell version of what happened when my family began. Upon reflection I can see that I have made the fatal error that all parent carers make when recounting their story, I have distanced myself from the emotion of the event, I have talked clinically about our experience rather than being truly honest about what happened. I have spoke as a carer rather than a parent.
So what do I mean by this?
Well it is fairly simple isn't it? As parents we gush about the positive things that happen in our lives, our babies first smiles, their first steps, their first words, in my sisters case his first major poo. But when we have to talk about the harder stuff, the bits that aren't so rosy, we don't really know how to say it. So we revert to what we know best.
When you have a child with additional needs you spend an awful lot of time talking to professionals, so you naturally pick up the lingo and start using the terminology like it's slang. The difficulty is the clinical terms and technical speak removes the emotion from what it is we are trying to say. But isn't that why we do it? Perhaps...
But what does it matter, we find a subject too emotional so we find a way to talk about it without being reduced to a blubbering mess. Well for us that might be great, as a parent of a child with some challenging complications I too find it unbelievably difficult at times to say certain things without being overcome with emotion and crying like a baby. So I avoid the hard stuff and skirt around the subject. But what does that do with the message I am trying to convey? Well for a start it becomes just words that a parent carer is saying, you loose the attachment to the truth. A professional, or anyone else that you are talking to will hear the details but they wont see it for what it really means to you. They don't see the pain, the tears, or the true hardship that simple everyday activities can cause us. When we tell it like it is, avoiding the clinical speak, we sometimes crack, we show how much these things can affect us and how it can, and does, overwhelm us at times. This not only shows just how real our fears and concerns are, but also it tugs at other peoples heart strings... I know it's not a nice idea that we might use this to our advantage, but actually it can be a benefit in ensuring that people see how real your situation is, and when you are looking for support or guidance it also helps to gain their emotional investment in trying to do their best for you.
What am I trying to say? Well firstly as parent carers we are not clinicians, so why would we talk like one? We meet so many professionals in our child's life that we get used to rattling off all the key points to tell our story quickly and concisely, we loose sight of the fact that we are the parents. We need to ditch this bad habit, not all the time but most of it, so that people can see us as parents once again, with specialist knowledge of our child's additional needs but not expecting us to provide all of the answers. Also this clinical approach devalues our children as children, they become a list of ailments and diagnosis. As I write this my two daughters are making popcorn with their Daddy getting ready for a movie. All I can hear is giggles and squeaks of joy as the kernels of ruby red corn explode in the saucepan, shaking the lid and sparking eruptions from the girls. If all I had just told you was that they were making popcorn, you would never have understood the joy it brings to my children. So can you see what I mean?
Lets make a small promise together today. I vow to convey the emotion of what I want to say when I really need to. I will help others to understand the meaning of what I am saying and not become just another clinician in the room.
Can we do that? Yes we can, and I plan to start today...
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