Firstly, can I say hello to the readers in the US and others around the world, I dont know how you found me and my little family here in Australia, but thanks for reading!
Right, someone has approached me wondering why I write about my children and mention their diagnoses, particularly Ned with Asperger's. This person wanted to know why do I use the labels of Asperger's and Spina Bifida to describe each of my boys, and thinks I labelling them unecessarily. I have only a couple of niggling doubts about 'outing' my son with Asperger's, mainly because he doesn't know his diagnoses yet and that people will only see him merely as a 'label' and nothing else. But I have had personal experience where correct diagnoses and 'labelling' can be positive and even liberating...
My struggles with labelling
As I have written before, I struggled with mental illness throughout my 20's. During that time I was given many labels that mental health specialists applied to me in an effort to 'understand' me and as a means of treating me. For instance, clinical depression, acute anxiety, complex PTSD, and at times, I did fit into these and other labels as defined by various medical books. Quite frequently, people responded to me according to my latest 'label', and it was much easier for them to go with that than finding out anything about who I was and that there was a real person beneath the label. I was exposed to a great deal of prejudice and at times, cruelty, because I was seen only as a diagnoses and a stereotype and not as myself.
Although I have always been honest and forthcoming about my mental health issues, I have always tried to get beyond them as well. I was determined not to be a victim, not me! A few years ago I met a psychiatrist who changed everything when he insisted that my accurate diagnoses was in fact Bipolar 1 Disorder. At first I disagreed with him as this diagnoses had not come up before. So I went to the Black Dog Institute in Sydney where I was assessed and Professor Gordon Parker agreed with the psychiatrist. It was such a relief to find out there were genetic reasons for my experiences as well as key things in the environment which set it off. Finally, my world made sense. I learnt what I could about the condition, then put things into place so we were prepared as a family, for when I might be unwell, and otherwise I could just get out there and live. I suddenly felt a freedom, a liberation, I had not experienced before. It was a Godsend.
Giving my children labels
So why refer to my children using their medical diagnoses? Because, simply, I believe if we are upfront about it, we then get the opportunity to move beyond it. This blog is about the way our family interacts and how our diversities as well as our similarities make us, us. It is also a story about how we draw on each other to manage the challenges we face as individuals and as a family unit. Just like every family does.
Our various medical diagnoses while relevant, are not who we are, but they do offer an important insight into how each of us works. Take Ned, for example. Knowing that Ned has an Asperger's diagnoses accounts for some of his behaviour and attitudes. His diagnoses offers us a starting point of how to understand him and where to start to try and effectively communicate with him.
Just to tell Ned "I love you" can need different words and actions than we use to say the same thing to Miranda and Charlie. Ned doesn't like impromptu hugs and kisses (although I do it anyway), he doesn't like to be surprised, and sometimes he cant even 'deal' with anything emotional if he is not in the right frame of mind. So those words have to be snuck in at just the right time in order to get a "I love you,too Mum" back at me.
|Ned holding a brand new baby Charlie|
I have discussed here before what it is like to have a 'sick' baby diagnosed through ultrasound, and how devastating it can be. You live in grief for the remainder of the pregnancy, and I worried that I would be unable to accept my baby. But that moment he arrived, the second he took his first breath and screamed, I knew he was perfect, utterly perfect in every way. And not only did I accept him, but I loved him completely and would do anything for him.
It didn't matter what an ultrasound told me about Charlie or what a doctor could diagnose from Ned's somewhat eccentric behaviour and interests, to me both of my son's are both perfect and wonderful.
Writing this has made me quite emotional. To me the fact that our boys have additional needs enriches our lives as well as somewhat controlling them a bit. Children bring so much wealth to your life, and children with 'labels' can add to it, unexpectedly. We celebrate every milestone, no matter how big or small, or when it is achieved. We appreciate the difficulties of achieving seemingly small, less significant things like when Charlie can shuffle to copy Miranda's dancing steps. There are many opportunities to share, and to enjoy seemingly smaller moments in life, so how lucky are we!
Whether you or your child is diabetic, coeliac, left-handed or has middle-child syndrome, embrace the labels and move past them to discover what is unique underneath, and celebrate the diversity. It's great to understand the mould, and then to break it...
I would LOVE to hear from any reader's who have families made up with members who have label's or extra needs and how you cope and what gets you through.
Thanks for dropping by,