Hi,
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.
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| 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,
warmly,
Kate
I agree with you Kate. We all have many labels that describe parts of us and our place in life . . . but none of them define us.
ReplyDeleteI got labelled ‘shy’ at a very young age, so did my very best to live up to that label most of my life. It defined who I thought I was for many years, told me what I could and couldn’t do, and held me back for a long time. It took me a long time to really understand that it was just a label, that it didn’t define me, that it wasn’t a helpful label and that I could discard it. I’m still working on that bit.
But what I think it got confused with all those years ago was the ‘introvert’ label – which actually is a helpful label, because knowing I am a highly introverted person means that there are reasons why I communicate they way I do and need things communicated to me in particular ways. I’m not a poor communicator, I just communicate in different ways to the 75% of the population that is extraverted. I know that’s not in any way comparable to your case in finally getting the correct diagnosis and then being able to move forward, but it was a real relief to me to find out the reason why my communication was so different.
When I first started work we did some work on personality types (Myers-Briggs and that sort of thing). Some of my colleagues got quite upset by this and said they didn’t want to be ‘pigeon-holed’ as a particular type, and they were who they were, and everyone was different, so how could you possibly pick a label and stick it on a group of people?
I think they, possibly like the person who questioned you, were thinking that once you label someone, then there is a danger they will let that label define them – in much the same way that they “shy” label has defined me – and that they won’t be able to move beyond the label.
But I always thought that there are some very broad things that people that are similar in type share. And if you can know and understand that, especially if you are a radically different type to them, it makes it a lot easier to understand why they behave so differently to you and helps you to work out a better way to approach them and deal with them.
That sounds like what you’re saying about using labels – when you know that there are certain characteristics and needs that people have, it makes communicating with them and living with them easier because you are taking those needs and characteristics into account. Like you say, it helps you know how the other person works.
But I agree with you that all of that is really only a starting point. No matter what “type” a person is, or what condition they have, they are still an individual and no one its neatly into any one box. So while knowing what you know about whatever it is the person is labelled as helps you start to understand them, that’s only half of the picture. You can’t just depend on the textbook definition of what the person “should” be like, because they won’t be like that – which is the point of the anti-pigeon hole people. The label may describe particular characteristics that a person has, but it doesn’t define them.
I’ve probably rambled enough. Probably enough in there for my own blog post (I’ve probably written several on similar subjects anyway). Thank you for the post, I really enjoyed reading it :)
Hello, sleepydwarf, great to hear from you. I get what you mean ,especially in regard to those 'personality types', but they are so one dimensional and impersonal and usually about how people work together in the workplace. I too got the 'shy' label but after moving 3 times in primary school, and twice in high school I had to push myself beyond those shy feelings and people started to believe I was extroverted - but I'm not. I'll have to chat to you in person sleepydwarf, because I have fond memories of our times together all those years ago...
ReplyDeleteI dont want my boys to be known only as the Asperger's boy and the kid with spina bifida, because they are so much more, but for the purposes of my blog they provide encouragement for other families dealing with their kids with their own labels. I also love to write about how kids constantly redefine themselves and disregard what an expert has said - it's a great source of inspiration for me and hopefully other people. Thanks for reading and commenting, Kx
Kids don't really know what they "can't" do, do they? I love hearing stories about people who defy the "experts" & do things they aren't supposed to be able to do.
ReplyDeleteI once went to a public speaking course with a deaf woman, and she said every time she thought "I can't do that" she'd stop herself and change her thought to "why can't I do that?" - and that one word made a complete difference to how she thought about things and encouraged her to do all sorts of things she didn't think she could do at first. That's something that has stuck in my mind for years and years.
Yes, we did have some fun times all those years ago didn't we? It will be great to catch up again in person one day :)
Hi Kate,
ReplyDeleteOnce my suspicions were tentatively confirmed by a pediatrician that Ryan showed the classic symptoms of tourettes with some ADHD thrown in, it was easier to categorise certain behaviors.
The cyclic nature of tourettes in children can make it difficult to see any long term changes, maybe I need to keep a diary oh his tics.
It's still early days with the ADHD, but we are learning what behaviors are due to this. Coping is another matter altogether.