Labels can stick, and can be for good.

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.

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

Charlie's choice

Our little lad, Charlie was born with Spina Bifida and hydrocephalus.  However, this medical fact is yet to dawn on our 3 year-old.  The condition was diagnosed in utero at the 19 week ultasound and left his Dad and I shattered.  At that time we spent a week getting advice from experts as to what Charlie could expect in his life- the anticipated disability and any complications.  We were told to expect that he would probably have the ability to walk with support, such as a walking frame with the need for a wheelchair for longer distances. He would also have significant balancing difficulties because of the incapacity of his brain to deal with all the fluid passing through it, known as  hydrocephalus . (This condition used to be known as water on the brain)

Charlie's 3D ultrasound at 27 weeks. I had ultrasounds every 2 weeks to monitor his growth.

Charlie's birth was early, not quite 36 weeks, but successful.  He had surgery at 24 hours old to close the lesion on his back where his spine had stopped growing and was protruding.

                                      a few hours old, a rare moment without all the tubes in

                          a rear view with the plastic wrap covering his S1 lesion prior to surgery

The initial surgery to close up Charlie's back was a great success, until once we were home and he started to go down hill.  A local pediatrician found an infection in the scar on his back and so we went back to the Children's Hospital at Westmead (CHW )for a week with IV antibiotics.  Then as time went by other things cropped up such as pyloric stenosis requiring surgery at 11 weeks.  At around 10 months he had a VP shunt inserted into his brain to take the extra fluid in his brain from the ventricle to a space next to his stomach. This became blocked not long after and required replacing.  Then we had a time when things went smoothly and hospital seemed a distant memory.

Until.. New Years Day 2011.
 Charlie had another blockage and needed a new shunt inserted.  This went well except that the wound over the shunt never seemed to heal properly.  The scab came off to reveal the shunt workings in February, and then again in March.  Charlie was not himself and finally on ANZAC Day last year a doctor who had never seen him before ordered a stomach ultrasound and found a pool of fluid sitting at the bottom of his shunting tube.  Another Ambulance trip to CHW revealed that the fluid was infected with a kind of staph and the infectious diseases department set to work to try to kill it.  Before it could be killed the infection baffled doctors by somehow climbing into Charlie's brain. It was a very scary time and the hospital staff worked overtime to cure our little boy.  We did a lot of praying, and tried our best to remain positive.  And we really did have faith that it would be alright. And Charlie helped.  The medical staff often commented that if they hadn't known the facts and tests results they would not have believed  just looking at him that he was so close to death.

          still finding energy to play even with tubes from his badly infected tummy and his brain

On June 2, exactly 6 months since our first admittance, Charlie was discharged with a clean bill of health.  He had 11 weeks in hospital and 8 surgeries over 6 months and finally he was ready to come home.  As you can imagine this experience had a huge effect on us all, our older children especially. We were all exhausted but extremely relieved Charlie had pulled through.

And now on with life...
We had been home for a few weeks when our local early intervention physiotherapist came for a home-visit.  We sat and discussed Charlie's future and Lindy was saying how she predicted Charlie wouldn't be up to doing anything new or challenging until at least December. I nodded my head and thought I should put away the walking frame we had on loan from the hospital.  But at the moment Charlie had crawled away from us and the next moment he was walking on his knees pushing the walker in front of him.  Lindy and I sat there agog.  Charlie!!

and that is when Charlie showed us to never underestimate him,

 his desires or

incredible spirit

by the end of July Charlie was walking in his frame although he never really liked the frame

In December, Lindy the physio and I were once again wondering what Charlie would aim to achieve in 2012. She had a Kaye walker that she thought he might eventually be able to use. And then, as he had done before, Charlie crawled to the walker, got onto his feet and took off...

                                           on a Saturday afternoon family walk to the park

..stay tuned for our very exciting news and tomorrow I will reveal the latest talents of our little lad, hopefully including some video (if I can figure out how to upload it). It's nothing short of a miracle.
Kate