Getting to know you

Lil Z and I see a lot of professionals. Some of them, like her physios and OT, we see on a weekly or fortnightly basis. Others, like her paediatrician, we see every few months. And some, like the doctors and nurses in the Emergency Department or on the wards, we may see weekly for a month, and then not again for several months.

No matter how frequently we see them, the best professionals are those who take a real interest in Lil Z and her life – not just her medical background. And it struck me again the other day, when I was reading this blog post from Chasing Rainbows (make sure you have tissues handy), about how lucky we have been so far in finding doctors and therapists who do really care. And I hope (in a slightly anxious kind of way) that it continues when she starts school.

However, I’m always working to strengthen the bond that Lil Z has with her “team”. Most of the doctors and therapists who see Lil Z see her at her worst. She doesn’t enjoy trips to the hospital (who does?) nor does she take kindly to being examined – even in the most hands-off kind of way, let alone trying to put in eye drops or (her personal bugbear) measure the circumference of her head. Equally, she hates being made to do things that she doesn’t want, which pretty much encompasses the whole of physio and occupational therapy. Even when she secretly enjoys it (such as the scooter board or trampoline) she won’t give her therapists a moment’s victory and instead will give them hard, sullen looks, suggesting that she’s only doing this for their benefit.

So, I’ve recently started showing home videos at therapy sessions. It was a bit embarrassing at first, but after her physio nearly fell over laughing at a video of her intentionally kicking her sister, I realised I was on to something. What better way to show them that she’s not always the sullen, grumbling child they see, but also a chatty, active and sometimes mischievous 2-year old who will put up with far more bizarre positions when sitting with her sister than she ever would with a physio.

I am also on a mission to start handing out copies of her “passport” too. A brilliant FECS social worker (who sadly was made redundant at the end of last year) helped me to compile a “passport” for Lil Z – a document that not only covers her medical and therapy needs, but also her achievements, likes and dislikes, and wishes and dreams. It is a fantastic way to get to know Lil Z and has been required reading in our house for all babysitters and respite carers. I’ve now made a slightly shorter version that will go to her therapists (a list that is constantly growing), school, and support organisations.

The more people who see Lil Z for how she really is – and understand the hopes and dreams we have for her (QB and I recently did a “vision board” of her future at a special needs workshop, so we’ve got plenty of vision) – the more I am convinced they will go out of their way to make sure she has the best opportunities possible. Because she’s not going to get the medical care, therapy or education she needs if she’s not seen as the amazing and complicated little girl that she is. She’s not a medical mystery and she’s not a number or just another child with difficulties, she is Lil Z.

Since being dropped into this new world of special needs, I’ve been occasionally shocked and horrified by the attitudes of people towards disabled children. These range from online comments suggesting that because severely disabled children will not grow into “productive” workers and will rely on the state for funding, they should at best be terminated before birth and if not then institutionalized from birth. After all, they argue, no one really wants to raise a child with special needs. There has even been a councillor in the UK who has suggested publicly that special needs children should be “put down” as they are too costly on the system.

Obviously these are extreme views of a small proportion of the population – most of whom like to hide behind the anonymity of the Internet to voice their opinions, or just say inflammatory things to get a response. Still, I sometimes wonder how many people are out there who don’t think that children like Lil Z are worthy of government funding or support.

Fortunately, that question has recently been answered in Australia, where the federal government has just approved the National Disability Insurance Scheme (NDIS), a radical and much-needed overhaul of how it funds care for the disabled.   The scheme is designed to help disabled people and their carers to more easily access essential care, support, therapy, equipment, early intervention and training. It is also designed with a long-term perspective (rather than a “this is how much money we’ve got left in the budget” perspective) and also gives the disabled person to have a say over how and on what their funding is spent.

It is a crucial and revolutionary step for Australia. It has required a tax increase to fund it, but it has been supported by both the Julia Gillard government and the opposition despite the fact it is an election year (sure, they’ve argued about where the funding should come from, but they are politicians after all). In fact, I’ve seen very little opposition to the NDIS at all, from anyone, and what opposition there has been is about how it is financed, rather than if it should be enacted or not.

Prime Minister Julia Gillard broke down in tears when announcing the new legislation. I hate the fact that female politicians are always picked on by the media when they get emotional, far beyond that of their male colleagues. However, this time I was glad she got choked up. She explained afterward that she was thinking about the impact the NDIS would have on some of the children she’d met recently – including a little girl with Downs Syndrome and a teenager with cerebral palsy. And I liked that because it meant that she was really seeing them as people, and realising that she was doing something that would change their lives. It suddenly wasn’t just about statistics and percentages and votes – it was personal.

And that’s what I’m hoping to do on a smaller scale for Lil Z. So, I’ll leave you with a few excerpts from her passport, so you can get to know our amazing girl a little bit better…


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