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Friday, 16 December 2011


Back in August I wrote about Caring 4 Aiden and the great work his child-care centre Caring 4 Kids do as well as the amazing support we get from Vision Australia. In addition to Anna from Vision Australia working with “the girls” at Caring 4 Kids to ensure his development stays on track, Anna and another Occupational Therapist, Cathy, run a playgroup for kids Aiden’s age and younger at their premises in Enfield, Sydney. All the kids have a vision impairment with some having Albinism like Aiden.

Vision Australia have this amazing indoor sensory playroom to help encourage children who are blind or visually impaired investigate and be stimulated by their surroundings. It’s very cool. I reckon any kid would like going there. There is a big ball pit, slides, a bridge, a small trampoline, tunnels, small dark rooms with LED lights, things that make noise, bikes, a section of floor with different textures, little tables and chairs for craft or morning tea….Let’s face it, if I was a bit smaller I would there using all this stuff with the kids!

Aiden with Anna checking out a toy
Racing around with a bright trolley!

Vision Australia play group is not just for the kids though. It’s a chance for the parents to chat with each other and with Anna and Cathy and get tips to help their kids.  At the December playgroup I was reminded of how important it is for parents to be able to chat with other parents of children with Albinism, particularly parents whose children are older. When your child is first diagnosed there are a lot of unknowns and seeing how other parents have dealt with different situations and stages of development is comforting.

When your child is small one of the first things are you confronted with is people making comments about them when you are out and about. Often the comments are about their amazing hair colour and sometimes about their eyes, which are moving left to right because people with Albinism have Nystagmus. Dealing with these people can be a problem. For the most part you are still working out stuff for yourself so what do you tell them? Do you give a stranger who you will never see again a detailed spiel on Albinism or tell them to mind their own business and bugger off? I genuinely believe that most people are well meaning, kind and just curious. In these cases I will give a response that ranges from just nodding, or “yes his hair is amazing” to giving a short explanation of his condition. This can lead to further questions and sometimes unhelpful comments; glasses will fix his sight won’t they? They won’t.

I realised recently that working out how to deal with these people was one of my big questions when Aiden was little and had forgotten about that until I was asked how I dealt with it. Full circle. I guess I have just worked out a way to gauge how much to tell people based on the situation eg how the person approached me (in line at the supermarket vs having a coffee in a café) and my patience level for that day and time. I have also got my Albinism spiel down pat so that makes it easier too. If I have the time it’s a good chance to raise awareness of Albinism as most people don’t know much about it.

I think it just takes practice and patience to deal with complete strangers asking questions about your child and I have found that its not such a big issue now that I have gotten good at dealing with them.

So why am I telling you about this? It’s really to raise awareness of Vision Australia and the amazing work they do. They provide a huge range of services for blind and visually impaired people, many at no cost. Bringing parents of visually impaired children together to share their experiences is a very small part of what they do in the community. To continue to do this work they need funding. If you would like to know more about their Christmas appeal there is info here

You may also like to watch Vision Australia’s Carols by Candlelight, on Christmas Eve!
Charlie getting into the Christmas spirit at Vision Australia

1 comment:

  1. Thanks Lisa. Vision Australia is so wonderful. They also have supported Zara through her young years. It is quite the journey as our children with albinism grow up, but an inspirational one (although heartbreaking at times). Learning alongside our children is a growing time and it is important to look back and recognise how much we as parents also grow and learn. Hats off to you - Aiden is a lucky young man (and very handsome I must say).