Playtime

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

Caring 4 Aiden

I’ve been contemplating my next blog update and originally thought I would tell you about the lounge room renovation at our Glebe St house.  Then lying awake for most of the night last night I was thinking about something that happened yesterday afternoon that would make a nice blog update.

I left work early yesterday. Feeling sick and fed-up and wondering for the 10^th day in a row how I hadn’t managed to cough out my poor baby bump early. I was also fantasising about “un-friending” the next person who updated their Facebook status with tales of warm weather and cocktails or anything related to wine and chocolate.  Need a holiday much?

On the 45 minute drive home I contemplated whether I would go for a walk before it got dark (most of my walks over the winter months being conducted after 8pm in the cold) but as I got closer to home I decided to park the car at home and walk up to Aiden’s daycare centre to pick him up. Two birds and all. Arran came along for the walk, having been home all day on a bank holiday. Yes banks make so much money they can afford to give their employees an extra days holiday while the rest of us work!

We arrived at Caring 4 Kids at the Broadway Shopping centre. As we entered the multitude of doors that would impress gaolers at any maximum security prison, the centre Director Toni saw us and was so excited! She had seen Aiden do something during the day that she had never seen before and was desperate to show us. She bowled past us, through more doors to show us out to the little outdoor area where Aiden and his group were having fun with Chantell.

Aiden, as always was very happy to see us and couldn’t decide who he wanted to be with more! It’s unusual for both Mum and Dad to pick him up! He had a desperately needed hair cut the day before and one of ‘the girls’ had fashioned his hair into a Faux-hawk! Cute.

Toni scraped open a little shed in the yard and pulled out 6 coloured buckets attached by a rope and demonstrated how Aiden was able to walk across each of the upturned buckets all by himself (like stepping stones), while she watched nervously by, ready to catch him if he fell. 

Aunty Em found this photo!

Of course any encouragement to get Aiden to repeat this feat was useless. Aiden refused to be a show pony and would not perform on demand! Toni did a great demo in his place! Probably doesn’t sound too remarkable. Most 2 year olds could easily do this.

Aiden has a visual impairment. He has a genetic condition called Albinism, specifically oculocutaneous albinism, which means he has no pigment (melanin) in his hair, skin or retina. He is pretty pale with white, white hair! An amazing number of people stop to tell us they were as fair as Aiden when they were little or their children were as fair. We generally nod and smile while thinking “yeah right!”. Arran has been known to show less restraint with sticky-beak, nosey-bodies in line at Coles.

To date, we have had only one instance of a lady chatting to us at Astor Espresso in Glebe who actually has a son with a similar condition to Aiden. While not having pigment in your hair or skin is not too concerning (apart from wondering if you should invest in sunscreen shares), pigment is needed in your retina so you can see well.

Aiden can definitely see, though will probably end up being “legally blind”. Functionally, his sight is pretty good. He rarely trips over things or runs into walls, despite well meaning people assuming this must be the case. In fact he is generally more careful than other children his age and rarely sports the bumps and bruises of other kids. His reduced sight has meant that some of his physical development has been delayed. As babies develop they are motivated to move because they are curious to explore their surroundings. If you can’t see your surroundings that well you tend to stay put a little longer and develop physical skills a little later. Aiden crawled and walked later than his peers but as a consequence of being stationary for longer is a really good talker!

Since Aiden was very little Vision Australia have been a fantastic help. Anna, his Occupational Therapist has made home visits, invited us to events to meet other parents of children with Albinism and other visual impairments and worked closely with Toni and ‘the girls’ at Caring 4 Kids to ensure that Aiden’s development keeps up with the other kids. Anna has also worked closely with the additional carers Toni was able to secure for Aiden through government funding.

So Aiden being able to walk across coloured upturned stepping-stone buckets by himself is pretty cool and so is his carers being so excited about this achievement they can’t wait to show us. This was the best bit of my day and I was glad I left work a little early. I think it’s pretty hard to find people like Toni and Anna but I’m really glad they are involved in Aiden’s life.