Saturday, March 21, 2009

World Down syndrome day

As Down syndrome is due to 3 chromosome 21s, the 21st day of the 3rd month is World Down syndrome day.
In NZ we have national awards for 3 people with Down syndrome presented at a tea party. Usually this is at Government house (and 2 years ago it was prince Andrew who presented the awards) but as the Governor general was busy this year, the awards were held in Palmerston instead with the mayor hosting a tea party at Caccia Birch house - a beautiful original homestead of Palmerston. Because its a small venue tickets were limited to 2 per family, but having three children with Down syndrome we managed to count as 3 families!
There was a lovely afternoon tea with cup cakes decorated in purple and orange (the colours of the NZ Down syndrome association) these were in front of us all through the award presentation which came before the tea party and stopping Noah and J from eating them was quite hard. Noah was pleased because his school teacher was there too and it was very helpful when she let him go and sit with her so I could catch up with some old friends.

I was quite exhausted even before arriving at the tea party as I'd had Noah, Lily and Isaac at the optician that afternoon. Noah tried so hard to behave but he loved the big machines around him so much that every time the optician looked away, Noah would surreptitiously lean over the side of the chair to touch the machine. One time he nearly fell off. Noah was very pleased when he could wear the special glasses as he thought they made him look like Wall-e.

Lily came in next and her sight is much worse than Noah's. Noah tried to help her along - Lily said "I think that letter's a C" and Noah said "No, It's an O"

The outcome is that Noah needs glasses for his long sight . Isaac as we knew from the hospital needs glasses for his squint and long sight. We had come to this particular optician as one of the staff has a daughter with Down syndrome and so has a particular interest in fitting children with Down syndrome. They often have trouble because of no bridge to the nose and very small ears. The optician is trying to import some special glasses from Canada. these were designed by an optician there who couldn't find glasses that would fit her daughter with DS. We will try these glasses for Noah and Isaac, but Lily found some frames that fit well from the usual display. She is paying the $500 for these and was planning to spend another $250 for lenses that go darker in the sun. - I stopped her doign thsi as she has no idea of the value of money

We also ended up with a referral to the ophthalmologist for Lily as the cataracts she had as a baby seem to have grown and now impinge on her vision and may need removal. The waiting list for the public hospital is so long that we decided to let her be seen privately, so that will be another $100 cost for poor Lily.

We are still trying to work out what to do about buying hearing aids. If she was still at school they'd be free, but now she's at work she only gets $200 off the more than $4000 cost. This is practically her salary for the year - it would almost be worth sending her back to school!

Joe has made it safely to Korea. We talked to him on Skype - what a great technology - totally new and scary for me but it doesn't cost anything and we can see his surroundings.

His aim for today was to try and find another Westerner - he hasn't seen one yet!

1 comment:

Anonymous said...

Maybe you could try telling Enable that Lily's hearing problem was diagnosed while she was at school but because it has taken so long she has recently left. Hayley's "barbie" frames are no longer available in NZ so enable said I could purchase them from OZ and they would reimburse my subsidy. I found them quite accomadating. Isn't skype great, Hayley and Ashleigh had a chat tonight (did you know Ashleigh and Sharon have moved to Oz)? Jim still getting there!