2014 - another new year brings....

Well, well, well....Hello and welcome back. If video killed the movie star, facebook killed this blog. Or did it? Today I had a message asking for a link to it. I had to reply that I had closed it about a year ago. The shams has been a great source of therapy and fun and creativity and sharing for years. Facebook is not the same. The focus on the minutae is greater. I don't get to grand stand and rant as much. Hey at least it isn't twitter! Still some things in this world require time and thoughtfulness. They can't be condensed so easily for a 50 - 100 word post. I am not that skilled a wordsmith!

And so not quite a year since my last post - I am back. If you happen to chance upon this blog I hope that you enter into my world with good faith and a generous spirit. Feel free to comment or say hi. Especially if you are on the 'outside' of the disability community  - I welcome you and hope that you embrace the opportunity to see another side, another view. If you are one of our community - then welcome! My journey is not yours, but when we share our experiences, our perspectives, we add to a ripple effect that I hope spreads an important story of acceptance and richness that is often overlooked or misunderstood. Please - leave a comment, say Hi. It's in our presence that we are strong. Sometimes being a witness is all we can do. To acknowledge reality as it is for another person. It may not be our reality but it doesn't mean it isn't real. So please - any comments - be kind! I don't mean to offend anyone and some things I have written I don't even necessarily agree with months or years later... but I did feel them at the time and I am honouring those emotions by leaving them up and (relatively) unedited.

This new era f blogging brings other dilemma's for me. Not only are my children older and more aware of their own right to privacy but an important change in my career - one that I'd like to explore on this blog is that of a special education teacher. I will have to play with what I can share on that. I'd love to reflect upon this change in the Shams but obviously there are many ethical aspects that I will also have to balance. We will see how it goes.

For now - an Update.
Twins - just started Year 4. Progress - very good! I am very pleased with both brats. Can't believe how much they have grown.
Work - I am a Special Education Teacher!!!!!!!!!!!!! Wow, that feels weird. I still have to get my head around it. For 20+ years I have been a HSIE (Social Science) teacher. Now I am learning to shift my professional identity in a slightly different direction. I sit in other people's classes - watching carefully to monitor how 'our' kids are going and constantly thinking about how I might help them more. I love it! But after being the show pony of hte classroom for years - it makes it hard to melt into the background - I am learning though. ANd just in case there's any doubt - the kids - they are awesome of course!! Big ugly teenagers. Hormonal, moody, atypical and delightful. Puzzles of people that I am privileged to get a glimpse of, to have the opportunity to get to know, just a little bit more.
Home - still living in the Dock and, drum roll please, about to put in tac claims for the last xx years! This is a milestone cos we have promised ourselves that once we did this we could start to look at architects and ideas for adding on a couple of rooms to our home in the Dock. How exciting is that??? A boys bathroom might no longer be just a dream - and maybe one day I'll have hot water in the kitchen :-)

Photo from above was taken this weekend. We took the kids down to the Shack - with 3 other families. It was a blast. The kids have all grown and are doing so well in their different ways. It was great to see everyone. I was particularly proud of my Kit. He just excelled. He is very sociable - and used those skills to involve the other kids in different games/activities. He got on with everyone and provided a great role model for the two younger kids who were also 'typical siblings' like him. He gave acceptance and understanding and friendship to all  - and I know he gained so much from it - not least the opportunity of deepening friendship with 6 other kids (including his own sister). It was a priceless experience for him. He is a natural leader. I must say that I also think he was the one who looked like he had the best time too!

And as for my precious girl, well she continues to delight. She had a blast but she also enjoyed getting home, to her own environment.

Born this way

Born This Way

Click on the link above - and I hope it takes you to a youtube clip that I just LOVE! I have watched it a few times already today - cos I just enjoy it so much.

March 21 is World Down Syndrome Day. Last year on a  whim I wrote a fb post - and then felt a bit trapped into writing one each day up until the 21st... it was fun but also required a bit of time and thought as to what I could say and how I should say it. THis year I found myself feeling guilty. Committed families were putting up posts and I was still dithering around as to what to do. In the end I opted for organising an early dinner with another family that we are friends with - whose daughter is absolutely Hannah's favourite person in the whole wide world...and some picture postcards that I have put up on fb.... One of which already had the "Born this way" quote on it....

This video clip is all I really would want to say for this year's WDSD. I guess that I am lucky enough at the moment to feel how totally 'normal' our lives are and hence I was struggling a bit with what to do to mark WDSD - because I absolutely believe that it is an important day to celebrate and advocate for inclusion for people with DS.

I might think of more to add before the 21st but for now - if you haven't seen this on fb - please check it out - it is awesome fun.

Which Brat has Down Syndrome ... and Who Cares?




Below is a post that I wrote a while ago and kept as a draft. It represents my feelings of course but I never published it - I felt it was a bit too much like preaching to the converted and others have said the same sort of sentiments so much better than me anyway - I had decided to just let the facts speak for themselves.

Last night I read Mauzy's Musings (it is a regular read for me - Nash is just gorgeous). I was shocked to hear of Jan's distress over the story run by Indy's Child. I remembered reading the blog where she excitedly wrote about the fabulous photo shoot and how wonderful the whole thing was going to be. I even thought 'Wow! That's great. I wonder if Sydney's Child would ever do something like that?' So to read of her bitter disappointment - and believe me - when I read the article I can totally understand her position I too was upset - for Jan, her family, the other children in the picture and their families and all of us who care for someone who is 'atypical' or who has Down Syndrome.

The main thrust of the article is on prenatal testing but the subtext does absolutely nothing to represent anything positive about the gorgeous children who have been exploited on the front cover photo. How dare they? So I have decided that repeititive or not I may as well publish my original post as well as respond to the appalling attitude and unprofessionalism evident in the Indy's Child magazine.

Like many other bloggers - I would like to say:

I was fortunate. My twins were born on the 15th October 2004. One of them has an extra chromosome. Both of them are blessings for us and the world they entered.

And the earlier post:
Where There is a Will has a link to a great article from Webzine by Robert Rivera.

It is about an issue that is close to many of us I know - prenatal testing and consequent termination of foetuses with DS.

It is impossible not to take such decisions personally - after all - the message that this gives is that Hannah and children like her do not deserve to live - that in some twisted way it would be 'for her own good' - that it would be better if she hadn't been born. This is so obviously ABSOLUTELY WRONG!! Why is there such a fear?

Believe me I know the grief of having a child who doesn't fit in with the 'regular' mould. I hate that she has to struggle for things that come so much more easily to her twin - like sitting up, crawling, walking, forming words, holding a crayon and so on. It is really important to remember though that she will do all those things ... She is such an amazing and strong willed brat that she meets each challenge head on and so far triumphs every time in time.

I used to hope that those who decided to terminate based solely on a DS diagnosis would go on to breed a serial killer or drug addict or an 'ungrateful child' - anything that they might find 'undesirable' really and that could not be detected prenatally. I am a bit more sympathetic now - I think that too often these people must be operating from fear of the unknown in difficult circumstances and it doesn't seem that the medical community is very good at providing them with real choice. That is where our children and their families and friends come in - hopefully in our own ways we can help change some of these perceptions about supposed 'imperfections'.

Being a parent should be more about the child than the parent - that is just the way it is. Children are their own persons from the minute they are born - we can only love them and provide a sound environment for them. Their value is intrinsic - it shouldn't have to be earned. The same can be said about adults too - it is just that sometimes it is harder to see.

So once again to the writer of the article in question - yes you are fortunate - of course you are! But so too am I - it just means that you have to stop and think and put aside your prejudices and fear of the unknown before you can truly appreciate that I am not making this up:

I was fortunate. My twins were born on the 15th October 2004. One of them has an extra chromosome. Both of them are blessings for us and the world they entered.

To the editor: You are responsible for the content you present in your magazine - I hope that you are going to balance this article with accurate and quality information rather than uninformed fear - it is the least you can do.