Livvi's Place

Here is a great link (in the title) for anyone who lives or is likely to travel near Five Dock in the wonderful inner west suburbs of Sydney. We took the twins today (it only opened last week). I felt quite teary seeing so many families - and at least 3 others - who had children with special needs - enjoying the first all abilities playground in Australia. The equipment is great - and I felt that the other families (those with 'regular' kids only) were also very happy and comfortable to mingle with the special needs kids. A lovely inclusive environment in my local community. YAY!! Thanks so much to the Touched by Olivia Foundation. Next time I will take my camera so you can see how much fun the brats and their Mum and Dad had on the equipment.

Gifts2

It seems appropriate as I plan for Christmas that my copy of Gifts 2 How People with Down Syndrome Enrich the World arrived yesterday - and I dove right in. It is a little repetitive - which just highlights to me that even though no story is identical - the discoveries we make of ourselves, our world and our children are all very similar. I love the stories I ahve read so far and will no doubt finish reading the whole things soon. That's ok - I bought my own copy specifically because I knew I'd do that. Devour it, cry and laugh and ponder as I read all the different contributions - and then have it on my growing shelf for books related to disability - in particular DS - so that I could 'dip into it' regularly.

My favourite story so far is The Missing Piece by Beth Duncan - the photo that accompanies it and the opening paragraph - yes Hannah does that exactly. Holds my face either side with her hands tihgt, looks totally focussed into my eyes and says loudly and clearly and sometimes repeatedly, with intensity and love "Mummy". I love it. Those moments are so precious to me. Like Zane in The Road Less Travelled by Danielle C Perry says "When we tell Zane we love him, occassionally he'll say it back just as my other children do. Usually though, he grins and knowingly says, "Yeah". ... It is a beautiful response in its sincerity and simplicity."

I smiled with knowing as I read Mulch by Julia Pewitt Kinder - oh yes I recognised that Doctor - and smiled with compassion as she railed against having a child who didn't fit the medical box - a 'healthy' child with DS. Yes our kids can bamboozle us can't they? Oh and in Making the Best of Us by Cindy Groom harry when she tells of her daughter and soninlaw receiving a second opinion from a pediatric cardiologist who explained to them that "the heart was repairable and that there was no reason the baby couldn't be born ... and live well!" Yes I still love my cp - for a very similar reason. He was the first medico who dared suggest that even if 'twin1' had DS - that we would be fine. {He was wrong of course - we aren't 'fine', we're wonderful - but I still love him.}

I recognised the new shoes of Amy Armstrong in This Walker Doesn't Match my Drapes - the new soft shoe - yes I wear a pair of those! And the love in Angelico brought tears to my eyes. My Dad feels that way I am sure about Hannah. She brings him peace and helps him as he adjusts to life as a 'widower' like nobody else can. That light that Bridget's Mom talks about so evocatively - yes and 'Grah' can see the rainbows in that light too - just like Zane's Mum talks about - "Over the rainbow I wish to see -- lots of colours". Han helps us recognise those flashes of colour too.

The stories by siblings and friends - I think of Kit as I read each one. One day he will tell his story about his twin sister who happens to have DS. I am sure it will be a remarkable story reflecting their remarkable and unique relationship. I hope it is. Amy Flege's story of her cousin Shelly made me smile too - when her daughter was born with DS "We knew she was already perfect. We knew because of Shelly." I wish I'd known too - I wish I'd had a Shelly to know and love. Instead as Jennifer Marie Seiger says [and not only in relation to the way we talk about people with intellectual disabilities (the r word) because language of course conveys our feelings and undertandings (or lack thereof)about intellectual disability]. "We are raising awareness. We are on the path of acceptance. We are passing it on." It is a gift. A most wonderful gift. That gift is almost as good as the other great gift of children like Hannah and Emily - as Beth Duncan writes in The Missing Piece "I'm glad that Emily came into my life because, among other reasons, she is gradually showing me who I am." I agree wholeheartedly. Can't wait to keep reading!
Here she is - definitely a gift - just like her brother.
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Christmas and Dentists

Hannah went to the dentist today - a new one - and only the second time she's been to any. She did great - Hannah and the dentist!! Just kidding - no the dentist had a great manner came and got Han fromt eh witing area herself and spoke directly to Hannah. She has 20 teeth. No grown up ones showing yet - they are on Mr Kit but he is seeing a pediatric dentist in Dec (part of the before school get your act together Mum routine) because he already has ahd an extraction and crowns poor baby - my teeth aren't good either so I guess he gets that from me.

Life at the Lunds has a picture of a magnificant poodle skirt - and I so have a soft spot for the hounds (ours is 8 years old). I already ahve a winter wieght one of my own - maybe I'll see if Target have a full plain skirt - and then all I'd have to do is apllique a poodle onto it. Spotlight VIP sale on tonight - might see what they have. Or I could pull out Mum's embroidery machine as she had some poodle patterns for it I think.

Have been cooking heaps from Stephanie ALexander's Kitchen Garden COmpanion. It is FANTASTIC - and the kids have enjoyed (and helped with) every single recipe I've used so far. SO today in a spare minute we went to the garden centre for some seeds and some seedlings. Lets hope they thrive.

kindy

I took the twins to kindy this week for orientation. So now I have gone to both possible schools. It went so well! I was very impressed - organised to within an inch of it's life but still a natural and fun event. We were greeted by various students and teachers thent he principal introduced some of her staff before sending the kids off to the kindy room for activities. Afterwards both teachers aids came up to let me know that Hannah ahd gone fine and one of the kindy teachers also came up. She was lovely and was keen to get as much info as possible this year - before Han starts school. We intend to have at least one other meeting later int he eyar to go over a few planning things. I am not just looking for a school for Han though - I have her brother to consider and I thought that it was clear that this school would be fantastic for BOTH my precious children. I know it's going to be hard but I think it could also be quite exciting and dare I say it - maybe even a little fun!

T and A

We have procrastinated on htis one until the drs had evidence that Hannah would benefit fromt he surgery. The sleep study she ahd earlier in the year showed that she would - so now I have had to make an appointment with her cardiac pediatrician in prep for surgery in Feb next year - the very first week of school - terrible timing but hte first available. It should help her cope better at school - in terms of alertness, memory etc - so fingers crossed for a speedy recovery - I don't want ehr missing too many days so early in her school career.

Dyspraxia

I've been wondering why this one - (not an official diagnosis cos we aren't getting the formal assessment done) - which our fantastic ST says she thinks we are dealing with dyspraxia (verbal I'm assuming) has thrown me. I think it is because with DS and speech delay like other areas that kids with DS experience delay in - can be explained in terms of 'she will get there - just more slowly' ie the development is similar to that of typical development - just slower - so it is familiar and she will get there inher own tme and in her own way. Not so this diagnosis - and that is what has thrown me - it requires specific and intensive language/speech therapy of a particular style. We have already been doing a lot of it - but it is the 'official' and 'routine' and 'systematic' things that scare me. I don't want to let my precious girl down. I know it isn't autism but it feels like a need for something like ABA - and while I will do anything I possibly can to help Hannah - routine and systematic don't come easy to me. It's a challenge. I know she'll get there, in her own time and at her own pace but I wish she didn't have this additional difficulty to something as vital as speech.

Orientation trial 1

Yesterday I took the twins to an orientation mroning for kindy. While they were off being observed by the teachers in an activity centre I was in the hall being spoken to by the AP and Pres of the P and C Association. Han was certainly happy marauding in the playground prior to it all starting and afterwards she told em she'd had a goot time and sung incy wincy spider.