The Entrance Mini Break with Nan, Pop and two cousins


Just back from a brief stay up the coast. The brats had a lot of fun. Kit played with his teapot and showed that lovely compassionate side of his by giving his cousin a cuddle whenever she had a cry (she does tend to cry a bit if she doesn't get her own way - not unlike the lad himself!).
Hannah bear had some cuddles with her Nan and lots of walk as her 5 year old cousin is just the right height for holding her hands and helping her out although we often had to remind her to be gentle when she was 'helping' Hannah get into standing position.
Their older cousin is 6 (7 next week) he showed his muscles carrying Kit around and read stories to Hannah. It was a lovely tribal interlude and I must say that I too enjoyed spending time with my niece and nephew.

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.

Evening feeding - not always 'easy' is lots of fun!

One week till holidays. It is a lovely time of year here with winter set in but still lovely sunny days. The brats and I have had a pleasant couple of days together. They love Tuesday playgroup and although Hannah wasn't very co-operative in the picture recognition game she made up for it by signing and participating enthusiastically during story time.

Today I took them out to the DSA to return a few things and browse through the library there. We then called in on their cousins for a bit before going to Hannah's music therapy class. Needless to say by then they were both very tired and so music was not the best class they have had but luckily the therapist is very patient and after seeing them every week for the past 6 months was lenient with them. Hannah still can't 'blow' the horn but she tries every week and eventually I know she will do it. She enjoys the drum and piano more.

When I was pregnant my husband and I had a subscription to see the Sydney Symphony Orchestra. I remember at one gig I said that I wanted one of my babies to learn the cello and the other piano. I also stated that I didn't want either of them to be a musician however - my husband was bit appalled by this as he himself loves playing guitar although not professionally. When pressed I gave my reason - because I want my children to have an easy life - full of love, laughter and grace - and being a professional musician (especially here) would be a hard way to make a living.

So when just a few weeks later we found out that Twin 1 may have DS and definitely had an AVSD - I cried and cried. Her life was not going to be easy - not from day 1. 20 months after their birth - I would have to say that they have a good life. They have lots of fun, love and just enough routine I think to get by on. Hannah does struggle but with such good nature and strong will - she started standing for just a few seconds yesterday and can now walk with me only holding one hand for a fair distance. She does get overwhelmed when in a new environment or if there are a lot of people around because it takes her a bit longer to process all that is happening and I know that she struggles sometimes at child care but overall - are my brats happy? Do they have an easy life? Yes. Absolutely yes - I think that they have a great life - evidenced by their faith in adults, their joy in social situations and the fun they have with each other as well as their self sufficiency in play. I hope it stays that way for them forever.

Jigsaw Skills
A quiet weekend

Not much going on in the shams this weekend. I spent last week investigating alternative childcare centres but have decided to leave the twins where they are after all that! Hopefully we have made the right decision.

They are at a nice community run place that feels like a home. That was/is a bit of the problem. Good intentions - but not the skills perhaps that are needed to bring out the best in Hannah bear. Besides internal wrangling and registration issues that have seen one director move on and an acting one take over.

The philosophy of letting the chldren play and devlop through their own interests at their own pace might work well for typically developing children - it certianly works for Kit who has made a 'best friend' there - he spends a lot of time in 'home corner' with his mate. Hannah however benefits from a more animated approach that encourages her to interact with her peers or prompts her into doing an activity like puzzles or cause/effect toys. She is an active and curious brat but a jump start can really benefit her - especially as she is the only under 2 they have that is not walking.

So I investigated another centre that was very enthusiastic and had a special needs coordinator who seems excellent. But somehow it feels wrong to move them because the staff where they are are inexperienced - after all - what did we know about T21 before Hannah? The staff there seem keen to learn - 7 of them came to a signing evening run by our early intervention program coordinator. So I am giving them another chance but if at the end of the next term I still feel that more 'child minding' is happening than 'child development'. I will have to consider moving the twins again.

So is this the beginning of my career as an advocate - am I failing in it already? Taking the easy option? I hope not. I have got a few ideas on how I can help the carers with Hannah and how I might make some constructive suggestions for interactions with her. Fingers crossed it works out. Here are some pics that I took - part of the plan to demonstrate the sort of play that it is good to encourage the bear to do or the sort of things that she enjoys that are especially good for her to do.



...STANDING..













World Cup - Australia v Italy - I have to say that even I am enthusiastic. Never thought Australia would get to this point and as I have lived in the Leichhardt vicinity (full of Itlaian Austalians) for the last 20 years - it will be a great game. They are going to close Norton Street. In our pre baby days we would have walked up there but nowadays I think we'll set the alarm and get up and watch it from the comfort of the lounge room. They are selling half and half jerseys in the area too - as a local with no Italian heritage but a few good friends of that extraction I almost feel that we win either way!


Hannah loves 'row, row, row your boat ...'

ACCESSORIES
Big Brat, Brown Hat
Little Brat in a Hat

Hannah's Stance


Kit's Other Hat

Hannah misses mum. I had been out all morning (looking at the most beautiful quilts at the local Stitches adn Craft Fair) and this pic gives you some idea of Han's face when I got home. So sweet.

Pop's birthday lunch
Today we went to Nan and Pop's for lunch. It was a cold but sunny winter's day. One brother was missing but otherwise we were all there. It was great to be relax together and to watch the cousins (five in all) maraude together for a while. The aunts were very impressed with Hannah's signing and saying 'more'. I was not so impressed - she was after more salty crackers! Later this week the aunts will be going to a signing evening so hopefully once they know more signs they will be able to encourage the little brat to use all the other signs she knows more often! When I was telling them which signs she does use - I was amazed at the length of the list! The little bear is doing pretty well in communicating. She is also doing well at potty training but is not very clear in the sign as she tends to use 'bath' (the pot being in our bathroom) and says 'baba' which can be mistaken for a number of other words. Still she likes using it and seems to try and wait until I put her on the potty so that is good. It is funny how three little words seem to be all she and Kit really need to get by on - NO, MORE and MINE - all others are bonuses that they include to please us I think.

Three cousins together. It is funny to watch how these three often do the same things - not even copying - it is just that in some situations it must occur to them to each do the same thing!

The dress - a gift made by Nana - doesn't Hannah look gorgeous in it?

When I was growing up it never occurred to me that the children I wanted would be so long coming, or that I would have twins, or that one of them would have DS, or that their father would be a man I met in Senior High School, or that I would be living in a different state to my parents. I really miss being able to just call or drop in on Mum and Dad and I know that they miss having the grandchildren so far away. When I was young I never dreamed that life could be so complicated, complex or so good either. Still I wish that my parents lived closer. Thank goodness for the modern wonders of email and webcam.




The sun cmae out in grand style today which was nice after the wet, cold week just passed. We took the monkeys to Darling Harbour Jazz Festival and they had a ball - they especially enjoyed the noodles for lunch. They are sleeping soundly now - two of our dearest friends have finally came back to SYdney after living in New Zealand for a few years - so we let the brats stay up past their usual bedtime so they could rampage a bit with their godparents. They (the adults not the twins) are out watching the soccer and I (as the least sporty person on the planet) am home babysitting my own children! SO it goes ...

June Long Weekend - For the Queen's birthday.

Sport Sport Sport - I can hardly believe it - I even found myself creating an imitation soccer game with Kit in the bath using ducks as players and a couple of soft balls. The rugby is on tv at the moment and before the night is over the World Cup will be on. Phil is very excited as the local bowlo is having a 'sausages and sauerkraut' night in honour of Australia's first game against Japan. Me? I can't stand sport! Of course as an adult I can see that it has intrinsic value and have already reached an agreement with the twin's Dad that he will be responsible for their future sporting activities - I am even looking forward to it in some weird sort of way but Lordy to watch endless games on TV? No thanks.

My mother made a gorgeous smocked dress for Hannah but was not able to finish off the hand sewing so I have finally finished it off tonight. It will look great on her - hopefully she will still fit into it when she is walking as it will look even better then. Today we went into town and I got the brats a couple of winter outfits in the sales. I baked a cake this afternoon - I am still very much a novice but this simple chocolate ripple number turned out quite well. One of our best friends came over for afternoon tea so really the cake was in her honour.

The kids have been having a good weekend and I know that they will enjoy having both parents around tomorrow. Hannah particularly does not like being left at childcare - the difference in her when I leave her with her grandparents on Thursdays and child care on Fridays/Mondays just breaks my heart. Still I need to work and I know that she is fine after a little while.

It has been raining here and our little house is feeling rather drab and damp so I hope it fines up tomorrow. No plans outside of soccer viewing so if the sun does make an appearance we may take the brats to the park - they love that.

Eyes ... Ecstasy ... Joy ... Friendship ... Laughter ... Soul ... Terror ... Faith ... Love ... Fun ... Risk ... Compassion ... Hope ... Support ... Grace ... Rewards ...

These are some of the lessons I have learned in the past two years. To lose myself in others without thought or expectations and with no regrets whatsoever - how bright is life with you two in it - intensely satisfying (and all this while in a state of fairly consistent near exhaustion!).

You are there in all my thoughts and interactions making the world seem sweeter. Troubles are given an automatic perspective - not that I don't care anymore - I do - in some ways more than before - but only now about the things that really matter. I want to do my best for you and so I realise that it is you two pintsized brats who control me - I surrender!

Your essence is there in my journey of faith too - never have I felt such anger at God, never such joyous thanks either. The poignant wonder that is the miracle of you two - being mine. I wonder if our friends think that you have changed us? Your two parents - always happy to be together now so freely have we expanded our lives to encompass yours. The joy must be there on our faces. The core of our being has shifted. The world has a sharper focus, us a softer gaze.

Thank you.

A corny post I know but what else was I to be thinking about when I had two and a half hours of exam supervision in a row! Words don't do justice to the way my twins make me feel. I still sometimes find it hard to believe that they are so very beautiful and that they are ours. God bless them always.