Good news

With a friend
Pass the parcel
THings have returned to a semblance of equilibrium here in the Dock. Our great friends from around the corner have signed on a property about 4 blocks away - so not as close as before but thankfully still in area!!! Yay!!!! My dad has finally sold his place in brisbane and is glad to have a bit of freedom I think.

Hannah's opthamologist was happy with her today - so no going back there for 12 months. Things at school have settled down a bit and I am feeling a whole heap better about the way things are going - of course I want more but I think genuine stpes have taken place in the right direction.

One of the boys the twins have known since childcare had a party at a park near school last Friday - and cos I work I couldn't take them (they go to after school care usually) but Ss Mum offered tot take them - she has 4 of her own and while you might think that means she has enough on her plate - to me it meant she had the big car to cope and she is one Mum who has offered to take Hannah in the past - she isn't particularly worried about having her and how 'different' it might be - so I took advantage - and the twins went.

By the time I arrived the party was in full swing and not that far off being over. My friend was a bit put out cos she barely got a chance to 'mother' Hannah - her friends from Year 1 took over! Indeed when I got there I had at least 4 little kids eager to tell me every mishap that had befallen her - from her best friend accidentally spilling his chocolate milk all over her at school, another little boy getting juice on her skirt at the park and someone else had knocked her over on some piece of play equipment - all these messages delivered whilst I was looking at one very happy little girl totally at home in her surrounds and with her peers - it was a magical moment.

A couple fo the mums know how hard I have found things recently - they wanted to know how things were progressing - and a coupe offered to write letters to relevant authorities if I wanted - if I thought it would help. Have I mentioned that one of the lessons I have learnt these couple of years - is how Hannah is my gift to our community. People are looking for opportunities t help, to connect, to care - and Hannah gives them that in spades - with a very sweet return in her love and friendship.

Tomorrow is her special needs dance class which she is so excited about, chess club in the am and soccer in the afternoon for Kit. Life sure gets busy - I can't wait for the holidays. Also today I rang the pool about classes for Hannah next term. I'd love her to be int he special needs class (1 on 1) but there never seems to be a vacancy. Still - the coordinator swapped instructors and capped the class - just because I rang to draw her attention to the fact that Hannah had a different teacher next term when I think the one she had this term was great.
Sorry for the lack of photoes - the brats have a fairy party on the weekend - I'll see what i can do to improve the situation.

Carrington

I don't know what to say on this one but prayers from the heart seem the best thing to offer this little one at the moment. I occasionally look at Reeces Rainbow - its pretty confronting. I don't really feel comfortable with the whole prayer warrior thing or the missionary zeal but I am a believe in God, pacifist and power of prayer sort of gal and this little one needs some prayers at the moment. It's funny cos I saw another video clip just this morning - and I was hesitant about putting it on my fb page - it's got that missionary zeal stamped all over it - but it also has a beauty and dignity that I wanted to share - so I got over my squeamishness to share the message within - one that is very close to my heart - one of virtue and grace and earthliness too - and Trisomy 21 or mosaicism or translocation...Down Syndrome.

Remember to B-R-E-A-T-H-E

A few years ago, things were pretty bad. My blood pressure was high, I was having panic attacks as I drove about my usual business, I was having trouble sleeping and DH and I weren't our usual 'in sync' either - everything seemed out of kilter. It was funny because that year that was so stressful for me was actually a stunner for the the twins. They were 3 and we had so much fun watching them blossom. Looking back I am still surprised at how much pressure trying to afford a house in an area we wanted put us under. Plus I started studying part time, I was working and still desperately trying to have my 'ideal' family life of clean house, happy stimulated children (well therapied in Hannah's case) and an extended family dinner each week - with no dishwasher!! On one afternoon when I was feeling particularly low, I spied this printblock (pic above). It says "Feeling a little wobbly", I had to buy it and it hangs on our picture wall reminding me that I will continue to have those days but that I hopefully will manage them better each time. Yes I now see myself as clearly insane. My GP recommended a well known antidepressant - I took one but no more - I deferred Uni and held on...

FFWD a year and we are under a ridiculous amount of pressure in finding a school to meet the needs of the twins - especially Hannah - it was a stressful and confronting time but I managed to mostly keep the anxiety at bay. Then the last couple of weeks blindsided me. I don't see Year 1 as being a stellar year for Hannah. Nothing in particular wrong with her teacher - I just don't know that she has what it takes... she is lovely and a good performer in the classroom but she is set in her ways and doesn't seem to be very able to differentiate within her lessons. So I have reached a point where I am going to just put my head down and roll with it. DO what I can to improve the situation for Hannah but expect no shining lights. My anxiety was back in full force. Then work had some sage - basically my exams were today and I have to have them all marked by Monday - an enormous feat and a lot or pressure....I was chatting to my Head of Dept about the time I was having and we were commiserating on the workload - I made a comment to one of our colleagues that we just had to remember to 'breathe'. This colleague was one I had sat with and talked through some of the problems I was having at school for Hannah.
The first lot of marking came in on Wed - not my day for working My Hod rang and said not to come in especially - he knew I had a meeting at Hannah's school in the morning that I was worried about. My colleague dropped over with my first round of marking that afternoon and brought this wonderful gift with her. It made me smile: Together these candles from Oxfam spell - you guessed it - B-R-E-A-T-H-E.

Something I need to remind myself to do for a bit longer I suspect.

Dancing

After the shouting incident a couple of weeks ago I was pleased to hear that Hannah did great at dance this morning - good listening to the teacher (and no shouting from him). I have also found a dance class just around the corner that is for 5-11yo with a disability. It just started up this month I had to reorganise after school care and pickups etc but it will be worth it. Her swimming instructor is also the dance instructor which I think is fantastic. I bought her a dance costume for the new class and she was very keen to model it.

I have spoken to her teacher about some concerns I have there. She is a lovely person vivacious and approachable but the gap in her understanding about special needs is well and truly showing up. Never mind I think that we will get there. She is going to the NSW DSA workshop so I know she will get a lot out of that. At the moment I think she is overwhelmed by what she sees as Hannah's deficits - when the issue for me is her deficits!! There are some pretty simple organisational things that can be done to make things run more smoothly so I will be looking to see when and where I can hint or suggest them. I want her to take responsibility for Hannah so am trying to be patient.

Initially I think it is about her developing techniques for managing Hannah's behaviour - she hasn't been able to get Hannah to sit at a desk for any length of time for example or even to leave her bag outside the class. Once she takes control rather than let Hannah be the boss things will get much easier for her. I have dealt with the bag issue - will check that it is still working next week when I help in the class. I did mention to her that the best thing she can do for Hannah's self esteem at the moment is to get her sitting with the other kids doing similar or the same work. When in doubt quiet drawing or reading ... so that Hannah sees herself as a valued part of the class learning. I think the teacher has been afraid to call on Hannah to write on the whiteboard for example because she doesn't want her to 'fail' or be embarassed. I think she needs to give Hannah a go so she sees what she can do and praise her for trying. If she doesn't let Hannah have a go she won't learn just what Hannah can do easily and what she needs help with. At this stage and with such great kids I think it will work. Alternatively for writing on the whiteboard if she finds Hannah can't do it - she could do as usual and then get Hannah to copy the word underneath - so the first child helps by modelling (which they'll like doing) and hannah learns and participates by copying. It broke my heart the other day not to see her even raise her hand to try - when I know in other settings she'd have her hand up in a flash to go do something on the whiteboard.

I also would like to see her paired with one of the advanced girls in the class - a little girl who whizzes through her work and then finds time to socialise etc - her energy and learning could be used positively by training her to 'help' Hannah a little to stay on task. I know she could do it and I know her parents would be happy with that because it might address some of their concerns about her rushing through her work and wasting time. That gives the class teacher time to devote to her other students - surely a win win situation. Last year we agreed to get Hannah working diligently first thing - then she is rewarded just before recess and not pushed so much in the later part of the day which I think is a reasonable and pragmatic approach. Some of this valuable morning time is being wasted unnecessarily at the moment. There is also a box of activities there from last year - the teacher could set it up so that Hannah could get a worksheet or activity from there to 'stretch' her sitting working time more... hence I think the first major hurdle is helping the Teacher gain control of Hannah's behaviour, the rest should follow.

At the moment there is good will but not a lot of joy in the relationship between Hannah and her teacher. I can honestly say that by midyear last year it was very obvious that Hannah's kindy teacher genuinely enjoyed watching Hannah grow and learn (and found her less challenging than some of her peers!). That is where I want to see her Year 1 teacher get to too but I realise it is a journey, a step at a time... we will get there. Team Hannah is unbeatable!! ANd this teacher has some wonderful talents and teaching styles that should enable Hannah to blossom they both need a bit of nurturing at the moment. have started talking to Hannah about it as I find the direct approach in this area works best - so when we talk about it I say to her that it is up to Hannah to show Miss Y just what she can do, the same as the other kids. Show her that you are a Year 1 girl like the others, you can sit at the desk..etc

The teacher said she was happy for a communication book but didn't think one was really necessary cos she sees me about etc... that might be something we need to reconsider..hmm it is on the backburner for now I don't want to alienate her - she is our chance of success but we have to learn to work together on this - she is part of Team Hannah even if she doesn't fully realise what that means yet!

Count Me In

Not sure how to put this in the side bar... disability has been sadly neglected and underfunded in Australia, finally things are starting to at least make the political agenda and just maybe we will achieve a fairer go for the many Australians with disabilities, and their carers too.

When I feel frustrated with the lack of resources for Hannah I try and remember just how lucky we are because we can do an enormous lot on the smell of an oily rag. Imagine what could be done with adequate resources?

The media coverage has been very positive an tentatively there may even be a level of bipartisan commitment to these reforms.

Here is the extract from the Count Me In site (which is linked in the title of this post)


In the meantime the key points are:

The Commission has accepted that the disability system is "inequitable, underfunded, fragmented and inefficient and gives people with a disability little choice ... a real system for people with disabilities is required." The Commission has therefore accepted the need for reform and for an NDIS.
The Commission has also accepted that the nation must better meet the needs of those people who currently do not receive any or only inadequate support and that their improved support packages would be portable across state and territory borders.
The Commission recommends the introduction of a fully funded National Disability Insurance Scheme with individualised funding to ensure people with a disability and their families are able to exercise greater choice and control about the supports they need.

Doctors

One small thing I meant to write about here was our visit to the drs yesterday. The twins have a great GP. When they were born I simply took them to the local bulkbilling one I'd always used. He was scared of Hannah. He'd read her hospital release forms and the follow up letter from her OHS and could hardly bring himself to touch her he was so frightened she would break. When I said I wanted the flu injection for her (on her paeds recommendation) he looked very nervous. I had to tell him it was ok and what dosage was required. When it came to immunisations he used to make me come in intervals because he would only give her one shot at a time - a horrendous thing when you have twins and for that early stage it seemed as if I was in his office every week. Once I got a girlfriend to come with me so I could insist that he gave them both the shot at the same visit. He was oldfashioned and fussy and clearly not the best choice for a long term GP for us.

Once we had settled into the area where we now live I went and tested out the local family practice. I took her to a couple of drs there and in the end settled on her current GP - a fairly young (for a dr) male who had studied some paediatrics and worked in a regional hospital. He is great with Hannah and she loves going to see him. He speaks with her and is willing to communicate clearly with me about her medical needs. He acts in a way where I can see that we are part of 'Hannah's team' - a good model for her future.

So in that spirit when I took her yesterday - I prompted her to tell him why we were there. I had to remind her to look him in the face but the rest she did beautifully on her own - the benefit of a pussy ear - the visual is a great indicator of what is 'wrong'. For his part her GP was totally comfortable with that and as I walked out I felt good - a small step had been in my daughter's empowerment and self determination. Now if only the ear would stop oozing - it is grose!

Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard

Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard

I've been itching for this one. Hannah was home sick yesterday with an ear infection and I thought to myself - I wonder if that book will arrive today (it was due late Feb early mar)? Well just as I was heading out to the Drs to get little brat some antibiotics - the postie delivered it to my door.

Perfect for a flick through while waiting at the local GPs. I'd already read the sample pages taken from the introduction and they were good so I had high hopes for this book. I read it quickly yesterday. It's Australian, it's current and it's well researched so yes - it lived up to my expectations.

I like the clear organisation of chapters through life's stages. I read the diagnosis chapter and then skipped ahead to the schooling one: Learning to be Normal, Learning to be Disabled. It was a scary chapter full of challenges and no easy answers but that is not unexpected I guess. Our experience of schooling has been fantastic - so much more than we dared hope for even as late as the year before the twins started school, but then we are only 1 month into their second year at a regular local school...

The chapter I enjoyed reading the most was School's Out: Rights and Rites of Passage because here was a range of stories full of possibility and fun. Some wonderful quotes from interviews with parents and young adults with DS like Benita's mum who says what good company her daughter is and Michael who wants to stay living at home so he can look after his single Mum. Controversial issues like relationships and steralisation are raised and dealt with expertly - letting the families speak for themselves.

The writing style is less journalistic than Kathy Evans Tuesday's Child and corrects one of my bugbears in that book about portrayals of disability in literature and media. Gothard gives a clear yet concise overview of down syndrome in the media, specifically addressing changes in visibility and attitudes. Evans of course is opening up her own experience in all its scary intimacy - the divine and the hideousness of coming to terms with what is undoubtedly a lifechanging diagnosis. Evans states "My child is not my child; she belongs to the world of science. Once she was diagnosed, she ceased to be a baby and became a medical anomoly." Six years on and I still understand the anger in those words. Gothard presents a chapter on medical issues "It's not a disease you know!". She contextualises the diagnosis of DS and the range of potential accompanying medical issues in a way that is the best I have ever read. If I was a new parent on this journey the this is the medical chapter I'd be recommending. In a straightforward way without emotive overtones but the judicious use of quotes Gothard gives the medical profession a slap on the wrist and holds up models of best practice. She recounts people's real experiences. Reading this chapter I learned things that previously I had switched off on no doubt because of the 'horror list' they are so often presented as. This was a refreshing change in approach.

The book is squarely set in WA - and so coming form the eastern states it really opened my eyes to how a different state deals with disability. I loved reading some of the stories that were clearly specific to that state. The inclusion of aboriginal families was well incorporated. I'd love to meet Charlie King and his family - they sound awesome! In fact reading of the kinship system that supports him summed up what we are trying to achieve here in the city of Sydney for our daughter. A fact that Gothard identifies "His extended Aboriginal family - siblings, cousins, aunties and uncle - involves a broader family network than does most non-Indigenous families, and this network serves exactly the purpose that many city-based nuclear families are presently trying to achieve for their family member with a disability." So there we are - included in this wonderful book. Not everyone has Charlie's experience obviously and Frank is a good contrast to this. "Frank's extended absences from his family have disrupted the development of the kind of network within the Aboriginal community which has spontaneously grown up around Charlie."

It also incorporates views from a multicultural society. Making this a sound overview of a range of attitudes and experiences in the world of Down Syndrome. Gothard clearly identifies her own interests in the subject and I was very interested to read her discussion of her research methodology - how to incorporate her own valid experience yet let others own unique voices be heard unhindered. How to respectfully include the views and experiences of people with DS - not solely relying on the 'high functioning'. You can tell that this is a crafted work done with love. Each chapter generally has a positive observation or comment as the ending, my favourites being one on the role of organisations such as DSAWA "Together they continue to raise expectations and generate hope.' and the heartfelt tribute to the vanguard of parents from the 1950s: "Nonetheless the cautious optimism we can dare to feel today is at least partly a legacy of their commitment." The least positive end comment is unsurprisingly in the chapter on education. As Gothard concludes: "Where full inclusion is absent from society as a whole though, it is hardly surprising that you can't always find it in the classroom." A call to arms? I think so...

Lastly for inspiration in this book you can't go past the last and briefest of chapters - "A Different Way of Looking" - a beautifully written summary of Greater Expectations held today by a whole lot of people, realistically, idealistically searching for the best inclusive practises. A perfect read for the day the draft of the Productivity Commission's report into disability in this country is released. I was reminded of NSW DSA's Buddy Walk 2010 slogan - 'we've come a long way baby!' The future for our family is indeed bright and full of greater expectations. This book is a wonderful addition, a guiding light to the next generation of citizens, parents and activists however we choose to define ourselves.

PS I also loved this paragraph in the last chapter - cos I can identify with it!
"You soon find yourself embarassed by your own hyperbole, and convinced they are thinking, 'Well she would say that, wouldn't she!' One mother, who often speaks publicly about her son with Down syndrome, experiences the same difficulty when dealing with this topic, and told me, tongue-in-cheek, that she has to try hard to avoid the 'every home should have one' approach."

LOL. That reminded me of when an organisation (can't recall which one) put a notice in the NSW DSA newsletter about a young boy with DS in need of adoption. I was chatting to a friend, a mum from school who has a 'rainbow family' of biological children and adopted ones from O/S - I was just joking of course (well mostly!) - that Mum didn't go ahead (she has 4 kids as it is!) but she did go home and look up the link...so yes there is definitely something in me that supports the 'every home should have one' (or two ...) approach. lol