DS

The twins' cousins have DSs - and so I know they've seen them before although I don't think they've had a go on one - when their cousin who is one year older than them came for a sleep over - he brought his favourite Christmas present - a new DS. Kit was fascinated and when he finally got to have a turn - the concentration on his face was scary - yep - we won't be rushing out to buy him the real thing.
The twins didn't let not actually having a DS of their own stop them - Kit made one of lego blocks and Hannah improvised with a plastic blue computer she got as part of a little pony set for Christmas. I love that about them!

Rain

It's raining here today - heavy set in rain. It started on Christmas Day - after lunch thank goodness!! We had all of DHs family here (except our newest edition - who is still in newborn special care as she was born at 32 weeks - she is divine and doing great - and with us all in spirit). It was great to have my Dad here as part of the clan too. The brats behaved better than usual in church which was a great gift for me - I worry about how they are going to go at school next year - theya re going to a catholic school - and church is part of it all. Kit was way better than Hannah but at least she was quiet!!

We then had my sister's inlaws for lunch on Boxing Day - not sure what I was thinking when I made that offer!!! and it was raining so we had to set up in the lounge room - still it went well and I got to spend time with my sister (down from Brisvegas) and her SIL has an 8month old - so I enjoyed seeing and playing with him. My sister then left my nephew here for a sleepover - which meant that Kit was in 7th heaven. D is one year older - lots of Ben 10 games and boy wrestling etc...

Hannah has been playing with her new dollhouse - it is just beautiful - I hope she has it as a keepsake from her Pop for a long time.

We are thinking of taking the brats to the movies today - to get them out of the house on this wet wet day... maybe to see ALvin and the Chipmunks.

Party Frocks

Hannah is enjoying the goreous dolls house that her Pop made for her, the dancing dolly Santa brought and the party frocks...

The Wiggles

Yesterday we visited some frineds of ours (happy birthday Hugo!) and then in the afternoon we wiggled. It was great - I love it as much as the kids! I wonder if I'll still be able to go when they are 'too old'? At least I know my girlfriend will still come with me! She and I had a ball - oh and so did the kids and the menfolk...



Dorothy is still Hannah's favourite - and the song Rock a Bye Your Bear. Kit liked Fruit Salad the best.

Peek a Boo

Cate requested 'shoes' - they are here:

http://mainstreammusings.blogspot.com/2009/12/shoes.html

(Lots of better ones to follow as they are also defaulting as her 'what to wear instead of sandshoes with my pretty Christmas frock shoes?'!)

normal

Long Day Care End of Year Social


Having a picnic on her 'spoilt' day - after her seizure scared the life out of us!!
EI Party
Her ball skills were actually better than this photo implies - she loved this activity.
The ice cream was a big hit

From Dictionary.com

nor⋅mal  /ˈnɔrməl/ Show Spelled Pronunciation [nawr-muhl] Show IPA
Use normal in a Sentence
See web results for normal
See images of normal
–adjective 1. conforming to the standard or the common type; usual; not abnormal; regular; natural.
2. serving to establish a standard.
3. Psychology. a. approximately average in any psychological trait, as intelligence, personality, or emotional adjustment.
b. free from any mental disorder; sane.

4. Biology, Medicine/Medical. a. free from any infection or other form of disease or malformation, or from experimental therapy or manipulation.
b. of natural occurrence.



Maybe I'm putting way too much empahsis on this one but really - I can't remember the last time a medical professional used this word to apply to my beautiful hannah - but it happened today (thank you God) with the pead who organised Hannah's EEG (brain activity scan in lay terms). Sure (so I'm not misleading you) she also said that trisomy 21 can mean that the brain is not wired as you'd expect and therefore events like Hannah having a seizure need to be understood in that context - still she also said - 'her results from the test were normal'. Such a beautiful word 'normal' and as I start my holidays it inspires me to post all the usual Christmas celebrations that have been occurring - usual yet unusual also in that they are all 'final' celebrations - farewelling childcare, preschool,and EI.

EEG

Well the EEG went well this morning. The traffic across twon is terrible at the moment - everyone is out and about in the lead up to work and there is a bis strike today as well. So we left home in plenty of time - and got to have a smoothie beforehand. Hannah was a little unsure but otherwise very compliant thank goodness. She read Hairy MacLary and Where is the Green Sheep? blew bubbles and a pinwheel and played with a slinky - all of which managed to keep her sitting still (sort of!) on my lap for 20 mins or so. She got to keep a bottle of bubbles too. She was chatty and happy sitting there even throught he light which I have to say annoyed me a bit - it was very strong and flickered sharply at different parts of the test. I could see the brain waves on the screen but have no idea what they mean of course. Results should come thorugh this afternoon or Monday - so fingers crossed on that one.

On the way home we picked up Hannah's new school shoes - black mary janes - they look adorable on her.

Sad

There are so many things I could write about - and photoes I'd love to post but for tonight all I can think about is Hannah - in hospital tonight for observation and tests after she had a seizure this afternoon. She had a brief one (her first) in Jan aged 4 and now today - for about 30 secs - it was otherwise an ordinary day. I feel so helpless. Down Syndrome is fine - but seizures? To see her 'lose it', to worry that I'm not there should it happen again. One of the Mum's I know from Han's preschool has a daughter who has seizures - she wears a helmet. Tonight I wonder how on earth can she bear to let her go? I so don't want this for Hannah. She is going so well - this is not a setback I feel able to deal with at the moment. If you are of a praying bent please do so for my gorgeous girl. I hate this part of being a parent. The vulnerability. The all too fragile peace of life.

It's midnight here - and the hospital are sendingher home - hope she and DH can get a taxi!! We have to arrange an EEG - they think there may be an underlying condition - hoepfully the EEG will show it up.

Christmas concerts and hearts

Yesterday I took Han to see her gorgeous cardiac pediatrician. This man will always have a special place in the heart of our family. I first saw him when I was 22 weeks pregnant - and terrified. He was calm, reassuring and gentle and DH and I liked him immediately. Today he gave Han a clear bill - there is still a small mitral valve leak but as he repeated a few times it was a 'beautiful repair'.

That heart that keeps her on the go, the reason we can still have this gorgeous girl in our lives was on display today. I had to take her to work with me after the drs appointment (cos I had to leave work early as it was for the brat's preschool concert!) so with trepidation I took er with me to a meeting. Now I generally don't work on the days we have most of our meetings so if someone (and many have) been employed with us since 2004 - I probably don't know them - especially if they are in a different faculty. Anyhoo - one person I don't know was staring (or glaring?) at us for quite some time which was disconcerting!! I had Han on my lap drawing (I didn't have a key role in the meeting or anything). A 'young' man (30s!) was sitting next to me and after a few minutes he asked a little awkwardly "Is she Down Syndrome?" I affirmed his diagnosis - and the smile - Lordy! Turns out he has a sister (now mid 20s) who used to look 'just like Hannah'. He asked about her heart - yes he was clearly 'from the community' so to speak and he proceeded when he could to engage Han's attention - she just took to him - his ease was obvious and soon she was giggling and teasing him back - as he and I also kept an ear on the meeting and contributed as necessary (not much). I wonder if anyone complained? Oh well - it's called being 'family friendly' - not ideal but manageable. She wasn't disrupting everyone or being loud. I did however leave the meeting as early as I could.

Then we went to preschool for the twin's concert. It was wonderful. The teachers had done a great job - the kids sang and danced beautifully. Some of the parents had a tear in their eye - these kids have grown up so much. Hannah participated beautifully and was of course so cute. Today is their last day there - another door closes.

Closing the door on EI

Learning to walk with a weighted trolley from EI
As this year ends I would like to write a special thank you to Hannah's EI team. It is the end of our family’s involvement in EI. We have learned so much and will forever feel grateful for the role they played in our family life.

In Oct 2004 I gave birth to twins. Within a couple of days we knew that the little girl, Hannah had Down Syndrome. We left the hospital after a couple of weeks in the special care nursery and had our first meeting with the then area coordinator and the physiotherapist. They came to our house and explained to us just what early intervention was all about. We knew that Hannah would be having heart surgery to repair an AVSD before Christmas. They were wonderful. They made a point of mentioning that there were other EI providers around and for us to let them know later whether we wanted to go with their service model - family focussed and transdisciplinary.

We rang the other main provider but in the end we had met this team and liked what we saw and heard so I rang to confirm our membership of the cooperative. The PT visited us with some tips on how to best carry Hannah and get her lifting up her head things like giving her tummy time to build up her muscles and the speechie asked about feeding issues. We were on the road to early intervention.

The surgery happened as planned and after some worries we brought both babies home from Westmead children’s hospital. It was the long school break and in early Jan I got a call from the PT to see how we were doing and if there was anything she could help with. It was wonderful to know just how caring this EI team were. We arranged a time for her to see Hannah when the new term began.

For that first year Hannah had home visits where we’d look forward to seeing what on earth the PT would bring out of her little car into our house. We lived in a small workers cottage and she would arrive with a variety of toys and other things (like an old tyre). She was fantastic at looking around our house for things that could be used and obsessed with beads and sensory play.

As Hannah was bigger now we also started to go to ‘group’ in the EI classroom. Being family centred I took the twins and my MIL with me – it was so much fun!! There the PT ran a ‘group’ with the speech and occupational therapists. We sang ‘Guess who’s hiding down in the box...’ as each child got to’ lift the lid’ on frog in a box so many times but I still love it!! We read Dear Zoo again so many times I was hearing it in my sleep. We signed and smiled and encouraged and watched the kids grow and blossom. Hannah was in group with two other kids with special needs. They were an awesome trio – well matched and complementary to each other – and we parents all got along well too. It really was fun.

The organisation also ran a short course called ‘After the diagnosis’ with a social worker – I went and along with other parents we discussed our experiences and particular concerns related to having a child with special needs. The following year they ran a Hanen course which I attended and that too was very worthwhile in building up ideas for facilitating longer and significant communications with Hannah.

We went to some lovely Christmas parties, attended fundraisers and the twins were able to enjoy Music Therapy a couple of times – which Hannah really LOVED. Her first music therapy was very young – in a session with just her and Kit and then a year or so later she was able to participate in a group session based on the Sing and Grow programme.

Informally at group we saw first hand loads of strategies being employed that we too would then go on and copy. If parenting a child with special needs means a post grad in parenting – then our first classes happened here. After group time the kids all work at different ‘stations’ playing games, completing puzzles, learning basic literacy and numeracy, doing craft and other activities – all under the supervision of a speech therapist, occupational therapist, special education teacher, and physical therapist – or a combination of these specialists as well as with their parents – watching, learning and helping.

When it was time to return to work part time I applied to a community childcare centre. Once again the EI team were very helpful and supportive. The PT visited the babies room a couple of times to help give staff some ideas on how to best help support Hannah’s development. When she moved up a room her current teachers also visited to offer some help so that Hannah’s development could be maximised in this inclusive environment.
In our third year of EI Hannah continued in group with the same kids but a change in therapists. She now didn’t see the PT as much and instead was seen by the spec ed teacher and a new speech therapist. Both these women were fantastic and very good at including Kit and using him as a ‘typical’ role model for the other kids – which was important for our family as I wanted him to stay involved as much as possible.

Hannah also began to receive some one on one sessions with alternatively a speech therapist and a special education teacher. These were tricky to build into our day – I had to drive in a different direction from home to drop Kit in at LDC before doubling back past our home to take Hannah to her EI session. Once it was over I had to go back to LDC to drop her off and then hare back, past the EI centre to get to work on time. Arriving just in the nick of time for my first class – I often went straight to the classroom – no time to even call in at the staffroom and check the emails first. It was worth it though. I really appreciated the time given by those staff.

When the twins were 4 we felt it was time to enrol them in a mainstream preschool program in order to prepare them for kindy in 2010. Once again an EI teacher attended the planning meeting and then throughout the year a team member also visited the preschool – this was very important as the teacher did not receive any particular support to help her work with Hannah and assist her development appropriate to her special needs. The EI teacher was able to offer her professional advice – teacher to teacher which I know was appreciated.

In our final year at EI Kit and I waved goodbye to Hannah as she began group on a different day with a different group of kids and different staff. She now had 3 therapists there: a spec ed teacher, OT and ST – all quite new to her plus up to 6 other kids also pretty new to her. She loved it. When Kit and I picked her up she was always happy and tried to tell us what she’d been up to. She particularly liked one of the books they read – Mouse Mess.

This year was our most stressful as a family since the heart surgery at the very start. We had psychometric assessments to do and a school to find for the kids for next year. It wasn’t easy – the EI team were there to listen to our experiences and offer support and advice. They held an information evening too that was helpful. The special ed teacher came with us to school meetings – an invaluable support which we will always appreciate.

At the same time it was obvious that Hannah required some individual therapy sessions. Our family arranged some private ST sessions as these were our priority and once again EI managed tight resources and time constraints to provide fortnightly therapy sessions with an OT and Spec ed teacher. All of which helped to consolidate Hannah’s learning and also provided me with some modelled ideas on how to further work with Hannah.

So now we are approaching our last weeks with this EI team. It is no wonder that I feel both sad and happy. It is wonderful to see just how far Hannah (and her family) have come from those very early days. She LOVES the idea of school and learning thanks largely to her positive experiences at EI. It is also a bit scary to be ‘going it alone’ as we have felt that in learning to advocate for our daughter – the EI team has been there to support and guide us.

We wish everyone in the EI team all the very best for the future and wish to let them know that we really benefitted as a family from your work and efforts in ways that will be felt and seen in our home and hopefully in the twin’s school journey for years to come. Thank you very much – God bless. In fact I have rejoined the cooperative in order to access School Aged Services – the next step on our family’s journey has begun.

Maintenance

Things are going well in the DOck although I do get the feeling that I am about to be overwhelmed by everything I'd like to get done in the mad rush before Christmas. Some progress was made today - haircuts for both brats (mine is booked in for after my next pay - so overdue I can't wait - am missing the work Christmas do just so I can get it done). Swimming booked for next year - the waiting list for the special needs lessons is very long but I managed to get the supervisor to agree to cap the class Han is in to 3 kids and she has been placed witha 'strong' instructor. There were vacancies for a 3day holiday special needs lesson (which means one on one instruction for half an hour) so I booked her in for one of those. Music fees for next year are also waiting to be paid by Friday.

I have a few things I want to get done and drop in at the school for next year as well as try and arrange to take some photoes so that I can put together a social story about school for the twins to read over the break.

Work hours are still too long for my liking but at least not too demanding. Christmas get togethers are really starting to pick up speed. We had a lovely lunch with a family who live down the road from us (their 6yo has DS) which was a lovely start to the holiday season. Hannah then had a christmas party at Rainbow CLub - swimschool for children with special needs that she goes to each week with her father ('not Mummy, not Kit. Hannah. Daddy' as she says every week when we asak her where she is going on Sat afternoon). She got a lovely beach bag and a star medal - very cute.

IDPwD - Taronga Zoo

Baby Luk Chai was out and about which the kids liked and it seems the giraffes are real party animals as they were still out being fed as we were leaving. The star trek dress ups were pretty cool too.





We got tickets to this fantastic worldwide event thorugh NSW DSA - dreamnight at the zoo - the staff and vollies were all so cheery and welcoming - there was a great atmosphere as all the families wandered around the many great events that were on to entertain the VIP guests - one of which was our Hannah!

She was keen to see the monkeys and have her face painted. At the face painting stand we tried to convince her to choose a simpler pic but to no avail - so there was one lady there who we were told to go to for Hannah's monkey request - I think she did a good job and Hannah was very impressed.

We saw the bird show which was just fantastic - I hadn't seen it before - against the backdrop of Sydney Harbour we saw some very well trained birds strut their stuff. Hannah loved it. As part of the show they had a member of the audience hold out a gold coin - and a galah flew up to her, landed on her arm and took the coin in its beak. Hannah LOVED it - soon she was standing out holding out her arm/finger too - hoping a bird would land on it. It was an honest bird so when the lady held out her arm again - it flew back and returned the coin. They also had a condor - just like in the Dora Goes to School book that Hannah loves but I didn't get a photo of it because it was so fast and my little camera so slow.

We met up with friends of ours and wandered around some more. Hannah was thrilled to see Dorothy the dinosaur there - and Captain Feathersword too. Eventually it was well and truly time to go home - 8.30 is very late for little kids after a full day at preschool and all the excitement of the zoo. As we were leaving the brats got the most amazing and best value show bag I've ever seen!!! It kept them awake all the way home (although Han was happy to play with her light sabre and open her loot this morning).

I also printed off some photoes this morning which the kids were very happy to keep looking at - they had a great time. I'll have to try and find a moment to write a thank you to the zoo and DSA NSW - it was lovely to go to that sort of event during the hurly burl of the Christmas preparations etc - it was like a little breath of fresh air in the family.

Plan Ready for 2010

Today's meeting went well. It took about 2 hours. I then had to do a mad dash to get Hannah over the other side of town to the opthamologist - a feat we achieved (just).

At the meeting the EI teacher and I outlined what Han is up to - her strengths as well as some of her weaker areas. The teachers asked questions. We set goals for Hannah - things like - she will be able to write 'Han', recognise the symbols for 1-5, use visual supports in class setting,etc

We discussed strategies for explaining to the other kids, their parents and teachers.
We discussed expectations for Hannah - eg sitting in a group for extended periods of time - and discussed how to deal with difficulties that she may have. I gave the school a copy of 'common makaton' signs for the classroom.

I was very impressed and relieved with how the meeting went - walked out totally agreeing with our EI teacher who said "I think you've made the right choice". Yes I think so too. I know it won't be easy - but it is possible and it might be fun!

As the meeting ended - I gave them my copy of Win-Win Advice for the Inclusive Classroom to read - I had stuck in a photo of Hannah in her school uniform - it made them smile. I hope they find it helpful and inspiring too.

School meeting

Planning meeting tomorrow - have to confess I'm feeling quite nervous. Hope it works out ok. Hope i manage to sleep - I tend to sleep badly when I feel like this...

Christmas

The tree went up at our place this weekend - the beginning of advent. Now if only the pile of marking was done - I could get to the Christmas cake and pudding I still have to make!!
Neither child was particularly compliant when I tried to get their photo in front of the tree - will have to keep trying I guess.
Han's OT has been playing a game where Han has to push against her hands and knock her down - a way of helping upper body strength - Hannah loves it - the other morning she and Kit played their own version of it.

So you think you can
Stare at it. Glare at it.
It won't work.

Maybe you could
confront it. Confuse it.
It just won't move.

Develop a radical plan and
embrace it. Try to save it.
No not like that.

The answer is to
love it. Enjoy it.
What else should you do?

There is no point to
refuse it. Deny it.
Lose no more sleep over it.

Lower your gaze
Look there the beauty's undisguised
Wonder like crystals
Patiently waiting
for your heart to crack.
Open. At last.
Love pure.


The light in here seems sadly bright
Look! Look at these new soft shoes.
He shades his eyes with purple lashes.

She pulls upon the curtain sashes.
Where to hang their masterpiece?
The drapes they swish in the breeze.

At night when all is gone there's ease
And maybe a shimmer of joie de vivre
Place pride up high upon her hook.

We see our daughter's unique look
Her brother loves that look too yet
For him rainbows and rulers must do.

Pride

Isn't that a gorgeous painting? It was done by my niece - she is 17. It is from an old photo of her grandparents. She has lived with her grieving mother this past year - it can't have been easy. She has lost her Nana. I think she did a beautiful job. It brought atear to her Grandpa's eyes apparently. I'm not surprised - she nailed Mum's eyes. That's the window of the soul isn't it? A beautiful tribute. A gift for us all. Thanks Milly.

Play School

The twins really enjoyed playing schools the other night. They decided it was time to teach their students how to swim...Hannah shows her class how to blow bubbles under water.
Team teaching (Kit had started by saying he was the principal and Han the class teacher - but once he saw how much fun she was having as teacher he changed his mind)
The students need the right gear!
Giving Astroboy some hand over hand modelling - a strategy she knows well!
(Hannah addressing the whole class)
Who's that hanging out the window?
It's been hideously hot here for the past few days. We have had a very long period of drought and the water restrictions that accompany it. Lucky for the twins ther restrictions have only just been lifted in Sydney so while I am still conscious of not wasting this precious resource I was able to use a fancy sprinkler I bought about 10 years ago fo rhte first time! I didn't take any pics I'm sorry (Iwas srping cleaning their bedroom)- next time - but the twins did what countless generations before them have done and played in their swimmers under the spray of water. They also consumed an iordinate number of iceblacks to get through!

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 have 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.
I