Tomorrow better be good!

Well it is now 5 visits to various drs in 6 days - and I am on a roll. Poor it ahs a horrible fever. he is lethargic and feverish. It breaks my heart - he is my big strong confident little man and I HATE it when he is so sick. Given our early medical experiences I know that DH and I still tend to overreact - come on! Han hd heart surty at 2 months with some nasty post op complications that nearly cost her her life and then on the day we were meant to leave the hospital Kit had a raging temerature - a lumber puncture was taken and - yep - he had menengitis. So when I see him now all flushed and fighting the fever I can't pretend to be rational. Anyways our GP is great and he was very careful in examining Kit - so even though it is scary to watch him I am hopeful taht if he gets a good nights sleep he will soon bounce back into being the very loud and demanding little boy that we all know and love. Visiting my SIL tomorrow with him is pretty mucha decided 'NO' cos she starts chemo next week and I don't want to risk him passing on any germs to her or her family. So movie day in the Dock tomorrow I guess.

Week from hell

Well life has been horrendous here this week. Monday is always my busy day at work and this week was no exception - then I had to take Hannah to our GP cos her ear was oozing. Tuesday we have swimming and then music and then after a hurried lunch I dropped Kit at my inlaws and took Hannah over to meet the 'sleep dr'. He was actually very nice - asked various questions commented on how wonderful Hannah is (a sure way to win my approval) and now I am waiting on the paperwork for her to have a sleep study done in August. He also gave her a nasal spray which in some cases has been found to shrink adenoids. A couple of the things he asked about were of interest - Hannah is often sweaty while she is sleeping - he asked this - and I said 'yes' but we had always thought it was because she sleeps in the corner of the room farthest from the door (unlike Kit in the doorway). He also talked about needing to stop her need to breath through her mouth so much and seemed to think that her impossibly green nose throughout winter might be affected by her having a high roof - which leaves less space for her nasal passages/cavity.
On Wednesday I dropped Hannah at EI and Kit and I went to get her script for the nose spray filled before racing around the local supermarket getting some groceries. A quick lunch and once again I took Kit over to his grandfather while Hannah and I went to see the pediatric dermatoligist about her psoriasis - which by the way - is going along nicely although it is not totally cleared yet. Got a call from a woman in charge of a transition program for 9yrs+ students with mild-moderate intellectual disability that has a great reputation and is near here- it is at a posh religious (not Catholic) school - $2000 enrollment application and $1200 upwards for each year of education. It is not the sort of school that would ever interest me (although as I said the transition program has a great rep) but anyways due to a letter I had published [it's on my other blog Mainstream Musings] she was ringing to tell me about their great program - annoyed me (to put it mildly) by making it clear that Han was only welcome when that program started - not for the 4 years before hand - oh no - their mainstream school only wants the kids that can virtually teach themselves then - a very traditional program where apparently the kids are meant to be able to read and write BEFORE starting school. She recommended I come and have a look at their program for later - a 'light at the end of the tunnel' she said - no thanks. I didnt' say that to her obviously but I was annoyed that they were so clearly not interested in true inclusive education from kindy up. Home in time for dinner. Did I mention that I have also been sitting up each night until midnight (at least) to mark major research assignments of my students?
Then on Thursday I dropped the twins at preschool, worked all day, called in at the GPs office cos I needed a script for Hannah's ear infection which just hasn't been getting better and then sat up late marking again. Kit got another invite to a boys party and I know it is silly but it is the second one which hasn't included Hannah. Her little friend's (with DS) Mum has invited both the twins to her party but in the 'regular' school environment I know that that will change - it is just I am not quite ready for it yet - Kit finds it a bit confusing too. I have to confess that I almost resent his wonderful and beautiful nature cos it is just so unfair - I know it isn't his fault but still on a really dark day i worry that I 'take it out on him' for want of a better way of saying it. I wonder how other parents go - or am I a total freak who occassionally looks at my son - and thinks "Mate you have it so much easier than your sister" or when I go to ask him how his day was and I know I'll get a very articulate response or when I open his preschool bag to see his work I know that it will be just amazing and then I go to Hannah's bag and she is wonderful and amazing too - but so far behind her brother and she still has no special friends while he is (according to one Mum) 'the only boy who plays with the girls too". So yes I am absolutely busting with pride in him but there is that little bit of me that on a bad day I worry about. I usually vent with things like "I do all this planning for Hannah and then you know, she is fine - Kit is the one who hangs back" Kit is a beautiful little boy just because of who he is and also because he has Hannah as a twin. He is a bright little boy and I worry that no matter how hard I try to conceal these irrational feelings from him - he picks them up - and I don't want him to - cos it ISN't his responsibility. He is an absolutley gorgeous little boy who I am so lucy t have. I hate the days I feel like that.
Tonight has been fairly quiet and pleasant as it is Friday. I hope next week will be better however will have to wait and see. Monday will be from busy cos all my marks for the semester are due and the system is struggling to cope with the volume of courses and students on it. Tuesday Hannah is having her first formal assessment - a psychometric one for school next year, my SIL is starting treatment for breast cancer and on Thursday the principal of the primary school I really want Hannah and Kit to go to will be visiting the preschool to monitor how she goes...maybe I should just pin my hopes on the week after that being more pleasant - it begins with Dad coming back to stay with us for a week which will be great...
Can't think of any more to whinge about - will think about how I feel about the psychometric test and post on Mainstream Musings sometime - it is my separate place dedicated to the horror that is education for children with mild-moderate disabilities in NSW. Fingers crossed for a good weekend. I'll try and find some more photoes of the twins cos they really are amazing and I am sure that they wll have a wonderful time no matter what we do.

Another conversation with Kit

Kit called my Mum Nin Nin - a variation on the fact that we called our Grandmother Nin.

I am lying on my bed wearing a costume jewellery poodle brooch that I bought when on holidays in Melbourne - the year I was pregnant with th twins. Kit wanders in, lies down next to me and starts to fondle the brooch. He looks at it carefully. Then with his lovely solemn eyes he says:

"Mum, this brooch reminds me of Stella (that is our poodle)."
Yes it reminds me of her too sweetie.
"It reminds me of Nin Nin too."
(Now at this I am a bit perplexed - I think Mum might come and haunt me or him for that one so I ask Why is that sweetie?"
he thinks a bit and then gives the reply that I know Nin Nin would have just loved:
"Cos she liked sparkly things dind't she Mummy?"
Yes she did sweetie, yes she did. I say witha big smile.

My Mum sure loved sparkly things. Especially her beautiful diamond cluster ring that she was so proud of and that I wear almost every day. Yes she would have loved to hear that chat. I hope she did.

The twins are computer obsessed - we are thinking we need to institute a rule as to how long (maximum) they can spend on it each day - any suggestions I have no idea! Any figure seems rather arbitrary really. I still geta kick out of watching Han on it - she was so keen to be able to use it - and her mouse skills have improved out of sight. She loves our Piglet game. Just recently I got them Green Eggs and Ham and they have found Dora on Nick Jr - both a big success.
Dad was here for the weekend which was lovely. He is looking well and obviously enjoying his promotion at work. Little brat has another ear infection - tomorrow is my very busy day at work plus I have to administer assessment exams to 2 classes so I am hoping her night is ok and I will try and get her to our GP in the afternoon. She has an appointment wth the sleep dr and the dermatoligist dr this week - so she isn't the most popular twin in the house at the moment!
We have all hada good weekend though. On Sat the brats and I went for a walk to our local library with our friends from around the corner - after which we had lunch in a cafe before said friends kindly entertained the twins so I could duck home and get a bit of marking done. Han did well at swimming - DH took her and was mighty impressed to see how she has improved - the little bugger is fearless and was keen to jump into the dive pool off the blocks. Today Dad and I went to mass and then we all went to a local shopping centre for some yum cha.
My SL has just had a diagnosis of breast cancer - so I am hoping to be able to visit her next weekend. it has upset everyone naturally - and we haven't wanted to be too intrusive but at the same time we need to be able to offer our support especially once treatment starts which probably won't be too far away.

Stuff

Life in the Dock has been pretty quiet outside of a little bad news all is ok. Kit had his interview for kindy next year - it went well. Hannah has her psychometric assessment and her funcitonal assessment at preschool in the start of June so I will be glad when they are done. They had their first separate birthday party invite arrive recently - so Kit went to his friend's party with his dad and Hannah and I played together. It had to happen. Lucky she was fine with it - she would have loved the party but together we had lots of fun so that was all fine. My goddaughter also turned 2 recently. Her party was lovley - at a local park. She is a cheeky and gorgeous little girl.

Love

Yesterday I went on a school excursion to court. One of the cases we observed was a criminal one with a jury. We got to see the end of it - the accused being examined and then cross examined. He has been accused of sexually molestng young teenage boys. The alleged offences were from 20 years ago or so. Anyhow - the part that has been on my mind. Haunting me and making me a little melancholy was the second (the accused being the first) and final witness called by the defence. She was a stout and shortish woman. She had lank cropped silver grey hair and used a cane. Her face was careworn but I thought it had a beauty in in too. She was dressed in cheap comfortable clothes and carried a holdall bag patterened with a patchwork design - like many a country granny might. Occassionally she cast a warm gaze over to her husband as he sat in the dock. At the end of her evidence she looked over towards him as she left the court room with warm brown eyes and nodded. It nearly broke my heart.

I have no idea whether he is guilty or not (although based on the little I saw I wouldn't be surprised if he is convicted next week when the jury have to meet to deliberate). What I found remarkable was her testimony. She had not heard any of the other witnesses obviously. She hadn't heard his evidence either - and some of her answers sounded as if they were clearly trying to protect him even while they contradicted parts of his own testimony.

The students were totally wrapt in the real life drama - they were staring at him wondering if he was guilty or not, wondering what it would be like to be one of the twelve jurors in the matter. I was transfixed by her. What was her story I wondered? How must she feel? Her world was clearly upside down and must have been for the past 2 years since he was arrested. He had been remanded in custody from the looks of it.

As we were leaving she exited the building too. She shuffled out in front of us through the roundabout doors. She seemed strong and proud and broken all at once. And she was alone. I was about to head off for a little shop - you know a treat because I was on excursion - I bought some lovley winter stockings and some bubble bath and a scented candle for the home. Lovely. Where was she going to I wondered. It was such a marked contrast to my life - and yet she must have been doing things just like me once - before all this. Surely she needed to have someone there to help her? Someone she trusts to offer her support. They had children - 3 I think - where were they in all of this? I prayed to God that there was someone to make her a cup of tea and smile for her. She struck me as brave and perhaps stupid but oh so vulnerable.

Next week if he is found guilty - what happens to her? Will she get to read the court transcripts to at least help her understand what transpired there? Will the defence lawyers offer her some support or direct her to couselling? I don't know but I hope so. I guess for her it may not matter anyway - she had that fatalistic air of 'S**t happens in life and you just deal with it'. I suppose she needs it too.

Pink Ribbon Day

When someone you love is diagnosed with breast cancer - it puts a different spin on all those fundraising initiatives sporting the distinctive pink. It's time I bought more pink.

First Love

Today – a very serious and considered conversation with Kit as we were driving home from Hannah's EI:

Kit: I’m going to marry R (Han's BEST friend - a gorgeous 12 yo who lives around the corner and lkes the twins) when I grow up.

Me: That’s nice sweetie.

Kit: Mum, can kids marry other kids?
Me: You get married when you are grown up and find someone you love very much and want to be with forever and ever.


Kit: Well, R and I are going to look at some houses. I think one with 2 bedrooms. Then we might get 1 or 2 babies.
Me: That’s nice sweetie

Kit: Mum, I’ll still visit you. For a sleepover. The first sleep over will be for 3 days, then the next one for 2 days and then for 4 days. But I will visit too.
Me: That’s good sweetie. Cos I’ll miss you. You can ring me too.

Kit: Yes and email you.

Kit: Mum I wonder who S (R's 10yo brother - my godson) will marry since I am going to marry R.
Me: I don’t know

Kit: How old is R?
Me: She’s 12.

Kit: Why?
Me: Because she was born 12 years ago.
Kit: Is her birthday before mine?
Me: R’s birthday is in December.
Kit: Is that before or after October?
Me: After. Are you going to buy her a nice present?
Kit: Yes…. I will buy R a George toy.
You know - Curious George. R and hannah bonded over him LONG ago - and here is my favourite song:

Who's to say
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There's no stopping curiosity

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away

Who's to say
I can't do everything
Well I can try
And as I roll along I begin to find
Things aren't always just what they seem

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
This world keeps spinning and there's no time to waste
Well it all keeps spinning spinning round and round and

Upside down
Who's to say what's impossible and can't be found
I don't want this feeling to go away

Please don't go away
Please don't go away
Please don't go away
Is this how it's supposed to be
Is this how it's supposed to be



Look out R! (At least he has good taste in girlfriends)

And here is his Dad's respons (thank goodness - I was woried he'd be heading out to get a shotgun!) "Arranging R's dowry. 2 bed house big ask but will try. should be ok for 2020."

Another part of the puzz;e...

So the brats attend a preschool attached to school 3 for 2 days a week. I can't pick them up from preschool so the inlaws do. In term 3 they are going OS for 6 weeks - DH is planning to leave work early one day a week - and the other I had hoped to use the OOSH (after school care) that is next to the preschool - that serves the local primary. Fridays - I hear they often aren't that busy then.

Speaking to the 'coordinator' this afternoon - because Hannah has 'special needs' she needs to be 'externally assessed'. They can assess Kit for themselves. This is to make sure that they will cope in OOSH. - oh and BTW - it can take about 2 and a half months for them to be able to assess her. We need the placement in Term 3 - now I thought that giving them about 10 weeks or more notice would be sufficient but apparently not.

So what's my rave? I'm probably being a bit unfair and irrational - but WTF?? That women came across as officious and supercilious and smug. "The best interests of the child' (as if I have no idea of han's best interests - no hon I work 4 days in 3 for the luxury of it!). Poor Hannah is being looked at like a bug under the microscope this year and it is driving me nuts. Everyone wants her 'assessed first' - no commitment until they've 'assessed' her. Haven't they got eyes in their heads? If it was going to make any difference or improvement to the services Hannah gets I probably wouldn't mind but mostly it means jacks**t. It disguises discrimination and fear and leads to no additional support. It's just hoops to jump through that 'normal' people don't have to.

These extracted quotes from todays conversation don't do much to ease my mind either:
"normal as we call the others" "she is down syndrome" and then the pointless story of the child with special needs who has violent behaviour and the other kids are scared of him - what was the point of that story - does she think Han is violent? Does she mean that my littlies (and I understand they are going to find it a bit overwhelming) are going to be scared there too? It doesn't offer much comfort when if Han goes into an OC class - I'm guessing scary violent 'special needs' kid will be in there!

Anyway being 'different' clearly sux. Then I get home and my poor boy has had a difficult day because he doesn't have a 'special friend' at preschool like at LDC - and two of them ganged up on another one and poor Kit seems to have been siding with the one they ganged up on and obviously found the whole deal confusing and upsetting.

I do feel a bit glad that I virtually threatened that woman with Hannah for next year - with so what happens next year when she is in kindy? I asked - all the while thinking I hope in hell she doesn't have to go to that school if this is how OOSH operates. Her only response was - oh let them know as soon as you can - maybe she was hoping that 'them' would not be 'us' or her oosh.

Again - I know - I am being abit over sensative - and I could view it all differently and more positively but hey - I have been jumping over all sorts of hoops and to no avail - I am NOT in a mood to give people the benefit of the doubt.