Wednesday, August 31, 2011

Montessori Madness!

In which I talk about why Lolly isn't going to school yet.

You might remember such posts as: Lolly starting school.  Well, reports of her school-going were, apparently, greatly exaggerated.

After some ill-health interruptions to starting Cycle 1, we decided to put off her starting full-time until the final term of the year.  Then, after some long hard thought, I decided she (and I) weren't ready, so we're not starting until next year.  As a family, we also have a lot on our plates at the moment, with Snail's seizures, DinnerDad's crazy work...  She was getting some separation anxiety because of all this.  And, in term 1 next year, Lolly will turn 4, and I think 4 is a different ball game to 3.  Lolly loved her visits to the school, and loves the materials and environment.  I've been so impressed with the school and how they've been flexible with us, too.

School stuff!
Turns out this wasn't the first day of school after all!
Honestly, one of the main reasons is that Lolly is my only child, and I'm not ready.  I wanted 6 more months with just her and me.  Hanging out, playgroup, going to museums and galleries, the library, out for lunch, to the shops and the park with friends.  This is the last time I'll have off work, and where she is not at school, well...ever, during her childhood.  I wasn't ready to say goodbye to that.  I think that despite some arguments to the contrary from the Montessori philosophy, neither was she.

So it's not all sunrise/sunset yet round here.  Give it another 6 months....

Tuesday, August 30, 2011

A Miscellany

Things we've been doing that haven't been overshared blogged yet.

Lolly, as I've mentioned, is rather keen on doctoring and, now, dentisting all her toys (and anyone she can get to play this with her).  Here she is in the mask the dentist very kindly gave her, taking her horse toy to the dentist, assisted by Nanna.


Warning, this image contains TMI: here's how we roll at Casa Selene.  We fail to make dinner and get DinnerDad to bring home pizza.  We all eat it in front of the TV. During this picture of family togetherness, Lolly has to "go potty", complete with crust of pizza.  Here she is, snapped in the act, while holding her precious pizza crust above her head to stop the dog stealing it.  Oh, and I didn't get this on camera, but the dog totally got "something to eat" from this deal, and it wasn't pizza.  EWWWWW!!!  This is the kind of quality sharing for which I have this blog.  No need to thank me.

I will photograph anything.
 Playing with her awesome new kitchen.


Lolly took this sweet (blurry) photo of Snail holding a balloon.  Holding balloons is Snail's idea of heaven!  She squishes and squeaks then, and laughs and laughs.  

I got a half hour off while taking Smash to soccer the other week, I had coffee and snacks at a lovely cafe in the city.  It was awesome.  
See how there are no kids here.  Or husbands.  Or people of any kind.  Awesome.

Monday, August 29, 2011

Accessibility FAIL: Dymocks Sydney (George St)

OMG the fail.  Dymocks Sydney is the flagship branch for Dymocks in the heart of Sydney.  Sure, there's a great range of books on their accessible ground floor, but imagine my amazement when I asked where the lift was to get to the equally huge second floor.

"Oh, there's no lift, just the escalators.  If you know what you want, I can get it for you?" said the smiling and oblivious assistant.

Riiiight.  Apparently people don't need to look at the books, or go to the cafe upstairs.  Or browse.
[Image credit] Here is the upstairs cafe, being enjoyed only by the able bodied.
The ultimate irony is that the second floor is where all the non-fiction is.  So yeah, the books about disability.  Oh, and the children's books (you can't really get a stroller up, either). 

A disclaimer, I didn't have the wheelchair this trip.  I reckon it still counts, though.  I did have a kid asleep in her stroller, and was unable to get the stroller up the escalator.  So Accessibility FAIL.  

Sunday, August 28, 2011

It's all good

Sometimes you get a bonus from having a kid in a wheelchair.  Here is one.  When everyone is boarding a plane, and you're at the end of a long line, with a three year old, and they don't call for kids to board first, it's all good, because at least you don't have to load the wheelchair and get someone to carry Snail in, too.

There's a point where quite inconvenient things still feel easy and smooth if you don't have to take a wheelchair and someone who can't really walk.

Of course, you feel guilty, somehow, for it being easier, or for appreciating that it is easier, but hey, smoke 'em if you got 'em.

So it's all good, right?

We missed Snail this trip.  She would have loved the swimming.

Dragon eats fries while waiting for the plane in Sydney.

Saturday, August 27, 2011

The Big City

People in the middle of Sydney are very grey and busy. They all look preoccuppied and shitty.  They talk on phones or have headphones on, or yell busily to each other as they walk together, rushing from place to place.  They all wear black or grey.  No one looks happy.  There are very few children, and those that are there look sad and stressed in their strollers, often crying.  Those children can tell the city doesn't want them.  The city is not for them.  Or for their carers. No one watches out for you as you push your kid around, dodging the angry, busy strides, and the cigarettes held at child eye level.  No one clears the way for you at the curb, or lets you walk your sleeping child in the small patches of shade on the dirty black footpaths.  The shops have steps, or ramps that have big gaps down to the pavement, you can't go in here, these entrances say.  It is loud, and smells bad.  The city is unfriendly and sad.

I like cities, but have always found Sydney to be an alienating and sad place, especially in the inner city.  There aren't many shared smiles, or polite nods.  There is no space made for you if you don't fit the pattern of what the city declares itself to be for: for work, for business, for rushed transactions in inconvenient spaces, for adults, for walkers, for those with money, earning money, and spending money.  If you can't keep up, then you don't belong there: a sharp lesson in survival of the fittest.

The sociologist part of me wonders what on earth we do this for, this crazy 9-5 structure of working days, so far from family and friends, so isolated, a veneer of pointless activity over boredom and repetition, or futility, or even over satisfying or productive effort, but at what cost?  Do we really need to be working like this?  As a society, what do we do it all for?  Can't we come up with something better, or at least more forgiving and flexible, that allows us all to survive, and thrive, as well as making sure our society turns the right cogs and cranks and keeps it all chugging away?  Why isn't our work shorter, more flexible, in more beautiful and meaningful spaces?  Why is there no shared community, or local cooperative industry, or sharing of labour and expertise in ways that don't take us away from everything we actually would like to be doing, be close to, and see grow up?

What I mean, in short, is seriously, WTF?

I really wonder why I would hope and dream for my daughter to take her place in all this mess of horrid activity.  What will it give her?  Why would I wish for so many of her hours and her life to be given in service to such a system?  What does it mean for us, that our spoken values of family and love and community are so very far from what we force people to do all day in order to ostensibly fulfil those lofty goals?

That's what the city, and my husband's demanding and long-hour-ed job, makes me think while "strolling" the streets of Sydney.

Sarcasm and cute pictures will resume tomorrow.

Friday, August 26, 2011

In which Lolly goes swimming.

We stayed at Quay West suites in Sydney, which has a speccy pool on the top floor, well, two pools.  Seriously ritzy.  This is the view from one side.  A bit nice, really.

I mean, check this place out!  Just out of shot on the left is the spa. There's also a massive window there on the right that you look out of from the water, across the harbour.


Here is Lolly and DinnerDad, Lolly has this float-y red ring that fits her perfectly.  During the time we were there, she went from bumbling about with me hanging on to her (and not allowed to let go!), to swimming around herself from one end to the other, with a combo of kicking stylings.  Not without her red ring of swimming power, though.  Her one effort without it resulting in much sinking and spluttering.


The pool on one side had a panel you can see through, DinnerDad snapped this one of Lolly and I.

We were only there three nights, and went swimming four times.  Lolly is VERY keen on it. She loved swimming, and playing games (pretending to be a turtle and so on).  It was pretty lovely.  And just the right close-to-home low key fun we needed on a happy but really pretty sad trip.

The cute!! It burns!


Thursday, August 25, 2011

Sydney-side

We took a last-minute trip to Sydney this week, to see my Grandmother, who is pretty sick.  She has congestive heart failure, it pretty much sucks.  She's been in and out of hospital, and refused with her usual iron will to go to a respite place or hospice.  She's 90, and sticking to her unit (which is in the same street as the house she lived all of her life in Sydney, just a few doors down).  She migrated out here with her husband and boys (my natural father is her oldest son) from England when they were very small.  She's pretty cool, she had active service in the war (overseas postings), and played tennis all her life, up til a couple of years ago.  You know, at 88.

Here is the only photo I though to take while there.  Now kicking self.  I know, right!  It's crappy, blurry, flared, and Lolly and I aren't even in it.  Pissed off with myself.

My Uncle (standing) was SO thrilled when I reminded him he is Lolly's GREAT uncle.
As always with a three year old, I couldn't do much wallowing, or much visiting with people who don't live in a playground, so we did tourist-y things the rest of the time.  Lolly loves Sydney, she's been a few times now, the first time she was only 8 months or so.  The most recent, March this year.  The city isn't really friendly, or conducive to small kids, but if you know where to go there are fun things.  We laid pretty low this trip, though.  Swam at the hotel pool a lot (post to follow!).

Seasoned traveller sits with Daddy.
We were only a couple blocks from the Harbour, which is a great place to go walking with kids.  Plus coffee and icecream.  No coffee for smalls.  Just me.

Not pictured: my panic attack at Lolly leaning over the back to look at the water.  Can you spell NO FRIGGIN FENCE.
 We had buffet breakfast every day.  Which is pretty much my idea of paradise. 

Greeny the crocodile was hungry.

Lolly had FOUR of these mini-tomato juices one morning.  I think they regretted not charging for her breakfast.

Coffee and green macaroons at the Guilan cafe on the Harbour.  And chocolates, of course!

Running races with seagulls and random kids out the front of the Museum of Contemporary Art, Sydney Harbour.
DinnerDad had work stuff, so we got a very nice room.  It was so enormous it had a separate bedroom.  Pretty much made of awesome.  Here's the view.


Separate bedroom!!11!!
Other than this quiet fun, we laid low, and spent time with family.  Special thanks to my Grandma, my Aunt Sue and cousins Crystal and Alicia, and my Uncle David and his wife Janelle, you all rock and I wish we saw each other more often.

Wednesday, August 24, 2011

When Lolly gets the iPhone, Part the Second

We've been in Sydney for a few days unexpectedly, photos and commentary to come.  In the meantime, here are some shots from Lolly, who has gone photo crazy.  I love the things she finds interesting.

What a suprise: Pippin!

A bit of Pippin, and Snail's wheelchair, and a bit of Snail!

My shoe, viewed through the trampoline mat.

Coals from our firepit.

Big moon!
Shitty cat is shitty. And possibly plotting to kill you.

Saturday, August 20, 2011

Hitching a Ride

Sometimes, when Lolly gets her tired on, she hitches a ride with her sister.  It's pretty much the cutest.  Excuse the blur!


I love how Snail holds her so tightly, still with the responsiblity of keeping her from falling.  It's pretty beautiful. 

Friday, August 19, 2011

Help a gal out, bloggy friends! Stepparenting dilemmas, Part the First.

Nah, not help me out with money, with opinions.  Coz everyone can spare an opinion, right?  Of course, to render a sage opinion, you'll need to read a bunch of ramblin'.  Onwards:

We have some appointments coming up for Snail: like her first appointment with a new neurologist; like her appoinment to trial a buggy-type tilt-in-space chair; like her intake appointment for the CP Health unit that does gait assessment and orthotics fitting, and so on...

I've researched and organised all these appointments, and some of them we wouldn't even be doing other than for research I've done lately, and they all involve a LOT of running around, admin, referrals, forms, phone calls, nagging, and so on.

Here's my thing:  Should I go to these appointments? 

Okay, okay, this sounds like a no-brainer, I know, except for the teensy-tiny fact that Snail isn't my natural daughter.  And the slightly larger and more relevant point that I don't get on with her bio-mother (or rather, her bio-mother doesn't get on with me).

I'm not really going to go into the whole thing at length, well, okay, at SOME length, but trust me, this is the Readers Digest Condensed version.  I don't like to bitch publicly about it much, and certainly not in writing, because a) she's their mother (and Smash can, astonishingly, read!), and b) I kinda don't want to be reading from my blog in court.  *le sigh*  But, here's the rub, I'm pissed off, and I don't know what to do.  Honestly, this is not a "evil-bio-mum" post.  It sounds like it in places, but I'm really, really trying to be fair about this.  Really.

See!  NOT an arsehole.
Here's some self-aggrandizement about me:  I'm not an arsehole.  I'm cluey about step- / bio- relationships, as I had step parents on both sides growing up and learned what I did and didn't want.  As a step-mum, I was friendly, accomodating, helpful, and unfailingly polite.  I kept to the background.  I didn't call, put myself out there, or go places where I wasn't wanted.  I did favours.  I was helpful and smiling and nice nice nice!!

I understand that it can be extrememly hard as a bio-mum to get your head around the stepmother thing.  Snail's disability just adds an extra juicy layer to the mix.  I spend time thinking about how I would feel if it were my daughter. I try to only act in ways I'd respect from a step-mother of my own daughter in some parallel universe.  I promise, I really, really, really, have tried.  Really. [no, really!]

Sure, this is my blog, and I'm only telling my side of it.  So, subtract a bit of the above awesome to allow for a glowing self-report, and you've still got (I think) plenty of awesome to be going on with.

The problem is this: last time I set eyes on Snail's bio-mother, a couple of months ago, I had to call the police to get her escorted of our property (she was trying very hard to break my door down, while screaming horrible abuse at me, in front of both the girls).  It was seriously awful, and I was really concerned she was going to smash the glass in the door and attack me.  She threatened my daughter (in the "how would you like it if I take your daughter" type of statement.  Repeatedly.)  She has since been threatening DinnerDad with court to not allow me to care for her kids.  We had to see a lawyer to get a letter from DinnerDad saying he had my permission to care for the kids in his custody period after school, and if he is away.  She is abusive to me (and about me), in person, over the phone, and in email and texts (and to Smash about me, which is a whole other ballgame).

I look at all that and just feel confused.  This is not me!  This is not our lives!  We're like stereotypical staid upper-middle classers with a "nice" house in a "nice" neighbourhood (that makes no difference, but still, one should say it, right?).  We've got a million-ty higher degrees and have [had, in my case, pre-Lolly] good jobs.  DinnerDad pays child support on time (and in excessive amounts given our shared care).  We pay for great (expensive) medical insurance and for private schooling (and she has a card to claim directly).  We pay the gaps on all Snail's medical stuff and aids and equipment, coz DinnerDad earns good money and it's the right thing to do.  Bio-Mum didn't get ripped off in the propery settlement.  It was HER idea to get divorced (so surely she was prepared for some of this, right?).  The kids have been in shared care (week about) since day one.  It was a "decent" and unrelated-to-divorce interval before DinnerDad and I got together.  This stuff seems to me to be setting up a "let's just get on with co-parenting in a difficult, special-needs situation."  Doesn't it?  There aren't many extraneous reasons for shittiness, like anger about unpaid child support, or about getting ripped off, or about "the other woman" or whatever.

So...WTF?

Here's where I get shitty.  It's been 8 years since I've been with the kids.  I'm the mother of Snail and Smash's sister.  I'm not going anywhere.  I'm committed to Snail for the rest of my life.  I'll look after her, and feed her and dress her and change her bum and give her meds and hold her while she has seizures, til I'm too old to do it anymore, and then I'll hire someone and nag them to do it how I want.  I tell DinnerDad that if we ever splitsville, I'm still going to see Snail and care for her.  

Surely, at some point, bio-mum has to (putting it harshly) just suck it up.  I am one of Snail's primary carers.  Snail loves me.  I am committed to her care, and I need to get a say in how that care progresses.  It is becoming ridiculous to insist otherwise, and does Snail no favours.  I KNOW I am not her "real mother" and am not trying to be her "real mother".  I'm trying to be her step-mother, a primary carer who loves her and wants the best of therapy, equipment, therapists, medical peeps, schooling and all the rest for her.  I worry about her future.  I plan her care and where we will live and how we'll afford in-home care.  I cry about it, I share her triumphs and her lows.  I wipe up her drool and worry about her fluid intake.  I fret about vitamin D and epilepsy meds.  I'm not her "real mother" but I'm goddam the next best thing.  I want a spot at the Snail table.  

Up til now, I've respected bio-Mum's wishes that I not attend this stuff, and have not gone to this kind of thing to keep the peace (unless she didn't go, then, I went).  Until I realised after the police incident (!!) that there IS NO PEACE to keep!  And, frankly, there is also NO STUFF FOR SNAIL, unless DinnerDad and I do it. 

I only go through all this soul-baring and internal wrangling to ask you all:  Should I go to these appointments? 

Sure, if bio-mum doesn't go, I'll go with DinnerDad.  But, if she does go, do I push it? Do I demand a seat at the table?  Or is that too much and too far?  Do I have a right to this, or am I pushing it?

Argggg!  So, bloggy friends, what would YOU do?  To go, or not to go?  How much of an arsehole am I being, after all?


Thursday, August 18, 2011

Parks and Puppy Shoes

On Friday Lolly and I caught up with some friends at Queens Park, which has a fantabulous play ground [which would be made even more awesome by a fence, the eternal lament of the parent].  It was a cracker day, beautifully sunny. 

Lolly priming the pump for our friend, S.
It was the first time Lolly made a friend at the playground, and ran around with her, playing imaginative games.  It was lovely!  Naw, growing up...

Random friend!

Working hard to get water out of the pump.

And I can't resist, her latest insistence is an extra pair of shoes for her hands, all the better to be a puppy.  Here she is about to head off to the park.
Puppy Shoes
Honestly, the child can't really get any cuter.

Wednesday, August 17, 2011

Cyclone Hair!

Lolly's gorgeous curls get somewhat affected by the static from trampoline jumping. 



Her aunt Jubes calls this Cyclone Hair!  Its kind of awesome.

Tuesday, August 16, 2011

Gelastic epilepsy

Snail has this!  I didn't realise it had a special name all it's own.  Gelastic epilepsy...

Gelastic epilepsy refers to a type of epilepsy, in which the seizures are 'gelastic', gelastikos being the Greek word for laughter. Gelastic epilepsy is very rare and occurs slightly more commonly in boys than in girls. Of every 1000 children with epilepsy, only one or at the very most, two children will have gelastic epilepsy. 
Seizures may begin at any age but usually before three or four years of age. The seizures usually start with laughter and the laughter is often described as being 'hollow' or 'empty' and not very pleasant. The laughter occurs suddenly, comes on for no obvious reason and is usually completely out of place.
Sometimes older children may complain of a warning beforehand, although they are not always able to describe exactly what this warning is like.
The laughter usually lasts less than one minute and is then followed by signs that are more usually recognised with complex partial or focal seizures. These signs can include eye and head moving to one or the other side, automatisms (such as lip-smacking, mumbling or fidgeting of the hands) and altered awareness. This period may last for seconds to many minutes and then stops.
The most common areas of the brain which give rise to gelastic seizures are the hypothalamus (a small but extremely important structure deep in the centre of the brain), the temporal lobes and the frontal lobes.
Children may also have other types of seizures either immediately after these gelastic seizures or at other times. These include tonic-clonic and atonic seizures (also know as drop seizures).
They are generally caused by a type of tumour, but in Snail's case it's just from the way her brain is malformed.  This info doesn't help us any, really, but it just explains those horrible laughing, crying, or screaming in horror seizures that she gets.  Nearly always followed by a major tonic clonic or partial seizure.  She has, of course, a dizzying array of seizures, we don't see these gelastic ones all the time, but still, nice to learn a bit more.

The brain is an interesting and sometimes very fucked up place.

Brain, you are both sublime and ridiculous.

Saturday, August 13, 2011

When Lolly gets the iPhone..

You get mystery shots on your iPhone camera, like these.  I love the glimpse of what she finds interesting.

Pippin (the dog)

Bits of Pippin

Spot Pippin had just vacated

Embarassingly large television.

Hand.

Friday, August 12, 2011

Dentist!

As you may have guessed from the mystery title... we went to the dentist on Tuesday.  Lolly loved it.  She is VERY into doctors, vets, and dentists, and was super keen to sit in the chair, wear special gear, and have some glove-handed stranger poke her teeth with a sharp implement.  Seriously, she really did love it, this is not sarcasm.  Crazy, hey.

In the groovy chair.
Wearing the special glasses and bib thingo.
She has some decay in a "typical breastfeeding pattern" that we have to keep an eye on, brush a bit more, and come back in 6 months.  Apparently it's not too bad, and shouldn't affect her adult teeth.  I'm pretty sure she'll be up for the follow-up visit, as she spent most of Tuesday afternoon "dentist-ing" her toys.

She's funny that way.

ETA: on seeing these shots she says, "oh Mummy! We can go to the dentist again on Sunday!"

Oddball.

Thursday, August 11, 2011

Op-shop treasures

I took Lolly over to a big op-shop this week to source some old utensils and crockery for her new toy kitchen.  Here's a reminder of how fabulous it is!  DinnerDad and Lolly MADE this!


I'm mightly proud of 'em, and have a warm feeling of wholesome home-made-i-ness, which is definitely a type of moral superiority.  Oh yeah, I'm looking at store-bought toy kitchens and judging your parental awesomeness right now. 

Anyhoo, all harsh and clearly deserved judgement aside, Lolly and I found some great stuff at Vinnies, and got all this awesome for under $20.
Including the big basket!
Love this vintage melamine plate, we got a matching pair, just too funky...


Gorgeous little olive oil ceramic for 50c!


It was such a bargain, I kinda feel now like I'm ripping off people for charity.

Lolly is loving her new utensils, and as DinnerDad proclaimed, it's very "Montezuma" of me.  It's his word for Montessori.  Oh, and breakages don't freak me out if it only cost 50c.  That's the law.