What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Wednesday, 25 July 2007

Moving Day

Tomorrow is big day number one - we're moving out! Very exiting, and very sad.

Tuesday, 24 July 2007

Sad Sounds

Today, Mister Determined, aged 6, went to the Sydney Symphonic Orchestra with school. He proudly told us all about it, and which instruments he'd seen and heard, complete with hand movements. When Hubby asked him which was his favorite instrument. His answer was:

"The one that sounded sad. The one that sounded sad and made me feel like I needed Mum and Dad and I missed you"

He couldn't remember the name of the instrument, only knew that it was a string one. But didn't he just beautifully describe it?

Building Woes

Pfff, what a week! We've had loads of ups and downs with the house. Things are progressing, but slowly slowly. The new windows and glass doors are in (although not yet finished around the edges) and we have a front door! That does not sounds very logical, but there was a day there, last week, when we had no front door, and then we had one, but no-one willing or able to actually hang it in the new frame.

Andrew the builder really has been absolutely fantastic. Those of you that know us and need a builder, give me a call, I can recommend this guy big time. He knows the time pressure we are under, and has pulled out all stops to get things moving. He had his whole crew working over the weekend to get the balcony railing up and the house ready for the guys to come and sand the floors. We now have nicely sanded floors throughout the house, and are waiting to see what it looks like when the first coat of polyurethane is on. Then sometime later this week, the inside brick wall will be bagged and all the wall edges and trimmings are to be done, and then the whole house can be painted. There is the slight problem of the electricity company doing some work in the street on Thursday, cutting us off the electricity, and stalling us for a full day. Argghhh. Still, once the railing is on the balcony and the floor polish and paint have off-gassed, we can then finally move in.

At least today I had the satisfaction of getting our new front door keys cut. Now that did feel good.

On Thursday we have to move out of our old house and into the temporary sanctuary of their grandparents' house, just around the corner from our new house. This move greatly worries the children, and they have been very frazzled and cranky - I think they are just very worried about leaving what is, in effect, "their world". I have explained many times that we will take everything with us. I told them about the two strong men that will come to carry everything into their big truck and take it either to the new house in storage, or it comes to Oma and Opa's house with us. Still. Despite having told them numerous times, they can't get their heads around this, and are very worried that we will leave something behind.

Mister Determined is very worried that his Echidna will get lost, so I have had to make firm promises to keep her with me at all times. He is especially worried that the men will pack her up in a box - that is a big no no. The other day, he was staggering around, holding his bag in one hand, and Echidna in the other, trying to get down the stairs. I asked him why he didn't just put her in his bag. He looked at me with this look that said "are you a complete idiot?", rolled his eyes at me, and asked me "Would you put Boo Boo in your bag?" Yeah, right, what could I say to that? The kid may have learning difficulties, but his emotional intelligence seems fine to me!

Possum, on the other hand, is just worried that all his toys make it to the big new playroom. He would actually like us to pack up his Francie the Frog, as he thinks he would like to "discover" Francie again when he gets unpacked. They come from the same parents, but they are so different. Possum however is very concerned that we don't forget the food in the fridge and is really curious about the new owners. "I wonder what sort of stuff they have" he said this afternoon.

This afternoon we had another long discussion about the move while having a milkshake at the local cafe. I promised the boys that I would take them to the empty house after school on Thursday so they themselves can go and say goodbye to the old house, and check that we really have left nothing behind. They seemed to be a bit re-assured by that idea, so hopefully they will settle down a bit. I never thought I would say this, but now I just want to get it over and done with and move out of this house.

Wednesday, 18 July 2007

Freezing Little Folks

So, I've had to do the "pesky parent" routine again.

Sydney is in the middle of a cold snap, and this has galvanised my current unhappiness over Mister Determined's school uniform. Cold adversely affects him – it makes his muscles stiffen up more, and if he gets very cold, he can go into a type of shock. He starts to shiver, rapidly develops a fever, and his system collapses, leaving him sick for days. This can happen after a sudden cold shock (such as when he comes out of a warm pool into a cold room) or after long exposure to cold.

His school's current boys uniform policy states that Junior boys wear shorts at all times. In winter, these are thicker woollen shorts with longer and slightly thicker socks - but they are still shorts. During the cold winter months, this makes life difficult for Mister D., and puts extra strain on his system, that I believe he could do without. He has actually fallen over (resulting in some spectacular bruises) because the muscles in his legs stiffen up, and he has complained that his legs are sore and stiff.

I have no doubt that the school would allow him to wear long pants on cold days, but you see, that would not work – Mister Determined refuses to be "different" and will not want to wear long pants if he is the only one. I would therefore prefer to see the whole uniform policy at the school is changed. I'm not asking too much, am I?

But then, it's not just for him. Surely he cannot be the only child with cold legs in winter. Just yesterday – a day with frost on the grass and a think layer of ice on the pool – I was struck by the rugged up parents (long johns, pants, legwarmers, scarves, gloves and beanies) dropping of shivering young boys in no more than shorts!

But, I can hear you say, "generations of kids have managed". Indeed, kids manage. But should they have to? Kids have also survived bullying. The fact that kids get through a bad situation and survive despite it does not make the situation any better.

This issue of short and long pants off course is no trivial matter. There is a long history of marking the difference between Junior and Senior - and being allowed to wear long pants has traditionally been an important rite of passage, marking the status of an older, more responsible child. Indeed, I think this distinction is important, and should be maintained. But surely we can find other distinguishing marks such as different types of ties, hats, and different coloured pants (as is already happening to some level at the school). Why can we not allow both Junior and Senior boys to wear shorts in summer (currently the older boys are not allowed to wear shorts in summer, and this in our hot climate!?) and long trousers in winter in different colours?

So I sent out a letter to the school's management committee, asking them to revise the school's uniform policy. They meet every Monday. So now I wait and live in hope…

Tuesday, 17 July 2007

For the Birthday Girl!


Question of the Day

On the way to preschool, after dropping off his older brother to school this morning, 4 and three quarters year old Possum came with this question:

"Why do people in sailing boats have to watch for hippo's?"

Good question!

Monday, 16 July 2007

Back to School

Today was the first day back at school, after three weeks of holidays.

Possum did not want to go to preschool at all this morning ("I want to stay at home with mummy all day") but happily trotted off once he got there, and has a lovely day, playing with the Lego, the cars, and playing Ninja Turtles. He has really no idea what they are, he's never seen them on TV - and I have really no idea what playing NT actually means. When I asked him, it seemed to be a version of last year's Super Heroes, both basically involving groups of kids running around chasing each other. Still, at the end of the day, Possum (below) was a happy bunny.



(we don't let them have weapons, but boys will be boys. Even a rolled up newspaper will do as a sword)


Mister Determined, however, had a more mixed day back at school. The morning started off well enough. He paraded around in his school uniform (which seemed to have shrunk somewhat - or has he grown again?) and went off quite happily. But when he got to his class room, it was bustling with loud, exited boys running around. His desk had changed, his name tag was different, and when he opened his desk drawer, there was a new colouring in book. All this change was too much for him, and he burst into tears, bottom lip quivering. He really does not handle change very well, poor lad.

He settled in all right during the day, thankfully, and is now quite proud that he now gets picked up at the same time as the rest of the school (the littlies finish a bit earlier in the first two terms). His knees are bruised and bleeding from falling and trying to keep up with the rest of the class - so all is back to normal! I got an extra long hug when I picked him up, and off course he wanted to go straight home (although Possum would have loved to stay for a play in the playground with all the other kids, and Boo Boo was enjoying herself too, watching all the kids).

And for us, it's also always a tough day. We get reminded how fragile our seemingly "normal" life actually is. You see the other kids running into the classroom with the readers they have read over the holidays, while Mr. D. is still struggling to put words together. There are these moments when it just hits you in the face, like the wall of heat when you step out of an airplane in a tropical climate. Compared to some other kids with Cerebral Palsy, he's doing ok, especially physically. He is a gorgeous, sweet, caring and generous child. You get lulled into a false sense of security, that all is going all right. But he really did not get an easy ride in life. Learning is so important in our current world, and it's so hard for him. And his emotional intelligence means that he is acutely aware of the fact that the other children in his class are fining things so much easier, and are miles ahead of him academically. I just hope that he doesn't get de-motivated and loses interest in learning to read and write. Maybe I worry too much. Or maybe not, and I better schedule another talk with the special needs teacher....

And just to make a point of how proud I am of him, and how well he has settled into school life, here is a picture of Mister Determined (centre) singing in the school's Infants Choir on the school Open Day:

Wednesday, 11 July 2007

One of those Moments

You're cruising along; all is going quite all right, thank you very much, and then booom! Along comes one of those moments that knocks you sideways, and shows you that underneath the calm surface are still buried wild emotions. I had one of those moments today.

You see, my father in law generously bought us a gas instant hot water heater, which has a gizmo where you can set the water temperature. That way, you just turn on the tap, and hey presto, you have the water for your sink and shower at just the temperature you need. There is no risk of the children accidentally burning, and kids like ours with limited fine motor skills do not have to fiddle to get the water temperature right (for our kids, mixer taps or a swivel tap are equally difficult to manage). And he threw in a gas cook top for the kitchen as well, knowing that we much prefer to cook on gas. The only thing we had to do was get the house connected to gas. Easy-peasy, you'd think. There is gas in the street, so it shouldn't be too much trouble. Or so we thought.

All was on track, until a very friendly lady from AGL called me to say that the field technician from the gas distribution company had been to visit, and concluded that there was no gas to the house, and if we wanted the connection, we would have to make a "contribution between five and ten thousand dollars". Yes, you heard that right. Between 5,000 and 10,000! I know we're privileged living in the city, I know that folks out in the bush have to pay for all their mains connection (electricity, water) and those costs can run into the hundreds of thousands of dollars. I know, we should have been prepared for this possibility. But the truth is, we weren't. It hadn't even occurred to us that the gas may stop halfway down the street. And we certainly didn't budget this in. Not to mention that these costs are ridiculous, considering we have a perfectly fine electric hot water heater in the house.

So after discussing things with Hubby, I called ALG back, and got an equally helpful and friendly lady on the phone, who even recognised me from previous calls (ah, the benefits of having an unusual name). She had a few suggestions on how we could possible solve this issue, but we were still facing this extra cost if we were to go ahead. And then it came. Hubby told me to ask if they would have any special compensation for people in our situation. So I started to explain to her why we wanted the gas hot water. And as I explained how two of our children are disabled, my voice started to waver and quiver. I had to catch my breath as I was explaining the situation, and asking her if there was any special scheme or consideration that we would be eligible for. As Hubby said, it's worth asking, nothing lost. But there I was, nearly bursting into tears. She was very friendly, said she'd ring the distribution company and talk to her manager, and get back to me, meanwhile advising me what I could do.

I made myself another cup of coffee after the phone call, and in between playing with the Lego with Possum and discussing endless pretend office work with Mister Determined, I slurped my coffee and tried to understand why I got so upset. It wasn't that I minded telling the woman on the phone about my kids. It wasn't that I felt in any way sad for my kids or their disability. I realised that I got so upset because I was asking a total stranger for help.

We've had this discussion on CPecialparents a while ago. One of the mums said it so clearly: "It's my child I should be able to look after her". I have this feeling that this is my life and it's for me to deal with – but then, it is glaringly obvious that I can't manage on my own. I don't know how I would cope without Hubby. And it goes without saying that the wheels would long ago have fallen off the wagon had it not been for help from my family. Society is just not set up in a way that makes it easy for parents who have children with special needs. We have taken care of most things on our own, and there is no doubt that life is more expensive when you have children with a disability. And for one thing, I would have been back at work a long time ago and our finances would be in much better shape! I know all that. Yet to ask a stranger for help was just psychologically a step too far, and reduced me to tears. Maybe it also shows that underneath it all, there are some unresolved issues I need to address.

Oh, and the gas saga continues – I will let you know how it gets resolved. There is always the good old gas bottle…

Monday, 9 July 2007

Cabin Fever

We're in our third (and thankfully last) week of school holidays, and the kids are getting bored. It doesn't help that Daddy is really busy at work at the moment (try explaining to the kids that Dad doesn't have a holiday! They just don't seem to get it) and we've had rain for a few days. We've had lots of cranky behaviour, lots of rumbles ending in tears, and loads and loads of shitty behaviour - you know the one, where the boys walk past each other and throw a punch of a kick, just for good measure. It's driving me mad, but all the psychologists tell me to let them sort it out, so I try not to see and hear.

Today was a nice day. The girl next door came for a few hours to play with the boys, and they absolutely adore her. She kept them very busy for hours with nothing more than paper, colouring in pens, scissors, and her charm, off course. Possum drew a most amazing dinosaur world with her, consisting of many pages, one with a cave, two with a forest, one with a lagoon, and one with a sunny grass land. Then they drew some dinosaurs, cut them out, and had them walking in the dinosaur world. Magic! Meanwhile Mr. Determined drew a fat lady, as he called his blob. Turned out, after many giggles, that he meant a pregnant woman. Of course, they still had a mad rumble, and it did end in tears (but then, it's not very difficult to get Possum to burst into tears), but they had a great time.






Tomorrow we're off to check out the new Sydney Wildlife Centre in Darling Harbour. The kids are excited, not so much to see the animals, but because we're going on the train.

Saturday, 7 July 2007

A Home in the Making

Slowly, slowly, the house is starting to come together. The deck is back up - the timbers need cutting to size on the side and the railing needs to go up - and the inside of the house is nearing completion. From now on, it's the finishing touches, and the children's bathroom to go. Once all that is done, it's waiting for the new windows to be delivered and installed, and then we can have the floor polished and varnished, and the ceilings and walls painted. And all that with three weeks to go.
We've spent most of today at the new house, cleaning the pool (a whole new set of chores to do, yipee!) and planting some native trees. Once those are established, we will be able to grow more in the protection and shade underneath. The kids really enjoy gardening. I have to say, it is very rewarding here in Sydney. Things like wattles tend to grow quite fast, and gives the children a clear sense of achievement.

But the nicest bit was having breakfast this morning, sitting by the side of the pool. In our current house, we don't have any morning sun (well, we don't have much sun anytime), and it is very enjoyable (and nice and warm) to sit there, drinking coffee in the sun. We couldn't entirely relax (the pool fence between the house and the pool isn't up yet) with the boys running around, but it gave us a glimpse of things to come. Nice to have a level garden, and to live in a North facing house...

Monday, 2 July 2007

Conversation Stopper

Hubby took all three the kids on the train on Sunday (while i caught up on some sleep after sharing my bed with two crook kids). They loved the ride, especially Boo Boo, who made lots of loud appreciative noises.
On the way back, hubby was sitting next to an elderly couple. After a few looks and smiles, they started talking to him. They were coo-cooing about how beautiful our children are, how handsome they looked and all that (I can't disagree!). Then they started to chat, and asked questions, you know, like their names and ages. They did not seem to notice anything special about Master Determined, or at least they didn't say. Then they got to Boo Boo, who was sitting being smiley and cute in her pram. They asked her name, and then age.
"Ah, is she walking yet?"
Hubby said "no, not yet"
"Crawling?"
"No, not yet."
"Sitting?"
"No, not sitting either. She has cerebral palsy."
"Oh."
And that was the end of the conversation. No more was said. There were still some smiles, but that was that. Now they were an older Asian couple, so maybe they just didn't understand what Cerebral Palsy meant, and were too shy to ask. Maybe they were embarrassed on our behalf - that happens a lot, people just don't know what to say to us.
I remember my awkwardness around people with a disability. You want to be nice, while not being patronising. You want to treat people normal, while at the same time you feel you shouldn't pretend the difference is not there either, that seems fake. This is one of the most wonderful things my children have taught me. They are different, and some of their friends are different, and i have learned - and am still learning every day - to look for the person behind the disability.
Vive la difference! We are lucky to have people with a disability in our lives. And yes, we have gorgeous looking kids.