Showtime!

Our whole tribe with cousin Fin, and Nathan Foley from Hi5

What a day! Our brother in law arranged a special treat for the kids today. He's a TV producer, and has been working on the popular kids' show Hi5. Every so often he organises something special (like some Hi5 merchandise, or a visit to the studio during the filming of the "Song of the Week") and today, we were invited to a pre-show performance. It's like a dress rehearsal, where they test how the show goes in front of an audience of kids somehow linked to someone working on Hi5, so it’s quite an intimate performance as far as shows go. You don't get this close to the Hi5 crew (consisting of Kellie, Charlie, Sun, Nathan and Tim) that often.

We must have been quite a sight. Our guys love shows, but aren't too keen on the noise levels at most performances, so we bought them some earmuffs. Their cousin has some too, and it was quite a sight. Three kids bobbing along to the music with their earmuffs on in the back row. Here are some pictures of the earmuff brigade we took with our phone:

They were completely transfixed to see their heroes up close. I don't think Possum (4 years old) closed his mouth at all during the first part of the performance. Master Determined (6 years) had the odd startle reflex with unexpected loud noises, but overall the earmuffs did the job and the kids managed to enjoy the show. One of the highlights was the sparkly confetti coming down from the ceiling, the kids just screamed "wow!!". Little Boo Boo – only 15 months old, and not yet owning earmuffs - was enthralled with the whole performance. She didn't take her eyes off the stage (not even while I was feeding her sushi for lunch) and regularly bobbed her head along to the music, and occasionally swung her arms around wildly. Towards the end, she even tried to sing along. I took her along to the circus when she was 5 months or so, and I fear I've imprinted shows into her young and malleable brain – I won't be surprised if she turns out to become a showgirl. Or runs off with the circus one day.

I certainly had fun today, especially as I knew most of the songs, which makes for happy singing along (yes, that's when you really know you're a parent. You recognise the Hi5 sons after the first few tunes, but don't ask me to do the same with any song in the current Top 10). For the kids' it's like going to a rock concert. The Hi5 crew are superstars as far as the children are concerned, and they all have their favourites – Mister Determined likes Kathleen and her successor Sun, and as far as Possum is concerned, Nathan is his hero. So it's hard to imagine how special a day like today is. They got to see the show in a relatively small room, which means we got lots closer than you'd normally would. And not only that, their lovely uncle organised a handshake and photo with Nathan for the boys – now we have something really special for Show and Tell when school starts again! The first thing the kids did when we came home was dress up and do a Hi5 show – acting out some of the scenes they had seen earlier that day. It was absolutely hilarious to see Master D. copy Kellie in her balancing act, and off course Possum did his impersonation of his beloved Nathan.

After the show, we had some coffee and Poffertjes (small Dutch pancakes). The boys were full of questions. Possum wanted to know how they got behind the stage, and Master D couldn't figure out how Nathan managed to get dressed into his "normal" clothes so quickly when he came out after the show. It was funny how the kids at first didn’t even recognise him without his show clothes on. It's just so magical at their age. They see Hi5 on television (well, DVDs) so they know it's not "real" (as in, the people aren't really inside the TV, which took a while to understand) and yet here they are, very real, and in front of them. We try to explain how it works, but it seems like a shame to take the magic away…

Sleeping Beauty

Isn't she lovely?

House Renovations

The renovations of the new house seem to be going well. Apart from the window the builders broke, that is. Oh, and the hole in the playroom ceiling. I guess you have to break an egg to make an omelet.

I have to admit, this whole building project is quite stressful. The most difficult thing is not being able to do things. Every time I get to the house, I have at least one child (generally a clingy baby) with me. I'm itching to get stuck into the garden, sweep up some mess, stick the letterbox in the ground, or chuck out some rubbish that was left under the house by previous inhabitants. But I get around to doing none of that at the moment. I guess it will take me years to get the garden cleaned up.

There is heaps of work to do. After all, the only reason we could afford the house is the sad state it was in. It all adds up, all those big and little changes, and the house is rapidly turning into a bottomless money pit. Still, the flip side is that we have found a house that works for us as a family, and all the renos mean that we can make the house accessible before we move in. As all the window frames were in a sad state and most needed removal, we've decided to put new big glass windows and sliding doors in, all flush with the floor, so it's easy to take a wheelchair in and out. The children's bathroom has been completely knocked down, extended, and will be fitted as accessible as possible given the space limitations. One day, the front entrance and the garden will be made fully accessible – for now, the funds won't stretch quite that far.



Some people have asked why on earth we are leaving our lovely little valley. We had absolutely no intention of ever leaving our house in Minnamurra (aboriginal word meaning "plenty of fish – sharks came in"). After all, two of our kids were born here, and their placentas have a gum tree growing on them in the garden. We love it here, and while it's not everyone's cuppa tea, it's our ideal house, in the ideal street. Still, a three level house in a deep bush valley is just not ideal when you have two children with a physical disability, and for some of our friends, the house is a no-go zone. So, off to suburbia we go. Our new house in Cawarra Place (an aboriginal word meaning "beside running water") is the perfect compromise between our children's needs for accessibility and our love of the bush.

The house is in walking distance to Gordon shops (which should get a whole heap of extra shops and a cinema, how good is that!) and Gordon station (which has lifts, so the kids can get into town). This should come in handy once the kids hit their teens and would like a more independent lifestyle. The boys can walk (Mister Determined may need a stick, but as there are no stairs or very steep hills, he should be ok even if his mobility deteriorates in puberty) and even if Boo Boo uses a wheelchair, she should be able to drive a powerchair up to Gordon. The house itself is pretty handy. It has three kids' bedrooms and a bathroom on one side, then a kitchen/dining/living area in the middle, and on the other side the parent's bedroom and bathroom and a study. The main living area of the house is all level, yet it has a big playroom downstairs, for that all important physiotherapy of going-up-and-down-the stairs. Another major asset is a nice size pool in the backyard! While all of this makes living easier for us as a family, we especially love the fact that the house backs onto the bush of Blackbutt Reserve. The living areas have a gorgeous view over the bush, and we can't wait to get stuck into the garden – those Agapanthas, Camellias and Azaleas, those palm trees and banana trees are on a one-way track to plant heaven.

Still, just over four more weeks to go until we move in, and loads more work is to be done by our Andrew, our wonderful builder, and his crew. The floor needs finishing, the veranda needs to be put up, and some holes (in walls and ceilings) need to be patched up. We still have to put the new windows in (fingers crossed they arrive on time), paint all the walls and sand and varnish the floors. I wonder if the house will be finished by the time we have to move. I sure hope so...

A little dance in the kitchen

Today I had a little dance in the kitchen. After a madly busy day, I finally got round to opening the mail while setting the dinner table for a quick fish and chips. I never though I would be so exited about a letter from DADHC (the NSW government Department of Ageing, Disability and Health Care).

This year, they are granting families with a disabled child a one off Family Assistance grant of $2,000 to buy something that would significantly improve the life of their family, and ideally something that enhances the social life of the disabled child, and the interaction between them and their non-disabled siblings and friends. So two weeks ago, I submitted an application for solar heating to be installed in the pool of our new house. I didn't hold my breath, but with two kids (and thus eligible for $4,000) I figured I might as well have a stab at it.

There is no doubt that a child with special needs comes with a higher price-tag. So far, we have bought our equipment (such as a manual wheelchair, a toilet rail, handrails along the stairs inside and outside the house etc.) ourself, often with help from our children's very generous grandparents. We have bought a bigger car, spend school fees on an independent school we felt could meet our son's needs better, and money on special remedial lessons. We have now bought a more accessible house which we are renovating to be wheelchair accessible. A lot of work needs to be done to it – a lower floor needs to be raised, doors are being widened and or built flush with the floor, the pool area is to be re-surfaced to be softer and accessible, the list goes on and on, and that is on top of the normal reno's the place needs – the only reason we could afford the house was its poor state. It goes without saying that we could not even have contemplated this move with out some substantial help from our parents – to whom I will be forever in debt, both financial and emotional.

I receive Carer Allowance (which is about $94.00 a fortnight) for each of the children. While this is nice, this in no way matches with the financial loss of not being able to go to work. Still, it's gratefully received, as is the odd annual bonus like we've just had. We've also had a bathroom modified to be more accessible through the Home Modifications System, and contributed towards this renovation. And we have received services from The Spastic Centre for free (although not all) and have supplemented the minimal services we receive from them with private therapies. All in all, we try to manage the extra costs, constantly aware that there are people out there trying to get by on a much smaller income and dealing with much higher needs.

It's very hard to have to "ask" friends and family, and society for "help". This is one question every parent of a child with a disability struggles with – we've been discussing this very topic in the last two three weeks on the CPeicalparents. Most people would say that parents of a child with a disability have a right to help and services. Yet we all end up feeling that, as one parent put it.

"She's MY daughter, I brought her into this world and meeting her needs is MY responsibility. "

Yet, the reality is that most of us can simply not afford the total cost of our children's extra needs. We feel we shouldn’t ask, because there are always people worse off than us, especially in a global context. We might be asking PADP for a feeding chair our child desperately needs, but if a child was born in a Third World country, they'd be lucky to have food. Then again, other times we feel unsure and shy about asking for help from the government or a charity. Maybe we feel ashamed. As one mum put it, "we do become some of societies most vulnerable and it sucks."

Sometimes I wonder if we feel we shouldn't ask because we feel in some way responsible for our children's disability. One mum said:

"Was I supposed to have set myself up for this first? Did I miss the government disclaimer saying: one in 200 of you will have a disabled child whose needs you will not be able to meet, and please note, you will receive negligible assistance, have children at your own risk."

But, to cut a long reflection short, with all those extra costs of the new house and its renovations, I thought I'd set my pride aside and apply for a contribution towards the solar heating of the pool. My OT supported the application, it's not as crazy as it seems. Kids with CP cannot swim in cold water as it makes their spasticity worse. At the same time, swimming is excellent therapy, and one recreational activity they can do with their siblings and peers on a reasonable even level. And lucky lucky me, this evening the letter came to tell me that my application had been approved, and a one-off payment of $4,000 is on its way to me to install the system. Yippee! I will be calling the solar heating guys first thing on Monday morning!

Troubled Child

A family member called recently and wanted to know how our "zorgenkind" was. This is a German and Dutch word (depending on how you spell it) which means "the child that troubles you". For a few seconds, I had absolutely no idea who she was talking to. Then it dawned on me that she meant Boo Boo, who, at age 14 months, is still not sitting independently. I have her an update on how our girl is going.

It's funny though, how quickly she just returned to being our daughter, and the CP thing moved to the background of her life. I mean, it is obviously a big thing in her life. It determines her development. It largely determines the structure of our day - with therapies to attend - and it determines the layout of our new house (and therefore it determines our finances rather dramatically!). But she's just a lovely, funny, cheerful little baby girl. She brings us joy everyday, and with Mr. Determined, her small gains are like small miracles to us. Being the third child, I am so much more able to relax and enjoy her. Also, having been on this journey before, I have come to realise that "normal" is an unattainable goal, and their lives are full and rich as they are, and i feel far less pressure to do endless therapies. All my family live in Europe, far removed from Boo Boo, they don't have the benefit of seeing the child we enjoy on a daily basis.

Trolley Dolly

Parents of "normal" kids might not quite get my elation, but my daily life has recently been revolutionised. Boo Boo is, at now 14 month, still not sitting independently. It's a balance thing, her trunk control is just not quite up to it. But here is the revolutionary thing - she can now sit up when holding on. This has made shopping soooo much easier. You know that little seat in the front of a shopping trolley - she can now sit in that as long as she holds on. No more awkward dancing with a double set of wheels (a pram and a shopping trolley) that knocks half the other shoppers over. Just a simple shop, almost like a "normal" mother and baby, mum pushing the trolley, baby in the front. On top of that, she absolutely loves the ride, you should see the grin on her face. And the whole (supermarket) word has opened up, she can now see the things and buy and even touch and hold them. So much better than sitting in a pram staring at people's knees. Sometimes, it's the simple things in life...