Messy Muffin Morning

Hubby truly is a brave man.

On Sunday morning, he decided to make some muffins. Beaver was keen, and went to the shops with Dad to buy eggs, the only missing ingredient. Then he lost interest, so Possum and Boo Boo were the remaining two bakers. Now, Possum has done this many times and is quite the muffin maker. He knows what to do. But this was the first time for Boo Boo.

So, here is how to make apple and cinnamon muffins as demonstrated by Boo Boo.

First, you sift the flour, mix eggs and cinnamon and sugar and whatever else Daddy has put in a bowl in front of you, and mix the whole lot together.

Then you add apples - and don't forget to eat some, and then some more.

Mix it all together, and spoon into baking tray.

Then Mamma takes you in the shower to wash the flour out of your hair and the muffin mix from between your fingers, while Daddy pops the muffins in the oven. Daddy and Possum play cars while you and mum get dressed, and Beaver pretends to read a Bible (the only Bible we own is in Ogoni language and not very useful for him).

Then you eat the muffins - and need another hose down.

From Dog to Diva in 10 Minutes

This girl, she's fun!

Cannot cope

I've been painting and thinking today.

I've been painting the window sill and back door of the garage today. I find it very relaxing to move the brush up and down, each brushstroke another small step to changing the colour scheme of the house. And while I concentrate on keeping my brush steady and straight, away from the glass window or brick wall, my mind goes wild. The more tricky the painting, the wilder my brain goes. Backwards and forward through the different sides of the argument, while the brush goes slower and ever more steady along the brick wall.

This morning, I read another one of Dave Hinsburger's excellent posts on eugenetics and screening out babies with a disability before I cleaned my brushes. One of the comments he collected stuck a chord – and stayed in my head:

Some people simply cannot cope (her emphasis) with a physically or mentally handicapped child, for many complex reasons and it's not my place or anyone else's to pass judgement on them.

I think this one stayed with me during my painting session because this is one of those comments we get a lot.

You know the "I don’t know how you cope" comments. I never know how to respond to such things. I generally say something non-descript about how we all get our challenges in life or some such nonsense.

Today, while painting the left garage window Pearl White, it hit my how I really want to respond. People say they couldn't cope with a disabled child. Well, it's bullshit.

Excuse the language. I know it's not very diplomatic, but that's just what it is.

If you had told me 8 years ago that I would have a child with a disability, I would have told you that I wouldn't know how to cope.

But you know what?

You grieve for your child, for how much harder things will be in their life. You scream and cry. And then at some point, you move on, and you cope. What other options are there? Like with everything in life, you somehow eventually simply cope.

I think it's called growing up.

Perth

On the Monday afternoon Possum and I were talking after we finished his homework. The conversation went to Oma and Opa, who are soon coming to visit us from Belgium. He wanted to know how many more weeks until they are here, and how long they would stay.

Possum was pleased to hear it's only 3 more weeks till Oma and Opa arrive, and even happier to hear that they are staying for nearly 7 weeks. Then I told him that they would be going to Perth for a week and a half while they are here in Australia.

And Possum, tired from his first day back at school after being sick, promptly burst into tears.

And said, in a sobbing voice:

"They love Perth more than me!"

The cost of language

It's been an interesting weekfor me. I've been at the receiving end of a cyber-bollocking. I've not been sure how to react which is why it took me some time to write about it. I'm still not entirely sure about all this - but it's time to post. Maybe the process of writing will help to enlighten me further.

An e-mail group I belong to has been vigorously debating the post-modern idea that the personal is political and the political is personal.

You see, some issues came up on the group that have dealt with language around disability. I have been very vocal on language issues and have very strong feelings about this. I don't like it when my children get reduced to their disability. I encounter people on daily basis who refer to my kids as "the CP boy" or "the little CP girl" and to us as "the CP family". The same battle is fought by other families who try to eradicate terms such as "the Downs girl or "the autistic boy" because they reduce a person to their disability. I mean, come on, you wouldn't find it polite to refer to your colleague as "the breast cancer woman" your sister as "the bipolar girl" or your grandfather as "the Alzheimer guy". Make the analogy with race, and see if it sounds discriminatory…

I constantly have to tell people that my kids are kids, and we are a family foremost, and yes, we happen to deal with CP, but that is not who my kids are or what our family is about. Of course these tings are very real, but we can choose our words carefully.

Language is important. I think it's a vital tool in acceptance and inclusion, and the power of language cannot be underestimated.

Well, a lady on the group took exception to my political posts.

This mother has a young preschooler with complex medical needs, and spends a lot of time in hospital, trying to survive. This is increadably hard for her and her entire family (the other children have to miss their mother for long spells while she is in hospital with their sick sibling). That she's not too interested in the politics of language is obvious, she has more pressing matters to deal with.

Last Thursday I send the group a report by Access Economics on how much CP costs the nation (follow the links here to view the full media release from CP Australia ( PDF - 23 KB) or download the full report, The Economic Impact of Cerebral Palsy in Australia in 2007

The report is a good thing. It gives us better weapons to ask for better services, funding to disability programs (like PADP) and of course, better payment for Carers. I mean, compare $306 average weekly cost to the $90.45 fortnightly Carer’s Allowance. It's an interesting report and a vital lobbying tool for parents and carers We need this sort of information. We just have to be careful that it doesn’t get mis-used. Just because they are disabled doesn’t mean my kids are costly scroungers….

So I added a note to the group that "I’m not so happy with having our children analyzed only in terms of what they cost" and referred to a post by some of the group members on the Carers 2020 website where they argue that it's time to change our thinking. The money spent on disabled kids (therapies, equipment, etc) is not so much a "cost" but actually an "investment" in their future. Help them out now, and one day they may be bringing home silver medals in the Paralympics, run a business, be a father, or get a job and pay their taxes.

My comment on the "cost" language came after some other posts on language, and was one too many for her. It doesn't really matter what she said. I probably should have thought "she's havign a rough time" and let it pass, but when she claimed that the whole group was unsupportive and dragging her down, I got defensive. I felt that was unfair to the group, anyone, that includes her and me, is free to post about any issue that is relevant to their situation as parents of children with CP. So I replied, and one thing let to another, and ended in some messages that were not nice (and I am equally guilty as accused). Best not said too much about it. But one of the things she wrote to me in her anger did rather upset me.

She wrote

You know, really Heike, I just think that you just don't get it. Whilst you are so worried about every label and anything that you can twist around to take offence at, there are other people in this group who are just concentrating on meeting the needs of their children so that they survive another day or week or year.

At first I was a bit offended by the "reverse competition" of "my kid is worse than yours" in the commnent. I didn't think that was very useful in a support group, and it's not really the level I want to decsend to.

But then of course, she is right.

I am very lucky that none of our kids have any medical issues to deal with. I don't have a clue what she, and others like her, have to go through. If my kid was in hospital, or having regular seizures, or whatever, I probably couldn’t give a toss about language either.

Yet.

As far as I am concerned, they are all different sides of the same coin.

There are those of us struggling very hard to keep our kids alive and in this world. There are others who are just trying to stay functional in this world. And others - with less life-threatening issues at hand - who are trying to make that same world a bit of a better place for all our kids, and all those who are "different" from the norm. And we all go through periods where different things take priority.

Language matters, for all our kids. One day, these kids will no longer be quite so medically fragile and go to school. Or the shops. Or the playground. And come home in tears over something others have said.

Language matters to me.

Where is the line between “disabled kids cost that much” and “disabled kids cost too much”?

Thief

We have a thief in the house.

Last Saturday, Daddy and Beaver had a sleep in the big bed and Possum, Boo Boo and I went to the park. After the park I bought the kids some ice-cream, and after they finished, I got a take-away one for Beaver, and a really nice biscuit for me. Which somehow ended up on the kitchen bench top while I was attending to other matters.

Until Possum screamed "Mam, she's got your bikkie"...

Now you see, this wheelchair we've got for Boo Boo has this nifty little control that lets her move the chair up higher. Like this.

This means she can access the table - very handy when visiting a cafe - or the sink - good for washing hands - or even the kitchen counter - not so handy when mum is cooking dinner and an exploring two year old comes driving along.

Or when there is a yummy biscuit on the kitchen bench top. You see, like this.

And so, the young lady spotted the bikkie, drove up to the counter, raised her chair, picked up the bikkie, lowered her chair (neatly obeying the "don't drive with the chair up" rule) and then drove herself off to a quiet corner to secretly munch on my special treat. Only to be thwarted by her equally eagle eyed brother!

Well, I took it off her, and she laughed. She knew darn well it was not hers to take. Cheeky bikkie thief!

Dunno.

I'm re-considering all this independence stuff....