Not the stories or statistics I want to be hearing…

It worries and saddens me greatly to wake up this morning and read this story of a teenage girl with epilepsy who was (allegedly) treated in an abysmal and discriminatory manner by her school.

And with BC just 18 months away from entering our public school system, I really, really don’t want to be reading these statistics:

recent figures obtained under freedom of information show that disability discrimination claims against the [Victorian] Department of Education have more than tripled, from six in 1999 to 19 in 2008.

I suppose I just have to HOPE that the increased number of claims is not actually a case of increased discrimination, but increased awareness of student rights and families feeling more empowered to take action. I really do hope that’s the case. I definitely applaud families for taking a stand against discriminatory treatment, but it makes me so sad that there would ever be such a need for them to do so. The education system should not let ANY child down in such a terrible way.

And speaking of being let down, the headline for this article leaves me rather cold too. How about “Teacher ‘kicked ball at student with epilepsy’. ” (rather than “Teacher ‘kicked ball at epileptic’.”). I think editors of this newspaper could do with a little education in ‘People First’ language. I feel another letter coming on…

HOLIDAYS!!!!

School holidays are here!!!

2 whole weeks with no therapy sessions, no appointments, no kinder drop offs. YAY!!!

Now just got to find ways to entertain the two boys before they turn in on themselves – yes, the biting continues ;-( .

BC’s favourite phrase these days is ‘I want to make something’. And the pressure is on for me to find new things for him to make. He loves all the usual (play dough, painting, blocks, drawing, pretend play, train set etc etc) but he also craves diversity and is always trying to get me to find him something ‘different’ to do.

Any suggestions for a craft loving little 4 year old?

Oh, and also best suggestions for cleaning texta marks off the walls? That’s Bean’s favourite new past time – actually, it’s not just the walls. It’s books, shelves, train track pieces, his face, my jeans……

These holidays are also signalling the start to us SERIOUSLY looking for a house to buy. We saw one today which I adore, but it might fall just a little out of our price range. It ticked nearly every single box EXCEPT the house is not on a level block so there are steps to the back garden. I THINK it will be possible to turn the steps into a ramp. I think. But the rest of the house is so beautifully open planned and perfect for our needs. I think we are going to put in an offer. I really hope that it will be enough.

Wean the Bean – progress report.

Thanks everyone for your good wishes!

So far so good. Sort of.

If we measure success by the fact that Bean hasn’t had any feeds since we began, then we have 100% success rate.

IF however, we measure success on how much sleep I’ve had as a result, then…. well, we’ve still got a way to go!!

The problem that we have is the problem I was expecting to have. It’s not that little Bean is sad and resistant to giving up his ‘mim mim’.

No, that was always going to be something we’d just have to get past.

The problem is that when little Bean gets upset, he gets hot and bothered. And when his skin gets hot, he gets eczema. Terrible eczema. Eczema that sends him into a spin of scratching and clawing at his skin, all over his body. And eczema that means sleep is impossible.

So, we’re taking this kind of step-by-step. Once he starts to scratch, I’m not pushing the cause of self soothing to sleep. Instead, we’ve been getting up to watch middle of the night episodes of Maisy Mouse or Teletubbies.

Yes, I am sure Supernanny would massively disapprove, but I feel confident enough that I know my little boy. Once he’s used to the fact he doesn’t need the mim mim to get to sleep, he will also get used to the fact that middle of the night Maisy is not going to be an ongoing treat.

So yeah, I am feeling pretty good about how we’re going so far, but I really could do with some more sleep myself. And I am so sick of Maisy. It’d be so much more fun if I were weaning a teenager and we could watch Rage or old Friends episodes and eat popcorn in the middle of the night .

Operation Wean the Bean

It’s been a long time coming.

But now it’s finally here.

It’s time for my little boob loving Bean to give up his ‘mim mim’.

It’s going to be a tough road ahead, because if there’s one thing I know for sure it’s this – he’s not going to give it up without a fight.

Wish me luck, and strength. There’s going to be a few sleepless nights ahead!!

Melbourne Museum.

We love the Melbourne Museum.We have a membership, thanks to my wonderful aunts.

We hadn’t been for a while, but went this afternoon and I was reminded just how incredibly, wonderfully, simply accessible it is for BC and his walker.

There are so many open spaces and wide paths that even though it was  busy (silly me for forgetting that all the government primary schools had a curriculum day today!) , it was still really easy for BC to get around.

There are lots of displays just at his height, so there are things he can look at, buttons he can press and exhibits he can explore without needing my help. He especially loved the dinosaur walk, the giant squid and the forest trail.

I can’t remember the last time I saw him so happy!

Little Bean was also more engaged in the exhibits than he has been before. He particularly liked pressing the buttons in the ‘Bugs Alive’ section and looking at the giant hairy tarantulas (yeek!).

AND they both really enjoyed playing with the quoits, hoops and stilts  in the outdoor play area of the Children’s Museum – but it was a bit too icy cold out there for me!!

Only downside was that one of the lifts wasn’t working which meant access to the second floor was only available via a long ramp OR the lift at one end of the building (so there was a bit of backtracking). Here’s hoping that they get their other lift in order soon so we can give them their full 5 stars for accessibility .

And silly me, yet again forgot my camera.

Promise to take it when next we go. Which I am sure will be very soon. We hadn’t even reached the car to leave before BC was asking ‘When are we coming back?’.

Happy Birthday Queenie!!

Yesterday was the Queen’s Birthday public holiday. (For those of you outside Australia and the Commonwealth who might be wondering why we have a holiday for the  birthday of the Queen of England,  it’s not because we’re overly patriotic. Remember that we’ll have any excuse for a holiday here. We even have a holiday for a horse race in November.  Anyway, the actual Queen’s Birthday is in April. The June date was the birthday of a long forgotten king, whose birthday was just a more suitable middle of year for an extra holiday, so that is where it has stayed)….

Quite appropriately for a day when we remember our links with the mother country, it was very wet. And freezing cold. And we all have the sniffles.

So we stayed home. And there wasn’t really much else to do, except, of course, hold a birthday party for the queen.

It was BC’s idea. He’s really taken to the idea of having pretend birthday parties lately. We seem to have parties of various complexity at least once a week. But he was particularly taken by the thought that we were having a holiday for the Queen and her birthday. So the party preparations began in earnest.

We made a cake. We blew up balloons. We invited the teddy bears.  We played pass the (royal) parcel. We played pin the crown on the Queenie and musical statues. We sang her happy birthday and blew out the candles. BC even made her a little present.

She didn’t make an appearance, but I am sure if she had time to receive an invitation she would have been here for sure. It was a huge success. BC won the pass the parcel and is still enjoying his new crayons. We think Aunty J might have cheated with the pin the crown on the queen, but we gave her a prize anyway. The musical statues was a bit of a fizzer as BC couldn’t stop laughing and little Bean didn’t stop screaming in complaint whenever the music was turned off. But it was still fun.

And we had two little boys who went to bed very tired and happy at the party’s end.

Then late last night, once they were sleeping, as I was trawling the blogosphere, I came across these fabulous crowns.

It seemed far too coincidental that I’d discover these on the Queens birthday, so once I’ve determined that they can be sent to Australia, hopefully I am going to buy one each for the boys. You can order them in a wide range of colours and designs and with your own children’s names on them. Best of all, they are being made by Daniel’s mum over at BetterThanNormal, to help pay for his therapies.

And there’s nothing better than getting a package in the mail.

I am still not sure if I’m going to be able to resist telling BC when the crowns arrive that they are actually a thank-you present from the queen for her fabulous birthday party .

Teeth

Yesterday, I posted about BC’s saliva control and mentioned that he doesn’t have very good awareness about when his lips are closed tightly.

Well today, I can definitely verify that he knows for sure when his teeth are closed tightly – or to be more precise clamped tightly around something. Usually his brother’s leg. Or ear. Or Arm.

Yes. We have a biting problem in our house.

To be fair to be BC, he didn’t start it. Little Bean has been a biter from a long way back. He started biting pretty much as soon as he got teeth. And aside from one spectacularly embarrassing incident a while back when he bit the finger of a friend’s new born baby that he was rather jealous to see me holding, he usually reserves his biting for his big brother. And occasionally his dad when he won’t get off the computer to play with him.

It’s works rather well with his dad. He moves impressively fast once he’s been chomped.

As far as the 2 boys go, for a while now, there’s been a rather familiar sequence of events that results in a biting frenzy. It starts with Little Bean taking something that BC is playing with. BC lunges at Little Bean with his most effective form of defence – the giant bear hug. Held in that tight embrace, Little Bean has no real option but to take a good grip of the nearest body part he can see with his fangs. Then of course, there are tears on both sides.

It also usually ends with Little Bean giving a spirited and heartfelt repetition of one of his favourite phrases ’sorry, sorry,  so sorry’. It’s hard to ever stay cross with him when he says that in his cute little voice.

However, BC has, in very recent times, upped the ante by turning the tables and started to initiate the biting.

I don’t know why. Maybe because he’s seen how effective if it is when he gets bitten. Maybe he’s figured that if it’s OK for Little Bean then it’s OK for him too.

We’ve discussed with him that biting is not allowed in our house by ANYONE. We’ve also discussed that as the big brother he has to set the standards for acceptable behaviour and THAT comment that I can hear coming from my own mother’s mouth ‘you’re older! You should know better’.

I hate the biting – from either of them. But I’m not quite sure how to stop it.

I’ve consulted my ‘toddler bible’ about how best to deal with the biting Bean and have been informed that it’s “an intentional experimental/defensive/aggressive/emotional action amongst toddlers” (whatever that means).  The bible also tells me that it ‘tends to disappear over age but’ (and here’s where BC comes into it as well) ‘preschool children and even older children sometimes bite when antagonised’.

But there wasn’t really any further constructive advice that’s helped me. Apart from reminding parents that it doesn’t ‘require biting back which is demeaning for the parent and teaches the toddler that biting is OK if you get mad enough’.

Really? Was my response to that piece of advice. You really need to tell parents that’s wrong? Guess I get a few brownie points at least for that solution never having entering my mind!

But apart from telling me what I shouldn’t do, the bible  doesn’t tell me what should I do?

BC has never been a naughty child and aside from the biting, little Bean is hardly a mini menace, so I don’t really have an armoury of effective discipline techniques up my sleeves.

I’m considering getting muzzles for them both, but would appreciate some more practical advice is anyone has any!

Saliva control

I am often very pleasantly suprised about how quickly kids adapt to BC’s disability. They generally seem to find it very easy to get used to him getting about in his walker (that’s just what he does). Same goes for his limited speech and his communication device – although this always seems to require a little more explanation – which is fair enough. Kids are curious after all.

However, one thing that other kids don’t seem to adapt well to his dribbling/drooling. Babies dribble. Dribbling is ‘yukky’. I’ve heard kids say so themselves.

BC had much better saliva control 6 months ago than today. The fact that he has less control now is actually because he’s doing so much more talking now. He needs to concentrate an awful lot on making any sounds with his mouth. And if he’s busy concentrating on forming consonant and vowel sounds to make words, well he doesn’t seem able to concentrate on controlling his saliva as well.

I decided a long time ago he wouldn’t wear bibs to solve the problem. Bibs are for babies. We’ve been trialling him using a ‘mop’ – ie a sweat wrist band that he can use to wipe his own mouth and chin if he feels wet. This works, to some degree, but if he’s at kinder, he’s busy concentrating not only on getting sounds out, but also on drawing, painting, dancing or whatever other activity is going on. It’s tough for him to also have to concentrate on controlling his saliva – something that just comes naturally to all his peers.

There is medication that you can take to control the saliva, but I’d really rather not go down that path. On an alternative therapy note, we’ve had some success with improving his saliva control with visits to a rolfer in the past. I think we’re due for another visit.

An added difficulty, and this is thanks to the brain injury that he received, BC doesn’t have a great awareness of when his mouth is closed. If I ask him to close his mouth, it often takes a few minutes for him to get it closed. And usually, for him, this means tucking his bottom lip under his front teeth. Because he can feel that. Our swimming time is helping in this area, because he sure knows if his mouth isn’t closed properly when the water gets in! But it’s a difficult process. Again, it means teaching him something that just comes naturally to other kids (unrelated to this topic, but interesting nonetheless, he also finds it very difficult to close his eyes if I ask him to. It’s not a cognitive issue. He understands what I’m asking him to do, but  the connections between the request and the voluntary action are very tricky for him! Thanks again brain injury…).

At the moment, we’re discussing a serious oral motor control sensory program with BC’s speech therapist. It sounds like a pretty full on 6 week program where we basically spend a LOT of time and techniques to remind him of his saliva and help him gain awareness of the saliva in the first place and give him more strategies to manage it. We have done parts of this in the past, including lip and mouth massage both with fingers and with an electric toothbrush. I will let you know how we go, when we do the ‘whole works’ later on.

We’re also going to get him some neckerchiefs which act like a bib, but don’t look babyish. (Photos to come) .

In the meantime, if you’re interested in knowing more about saliva control, medications and other therapies available, this booklet from the RCH in Melbourne is a fantastic online resource.

It seems a real priority for me to help BC with his saliva control. It’s not that I find it a problem myself. I’m used to my dribbly boy. But when I see how other kids react, I just want to cry. I really worry that it will be a real block to kids wanting to get to know him. I don’t know how far we’ll get with the control, but I would just like to do as much as we can, especially before he heads off to school in 18 months time.

LABELLED.

News from last week is that Indonesian pedestrians with disabilities will be required to wear signs – “for their safety”.

Seriously. It went through parliament!!!

Given the state of roads and footpaths (or lack thereof) in Indonesia you need to be a dairly brave pedestrian (able bodied or otherwise) to travel too far by foot. Thank god taxis are cheap.

But it says something about a society when they think the onus is on the person with a disability to label themselves as such, rather than on the road users to take due care with ALL pedestrians.

It’s a ridiculous move. And one which I am thankfully fairly confident won’t take off in other countries.

It saddens me though,  especially given that my children are half Indonesian, and we have a great love of Indonesia, that there aren’t more progressive  steps towards acceptance and integration of people with disabilities into the mainstream community.

I was glad to see that it at least brought more people with disabilities on to the streets – to protest the move. Let’s hope some common sense prevails and their rights as individuals are considered. It’d be great if the negative international press actually meant something was done to improve accessibility in Indonesian cities…but I won’t be holding my breath for that one.