Author Archives: WYWB

About WYWB

Gold Coast, Australia

Unbelievable

Hubby took this photo when he went to the local BCF to buy some rope. This guy was parked across 4 disabled car spaces. Even Hubby couldn’t believe the audacity of this guy.

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How many wheelchairs?

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Hmmm

By Terrible Palsy.  Cross posted at terriblepalsy.

In our local paper there is a column called “Chatroom”.  It seems its purpose is for people to send SMS messages and they get published, kinda like letters to the editor without the correct spelling.

I don’t often read the column because I get a bit shocked as to the aggression and rudeness of the messages.  Lately, they have been all type of abusive messages about disabled and parents with prams car spaces.  Like this:-

All the sooking about the pram spaces.  What about the disabled spaces.  How many do they need.  A lot more mums go shopping each day than disabled people.”

and

To P..d off mum.  You would not have to struggle with babies etc etc if you stayed where you belong.  Chained to the kitchen sink.  So instead of moaning about parking as you flutter from dress shop to cafe to shoe shop, do something productive and iron your hubby’s socks and hankies.”

Makes me feel so safe and secure about the world Moo is growing up in.  Is it just me or are people getting less and less empathetic?

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Admiration

I wrote this in response to an anonymous doctor posting in the comments at Terrible Palsy. This doctor was exasperated that some parents of children with impairments become so upset with the way doctors treat them and their children that they start to feel anger toward all doctors. Parents start to assume the worst, that the next doctor will be as cavalier, uncaring, insensitive, impatient and as badly informed as the last. We all want good doctors, and many of us are lucky enough to find them, at least some of the time. We all want to know that the doctors care for our children as much as we do (which is perhaps impossible). We want to know that doctors are not writing our children off, dismissing them as too hard, too unlikely to improve or otherwise not worthy. Also, doctors sometimes hurt our children – and even if it’s for the best it can be very, very hard to forgive. Especially as the child watches the parents letting the betrayal and pain happen. That’s hard to recover from; it can take years.

I find it hard talking about doctors. Some are clearly doing their best, and I admire that. Some are very honest about what they don’t know, and I admire that too.

What I don’t admire is a specialist who tells the parents one thing, and then writes something completely different in the referral to a different specialist. I don’t admire doctors who haven’t read the file before they see the child. I know doctors are busy, but what’s the point of seeing the kid if you haven’t bothered to find out what’s wrong? My son’s condition is complicated and there’s a lot of history. I don’t admire doctors with no curiosity. I don’t admire doctors who tell you everything is OK, and then when there is a medical disaster basically say ‘I knew this would happen’. That doctor nearly felt the edge of my not admiring him on the end of his nose, I must say. I don’t admire doctors and nurses who ring up to complain that you have missed an appointment (that you rang them about as soon as you could) because your child was in intensive care. I don’t admire that they then send a threatening letter about non-compliance with every new appointment card. 
I don’t admire surgeons who suggest surgery that has dramatic possible complications by saying, Oh, it usually turns out pretty well. I don’t admire doctors who ask the same questions every appointment, not because they are checking progress but because they have forgotten everything about your child and did not read the chart.

I admire doctors who talk to my son like he is a human being. I admire doctors with a sense of humour about the crazy things kids do and say. I admire doctors who listen. I admire doctors who understand that our life is not all about making doctors feel better about themselves, because our energy is pretty much consumed with making our son feel better about himself. And with not becoming so exhausted that we lie down in the middle of the street.

I admire doctors who deserve it, and have been lucky enough to come across many who do, and a few who resoundingly don’t. I will love the doctors who saved my child’s life until I die, and that love does positively colour my reaction to other doctors. I admire doctors until they prove that I shouldn’t. And then I don’t.

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Vegetables are for eating

Cross posted at Terrible Palsy

There is a moral to this story. I think it is don’t drop in on friends unannounced.

But anyway . . .

. . . Hubby and I had taken the boys down the beach. It was a lovely morning but we had a squall come over the top of us and got drenched in the mad rush to get everyone off the beach and into the car. We were driving around, trying to decide what to do next. As we were in the area, we decided to drop in and see if some friends were home. We hadn’t seen them for a while. We knew that they were expecting their third child. A happy surprise given that the other two kids were almost in their teens.

Due to her “advanced” years, her pregnancy was being closely watched. The 13 week scan had shown a higher risk of down syndrome so she had gone off to have the amniocentesis. At the time, I had remarked to hubby that you only have the amnio if you care what the results are. Hubby’s response was “Jac, not everyone is up to the challenge”.

While we were outside, hubby and I were thinking out loud as to how far pregnant she would now be. We figured that it was somewhere between 6 – 9 months. We were expecting a big fat pregnant woman.

And yet, when she answered the door, my first reaction was to think – Gee, she is carrying really tiny.

Sure, she had a bit of a tummy but not 6 months worth. Hubby and I were terribly confused. We had no idea what was going on. Whether we had just got our dates wrong and she really wasn’t as far pregnant as we thought. It wasn’t until she told us that she was having another curette next week that the penny dropped and I realised that there was no way she could be pregnant.

Turns out that the amnio went well. They found out that they were having another pink bundle. At the morphology scan at 20 weeks, the technician walked back into the room after performing the scan and announced that this baby isn’t going to go to university.

Our friends were confused. What does that mean?

The rest of their day was consumed by a myriad of medical appointments. The baby had a hole in her heart and fluid on the brain. The term “vegetable” was thrown loosely around by the Drs. They were rushed into making a decision. And the inevitable result followed.

Our friends were understandably left upset and confused by the whole process. They are continuing to go through the grieving process.

When I started having complications during my pregnancy with Moo, I was told by my GP to have a termination to save myself from the pain of losing my child.

I thought it was a stupid thing to say. No matter which way I went, according to her, I was still going to lose my child. So how would having a termination make that somehow different? Because I chose it?

So, this is for those of you reading from the Northern Hemisphere. The senate committee is proposing a Bill for Prenatal/Postnatal Diagnosis Act. You can sign the petition showing your support here.

Back to my friends, I’m not here to criticize them or their decision in anyway. I do think that they were pushed into a decision. But this post could also be called, why I don’t like Doctors – reason 351.

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Robin Hood

Cross posted at Terrible Palsy

Below is an email I sent this morning:-

Dear friends and family,

My apologies for the group email.

You may have heard this morning that our government has decided to scrap the carer’s bonus in the fight against inflation. My thoughts regarding this would not be fit for printing.

You all know my son Marshall, or know of him. He has cerebral palsy resulting from his premature birth. I can say without a shadow of a doubt that my life is better for having him with me. I am thankful each and every day for this blessing. And besides which, he is incredibly cute – watch this if you don’t believe me.
What has been a constant struggle since his birth is the fight for services, equipment, therapy and medical treatment. This struggle leaves me often exhausted. If I look tired to you, this is the reason. And now, with this announcement, i feel like we have received another kick in the teeth.

I am not ashamed to say that i was counting on the bonus payment this year. Marshall needs a powerchair. This is not a luxury item. He has every right to have a means of getting him wherever he wants or needs to go. We are in the process of jumping through the hoops to get him one though I am aware that we will have to pay a contribution toward it if we get approval – this approval can take up to 18 months to get. Whether this contribution is a couple of thousands dollars or ten thousand dollars – i don’t know. But I had earmarked the bonus payment to go towards this. All of his carers payment goes into an account where it is solely spent on him and equipment for him. Needless to say, the carers payment doesn’t even come close to covering his equipment needs, but it does help.

I have set up an on-line petition. I urge you to follow the link and sign it. Please feel free to stop by and have a read of the other comments.

You can find the petition here.

Thank you,
Jacqui

ps – i don’t mind if you forward this email on.

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More harm than good

By terriblepalsy

I’ve discussed this issue before.

On the news tonight was a story promoting spinal cord injury awareness. The program is aimed at high school students and given by persons with paraplegia and quadriplegia resulting from spinal cord injuries. The message is – don’t do stupid things – otherwise you will end up in a wheelchair. And the implication is that life in a wheelchair sucks.

Here’s a quote from a web-site who promotes the program (I didn’t link it as it is down the page a fair bit and doesn’t have a direct link):-

Valuable spinal injury prevention messages have been shared with more than 1.1 million children throughout Queensland over the past two decades.The Spinal Education Awareness Team (SEAT) is an innovative injury prevention program that celebrates its 20th anniversary in 2007.A team of passionate and dedicated volunteers, who all have paraplegia or quadriplegia, share insight and information about the consequences of life in a wheelchair after a spinal cord injury.

They convey powerful injury prevention and safety messages.School students are in – or are fast approaching – the highest risk age group for the majority of all spinal cord injuries: between the ages of 15 and 30.

To further reach out to the students, the presenters reveal their own personal stories about how they sustained their injury – and encourage interaction with the students to foster greater disability awareness and understanding.

Speaking to an average 50,000 students each year, the presenters use an interactive, multi-media presentation that has accreditation approved by Education Queensland and is written to the school curriculum.The primary school presentation includes fun animation, video footage, colourful graphics and text, as well as games such as Simon Says to illustrate the important link between the brain and the spinal cord. At high schools, a powerful DVD called Consequences shares the stories of two teenagers who sustained permanent spinal cord injuries following road accidents – the number one cause of all such injuries.

With a variety of presentations targeted to different grades, the program focuses on lifestyle challenges after a spinal cord injury, the anatomy and physiology of the spine, and important safety messages. Key messages include the importance of wearing a helmet, checking water depth before diving, using seat belts and playing sport safely and according to the rules.

The SEAT program, which is supported by Disability Services Queensland, Queensland Transport, Department of the Premier and Cabinet, the Motor Accident Insurance Commission and BHP Billiton’s Cannington Mine, aims to reach out to 70,000 students in 2007 at pre-schools, primary schools and high schools around the state.The primary objective of SEAT is to reduce the incidence of spinal cord injury in Queensland.Currently a $1 fee per child is charged, however plans are underway to offer the program free of charge to all students in Queensland in the future.

To make a booking, phone 3391 2044 or email seat@spinal.com.au

So I know that this is probably the unpopular view – but – I think this type of program does more harm than good. It doesn’t seem to have taken into consideration the bigger picture; the flow on effect that it has for people with disabilities; that disabilities arise from the disabling attitude of the community – not the individual.

Don’t get me wrong – I’m all for education about the spine, how injuries occur and preventative actions.

What do you think?

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