Category Archives: terriblepalsy

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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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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Everyone is a critic

By Terrible Palsy – cross posted at Terrible Palsy.

I first heard about Darius Goes West over at Chewing the Fat. I love Dave’s blog and have read all the crap leveled at him by other disability advocates.

Reading his blog a couple of months ago, I suddenly “got” Dave. Sure, he delivers inspirational story after story but I think that there is very much a place for him in this world for his type of advocacy. We don’t all have the same approach to advocacy, but is any way less right than the other? There is a diverse range of advocates out there – Cilla, Kay Olson, Penny Richards, David, Kathryn, Jodi, ATM to name a few. Each one I carefully listen to their views even though I don’t always agree with them.

Watching the shorts for Darius Goes West, I felt that I was prepared to give it a go despite hearing that dreaded “suffering” word. I ordered my copy and it arrived earlier this week.

I loved it. Darius, you are a hero. And Logan, you have done a fantastic job. The film not only address MD but talks about the ADA and accessibility as well as the job of carers. It does this by appealing to the masses. Maybe, the film isn’t 100% politically correct but I don’t think that is the point, is it?

At around about the same time I watched this film, I read discussion about cut-off dates for resuscitating extreme and micro-preemies. The debate re-ignites every now and again as we all hear the same arguments over and over again. But it also serves to re-ignite the confusion that I hold within myself.

See, I agree with the cut-off dates – currently at 23 weeks, depending upon the appearance and response of the child. I lived with the cut-off dates and it affected my pregnancy with Moo. Reading the comments and feeling the tears well up in my eyes made me realise how deeply this did affect me even though it occurred now almost 4 years ago.

I wonder how – with my beliefs that there is a point where you have to let nature take it’s course . . . that not everyone who can be saved by medical science, should be saved . . . that some interventions without pain relief are nothing short of cruel . . and that the ultimate decision regarding resuscitation should be made by the parents – whether I deserve to call myself an advocate for disability issues.

Is there a place in the world for me? Do I have a right to force my views upon this world?

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Ten

By terriblepalsy

The latest disability blog carnival is on what professionals should know about disability.

Well, my personal view is that they should know a lot.

Here is my top ten points (Letterman style):-

10. A person has a condition, not is the condition. Moo doesn’t have special needs, he has additional needs.

9. My time is just as important as your time. I don’t have all day to sit around and wait for you. Just because Moo has a disability, does not mean that we do not have a life.

8. My son doesn’t have to like you. Chances are, he won’t or he doesn’t. That’s okay, cause neither do I.

7. If you speak slowly and in a loud voice to Moo, chances are that he will speak slowly and in a loud voice back.

6. An appointment with Moo every six months for 5 minutes does not make you an expert on Moo’s body.

5. I don’t have a medical degree.

4. Just because you say that Moo won’t do things, doesn’t mean that he won’t. Doctors/health professionals can be wrong.

3. Therapy is not the most important thing in our lives.

2. Walking is over-rated.

1. You charge too much.

Activevoice1 has some more to add to my list – you can find her list here.

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