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Raising little Westies, and life as parent of a special needs son
I’ve read today a story in mainstream news that has given me the horrors.
Given the weather and fires we are facing in Australia, and the fact that there is world class tennis happening in Sydney, there should be no shortage of topics to make me horrified. However, the issue at hand is “kids health.”
I’m specifically going to stay well away from naming the author, publisher, book title, or even the newspaper which has written the article about the book I disagree with. However I will talk about the premise that the newspaper article quotes from the book: “for most children it is a good thing to get measles.”
If enough children get measles for it to be a good thing for most of them… then far more of those children will suffer tragic complications, compared to if that same number of children were vaccinated against measles.
The worst possible complication for either the disease, or the vaccination, is one of two outcomes: death, or a debilitating disability that lasts the rest of the childs life. If 100,000 children have measles, then one of them will be expected – in first world countries – to suffer subacute sclerosing panencephalitis. Which is fatal. The parents of most children, though, won’t have to worry about that – because it’s only about 375 times more likely to happen to them than winning Lotto Strike (a state-run lottery in New South Wales where I am from). Given how many people are happy to buy a “lotto ticket” I’m surprised that many would be willing to gamble on something that is 375 times more likely to kill their child.
This compares to the MMR vaccination. The best source of data – which yes I am a strong fan of – for post vaccination health is from Finland, due to the structure of their health system and records. The UK NHS report that studies of post vaccination outcomes from patients vaccinated between 1982 and 1993 – with a sample size of 1.5 million vaccinated – showed zero long-term negative outcomes (“sequelae“) as a result of the vaccination.
I don’t doubt that there are people who are predispososed to have negative responses to all types of medications.
But all of us are predisposed to having negative responses to virii such as Mumps, Measles and Rubella.
On that basis my own opinion is – unless you can show that your child is more likely to have an advers response from the vaccine than the disease the vaccine is intended to protect your child from. You should carefully consider any decision to not vaccinate.
Vaccination programs prevent more lifetime disabilities and death, than vaccination avoidance campaigns. Regardless of which option you are chosing for your own child – base it on real information.
As I mentioned the other day, there has been some controversy regarding “the R-word” which reverberated around the sepecial-needs-blogosphere quite quickly. Some woman seems to be the female American television equivalent of Australia’s own Alan Jones. All this in way of background to what has occurred since.
I find it ironic that a bunch of parents of special needs children – including say children who are on the Autism spectrum – have such difficulty in understanding that many of the parents of children with similar needs to their own children, themselves potentially have limited communication skills. Limited empathy. Limited perception in language. All of this is on top of the usual issue that in writing down our verbal language, nuance of intonation can be totally lost.
This issue has come to a head during a Presidential election campaign. Which means, feelings are running high enough. So that when one person with a particular political persuasion comes head to head with another person of the opposing political persuasion, the opportunity to misunderstand or misrepresent goes through the roof.
I have found it really challenging to see how quickly people take their interactions from discussing the words of a political candidate, to their opinion of the effect of those words, to swearing at each other or using terribly derogatory names about each other.
Considering that all this started with one person using the R-word as a term of derision, that’s pretty ironic.
And when it reaches the extent that people “take a break” from Twitter, or Facebook, or writing a blog. It’s pretty terrible.
The Internet is a big place. If you disagree with me, feel free to tell me politely, then move on. I’m too busy to engage in a shit-fight.
I highly approve of Romney's decision to be kind and gentle to the retard.—
Ann Coulter (@AnnCoulter) October 23, 2012
For those who ignore politics, the USA is in the midst of a presidential campaign. Unfortunately I’m giving oxygen to a tweet from a person I’ve never heard of due to the totally inappropriate method used to attempt to sway opinion: attempting to degrade the person Coulter feels the least positively of.
My understanding in life is that if I feel positively about something, I can provide the world with the great benefit of telling everyone how wonderful that positive aspect of my life is. It’s irrelevant what it is that I like; simply by talking about what I like I will spread knowledge about that issue to those I come in contact with.
In this regard, both presidential candidates have a range of policies. Some of those policies on each side, any person could find a reason to agree with – surely, most people could agree that one of these guys would like to ensure that affordable healthcare is available to everyone. The other guy, would like to regain control over the countries spending habit.
Both of those are positive statements which I could easily build on as an argument for why a person should vote one way or the other.
Stating that one of these people seems to have a disability, is not. In fact, stating that one of these people seems to have a disability, and that’s a reason to not vote for them, would just highlight the ignorance and intolerance of the person making the comment. If the most positive thing you have to say, is negative, then probably you should do the world a favor and keep your comments to yourself.
This person has “mild mental retardation” according to DSM-IV – or in lay terms they are retarded.
If you think about using the word “retard” to describe something, think of this person before you use that word. This person loves life, and puts everything he has into what he does: learning to talk. Learning to read. Engaging with his brother, sister, and parents. Exploring exactly how much he can do with his body. He lives and loves without boundaries or limits.
That is what retarded people do. And just like people who are not retarded, they do a lot of other things, too.
If you’re not a doctor or a mechanic, you’re probably using it poorly. It should also be noted that as of DSM-V, the term “retarded” won’t even have a medical connotation – because it has become such a negative term it is being excised even from medical use.
If you use this word. Please stop. Unless you are a mechanic and you are discussing the operation of an internal combustion engine, and really know who you are talking to.
Some weeks, it’s really lucky they are as short as they are, so we can hit the timer and start afresh.
This week has been very full of activity. I drove up the coast and back last weekend. Had a weekday at home, quite unusual for me. Became embroiled in some online shenanigans, which I will go into no further detail. Work has been action packed.
At least it’s almost Friday.
Tonight, that’s it, I’m done. I truly hope to have more meaningful dialogue tomorrow!
I am however very much looking forward to a “regular” weekend, which I feel like I have not had for about six weeks now.
I don’t know if it’s just me. But it seems that since The Presidential Debate, with President Obama mentioning some unknown to me “Autistic Kid”, I have been hearing again a lot about the underlying cause behind an Autism Epidemic.
A lot of things have changed in human health since 1940. But the biggest changes have been in infant mortality, the human diet, and human activity levels. All of which makes a comparison in the rate of any particular part of the human condition between people of any given age now, compared to people of that same age more than even ten years ago, pretty darned hard. As such, I state my position on The Cause of Autism as “pragmatic”… The Cause will help reduce incidence in the Future. This will help other people’s children to not develop Autism, or Autism Like Behaviours*, or Autism Like Symptoms*, or Autism Like Signs*. I don’t however see how they will help me, nor my child who right now has Autism, and who my wife, son, daughter, and I, are all trying to help to be the best person he can be.
There are elements of his Autism that make him fantastic. There are elements of his Autism that make him a Very Difficult Person to be around. There are elements of his Autism that must make his own life seem very difficult. It is the third set of elements of his Autism that bother me the most, that I will help him struggle, deal with, confront and overcome. From there I hope he will deal with the other challenges that life confronts him with, in his own way, which may include seeking help from me.
No matter the situation your child is in, I am sure you will do the best you can to help them be all they can. If you can find it in you to help others do the same, that’s fantastic.
* Terms invented by me just now that I’m not going to define.
Today I’m eagerly anticipating two days from now.
I have two firsts coming up this week: My first “brand new” car, and my first “financed” car. It will be a Hyundai i30 CW SX station wagon, for those who care about the specifics of these matters.
Up until now, all the cars I have owned in my life, I have pretty much paid cash-on-the-spot – although in this electronic financial age that has taken the form of “whack it on the credit card mate” more than a couple of times. However, up until now, that credit card was only a means of paying for the car, not funding the purchase – it has always been paid in full the month after.
I have to say. What a massive pain this whole finance deal has been! Ordering a car couldn’t have been easier. But the finance people, and their paperwork, which I was very careful to give them incredible lead times to sort out – well they left it till well after my first phone call, until they had less than one week to go, to start sending me the forms they must have before the car can be delivered.
Anyway. I am aiming to remain calm, and I am aiming to be home Thursday night, and I am aiming to drive my brand new car for the first time the day after it is delivered, to go and see my parents-in-law.
One way or another, on a day I thought I would be spending in the car I ended up spending my time between domesticity and relaxing at the swimming pool. It was at the local swimming pool that most BTB Fan had his biggest meltdown (in my presence) in quite some time. This meltdown sems to have carried over to some poor concentration on my behalf – shown by poor attention leading to me leaving my phone behind when dropping off a guest we took to the pool.
So what triggered the meltdown?
Our local pool is quite a good facility. There is an indoor sports centre where they play things such as indoor soccer, as well as several outdoor pools, and a collection of indoor pools.
One of the indoor pools also has a small water slide, which is open for intermittant periods. Which are not advertised in any way, nor announced. It is also used as a major part of selling “swimming pool birthday party” packages.
Today while we were at the pool, as happens regularly, there was a group having a birthday party. And at some stage, they used the water slide. Our son, of course, wanted to go on the slide. But as he was not a part of the birthday party, he was not able to use the slide.
He focussed on the water slide, and refused to be distracted by any alternative. Ultimatey, he had a meltdown, with Bec taking him off to the ladys changeroom to ride his meltdown out.
On the flipside. He is increasingly confident in the water, and is teaching himself to swim. So far, underwater swimming, but in a style that will see him swimming breast stroke quite intuitively.
In 2001, the eve of my birthday changed.
For the rest of my life, the moments prior to the clock ticking over in Australia to my birthday became synonymous with the start of the “War on Terror.”
I remember, being awake, waiting for it to “officially” become my birthday. I forget what had been on the TV, but whatever it was, became the News, showing that an aircraft had just flown into some building in New York City.
While the commentators commence debating how an “accident” like this may occur, with the camera still focussed on the first building as it steadily commences burning, the second plane flew into the second building – just after midnight, my local time, on what had just become my 29th birthday.
Since that day, many people have paid the “ultimate price” putting their body on the line for their country and I hope for their personal beliefs. I hope the families of each of them can own September 11 as a day of remembrance.
Tomorrow, I will be 40. I’m still digesting that, I will think more on this issue over the next 24 hours.
Today is all about six songs that I’m addicted to. I have a few so here we go:
1. I was only 19, Redgum.
A classic Australian post-Vietnam war protest song.
2. And The Band Played Waltzing Matilda, Slim Dusty.
An anti war song.
Hmm, see a theme here? I listen to these songs on the way from Sydney to Canberra every Monday, and back again every Friday.
3. Bat Out of Hell, Meatloaf.
4. The Marching Song of the Covert Battalion, Billy Bragg.
5. Epic, Faith No More. Poor fish.
6. Wake Me Up When September Ends, Greenday.
Gee, notice a theme here?
Today, things fell into place a bit.
My wife is still unwell, and she had weight watchers this morning (I hear the result was a good one). To make the weekend a bit different, our kids football game has been scheduled for Sunday instead of Saturday, so I had been wondering what would be happening this weekend. But then my parents – who live several hundred kilometers away – told me the other night that they would be in Sydney this weekend.
No matter what I did though, they wouldn’t give me enough detail to actually make any plans.
Then last night while I was driving home my mum rang me and asked what we could all do if they were in Sydney today.
They are driving a brand new Winnebago, which they picked up two weeks ago in Melbourne. So arranging a place to meet them isn’t as straightforward as it could be. Especially given their fantastic knowledge of Sydney and Sydney roads.
Well, after having driven past it too many times, I’d been thinking about dropping into the Western Sydney Parklands – specifically, the Plough and Harrows section (given that the parklands go from Liverpool to Castle Hill).
Turns out, it was a great idea.
The parkland, features some fantastic free electric barbeques, well defined roads which are accessible but not too close to the barbeque and eating areas, great cycleways and walking tracks. These tracks seem to have quite a few drinking fountains, which include bubblers at the top, taps a bit lower, and all the runnoff ends up flowing through a dog water trough at the bottom – which is on a hinge, so if you have your dog with you, you can easily tip out the water that might not be fresh, and replace it.
After meeting my parents there, we had a barbeque , and later my kids had a play while I chatted a bit more with my parents. My kids had an absolute ball on the flying fox, while the boys and I also made good use of some of those bike tracks. Eventually, we headed home. We’re currently planning for my parents to catch my eldest two kids playing Australian Rules football for the St Clair Crows tomorrow, at the home ground in St Clair.
The afternoon was a not-quite-flurry of activity, with my current travelling to work in Canberra there is not a lot of down time in Westy Central.
Then dinner, with my wife “throwing together” a lazy three seperate meals in one night – which around here is “almost normal”, one weightwatchers friendly meal, three mainstream meals, and one spectrummy friendly meal most easily described as “colourless food in isolated piles” such as boiled rice, grilled chicken, and plain pasta seperately on a plate.
A pretty big day, all told, really.
Especially it turns out, for an eight-year-old boy, who happens to have Autism.
One little part of the day that is supposed to just work like clockwork is bedtime.
No matter what happens in the day, you can rely on what happens at night.
Bathtime, dinner time, “yoghurt time?”, brush your teeth, go to bed. Repeat this more frequently the more tired and frustrated you feel, it will do wonders for the emotions of anyone around you (or not).
Somewhere between “brush your teeth” and “go to bed”, there is supposed to be a “horsey ride“.
Except tonight, the shitstorm got real, and I outright ordered all three children to bed. They were ready, they were just all orbitting some other planet.
So today, instead of having a wonderful end to the day with Magpie reading to his brother Bob the Builder Fan, we finished with a meltdown by the youngest Westie, alone in his bed, cying about the horsey ride he never got to give his brother.
We now have this under control, and he seems to be settled in to go peacefully to sleep. We are blessed there, really.