ImaWestie

Raising little Westies, and life as parent of a special needs son

Tag Archives: asd

The Rules

One benefit of Autism that I have come to lean on a fair bit is “rules.”
Generally, once our son knows what The Rules are for a given situation, he actually is quite good at following them. I see this as a consequence of “rigid application of routines.”
This has allowed me to give my son a fairly “long leash” in situations he is familiar with – when we are at the football with his brother and sister, or even, at the local pool.
Today, this fell down a little. And shock, horror, I was called on to actually supervise a seven year old boy.
The problem wasn’t so much the failing to follow the rules – in this instance a quite reasonable and significant saftety type rule – but due to his condition, the inability of the supervising staff to engage him to actually follow the rules. This coincided with me not really being motivated to sit around and supervise him having fun at a time when I was trying to actually achieve something for myself.

So what gave?

There was a consequence for both of us. Actually, all four – because his brother and sister were there – our time at the pool came to an abrupt end, even though I hadn’t done everything I wanted to do. Along with his ability to generally comply with rules, my son really does understand that not following “the rules” usually has consequences. So, with very little discussion, we left.

*sigh* as complaints about children with autism go, that’s a pretty lame effort. He really is coming ahead in leaps and bounds, and these Christmas holidays have been fantastic for him.

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The Bourne Legacy

I absolutely love the whole Bourne series of films. They do a fantastic job of setting a stage within a very close-to-real universe which could believably overlap with the one the rest of us happen to inhabit.

Then along came The Bourne Legacy.

A fantastic cinematic experience with a great cast, and a great storyline. Without going too deep, it just happens to be very similar to the movies that came before. It relies on those movies to set the scene. But if you think your experience with the earlier movies is going to tell you everything there is to know about The Bourne Legacy … well you’re in for a shock. You may even get upset that it’s not what you were expecting.

Just like getting on an airplane bound for Rome, and hopping off in … Holland?

Or expecting that your experience with previous children – maybe even children with a disability – will prepare you for a child with Autism.

Taken as an experience on their own, a child with Autism on the most part is a joy. One that may be a lot of hard work. But in the main, Autism itself does not preclude a full enjoyable relationship between child and carer. Let assumptions based on other children assume control of the journey though, and everyone involved will become confused, upset, and possibly needlessly angry.

Enjoy the movie you have. Stop wishing it was a movie that was never made.

Autism. Aspergers. You tell me the difference?

It’s been coming for some time now. DSM-IV is to be replaced, by DSM-V.

Along with the deprecation of the term “retarded” as a description of intellectual capability, so to will “Aspergers” be deprecated, to become simply a superfluous means of describing a person on the Autism spectrum. For those lining up to paediatricians to have children either born already or yet to be born, seen and assessed, labelled for the convenience of the education system, this represents a simplification of a complicated ecology of service providers.

However, for those who have grown up over the last forty or so years, and the parents of those who are recently diagnosed… being Aspergian is as important (or more important?) than being male or female, asian, african-american, indigenous or white, athiest, christian or wiccan.

Far be it from me to have too much opinion here, because my own experience is as a parent having a son be diagnosed in an inconsistent manner, clearly told “well for want of a distinct diagnosis lets use PDD-NOS – it’s vague enough to cover anything.” That made way for “Classic Autism” which seemed quite appropriate at the time, however, some of the descriptors for Classic Autism are tied to very specific moments in the persons life.

Lately, Aspergers seems to have become a highly visible description for a set of behaviours and preferences. I wonder, if this description loses official status and predominance… how many people would line up to be diagnosed on the Autism spectrum as an adult?

Are you effected by this change? Do you feel strongly about it? I’d be overjoyed to hear your opinion.

How to not present an argument

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.

My youngest son

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.

Mutual support

I wrote about The Cause a couple of days ago. The same motivation has me coming back to talk about “support.

The Autism community is made up of a lot of people. Most of them are not the people with Autism. This is because there are so many more people effected when a child or person is diagnosed with Autism, and so many people seeking to profit from delivering services on a professional basis – medical, paramedical, alternative medical, educational, respite – the list of services people access is pretty extensive.

Largely though, parents, carers and grandparents of children with “Autism like behaviour” seek out people who live Autism 24/7 more than they do the health professionals. I know my own reasons for this but I would not seek to suggest my own reasons apply to anyone else. I do know that several years after even thinking about seeking a diagnosis, I turn to parent focussed blogs, Facebook pages, and websites, far more than I do to professional such as Sue Larkey. While I may turn to somebody like Sue for factual information about some specific event or behaviour, I look to blogs and social media conversations about how people live their lives.

And I put myself out there in a pretty similar way. A way that I hope validates and acknowledges what other people think. Sometimes I ask what these people would do in my situation. Sometimes I just talk about what I do, why, and what the response to that is – from my son, and the other people he deals with. I’m happy to hear directly anybodys opinion on what I do. And I am happy to say to anyone directly what I think of what they are writing. Or if I’m not, then I’m happy to disregard it. The Internet is a pretty big place, I’ll find something I like, somewhere.

I might talk about how I don’t agree with people who opinions aren’t most heavily influenced by “the evidence”. How I disregard anything that isn’t double blind testible. How differently I might deal with a behaviour, or a treatment regimin, or stimulus. How I feel dietary interventions must be a result of bloodwork, otherwise, how do you know what element of what you are doing is actually changing behaviour?

But I would either specifically call out an example of a post on a site like Age of Autism (no, I’m not linking to that site – I’m yet to find anything on it I feel I could in good faith recommend anyone read) as something I disagree with… or I would not go into detail about the concepts I dispute. I have far more time to support the people I agree with, than call out the people who I dispute or disagree with. Life’s too short.

The Cause

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.

Should relaxing be so hard?

Magpie’s concept of “Relaxing” is pretty high on stress

It seems that we are well and truly locked onto a path toward an eventual diagnosis of “something.”

Both Bec and I have been of the opinion for a little while that if we had not been challenged and living with “Parenting on Steroids” bought about by our youngest son, then Magpie would have had us running for help several years ago. But as it is, he’s that far toward the bell curve that we’ve been wandering along happily.

Our relaxing weekend just gone, bought some of his challenges into stark relief.

Faced with some simple, enjoyable options, he was quite simply “overwhelmed.” As the weekend came to a close, in response to being asked if he wanted his face to be painted, he came very close to having a meltdown. This was a little extreme but quite representative of the challenges we faced over the entire weekend.

Bec has said that the school counsellor is pointing us in the direction of a paediatrician. From what I’ve seen this last weekend, the sooner we can get him there, to at least help him – and us – understand his challenges, the better.

Silent Sunday

Celebrating the end of a great weekend getaway, which finished for us at the Nowra Dragon Boat Races.

Photos

Tonight I’m letting some photos of my three wonderful kids do all the talking. My lovely wife Bec over at WestyCentral arranged for our kids to be photographed by Stage Struck. Apparently people who take photos for a living can do a pretty good job.

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More success

Last summer, my kids all went along to swimming lessons. They were great – both the swimming lessons, and my kids.

Summer though comes to an end, and swimming is replaced by football, which takes up so much time that swimming isn’t such a great idea when we are so busy as well.

These last couple of weeks, I have been taking my kids to the local swimming pool. My youngest non-verbal son has had quite a bit of anxiety in coming to grips with being back in the pool. But in his take-on-the-world style, he rapidly got back to his previous confidence and was using the water slide, but remained concerned with putting his face under the water.

This weekend just gone, all that has changed.

It started in the shallowest pools, with my son happily ducking under the water.

Then yesterday, I suggested to him that he comes with me into “the big pool“. This pool has a ramp running the whole length of the pool in one lane, which ends in water that is 1.2m deep – nowhere near out of depth for myself, but far too deep for my son to have his head above the water while standing on the floor.

He happily followed me in. He happily laid front down and attempted to dogpaddle.

I was overjoyed.

He managed to get himself all the way to the shallowest end of the pool, although this was quite a challenge for him.

We finished the day with him hanging onto my elbows, laying face down, and kicking his way through the water.

With a start to the summer (well – Winter is finished!) this great, I’m hopeful that swimming lessons will be very positive, fruitful, and successful.

Great work to my youngest son.

I will also add that all this success followed having been told he could not use the water slide due to a childs birthday party which had booked the facility.

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