The Nice People Thread, No.16: A Universe of Niceness.

Pyxis

vivatifosi wrote: »

I think you should write a book Sue. There will be other parents who are interested in what you've achieved, but sometimes you can only hear the status quo as it shouts louder.

I'm always inspired when I read what you've achieved. It's a crying shame that other kids do not have the same opportunity to reach their individual potential in the same way that you've pushed for your boys to have.

Just what I was thinking.

The results you have achieved with your sons speak for themselves. A book, or even a blog thing where you can described your experiences and what you tried and what worked, etc.

Or could you set up your own group? (Although I suppose that would take a lot of energy which you might not have at the moment?)

SingleSue

I have started to write a book, twice. I get so far and then think I am either being a bit preachy or that it is just generally crap and why would anyone want to read it.

The thing is, I know where the parents are coming from, we were the same when the boys got their diagnosis and especially with Joe as the world was such a frightening and confusing place for him and all we wanted to do was to protect them. The thing that made me realise we had got it bum upwards was the realisation that at some point in the future, we won't be around and what would he/they do then? This was further cemented when I became a single parent and the only way to do normal things (like the food shop), was to deal with the issue rather than to avoid it/settle with what we had.

My way is hard work, it can be distressing (to all concerned) and yes I have been called cruel because it can appear quite a cruel process (although it is done very carefully and in managed very small stages so it doesn't overwhelm). Joe actually watched an episode of House where the method I based my method on was being used and it made him feel very uncomfortable as he had a very distant memory of the same phrases being used with him (Look at me, look at me whilst also using hand gestures) to try to establish eye contact. He was surprised to discover the person doing it was me, he was so in his own world at the time that he didn't recognise us as his parents. He then said that must have been difficult for you and thanked me as he realised that without it, he wouldn't be at the point he is now and be able to do all the things he is able to do.

Really it is just like someone who is trying to overcome panic attacks or agrophobia, both of which I have suffered from in varying amounts, or even talking therapy for mental health. The process is uncomfortable and there are tears and meltdowns but every small step forward is a victory.

Pyxis

Just a suggestion..........


Could you put yourself into the mindset of someone with a newly-diagnosed child, picking up your 'book' and reading it.

Reading it from that point of view....... i.e. someone who is scared about the future for their child, how to cope, what to do, etc..........might enable you to see whether the book is preachy, or whether it does have some very useful strategies indeed.

Or, is there anyone you could ask to read it and evaluate it? It doesn't have to be anyone with experience of autism either.

If you like, I could.

SingleSue

Pyxis wrote: »

Just what I was thinking.

The results you have achieved with your sons speak for themselves. A book, or even a blog thing where you can described your experiences and what you tried and what worked, etc.

Or could you set up your own group? (Although I suppose that would take a lot of energy which you might not have at the moment?)

Unfortunately my views are not very popular with a lot of parents of children with autism so I am not sure how a group would work.

They also run the risk of going against what is the norm and being dropped by services. I've had to go it alone ever since I refused medication for Joe saying there had to be another way to deal with things and that it was akin to giving a sticking plaster for a broken leg, or a paracetomol to deal with the pain for cancer and doing nothing else. It was treating a symptom rather than the cause and doing that was never going to lead to improving their lives.

We were dropped from all services for being 'non co-operative' as a result and lost all and any support that we had been able to get up to that point. On the positive side, that allowed me to do all my own research and put in place all my own therapies which included doing my own speech therapy (Joe was non verbal), whilst allowing the freedom to try new things or drop things if they were not working etc. So instead of one path to go down, it opened up lots of different paths until I found something which worked for whichever issue I was dealing with at the time.

michaels

I would have thought the best thing would be to get it all down in whatever form it comes out and then either edit it yourself or get other(s) to edit it to get the tone to where you think it would be most likely to help?

Pyxis

SingleSue wrote: »

Unfortunately my views are not very popular with a lot of parents of children with autism so I am not sure how a group would work.

They also run the risk of going against what is the norm and being dropped by services. I've had to go it alone ever since I refused medication for Joe saying there had to be another way to deal with things and that it was akin to giving a sticking plaster for a broken leg, or a paracetomol to deal with the pain for cancer and doing nothing else. It was treating a symptom rather than the cause and doing that was never going to lead to improving their lives.

We were dropped from all services for being 'non co-operative' as a result and lost all and any support that we had been able to get up to that point. On the positive side, that allowed me to do all my own research and put in place all my own therapies which included doing my own speech therapy (Joe was non verbal), whilst allowing the freedom to try new things or drop things if they were not working etc. So instead of one path to go down, it opened up lots of different paths until I found something which worked for whichever issue I was dealing with at the time.

Well, you've done all the groundwork that might very well help some parents.
I mean the fact that it has worked so well for your boys shows that it can be better for some children.
Plus, let's face it, only highly motivated parents would choose to try your methods.

At least it would offer a choice.

Are there any research facilities that would be interested in what you have done? That might be another route to go down.

SingleSue

Pyxis wrote: »

Just a suggestion..........


Could you put yourself into the mindset of someone with a newly-diagnosed child, picking up your 'book' and reading it.

Reading it from that point of view....... i.e. someone who is scared about the future for their child, how to cope, what to do, etc..........might enable you to see whether the book is preachy, or whether it does have some very useful strategies indeed.

Or, is there anyone you could ask to read it and evaluate it? It doesn't have to be anyone with experience of autism either.


If you like, I could.

Being there and done it, on a new diagnosis, the general feeling is to go into lioness protection mode and any suggestion of doing something that may make your child cry or feel uncomfortable is one which can provoke a very angry and protective response. I understand that, I did it myself and it is a completely natural response at a time of great distress, confusion and fear.

Some never get over that protection mode, they are still grieving for the perfect child they have 'lost' and want to protect at all costs. Others take some time but get there in the end, whilst the remaining ones go into battle axe mode almost straight away (I was the middle group but for a shorter time than average).

Re reading what I have, thanks for the offer, I may take you up on it at some point in the future...

GDB2222

If Catalonia can be independent, then so can East Finchley! Who needs central government?

Pyxis

GDB2222 wrote: »

If Catalonia can be independent, then so can East Finchley! Who needs central government?

Well, Pimlico did it first! :T :T :T





Actually, we could all go back to our Anglo-Saxon tribal areas, you know, Wessex, East Anglia, Mercia and Northumbria.
Outer Cornwall wasn't included in those, being Celtic, like Wales.







Edit.....

Or going back even further, we could subdivide into the ancient Celtic tribal areas......

Can't be bothered to list them all, so here's a map........

PasturesNew

Re book ... just start blogging your ideas etc .... and let your audience find you. From that, you'll get followers ...and the book can be born.

Those who wish to find/follow you can - and they're all you're interested in. Let others spread the word ... you just get your thoughts down and "run"/leave them to it ...

Just like your cycle stuff ... but for ortizmz.