no thank you

[Phill]

This is a curious one.
Where did the diagnosis come from if Edinburgh weren't playing ball?
Not sure my skim reading the thread has missed this, but did you approach Highland Council re SEN before relocating?

[chaz]

As a parent of an Autistic child can I ask where was your daughter educated up until 4 years ago ? I tend to agree with some that Perthshire would have maybe been a better option or finding out exactly what Highland council could offer before the move x

[ruth]

chaz, from p1-p5 she was educated in mainstream primary. In p6 she got a free place (as she is very intelligent) at a posh private school in Edinburgh, but this is when our daily challenges (I had no knowledge of autism at this time) became severe, so she swapped back to original primary, but by then had totally lost the ability to cope with daily life. She tried to kill herself in January of that year by headbutting concrete walls and steps at the Commonwealth pool. It took 4 adults to hold her back (she was only a skinny wee 10 year old) and she still managed to hurt her head. She was diagnosed later that year (it took more than 5 years and 3 referrals to CAMHS to find out what the problem was), offical diagnosis is 'ASD with extreme anxiety and avoidant behaviour'. She was 1st referred to CAMHS in 2009 age 6 when she stopped eating (hospitalised and put on drip), weighed only 18 kilos and wanted to die.

And, I have no intention of asking Highland Council for support in any shape or form, not with education, not with social care, nothing.

Horseman - I'm aware of the case you have talked about. However, this is a different kettle of fish. Firstly, it was the ASN Tribunal that judged Edinburgh Council had discriminated, not me. It is a court of law that has come to that decision, not me.
When a child is absent from school due to ill health they are entitled to 3 to 7 hours of home tuition a week. That is all I've ever asked Edinburgh Council for. I have never asked them to fund a placement at a specialist school. I have only ever asked for what she is statutorily entitled to.
And it wasn't just an apology that the ASN Tribunal ordered, however the other things that were ordered are not relevant to us as we have moved area. These things are relevant to all the other families in Edinburgh that are seeking support.

[mi16]

chaz, from p1-p5 she was educated in mainstream primary. In p6 she got a free place (as she is very intelligent) at a posh private school in Edinburgh, but this is when our daily challenges (I had no knowledge of autism at this time) became severe, so she swapped back to original primary, but by then had totally lost the ability to cope with daily life. She tried to kill herself in January of that year by headbutting concrete walls and steps at the Commonwealth pool. It took 4 adults to hold her back (she was only a skinny wee 10 year old) and she still managed to hurt her head. She was diagnosed later that year (it took more than 5 years and 3 referrals to CAMHS to find out what the problem was), offical diagnosis is 'ASD with extreme anxiety and avoidant behaviour'. She was 1st referred to CAMHS in 2009 age 6 when she stopped eating (hospitalised and put on drip), weighed only 18 kilos and wanted to die.And, I have no intention of asking Highland Council for support in any shape or form, not with education, not with social care, nothing.Horseman - I'm aware of the case you have talked about. However, this is a different kettle of fish. Firstly, it was the ASN Tribunal that judged Edinburgh Council had discriminated, not me. It is a court of law that has come to that decision, not me. When a child is absent from school due to ill health they are entitled to 3 to 7 hours of home tuition a week. That is all I've ever asked Edinburgh Council for. I have never asked them to fund a placement at a specialist school. I have only ever asked for what she is statutorily entitled to. And it wasn't just an apology that the ASN Tribunal ordered, however the other things that were ordered are not relevant to us as we have moved area. These things are relevant to all the other families in Edinburgh that are seeking support.

I applaud you for taking on the system, and I hope you can raise the necessary to defend the appeal.If you dont defend your daughters corner then who will?Have you tried approaching legal counsel to see if you could perhaps appeal to their softer side and obtain cheaper representation?

[chaz]

[QUOTE=ruth;1167211]chaz, from p1
I am rather confused as on the first page you state you are waiting to hear what support you will get. There are many children in the area with complex needs , I wish you well with your plight for justice x

[ruth]

hallo chaz, I haven't found where I said I'm waiting to hear what support we'll get. I think I said I'm happy to home educate whilst I'm finding out what support is available locally. By 'support available locally' I mean things that will specifically help my daughter. For example, Puffin Croft Farm at John O'Groats has already been a big help to my daughter. And I will find more things like that, I'm quite sure. And I've been in touch with North Highland College and evening classes there are a possibility. But after my experiences in Edinburgh I do not want to get sucked back into the system. Community support is better for us.

[chaz]

I must have misunderstood your post I have copied below , that you were intending an education within a local school. x
We moved to Gills Bay on 24th February. Until that date she was on school roll in Edinburgh, but not receiving any education (oh, she did get 3 maths lessons - not a lot but better than nowt). She is currently being home-educated whilst I find out if she would get the support she needs to attend school up here. I have managed to find her a maths and physics tutor but am still looking for tutors for English, biology, chemistry and art. Let me know if you know any tutors!

[The Horseman]

Today in North America I read of an innovative...I Believe...new process which is being used on similar children and that is 'Self Hypnosis', which has been surprisingly successful.... teaches them to monitor themselves....fyi..

[ruth]

horseman - I'll check out that self-hypnosis, thanks.
chaz - ah yes, now I see the comment I made. Yes, I don't think school is an option, been getting info from other asd/pda families in Highland, but you never know, maybe in a year or so she'd manage, but at the moment thinking the evening class once a week is probably the most she could manage.

And thanks everyone for the chat and feel free to share my campaign, thanks, https://www.youcaring.com/meltemsrights-842295

[Tavendale]

Today in North America I read of an innovative...I Believe...new process which is being used on similar children and that is 'Self Hypnosis', which has been surprisingly successful.... teaches them to monitor themselves....fyi..

Perhaps I could also interest you in some snake oil? The number of insane, poorly evidenced and non-peer-reviewed 'treatments' offered up to the parents of autistic children is, by this point, beyond reckoning.

Not a go at you personally, by the way, just at yet another of these 'treatments'.

I don't really understand what the OP hopes to accomplish besides making some lawyers yet wealthier, but I've also not been through the whole process, as they have. We do have different perspectives.

The described head banging is not uncommon among autistic children. It's distressing, to be sure, but tend to be related to sensory issues or anxiety rather than a conscious effort to kill one's self. It's a form of self-regulation. Again, though, severity can vary and it can be very distressing.

To be honest, being relatively familiar with education and ASN, I'm not totally sure how things were able to get to this stage. Must have been quite intense.

[The Horseman]

Am a little surprised re your comments...
Quote.....General Practitioners...Doctors know very little about Autism. Perhaps this is why people are looking for new Avenues.
1 in 88 people are now being diagnosed with some type of Autism.
My interest in suggesting this to Ruth, was it came from Johns Hopkins University in the United States....perhaps you have never heard of it, or it's just another Anti Trump day over 'ome!

As there are so many variants of said Condition, and no money to treat 1 in 88 people, there are still people...The Medical Profession.....who are attempting to come to grips with it. What works for one perhaps will not work for another.......And I think it is better to have some hope and trial and error, than to throw one's hands up and say impossible.

In addition there is no cost to read, and there is no danger in concocting drugs which could harm said children. If it works it is a success. s

[Tavendale]

perhaps you have never heard of it, or it's just another Anti Trump day over 'ome!

Ok? I'm not really good at responding to non-sequiturs but, ok? I guess?

Variance is true of any condition, you're right. But the variance cuts both ways in that the segment of the autistic population who could make use of this is rather narrow, given the different ways in which the condition can manifest. The combination with PDA, which I've had some dealings with in the past, would suggest to me this particular approach would be a non-starter, but individuals are... well, individual.

Fair point on the lack of investment needed also.

I suppose I've just seen a lot of parents taken along for a ride on similar sounding treatments and leap into something of a knee-jerk skepticism.

[The Horseman]

Ruth....I searched Autism asd/pda self hypnosis and there are some 'you tube' videos.
I don't know if they will assist you/daughter but it is just another Avenue to follow.
I understand what 'T' is talking about, but nothing ventured nothing gained.
There have been amazing discoveries and results in many Medical Fields ...perhaps look at it like Trial/Error and Elimination.....but there may be something to discover.....any hope, is better than No Hope.

[Bogbrush]

and there is no danger in concocting drugs which could harm said children. If it works it is a success. s

Que? Perhaps you would like to oversee the child selection programme for your eugenics experiment?

[The Horseman]

Que? Perhaps you would like to oversee the child selection programme for your eugenics experiment?

What are you getting at.......strange one!

[The Horseman]

All should read the comments on the You caring/Go fund site.... it is on the very first post!
Seems someone is alleging a false name for the person requesting the Funds.

[cptdodger]

All should read the comments on the You caring/Go fund site.... it is on the very first post!
Seems someone is alleging a false name for the person requesting the Funds.

Can you put the comment on here, because I can't find it on the Go Fund thing.

[aidipi]

Sorry, I don't understand why you won't allow your child to be given the opportunity to attend school in Caithness where there is specialist support.

[The Horseman]

Can you put the comment on here, because I can't find it on the Go Fund thing.

If you open the very first Post....at the end you will see some blue script. That tells a story with comments from a number of people...... Two comments by a man who said he knew this woman, I think he used the words 'fake' and she was misspelling her real name, have now been deleted....new comments there.
Dunno, seems there is something strange with this whole thing.
My thoughts were that if the Appeal was successful, which the £20,000 was for, then Edinburgh Council would have to foot the bill for treatment, but why then move to Caithness which is a long way from Edinburgh....perhaps this is real.....it just doesn't now give a clear view of the journey.

[cptdodger]

If you open the very first Post....at the end you will see some blue script. That tells a story with comments from a number of people...... Two comments by a man who said he knew this woman, I think he used the words 'fake' and she was misspelling her real name, have now been deleted....new comments there.
Dunno, seems there is something strange with this whole thing.
My thoughts were that if the Appeal was successful, which the £20,000 was for, then Edinburgh Council would have to foot the bill for treatment, but why then move to Caithness which is a long way from Edinburgh....perhaps this is real.....it just doesn't now give a clear view of the journey.

I must admit I am struggling with this as well. She has repeated time and time again, the money she is trying to raise for the appeal is not just for an apology, well I am afraid it has to be because that is all Edinburgh Council can give her, they can't educate her child now because she moved. She fought four years to get education for her daughter, she moves here and is not even going to attempt to contact the council here to arrange or try to arrange schooling for her child. She says she is doing this for other children who are disabled in Edinburgh, which is great but the outcome of this or any other case has no bearing on any other child, they are treated as individuals on a case to case basis, not as a group. Seemingly there are two schools in Britain, one in Perthshire and one in Rotherham (I think) that can educate her child, so she moves to the remotest part of the British Mainland. Now, she is either not explaining herself clearly and this all makes perfect sense, or it's something else, but it just does not add up.