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bothered

LETS DO SOMETHING !

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Its just a thought. Often we all spend our time battling alone. I frequently get bamboozled by people telling me my situation was so difficult for professionals to work out. They all had their own excuses etc. Seems to me that any attempts to seek support, help or action are met with the following situation developing:

 

Firstly we phone department concerned.

 

They say they will get back to us but dont.

 

We then write to them

 

They write back with excuses and waffle

 

We keep trying and all departments do all they can to minimise the importance of our problem and put us off with comments like ..." its very hard and its just the way it is. We sympathise but its not our role. You will find it hard to change anything. Unfortunately the school dont think there is a problem so we cant act. We dont have the money. We have been told by the authority we must not recomend any of the things you are saying. Its too expensive. Blah blah blah"

 

We then give up or we keep going.

 

If we give up then we find we go round the same circle a few months later

 

If we keep going we find the communications get more difficult or collapse with anyone who was helpful backing off.

 

We then become isolated and the authorities insinuated you are making things worse for your child or that its you that is the problem.

 

I find it amazing that this goes on and that so many of us are struggling.

 

It occurred to me that if we could get some kind of list together which showed the numbers involved, the frequency and repetative problems then someone might listen.

 

What I thought of, without giving names or anything, perhaps posting here a few details of your situation and see if we cannot get together some evidence.

 

Example:

 

Age of your child.

 

Mainstream or specialist school.

 

In or out of school.

 

Statement or not

 

How hard was it to get a statement

 

How hard was it to get a school suited to your childs needs

 

What professionals were involved and which ones were supportive, helpful, proactive etc

 

Whether your child has been out of school and how long for

 

Whether your child has become depressed, suicidal due to schooling problems

 

On medication

 

Whether behaviour has deteriorated towards you due to schooling problems

 

Have you had a successful outcome

 

How long did it take

 

If not how long since your first attempts to solve

 

How has this affected you. Family life, other children, friends, job, home etc

 

Location in the country

 

 

Anyone interested ?

 

If so post your stuff on here keeping it as brief as possible, just facts and perhaps we could collate something.

 

Make it all anonymous so you feel free to say exactly what the situation is.

 

x

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Hi my Boy is nearly 8. he's not long been forced in to mainstream. He is statmented but the b*****ds would not wait for him to be diagnosed before putting him in new school. He is now very depressed the school cant cope and i'm sick and tired of seeing head and being told he's in trouble.Just sent email to mp last resort

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My Group AIM Autism-in-Mind have been collecting this type of information for our a year now - would you like our Questionnaire?

 

We have so far passed on the results to Government Ministers - the Educational and Skills Committe - David Cameron's SEN Enquiry along with others that I cannot bring to mind at the moment. It's making them listen and then act that's the hard part.

 

Carole

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Its just a thought. Often we all spend our time battling alone. I frequently get bamboozled by people telling me my situation was so difficult for professionals to work out. They all had their own excuses etc. Seems to me that any attempts to seek support, help or action are met with the following situation developing:

 

Firstly we phone department concerned.

 

They say they will get back to us but dont.

 

We then write to them

 

They write back with excuses and waffle

 

We keep trying and all departments do all they can to minimise the importance of our problem and put us off with comments like ..." its very hard and its just the way it is. We sympathise but its not our role. You will find it hard to change anything. Unfortunately the school dont think there is a problem so we cant act. We dont have the money. We have been told by the authority we must not recomend any of the things you are saying. Its too expensive. Blah blah blah"

 

We then give up or we keep going.

 

If we give up then we find we go round the same circle a few months later

 

If we keep going we find the communications get more difficult or collapse with anyone who was helpful backing off.

 

We then become isolated and the authorities insinuated you are making things worse for your child or that its you that is the problem.

 

I find it amazing that this goes on and that so many of us are struggling.

 

It occurred to me that if we could get some kind of list together which showed the numbers involved, the frequency and repetative problems then someone might listen.

 

What I thought of, without giving names or anything, perhaps posting here a few details of your situation and see if we cannot get together some evidence.

 

Example:

 

Age of your child.

 

Mainstream or specialist school.

 

In or out of school.

 

Statement or not

 

How hard was it to get a statement

 

How hard was it to get a school suited to your childs needs

 

What professionals were involved and which ones were supportive, helpful, proactive etc

 

Whether your child has been out of school and how long for

 

Whether your child has become depressed, suicidal due to schooling problems

 

On medication

 

Whether behaviour has deteriorated towards you due to schooling problems

 

Have you had a successful outcome

 

How long did it take

 

If not how long since your first attempts to solve

 

How has this affected you. Family life, other children, friends, job, home etc

 

Location in the country

 

 

Anyone interested ?

 

If so post your stuff on here keeping it as brief as possible, just facts and perhaps we could collate something.

 

Make it all anonymous so you feel free to say exactly what the situation is.

 

x

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Great Idea! Here's ours;

 

8 yr old

 

Mainstream school.

 

In school (just about)

 

No Statement and two years after dx not even an IEP

 

School taking funding for our child via the SEN register but reluctant to provide any adjustments or even accept that anxieties and difficulties are due to ASD.

 

Had involvement with SALT, dietician, general paed consultant (for stomach probs) school SENCO and community paed psych consultant; dietician and SALT were v. good, psych consultant (ASD specialist) a complete star, others useless.

 

Seriously considering elective Home ED at the moment

 

Child extremely depressed, punches self and makes suicidal remarks.

 

No medication

 

No successful outcome yet

 

Several years of trying to get appropriate support

 

Family life completely revolves around child's anxieties, distress which have worsened considerably due to school's complete failure to provide suitable support. Child usually reluctant to going out at all and very anxious/ depressed.

 

Location - South East England

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Thank you,

 

Hopefully lots of people will respond. I am genuinely interested in finding out this information. Due to my son's problems I had to leave my job working at a special needs school which was not only a wonderful experience but deeply frustrating - and I just got to work with the lucky ones!! I did not meet one parent who had an easy time getting their children educated. It is frankly disgusting.

 

I am seriously thinking of taking some action but until I get some responses I am not sure what it will be yet. It seems so many have and are still struggling. I would like to find a new way that will have more impact. I certainly dont intend writing thousands of letters and spending years waiting for action. so here is hoping that we think of something ....... Bob Geldoff comes to mind !!! Now I am laughing at the image of him with the so called professionals on "Stateside" now that would be fabulous.

x

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You have a great idea. :clap::clap::clap: The more they hear from our cases, the greater the chances of being heard by the powers to be.

I have been living in a very similar situation to what you have described. Here are my answers to your questionnaire:

 

Age of your child. 12

 

Mainstream or specialist school. mainstream

 

In or out of school: in school

 

Statement or not: not statemented

 

How hard was it to get a statement: I've been asking for one since 2003. He has not been assessed yet. The LEA refused a statutory assessment last year.

 

How hard was it to get a school suited to your childs needs: I had no choice of school.

 

What professionals were involved and which ones were supportive, helpful, proactive etc

GP, paediatrician, very helpful. Child psychologist, social worker, and SENCO have become involved due to my constant insistence. Don't know how much S Services will help. The school takes too long to ask for a Statutory Assessment and gives him some support after my son had serious problems.

 

Whether your child has been out of school and how long for: he was out for a week refusing to go to school until he received counselling at school

 

Whether your child has become depressed, suicidal due to schooling problems:

depressed, suicidal, extremely aggressive, all due to school demands, bullying and lack of support

 

On medication:

desmopression, melatonin

 

Whether behaviour has deteriorated towards you due to schooling problems:

Aggressive towards me as he blames me for not being able to sort his problemsat school. His attitude towards other children and family members has also deteriorated. He says he is "like the other children at school".

 

Have you had a successful outcome

Not yet

 

How long did it take:

 

I'm still waiting for appropriate support at school and appropriate treatment of his anxiety/anger

 

If not how long since your first attempts to solve: 2003

 

How has this affected you. Family life, other children, friends, job, home etc:

I'm a lone parent and it has meant more isolation for me. It's hard also to get a good job as I have no one to leave my son with and I can only work part time. I've been told that I could get a better job if I am able to solve my "problem" first.

 

Location in the country: South West England

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Thank you,

 

Nellie is worried this may harm the forum etc.

 

I have assured her and again assure you that this information will be completely anonymus (sorry cant spell that!)

 

I am simply trying to see how bad this really is and find a genuinely peaceful but important and significant way of highlighting the real problems for our kids and our families.

 

I do not wish in any way to cause any conflict or problem for anyone.

 

I am simply trying to get some information to back up my argument.

 

It will only be used in the manner of for example

 

 

x number of children are out of school

 

x number of 9 years olds experience x

 

x number of parents have lost their jobs

 

 

I believe the numbers will shock alot of people and I think also that many of us will be warmed by the genuine support that can be offered by those not currently affected.

 

I have no intention of entering more agro but I would like to highlight this in a way that people will understand and perhaps also in a way that they can relate to and with information they understand.

 

Because the general public do not really know what asperges is they have no concept of the affect it has on everyone involved. I think if they did they would help and if nothing else when bumping into our children in their lives they might be supportive instead of assuming our kids are naughty and badly parented.

 

Hopefully this has reassured those who may be concerned, I mean no harm !!! I come in peace !!!!

 

xx

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My partner had to give up work as my boys need full time care and sw would not offer suport when pushed thay coused trouble

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What sort of trouble ?

 

When I really pushed things to the wire, I found I became more and more intimidated by those involved. I had to, it seemed to me, prove my innocence and my sons diagnosis. Social workers spent two weeks in my house trying to get my son to school. This because they were trying to help education prove there was not a problem. Needless to say it failed miserably which simply reinforced my little angels idea that he was in control and invincible. Not helped by the fact that they told him they could not wait all day to get him to school, so he thought, "right then, I will just last out til you have to leave" Once they realised they could do no better they finally admitted that they did not know what to do. It was laughable yet not funny !!!

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Age of your child.

 

14

 

Mainstream or specialist school.

 

Mainstream

 

In or out of school.

 

Out of school

 

Statement or not

 

He has a proposed statement but it has not yet been finalised.

 

 

How hard was it to get a statement

 

If I answer this only based on recent evidence it was relatively easy.The school applied for the statement and I backed their request with evidence. Following this, I had a phone call from the LEA saying that they did not think that they were going to assess and suggesting a PRU for sick children. I turned this down pointing out that it was unsuitable and they then asked me to meet with them to discuss the matter. Following that meeting the LEA agreed to assess and a proposed statement has been issued following assessment.

 

However, my son has always had problems at school and since the age of 4 his schools have been saying that he needs 1 to 1 support but that they were not prepared to waste their budgets on an obviously very intelligent child who should do more to help himself but I was unaware until I found krism that you could have a statement for a gifted child who was not struggling academically.

 

How hard was it to get a school suited to your childs needs

 

I haven't been able to get a school that meets my child's needs and this is one of the delaying factors in finalising the statement. The LEA are currently looking at a combination of 1 to 1 specialised teaching at home and elearning but nothing has officially been agreed.

 

What professionals were involved and which ones were supportive, helpful, proactive etc

 

I have been extremely lucky. I had a champion in the Deputy Head of my son's school who went far beyond what I could reasonably expect to help my son. My son's Consultant at CAHMS has been brilliant and has backed me all the way and the Occupational Therapist was also supportive of what I was trying to achieve. I was also really lucky with the EP who assessed my son and who listened and was very fair in his assessment.

 

Whether your child has been out of school and how long for

 

Officially he has been out of school since May 2005. Unofficially, he has not attended school for longer than half a day since December 2004. Many days between Dec 2004 and May 2005 he achieved nothing longer than half an hour.

 

Whether your child has become depressed, suicidal due to schooling problems

 

Yes

 

On medication

 

Yes, he has been taking melatonin and Prozac but he has just stopped taking the Prozac.

 

Whether behaviour has deteriorated towards you due to schooling problems

 

He has never been an aggressive child and he always behaves according to the rules but his frustrations were very obvious when he was at school and he stopped communicating with us in anything other than representational sounds and a funny made up language. Since withdrawing him from school this has stopped and his frustrations are no longer evident.

 

Have you had a successful outcome

 

Hopefully, the signs are that we will get a statement that will suit him but that can't be guaranteed until it is finalised.

 

How long did it take

 

10 years

 

 

How has this affected you. Family life, other children, friends, job, home etc

 

Things have been very difficult for us. We do not have the support of any family or friends and have had to cope all by ourselves. Before my son was born we ran a business, but the nature of the business was not compatible with my son's difficulties and this meant that we could no longer continue with it, my husband got an alternative, extremely poorly paid job and we ended up having to sell our home and moving into the business premises which proved unmarketable. We are still living there, 10 years on and this causes immense problems because it wasn't designed to be lived in and is way too small, hasn't got proper rooms and is just not suitable as a place to live. We are also still repaying the money we owe the banks from the collapse of the business and will be for the rest of our lives. As a result of this my husband's health declined and he had a year of work sick and has never really recovered.

 

 

Location in the country

 

West Midlands.

Edited by Tez

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Hello Tez

 

I felt very moved by your answers. You sound quite remarkable and still able to see fairness and appreciate those who have tried to help.

 

Thank you very much for the reply, I am very grateful.

 

x

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It is very, very, very important that any figures that are presented can be verified, substantiated or otherwise checked. Otherwise what you present will be dismissed as parental anecdote. Even though there are some useful studies that show parents as accurate and truthful observers of their children, anecdotal evidence just doesn't cut it.

 

One of my favourite techniques is to use official government stats to make a case. There are two very useful websites - the National Statistics one and here I've pulled up a mental health report which shows 1 in 100 aged 5-16 have an ASD. Also note the interesting comment about income for families with an ASD.

 

http://www.statistics.gov.uk/CCI/nugget.as...Rank=2&Rank=208

 

You can often 'drill down' into the full report and come up with all sorts.

 

The other useful one is the DFES research & stats gateway.

 

http://www.dfes.gov.uk/rsgateway/

 

You need to be familiar with DFES jargon. Autism doesn't get you very much, but SEN does. As does Exclusions. In this example pupils with SEN are four times more likely to be excluded than those without. I was also surprised to see that a pupil is more likely to be excluded from a special school than mainstream.

 

http://www.dfes.gov.uk/rsgateway/DB/SFR/s0.../SFR23-2005.pdf

 

The great thing about the DFES data is that you can get the excel spreadsheets which will show your local authority's data.

 

Once you've got some indisputable facts, then you can put meat on the bones with some Case Histories.

 

So my advice to you is don't spend time trying to compile data, get some really good stories together that illustrate the points you are trying to make.

 

The other thing that seems to work remarkably well is finding evidence that a neighbouring borough is providing much, much more and shaming them into making better provision where you are.

 

As does using central government initiatives and good practice guidance.

 

If you look hard, there's probably a group of parents all doing this locally. Your Parent Partnership service could probably tell you who they are.

 

I do from time-to-time accept commissions from various people to 'map' research, etc, so I do actually know what I'm talking about.

 

Hope this helps.

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I have assured her and again assure you that this information will be completely anonymus

 

How can it be anonymous if we all print it here? Even if we have users names many of us know who the person is behind the indentity. There are many issues surrounding this kind of information -one being data protection.

 

I am probably one of the most ACTIVE and also AGGRESSIVE Campaigners on this forum and I do my fair share of touting, but if I ask for specific information and parents to fill in our questionnaires then I always give an alternative addy to forward the information to.

 

This forum is not an Activist Forum although there are several activists here - me being one. But I would hate ever do so something that would impact on the forum.

 

Probably opening up another hornets nest here but I have to share Nellies concerns.

 

Carole

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I am not an activist and I do know what I am talking about. If we were all succeeding following the usual routes none of us would be having problems.

 

I dont know who you are and you dont know who I am. If you feel you cannot trust me then you are not under any pressure to tell me anything. That of course is your choice.

 

Like I said and I will say again. I am trying to find another way and simply gather some basic information.

 

Maybe I am a fool and a wishful thinker but if no one wants to respond or join me in this then I will have learnt that there is no need and no one else agrees with me.

 

If that is the case then, job done, I will not bother persuing it. Perhaps if there is little response I will realise that everyone is quite happy letting this take its time and happy with things jogging along.

 

I have had to keep going through alot of rough stuff and simply hoped to help others. I am only sorry it has caused such negative viewpoints.

 

I watch the news, read the papers, my son is still out of school after 10 months. It does not seem to me like much is happening and by the look of what I have read here and other similar websites so far there is little evidence that much is likely to change.

 

This is obviously a great place to chat and mull over things and should not be spoilt by anyone but as it would appear so many Asperges parents are house bound its not exactly easy to meet them any other way.

 

If anyone would like to correspond with me they can send me private e mail to my e mail outside of this site.

 

It would appear that that may be better received.

 

cmagic@ntlworld.com

 

Apologies for the offense and disgust this seems to have caused but I will not apologise for at least trying.

 

Hey ho !

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Maybe I am a fool and a wishful thinker but if no one wants to respond or join me in this then I will have learnt that there is no need and no one else agrees with me.

 

If that is the case then, job done, I will not bother persuing it. Perhaps if there is little response I will realise that everyone is quite happy letting this take its time and happy with things jogging along.

 

Bothered, if you really believe this is how parents here feel, then you completely misread the situation. Many parents are in the middle of battling with school issues, health and professionals and difficult behaviour and cannot think beyond day to day survival let alone find the energy for a bigger fight. I'm sure you know yourself how that feels. Those who can, do, Carole is one of them and there are many more on this forum who are actively campaigning and helping others.

 

I do share your frustration at the pace of change and I appreciate what you've set out to do. I would be happy to email you my story. I also have concerns about too much heat being turned on this forum as it is such a valuable support for so many of us and we wouldn't want anything to jeopardise it.

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As many long term members will be aware SEN provision and parental experiences/expectations is the subject of my dissertation. Many of the questions you ask are similar to those I used. It's a great idea the only trouble is for the information to carry any weight you will really need to provide (if challanged) with your research methods and how the data was collected.

 

My dissertation was due this week, but due to various problems I have had to ask for an extension. As soon as it has been written up and marked I will happily publish the facts and figures I have collated.

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I once wonted to collect hundreds of letters and deliver them at 10 downing st. so you're not a fool.

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I do understand that parents are exhausted and find it hard to take on anything further. I myself am in the same situation.

 

However, perhaps it would be interesting to go the extra mile.

 

As I keep saying, this is completely up to the individual and judging by the big response to my private offer of my own e mail some do wish to go a little further.

 

I would only encourage anyone to contact me privately as this seems to allow everyone to feel its not to do with the site here.

 

Thank you for your responces.

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Hi Bothered :)

 

I genuinely do not think that this thread has caused any 'offence' or 'disgust'.

 

Which responses make you feel this?

 

Bid :bat:

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However, perhaps it would be interesting to go the extra mile.

 

My husband actually went an extra 2500 miles around the UK to raise awareness and was followed by the Media right across the UK. He ended his journey at the House of Commons with 6500 signatures from parents, carers and people in support of a national 'Call for Action'. The signatures were used to petition parliament. At best we managed to apply pressure to the APPGA who came up with a Manifesto for autism. It is so :wallbash: But we go on.

 

Believe me I would not be put off if I were you. My Co-Founder of AIM and I were actually warned off by the NAS and that just made us all the more determined to go that extra mile and start AIM. We now sit with NAS at meetings. Why? because we quickly found out that NAS are the only people who Ministers actually listen to. Like it or not it's the Government that affects change. Again I find that :wallbash: But so far I have not found a way to change this situation.

 

Maybe you will - I hope so - it matters not who brings about the changes that are needed only that they happen.

 

Good Luck

 

Carole

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Go for it, but be prepared for a lot of work! I'll happily chip in with what I can to help. The more voices being used, the more chances we have of being heard.

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Hi bothered -

welcome to the forum...

Before I say anything else, I'd just like to reassure you that those who have already posted do care as passionately and as sincerely as yourself about the state of the education system and it's treatment of our kids, and about the lack of responsive, needs led services for all people on the spectrum (or with other disabilities, come to that).

You'll also find that most forum users (almost 100%, I'd estimate!) share your frustration at the speed with which the established 'lobby' groups (NAS etc) move, and would hope to find a faster, better method of getting those that need to to sit up and take notice.

So, no conflict there then, is there!

Now, having said all that, I've got to say that while I admire your determination and 'up and at 'em' ideology, I also know from YEARS of this cr*p myself that in the long run it achieves very little... The only way to win with politicians (and believe me, whjatever you might think about your school head or your LEA it is the POLITICAL climate that governs their decisions) is to play them at their game, and that means by dotting every 'I', crossing every 'T', and making sure that the information you put to them is cast iron.

Information of that type IS already out there, in far greater quantity and with better credentials than you could ever hope to gain from this or any other internet forum. That's not being negative or deliberately challenging, it's just how it is...

As a final thought, I'd also like to say that for every aspect of the ASD 'debate' there will be a forum with a particular 'agenda'... Nothing wrong with that per se, but the reason i like this site so much is because it trys so hard NOT to fall into the trap of seeing things from only one angle, and disenfranchising people who don't share that perspective as a consequence. That's not fence-sitting; it's what a support network SHOULD be - a place where anyone can come and air their views.

Many of the users of this forum use other forums as well, and share information about those sites (links included) freely, so that those who are interested in taking a more active stance on ANY aspect of ASD, can be enabled to do so...

I hope you stick around to find out just what this site HAS got to offer, because for my money it's pretty unique. I'll guarantee (pkt of hob-nobs if you can prove me wrong!) you will find like-minded people, and you will find it a useful and reliable support network whatever your concerns might be.

L&P

BD :D

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If anyone would like to correspond with me they can send me private e mail to my e mail outside of this site.

 

It would appear that that may be better received.

 

cmagic@ntlworld.com

 

Apologies for the offense and disgust this seems to have caused but I will not apologise for at least trying.

 

Hey ho !

 

Hi bothered

 

Just to add the hosts viewpoint :-

 

The forum is open to the public and any postings on this thread are viewable by guests as well as members.

 

Members should always be mindful of protecting their identity of a public forum.

 

Any messages on the forum are solely the personal opinions of the authors of the respective posting and in no way represent the stated view of this forum.

 

Providing these points are taken into account, your suggestion and request in this thread is perfectly acceptable for the forum.

 

I am sure you have not upset anyone with your posting, but rather to the contrary you have opened a healthy debate and in addition received valuable feedback and advice.

 

Kind regards

 

 

 

Lufty

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I maybe new here but am certainly not new to the subject. I have received alot of positive feedback and only feel slightly sad at the numbers of warnings of how things will not work.

 

I do not dismiss or belittle anything anyone else does or says.

 

I am in favour greatly in rewarding and recognising those on "stateside" who have done well in supporting myself or others. I am not on a personal crusade and out to get revenge. I simply believe that we must stop being put off by so many warnings by many to not do anything.

 

As I said before I am simply trying to reach people who are interested in letting me know a few details and in no way wish to jeopordise anyones personal progress or support.

 

I have a child with Asperges who has been ignored and disregarded.

 

I have worked in a special needs school and helped many parents and students alike. I have seen the progress that the right education brings not only to the student but the whole family. I have also seen what happens when that falls apart. Often not because of the student or the family but the professionals involved.

 

I do not dispute that many peoples hands are tied as they are at the mercy of government policies but I do not accept that SOME of these people have acted entirely within their job descriptions.

 

I have taken alot of what has been said as good and helpful advice but I do feel that some comments were negative. This of course could be my perception and I am prepared to leave this to others judgement.

 

We all work in our own ways and as time marches on all our children grow older. By the time they are 16 it is no longer law to educate our kids. I have been battling for ten years and have yet to see results. If this continues and I play it the normal way it will be less time than that that I missed the window of opportunity.

 

This applies to everyone and as a parent and teacher I find it saddening that so many young people will end up labelled as trouble makers, in care, in special units etc because nothing changed quickly enough.

 

I am not saying my thoughts are unique, far from it, it is warming to see, though sad, that I am far from alone. Something from my work I knew anyway.

 

I will march on no matter what, why ? because through the years after one suicide, one child put in a secure unit, one family torn apart, and one person suffering a third mental breakdown and knowing that these were each just one of many many more makes me want to continue finding a way.

 

These situations are not uncommon I know but when you actually know they are the result of the wrong care its hard to turn away.

 

Luckily for me, though still trying to achieve for my son, we may finally be getting somewhere, this will not be our story. What I cannot escape from is that that is not the norm and more does need to be done.

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I don't think people were/are trying to warn you off trying. I think it was more a case of letting you know the sort of poblems you will face. Don't take it a s people trying to put you off your goal. Go for it. Just be prepared to have doors slammed in your face and questions go unanswered etc....it's par for the course!

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