When is enoughs enough - and what then?

Hi Stfal,

I have been using this forum since I got diagnosed in May and I think your story is one of the most heart rending situations I have read about so far. My heart goes out to you and your daughter and I really do hope that you can look forward to a better year in 2015.

I'm not an expert in the issues affecting you and your daughter but I hope I have some ideas to add so that you can have more paths to chose from. Other opinions are available and I am afraid that I may suggest things that are inappropriate or worse - I am not blessed with the most PC approach but that is fairly standard behaviour for people suffering from autistic spectrum disorders! Please accept my apologies for anything that causes offence - I am really trying to help but may well put my foot in it at some point.

One poster on this forum earlier in the year went by the name of toothless community.autism.org.uk/.../24942 who described herself as severely classic autistic. She was diagnosed as having severe learning disabilities but was later diagnosed with autism and has been able to make considerable progress since the diagnosis. I think her story shows how worthwhile it can be to persist with someone who is behaving like your daughter.

You have been through a tremendous ordeal and I would expect you to be really struggling to muster any coherence in your approach at this point. There is a lot of experience and expertese on this forum from a number of people who have spent years struggling with parenting issues and others struggling with our diagnoses. It can be a bit of lottery about who is active at any one time but it is worth coming back here for advice and support whenever you need it.

Is your daughter able to describe her feelings and frustrations to you? A major strategy for anyone dealing with an autistic person is to try and see the situation from their point of view. From the history I suspect that, on top of her autism related issues, she has been traumatised by the loss of her mother and by the replacement with your second partner. Loss of a parent and any sort of replacement by another, however well meaning and loving person, is always going to be fraught with difficulties. For an autistic person it may well be far worse.

It sounds as though you have been rattling the cages of the authorities in your area. I think you can see that this is sometimes counterproductive. Have you attempted any conciliation or arbitration with the relevant people? I know that it is not your fault that things have got to this point but have you tried apologising for any offence that you may have given?

Hi Coogy

Thank you so much for your support and information, certainly makes me aware that I am far from alone in this.

My daughter has had  a full statement for 2 years now but the mainstream env was fundamentally wrong and so too was the skillset of the staff, did their best but did so mouch more harm than good by continuing to insisting they were the only place that could meet her needs when they had made zero progress in 7 years!! At 11 she cannot read or write anything other than her name, cannot recognise numbers beyond 10, has speech and language of a 4/5 yr old and cannot partake in normal classroom activities.

You are correct in assuming it is the education tribunal.  My failing is that the demands of my daughter on every aspect of our lives daily had preventied me from really being able to play the LA's game and fight them with legislation.  I chose the shouting from the rooftops approach which meant they ran rings around me.

IPSEA were good, but my life has been such utter mayhem that what I absolutely needed was a case worker and this could not be provided.

I first got assistance earlier this year from a charity and an advocate.  She knew her stuff but simply could not dedicate the resources to it and made things worse for me by failing to turn up to meetings with the LA, leaving me vulnerable and exposed.

I recently came across a non charging business organisation called living autism. I now feel that I have someone professional fighting my corner who knows the rules of engagement inside out and vets every piece of communication and has stayed up many nights assisting in putting my daughters case together.

I believe it will all hinge on the independent reports.  Sadly, I am coming down to the wire on getting these as my house sale fell through and I have a 50% chance now of releasing the capital in time.

She gets DLA.  I'm on sick pay and holding onto the belief that I need to return to my career soon as there is no way I could cope on benefits or part time work. This makes the future a bit of a no win really.  Carers alone I would qualify for but its no-where near enough. Don't work, cant meet her needs or mine, work and I cant support her in school.  She needs residential purely on educational grounds but the reality is that unless I can work full time I have no way of proppping her up much further anyway. Terribe shame.

Where do I Live - I wont name the Authority dealing with my daughters case on here but I personally live somewhere that's not to the west of London and starts with an E.

Cheers STFAL (must work on a more catchy name Coogy)

Hello again,

  I just found this. It maybe of some help to you.

http://www.carers.org/

Also do look at the option of support through DLA for your daughter and Carers allowance for yourself, if you havn't already done so. The carers Trust maybe able to help you with this. If she's not already in receipt of such benefits, it may go some way to enabling you to get the support she needs for the personal issues you mention.

Coogy

Hi SodThisForALaugh,

  Can I just say, my heart goes out to you. You sound like a Dad commited to your daughters ongoing support and future needs.

Can I ask (You dont have to answer) what area do you live? The reason I ask is that your circumstance sounds very much like my own experience with the LA during the process of getting my son support although it seems you have suffered the most extreme circumstance.

You don't mention if your daughter has a statement already at this point or whether your tribunal will include both tatement and placement.

I've given a fellow member a synopsis of my experience and some advice that may be of some help to you, but I must stress i'm no expert and since the EHC Plan introduction things have changed slightly. Perhaps you could read it. I'm assuming you are talking about an educational tribunal and not another type of tribunal.

community.autism.org.uk/.../29682

Have you been in touch with IPSEA? They are extremely good at supporting parents and offer guidlines on their site to help parents through the process. They did use to offer 1:1 support i believe, but of course this maybe affected by the cuts now. 

https://www.ipsea.org.uk/

Can I just say, that in my experience, tribunal are extremely child focused when it comes to proceedings, but you need to present your case in a very specific way. They hold good credence in private reports, despite the LA's distain for them and if, as you indicate, you already have a number of them, then it would appear you have a mountain of evidence including the reports from the care proceedings. I strongly advise you write a case statement of your own, if you haven't already done so, to support your perspective and how you have to manage at home. IPSEA will help you with that.

Like you, I've had to reach rock bottom, but please be assured, that with the right placement and a solid statement of provision, things do get better. Don't let the LA fob you off with an inferior provision either. I had to go to tribunal twice and threatened a third before they conceeded. We had to fight almost every element. In the end IPSEA helped me put together my own statement and they reluctantly accepted that, as the costs had really started to mount on their side. Tribunal also produced a damming statement issued to the LA and my sons School, which made even my Ed Psych's toes curl.

I wish I could offer you more advice, but I'm sure your legal team are better suited to that. It's dispicable how LA's treat some parents and the underhad tactics they use is morally reprehensable. I really feel for you. I was advised to sue mine, but frankly I was so exhausted by the end, that I couldn't find the strength. All you want is what's best for the child.

I know it's way to early to consider right now and I suggest you get yourself through this stage and see how you feel, but you may later want to consider taking it further. It's of little consolation, but suing the LA if tribunal find for your case, may help you rebuild your life or at least secure you something toward a new home, a new start or further support for your daughter.

Take care and keep us posted. Their are many here that will be a listening ear.

Coogybear

Thanks people...

I do not have any charities that are local.  The good ones a few towns away have been very good in providing access to material and tea and sympathy but they all keep telling me this is one of the worst cases of persecution of a family they have seen but they cannot offer any practical help that would benefit me.

I've been on to every media agency going and they all agree it is outrageous but cannot touch it because of child legal issues.

After a couple of false starts in the education arena I now have professional guidence which is a relief.  But the social care side, all i'm told from advisors is that they will never help me under any circumstances as 1) I beat them in Court, 2) It will cost a fortune and 3) They simply have no understanding of autism let alone provision and would rather destroy everything so they can remove my fight and make me go away.

I have complained to the head of the LA and this kicked up such a hornets nest of abuse I wish I hadn't.  The MP can only urge the LA to act apppropriately and they will stop at nothing to portray themselves in a good light and me in a bad one.  Apparently it is me who has refused offers of help.  They even laughed in my face when I broke down in tears pleading for help last year!  

What you've been through shouldn't happen.

I don't feel qualified to help.  I've tried to send a message to the moderators in the hopes that will bring someone qualified.  I think that can be done though I'm new here so not sure how it works.

The ideas I have are to contact your local paper or mp: they might be able to put pressure on to get you the help you need?

Is there a parents group in your area? Even if there isn't one locally, one fairly near could possibly give some support. They are often able to call on resources that you might otherwise have struggled to find on your own.

On the home, community and some other pages of the NAS website is a red/pink map of Britain offering search functions. It is a little sticky, sometimes coming up with London options when you've searched Bodmin or Carlisle, but if you scroll through and try various places, you should find something useful.