IN!

[Clarkie]

Hi Folks,

 

Thank you one and all for all your support yesterday - it was a nightmare.

 

However, charge your glasses - the LEA have agreed the named school!!!!!!!!!

BUT

 

Don't drink yet....

 

They will not agree to the funding!!!!!!!!!

 

The LEA panel have stated that funding must be met 3 ways - with Health and SS.

 

Health have already said no and...well, you can just imagine what SS are going to say.

 

I can't believe they are now going to make him wait with nothing to do for an indefinite period of time. He's not being educated and they have a responsibility to educate him. It's still another month until Christmas.

 

We have asked that some emergency funding be put in place to allow him to attend the 3 day assessment at the school. They said they would get back to me.

 

So, even though it is going to happen which is a huge step forward he is still in the same position as yesterday.

 

So people, what do I do now?

 

Clarkie

Edited March 17, 2006 by Clarkie

[nellie]

Clarkie, <'> <'>

 

It must have been a long day. Great news about the school being named but they are playing silly games!! Get in touch with IPSEA immediately. As I understand it, if they name the school on the statement they have a duty to fund it. It's not your problem if they need financial support from SS and Health.

 

I think you might have to put pressure on them by kicking up a stink. Let them know that no is not an option!!!!

 

Thinking of you and yours

 

Nellie <'> <'>

[nellie]

Clarkie,

 

One other thing, if they take this course of action it would mean you would not be able to take it to tribunal. You can not appeal for funding from SS and Health. You could only take it to tribunal for LEA funding.

I would definitely involve IPSEA.

 

Nellie <'> <'>

[phasmid]

They have named the school. It is up to them to sort out the funding problem NOT YOU.

 

Get that bit of paper.

 

Once you have it it is your primary weapon. They will try to wriggle and squirm and insist that the others chip in...that is THEIR problem, the important thing to focus on is the fact that you have a statement with a school named on it.

 

Scream at IPSEA, your MP, the DfES, the Minister for education...anyone who can help that your child has a statement of SEN which names a school. Action / inaction by the LEA is now preventing him from accessing the educational provision they have clearly stated he needs AND is entitled to.

 

They name it in a statement - they are OBLIGED to provide it.

 

As I say get it in writing and scream blue ###### murder to get it!

[DaisyProudfoot]

Ditto Phasmid

 

He needs that release and quickly

[Clarkie]

Problem is - we don't have it on the statement yet. They gave us the proposed statement which was a waste of time so gave it back to them at the meeting last week with all of the specifics listed e.g. quantify time, who, how etc. The statementing manager says that at the complex cases panel today they stated that the school we wanted was agreed BUT it had to met by all 3 parties. I have just been on the phone again right now and she has confirmed that they will not agree emergency funding for the 3 day assessment. Also, the director of child services (or someone like that) is on leave until Thursday so by the time meetings are set up nothing is going to be happening any time soon. SS have also just had the sharp edge of my tongue (the wilkinson sword edge)

 

Thanks guys

Clarkie

Edited March 17, 2006 by Clarkie

[nellie]

You could ask them to finalise the statement allowing you to take your case to Tribunal. IPSEA will give you good advice.

 

Take care

 

Nellie xx

[phasmid]

Hang in there Clarkie. They will have the offer they made to you on the phone in eriting somewhere. Whoever phoned you with that news will not have been allowed to do so without permission.Thers is a paper trail of evidence now. They destroy that at their peril! Get making those calls - they cannot hold that funding gun to your head and use it as a weapon to prevent him getting what he needs. I have got to get some work done tonight (seriously behind after the weeke end), but rest assured if I find ANYTHING you can use to get this I will be straight on here to tell you.

 

You have won the battle....time to re-equip, We are going to win the war too!

[call me jaded]

Get your MP involved in this RIGHT NOW.

[Suze]

Clarkie <'> , big hugs things sound pretty rough at the minute, hope your holding things together.About the depression and medication......I suffer too and although I don,t take the medication your son has been prescribed , I,ve found what I take hugely beneficial, hope your family get a break of good stuff soon <'> Love Suzex.

[annie]

Hi Clarkie <'> <'> ,

 

Just letting you know that we had to involve IPSEA and our MP in our case. It DID turn things around.

 

While the LEA and everybody else are arguing in the background, there's a child without an education and depression, that is what everybody should be focused on. .

 

We're right behind you on this.

 

Annie

<'> <'>

[Noetic]

Congrats on the school, fingers crossed about the funding - seems totally bizarre to have them agree on the school, and then say "But we ain't paying"

 

I spoke to R's psychiatrist this morning and having seen him � last week she had already thought that R was suffering from depression.� He would not engage with her at all - in fact he won't engage with anyone except his nurse.� She wants to start him on Prozac until this mess is sorted out.

That is a good start - it really does sound like his moods are causing the most problems for him, to the point where without dealing with them, the best autism school in the world wouldn't make a difference.

 

However, I mentioned bipolar in the other thread, and if that was the case, there would be a chance of antidepressants making it worse if his moodswings are not dealt with as well. I'd talk to the psychiatrist about what to look out for, so you can tell whether or not it is working.

 

Ask them about a mood stabiliser, too (instead of the Risperidone perhaps - have you tried him WITHOUT it for a day? Sometimes antispychotics can cause more problems than they solve, so you never know if the Risperidone may not be making things worse), as they can often work hand in hand with antidepressants and allow them to work while at the same time preventing outbursts and autoaggression.

 

He is definitely suffering from depression - but filling a kid with Rispiradol and Prozac just to get him through the day because the agencies are bickering about money cannot be the answer.

I may be misreading you here, but PLEASE do not consider not giving him a chance with the meds just because you pin all your hopes on this school!

 

I am not having a go, but I seriously get the impression that R's problems with moodswings and depression go way beyond what you can blame the school for - if you think that once he's in the new school it will all just magically go away, then frankly you're kidding yourselves.

 

I'd really recommend you to post here: http://www.crazyboards.org/index.php?&&CODE=00 if you have any questions about medications and about what R's problems sound like. There's loads of people with both ASDs and bipolar as well as depression, self-harm etc. on there who know a LOT about medication and how it can help.

Edited November 29, 2005 by Noetic

[Kazzen161]

If education agree that the school is the most suitable to meet his needs, then they must name it and fund it (on their own if necessary). If they are saying X school can meet his needs, but you can have Y school if SS/health contributes (eg: towards residential costs) then that is different.

 

Karen

[Clarkie]

Hi there

 

 

Clarkie

Edited March 17, 2006 by Clarkie

[phasmid]

I knew I had something in the back of my mind that covered this sort of situation.

 

 

FOUND IT!

 

 

This is a direct lift from my dissertation (I have to put that in case they think I have pinched it from here...I'll just have to prove Phas is me if they do!). Anyway, I think this might help you a bit:

 

 

According to Wearmouth (2000):

 

�The basis of special education legislation is that of entitlement for individual learners.� (Wearmouth 2000 p124)

 

One particular point that Wearmouth (2000) highlights in this regard is the law regarding the funding of support for a child with SEN. The law is clear she declares: LEAs must address their provision for a child with SEN based upon the child?s needs, ones that have been assessed and on an individual basis. This support should be based upon ensuring the child is enabled to access the curriculum to the best of their ability. Not upon the basis of what either the school or the LEA feel that they can afford (Wearmouth 2000 p 124).

 

Wearmouth, J. (2000) Special Educational Provision: Meeting the Challenges in Schools. London. Hodder and Stoughton Educational.

 

Hope it's useful!

[Tez]

Clarkie,

 

I read your last post with tears in my eyes. What you say is so true. What is at stake here is a child and his family not a pot of money. I hope you get it sorted quickly.

 

 

Phasmid, thanks for the Wearmouth quote, another little gem in my notes for my meeting on Friday with the LEA.

[phasmid]

I ought to state the following:

 

According to Wearmouth (2000):

 

�The basis of special education legislation is that of entitlement for individual learners.� (Wearmouth 2000 p124)

 

"One particular point that Wearmouth (2000) highlights in this regard is the law regarding the funding of support for a child with SEN. The law is clear she declares: LEAs must address their provision for a child with SEN based upon the child?s needs, ones that have been assessed and on an individual basis. This support should be based upon ensuring the child is enabled to access the curriculum to the best of their ability. Not upon the basis of what either the school or the LEA feel that they can afford (Wearmouth 2000 p 124)."

 

The segment in quotes above is a direct quote from Wearmouth. The rest is my paraphrasing of what she follows that bit with, along with my own words. Should anyine want to use the direct quote (or more) please reference it to Wearmouth. I will type up the rest of that segment if anyone wants the whole thing.

[bid]

The Code of Practice includes provision for emergency placements.

 

Sorry, too knackered to remember the reference...help anyone??

 

Clarkie... <'> <'> <'>

 

Hang in there <'>

 

Bid <'>

[Kathryn]

Hi Clarkie,

 

I'm late to this (computer probs prevented me getting on earlier).

 

I am so pleased to hear that they've agreed to the school - at least the LEA have now acknowledged that it's the best place for your son and haven't tried to fob you off with something else. The fact that they're playing silly games with the funding- typical. I think you've been given loads of advice from some very experienced people here, and I'm sure you'll get there. Hope you're writing absolutely everything down- what's been said on the phone, what happened last night and the fact that you are in crisis, daily.

 

Keep the pressure on - we're all behind you.

 

love

 

K

[Clarkie]

Thanks All

 

have found the COP excerpts and e-mailed them to the Statementing Manager

Clarkie

Edited March 17, 2006 by Clarkie

[phasmid]

Glad you found that bit about emergency funding, that should help your fight.

 

I also know there is something in either the CoP or SEN toolkit that states the funding issue should not be the issue that decides the placement provision for a child (Which backs up Wearmouth -and my- point). I can't find it. If anyone has the time to trawl for this I think clarkie could do with the extra ammunition.

[phasmid]

DOn't have time to chase this one down (off to work shortly) so hope others can help with this. It might be worth checking through the following to see if it can help:

 

Education (Special Educational Needs) (England) (Consolidation) Regulations 2001 - appended at appendix A

 

 

I just put the highlighted bit into google and added '+funding' that got lots of links to follow up - There MUST be something here to help Clarkie and family. If anyone has the time to follow these up please do - I won't get the chance to do it today.

Edited November 30, 2005 by phasmid

[phasmid]

LAst post before work...

 

Clarkie, good luck today. Make the ###### listen to you. Moan and groan at them for all your worth. Phone, e-mail or doorstep ANYONE you think might help you. Just don't give up. You can win this one, you're just going to have to be determined.

 

Don't take the cr*p from them - any of them!

[Noetic]

We have spoken to the psych about bi-polar and schizoprhenia and she has totally ruled this out.

Hi,

 

I don't think Schizophrenia is anything like what you describe, however I'd suggest you at least read up on the link (about childhood onset bipolar)*, and on the Crazyboards forum - early onset Bipolar is as different from 'the usual' (i.e. what most shrinks will think of) Bipolar as Asperger's is from the "Rain Man" cliche, or from the "mute child rocking in the corner" stereotype of autism.

 

* http://www.focusas.com/BipolarDisorder.html

 

Bipolar kids are often insatiable for action, addicted to dangerous sports and need to be constantly kept busy, getting excessively involved - i.e. may flit, and start something else as soon as one thing is done, never sit still etc. - with several projects or activities at once (that is what often gets them misdiagnosed as ADHD), tend to have rages that last far longer than the usual "Meltdowns" and that are often triggered by saying "No" or come 'out of the blue'.

 

Agitation, suicide threats, swearing, lack of sleep/inability to calm down when agitated, periods of deep depression (but without the usual lethargy and listlessness that usually accompanies depression), self harm, abrupt and provocative behaviour, aggression and unprovoked, very severe (at the more severe end compared with most kids on the Spectrum - I know there is a stereotype of AS = aggressive but this kind/level of violence is not an intrinsic part of AS but often a manifestation of a comorbid mood problem, usually bipolar) outbursts are also very common.

 

Both stimulants (if ADHD is misdiagnosed) and antidepressants are well known for triggering mania in bipolar children and adults, and up to 30% of children diagnosed with depression are thought to actually suffer from bipolar rather than unipolar depression (i.e. being treated solely with an antidepressant can be risky if treatment is not closely supervised).

 

By all means give the Prozac a try because he really does sound like he needs *something*, but please do keep an eye on him and let a doctor know if he gets more aggressive or irritable ASAP. There's been comments on the Risperidone thread from people whose kids had similarly severe problems with aggression and violence, and in those cases Prozac threw them into mania and increased their aggression (Glad to hear that they are considering mood stabilisers - I have read many comments from people for whom these have been an absolute godsend! )

 

This article is specifically about how in particular symptoms of self-injury and aggression/violence in AS are usually a sign of comorbid problems, in this case Bipolar: http://ajp.psychiatryonline.org/cgi/content/full/159/1/13

(The case study is very interesting and touching/encouraging, although from what I know from reading parents' experiences, the psychotic features are often not present in this, so it might not be the best example)

 

I would also VERY much recommend you to read this article by Donna Williams, who has elements of this version of Bipolar alongside her Autism: http://www.donnawilliams.net/Articles/Auti...polarAutism.php

 

She also does very affordable E-Mail consultancy where she answers a lot of questions about specific problems a child or adult may have, and she's got a ton of great ideas abou behavioural and other issues (keep questions short and clear though, otherwise you pay for a lot of answers to things you may not have specifically asked for): http://www.donnawilliams.net/bookings/#email

 

She also has quite a bit of experience with Risperidone and similar drugs, having used them herself very successfully.

 

I'm glad to hear the Risperidone is helping, I was just asking because these kinds of drugs can lead to all sorts of symptoms, including depression and agitation. Doesn't seem to be the case with your son thankfully

Edited November 30, 2005 by Noetic

[Guest hallyscomet]

Hi Clarkie

 

I am sorry but I feel unsure about Prozac, it doesn't have a very good reputation where I come from. I know a few instances against it.

 

You mentioned

I spoke to R's psychiatrist this morning and having seen him � last week she had already thought that R was suffering from depression. He would not engage with her at all - in fact he won't engage with anyone except his nurse. She wants to start him on Prozac until this mess is sorted out. We don't know whether this is right or wrong and need any advice from anyone on this.

 

Please ask the Psychiatrist about Luvox it is so much safer, and much better for children like ours. I had a very indepth conversation about the two with my sons Paediatrician, not that my son was going to take it, but that the effects Prozac had on some members of my not so immediate family.

 

Please....Ask the Doctor to prescribe Luvox - my sons Paediatrician is recognised as one of the best in Sydney, and specialises in children with Autism, ADHD etc etc.

 

Please Clarkie, not Prozac, look it up on the web.

 

My son went through all these aggressive behaviours at 12 and Risperdal was the answer for all these Meltdowns, My son actually thanked me after a few weeks for puttting him on this. He said it was as if a wire in his brain had come loose and that he was unable to put words together, and so he used violence as a resort or desperation as kids were teasing him sooo much. So when he came home in a safe environment, boy did he let it rip. Often children when they reach puberty, if they are taking Ritalin and Catapres for ASD & ADHD it all of a sudden stops working. This is when Risperdal is better along with Ritalin.

 

At age 15 my son needed Tablets for Depression and Anxiety due to a bad reaction to the MMR booster he had at age 15. Luvox has no side effects, it got him back to school. We also sort ongoing counselling for 18 months with a counsellor who knew all about his condition, he needed to talk to someone other than me and his Paediatrician, I highly recommend it. My son always wanted me to stay there with him, and I learned so much about his world by sitting there with him.

 

Sorry Clarkie, If I come across a bit strong on Prozac but Luvox is a much gentler option for your boy trust me. Trust my sons doctor. I would even reconsider going to a doctor that prescribed it thats how much I fear it. Sorry...

 

Our prayers are with you, and many of these. <'> <'> <'>

 

Regards

Hailey

Edited November 30, 2005 by hallyscomet

[Noetic]

Another brief article on the use of Antidepressants in children with AS and aggressive/self-injurous tendencies, and on how mood stabilisers can prevent nasty surprises: http://ajp.psychiatryonline.org/cgi/content/full/160/1/184-a

Edited November 30, 2005 by Noetic

[Noetic]

Please....Ask the Doctor to prescribe Luvox - my sons Paediatrician is recognised as one of the best in Sydney, and specialises in children with Autism, ADHD etc etc.

Luvox is not available in the UK for depression and is usually only prescribed (under a different brand name) for OCD, as the original medication has been withdrawn from the market in the US and other countries.

[Guest hallyscomet]

Hi Clarkie,

I was thinking of you today, just wanted to send you some of these <'> <'> <'> <'> <'>

 

Regards

Hailey