is anyone around???

[bonkerz]

need help writing my letter of complaint about why i feel DS deserves a 2nd opinion.
have long list of problems picked up in report from CAMHS of traits i feel point towards autistic spectrum problems. Need help finding evidence on net which back up my claims.can anyone help?

so sorry about that
Was supposed to start my own thread in sn topic
sorry again!

thats ok!

bonkerz - good luck with the meeting tomorrow.

pellmell - have a look at this link

www.bookstart.co.uk/Parents-and-carers/Bookstart-and-different-needs/positive-images

also books based on the balamory series often have Penny Pocket whizzing around working at the shop etc in her wheelchair

SO HAVE PRINTED OUT THE CRITERIA FOR ASD AND ADHD AND THOUGHT I MAY GIVE THIS ALONG WITH CONNORS SCALE TO HEAD AND ASK HER TO FILL IT OUT. oops sorry ddnt mean to shout!
Also printed out the letter i sent to CAMHS with my resons for reassessment and will offer head a copy too.
Am taking copy of appeal request too to give to caseworker so she can decide if she can meet my demands or not.
What else should i take?
I have already asked the PRU teacher to bring along Dss file and behaviour log so i can have more evidence for CAMHS.

What should i be asking?
god im panicking. meeting at 1.30

Good luck for today bonkerz I hope it goes well. Whatever the MS decide about ds staying with them i would have thought they would be required to supply evidence etc about him as part of his reassessment. Fingers crossed

bloody hope so! just panicking about them not helping to get diagnosis so my thinking is if i take along stuff now it will save time later when we finally get our appointment

sounds good to me. Good luck!

Ooh just as I posted that you appeared

Don't panic you will be fine. You have convinced CAMHS that he needs to be reassessed which is FAB! I can't think of anything else you need to take - maybe a copy of his statement though they should have that with them anyway.

Good idea

yeah i have about 3 copies of the statement thanks to parent partnership who took the statment last week (all 38 pages inc evidence) away and photocopied it stating that the LEA might as well pay for it!!!

This meeting is to request that the LEA provides funding for his support is that right?

Hope it went ok bonkerz

well massive update......DS has Oppositional Defiant Disorder! Got a letter from Psych at CAMHS stating this as DSs formal diagnosis.

Meeting was ok. LEA taking DSs case back to panel on 28th April. As it stands the PRU have told LEA they cannot keep DS longer than 4 weeks and Current MS have said they cannot accept DS back as they cannot meet his needs. They have done a risk assessment and apparently on a scale of 1-16 DS scores a 32!!!!!!! All evidence shows DS needs autistic unit but LEA want to check if ODD is classed as an ASD...can you help with that anyone?????

No choice now but to wait till 28th although if i can gather as much evidence to support my suspicions that ODD is on AS then it will help secure DS a place at the unit.

So how do you feel now? Is it pretty much what you expected?

Oh Bonkerz I don't think ODD is categorised as part of ASD. If you put it into google, it seems that it more often goes hand in hand with ADHD than autism. But of course there are no ODD units, so maybe you could argue that an ASD unit is the "nearest suitable fit" to what your DS's educational needs are. Or to have a full-time shadow in school? I just went onto a site which gives you a list of characteristics of ODD, does you DS fit the bill?

Good news about the dx - this panel bollocks is getting ridiculous though - hope you're still pressing ahead with the Tribunal.

I would still go for the 2nd opinion from CAMHS though. Having read your letter about DS, I would have said that there's more going on than just ODD.

Plus, ODD is a bit of a descriptive label rather than one which actually leads anywhere. The ASD/ ADHD label, in your case, will help with the school unit, and I would have said that you have a good reason to ask CAMHS to check for the this again with the second opinion assessment. ODD does not count as ASD (though can be a co-morbid dx), and, as I said, doesn't really account for all of the issues that your DS has.

A child I know is dx with this and there are no services to address ODD, not like with ASD and ADHD, and nor does it officially count as a disability. So I think it's used to describe 'defiant child' rather than to signpost any actual help, iykwim.

It's moving though, at last! You should claim an hourly rate from the LEA for all the time that you have to put in...hey, that's going to go in a letter to my MP: force LEAs to pay parents for their time...they might start writing correct statements to save paying us for our time then!

How are you? Do you feel you made any progress?
Agree with AMM, in my understanding ODD is not considered an ASD. I may be paraphrasing excessively- I think it is one of those things that develops secondarily to other primary conditions such as ADHD - particularly when poorly understood and managed by those in authority!! I very much feared (and still do)for my Ds -- there is no doubt his behaviour is more challenging at school than home!
I do not know if ODD can exist without an underlyng condition such as ASD or ADHD.
If you think Ds has ASD 'traits' then perhaps you could argue that he needs understanding of his primary condition(s) even if awaiting full dx to begin to arrest development of, or overcome his overlynig ODD. Dont know if those thoughts help.

im researching right now and i think you are right ODD can not exist alone. It is closely linked to ADHD and ASD though and i have enough evidence to support my case that DS has ASD/ADHD and now we have ODD it will be hard for them to separate them TBH.
Im still going to go thorugh with second opinion and school are going to contact camhs with more evidence to support the criteria for ADHD/ASD. Am also still going ahead with appeal to SENDIST as my DS needs a unit. PRU cant keep him and MS wont have him back so he has nowhere to go and i wont let them put him into a 3rd MS school when hes already failed in 2!

"ASD can often be associated with other neurodevelopmental disorders (such as Learning disability and Attention Deficit Hyperactivity disorder) and other co-morbid behavioural and mental health problems including depression, social anxiety and Obsessive Compulsive disorder."

well i have just emailed my MP again and asked for his support and advice. we will see!!!

good luck Bonkerz!

I contacted the National Autistic Society yesterday to find out where ODD stands with reagrds Autism and the reply was this.......

There is a strong feeling that ODD and even PDD (Pathological) are in fact aspects of Autistic Spectrum Disorder.

So do you think this is a good thing then and means i can pressure the psych to atleast confrim DS has severe autistic traits????

that is very good, I wonder if they would put it in writing for you or is it on their website in the Q&A bit?. Sounds like you can make a case for an ASD unit and you might even be setting a precedent for others - it will be quite funny if they thought they were off the hook by giving a vague diagnosis, but in fact you now have proof that ODD is starting to be considered part of ASD!!

it was in an email to me from NAS. Have emailed back asking if they have any evidence to back up the statement and if they can post it to me.
Have also been quite sneaky and emailed the priory school near me which i visted before xmas. They have said they could Accept DS immediately on to a short term (3month) assessment placement where they will educate him and assess his needs in detail and they have told me to tell LEA they can offer this at a reduced rate because of the urgent situation! Also emailed the school we wnat DS to go to and asked how they stand and in light of yesterdays meeting if they feel they can meet DSs needs purely in the MS part of the school. I fugure if the new school say they cant then we have VERY good case for the priory school seeing as there is nothing else in leicestershire!

Terms used in the International

the following passage is from NAS website and may be the key i need to push them into a more detailed assessment and diagnosis!

Classification System that are applied to difficult behaviour

Conduct disorder
Oppositional defiant disorder.
These labels are most unhelpful. They simply name the behaviour without any indication of the underlying cause.

It is possible for a child or adult with an autistic spectrum disorder to be given one of these diagnoses if a proper history is not taken and the proper psychological investigations are not carried out.

If this happens the needs of the child or adult concerned and their family are likely to be misjudged, with disastrous results.