westie

Pingu sorry to hear that This thread is making me think a lot more about this topic

MY son is statemented and although I am not an expert, a statement does not just mean that money is allocated so that your son can receive 1:1 support. The statement that you receive gives a list of objectives which could be many things. We also get a list of IEP targets which are reviewed every year. My sons school has used funding to access literature and training relating to the condition James has been diagnosed with amongst other things. Maybe the childs support would be used to allow support for some kind of therapy session/ social skills training session such as ' circle of friends'? I think that the objective of a statement is to allow the special needs child to receive an education and to access the national curriculum If your son does have a statement it would allow you to meet with the school and relate your concerns regarding his education. You can also learn about the targets that have been set. Also if your sons situation changes in any way you can pull forward a review to an earlier stage to ensure that the statement issued is still relevant (we pulled forward my sons by 6mths after he had a really bad start to year one (age 5-6). I think statementing is a good thing although the parents much strive to communicate with the school and ensure the support is being used as it should for YOUR child ( not to fund other children with problems but who are not statemented), I cannot see any Education authority paying more than necessary so you should ensure that the funding is used for your child. My viewpoint anyway Take care Westie

removed because I did not think my post was relevant to discussion

Hi, I have one son who is 7 and has been diagnosed with Pathological demand avoidance syndrome (part of the family of pervasive development disorders). James has both the MMR at about 14mths, and booster at age 4. I cannot remember anything significant happening at the time of his MMR, but there was no indication his behaviour was unusual until he was about 18mths old. I also have an 11month old son who will in the not too distant future be expected to have the MMR. We do not really want to leave him at risk of getting any of these diseases, but are worried in case it 'triggers' an ASD/PDD - I am not an expert but I know that these types of developmental delays can occur in siblings, and if it is a genetic thing who is to say that the MMR might not trigger some sort of reaction?? I cannot relate my eldests babyhood to my youngests (too far apart to remember many of things common to both). The only thing they both seem to share is that my youngest too seems to be wanting to never keep still now he is finding his feet, and he gets very stroppy when he cannot have his own way - probably like many other 11mth olds!!! What do others think? Are single vaccines better or just the same? Would a GP consider giving single vacciness if there is a sibling with ASD/ PDD? Anyone got any comments/ opinions to share. Thanks Debbie

lsw146, have you/ your daughters doctors ruled out Pathological Demand Avoidance Syndrome as a diagnosis? (it is part of the family of pervasive development disorders including autism and aspergers). For more information on PDA please go to website www.pdacontact.org.uk There is comparisons of PDA and Aspergers children and a checklist for PDA as well as educational guidelines for teachers. My son was observed to have features of ASD but not enough for a firm diagnosis of aspergers, however when we completed the checklist for PDA he fitted every box. Sorry to hijack this post on risperdal I was researching the medication issue when I came across your post. Do any of the posters on this topic have a younger child (around 7) who takes medication such as risperdal or Strattera? I am investingating whether any medication is suitable for my son who has mood swings and can get violent. He is also very stressed for most of the time.

HAPPY BIRTHDAY

Elenor/Noetic Thanks for your replies re my son who is nearly 6 and has been diagnosed with PDA. I havent replied earlier as I havent been on pc for a while and when I last looked at this thread I only read later replies and missed the replies to my original question! PDA isnt well known and we are finding it a struggle to find suitable strategies for behaviour management and are being passed from one place to another - the psychologist will not help us as they 'are not familiar with PDA' and has refered us back to a group who work with children and families of children with emotional and behavioural difficulties who have NO knowledge of PDA - we are waiting for a response from them. The school are also finding it difficult to get advice. We had an annual review (brought forward 6mths) on Dec 6th at which school said this was not best place for him really but in absence of any other school with better understanding of PDA (including special schools known to us in the area) it was most suitable school to keep him at.... So for now we can't get any advice on suitable medication as we just get passed from one person to another. We thought that a diagnosis means that someone will identify suitable advice/ treatments for a disorder but this isnt case for us. PDA isnt well known and understood outside Nottingham, and who knows how you get to speak to the experts there, let alone find a suitable school placement for him

Hello all. I wanted to ask your advice/ opinion on medication for a younger child than most (if not all) are who are discussed in this thread. My son is almost 6 but in behaviour at school appears to be much like Mikes son (before the medication). What is really worrying for us and his school is the violence which has been present since very early years, and any progress made seems to be temporary..... like cycles of behaviour. After asking our GP for another referal, we are waiting for a call from the psychologist to hopefully go and discuss with him the behaviours of concern and treatments or programs which may help. I am looking to discuss some sort of behaviour management, although the condition which my son has been diagnosed with (PDA) makes things more difficult in that area, or medication. I have read posts on here and on another forum where medication such as risperdol and Strattera have been used to reduce/eliminate behaviours such as violence/ mood swings etc in children with autistic spectrum disorders. I wonder if it would be a good thing to do now, or should it be after we have exhausted every other option, or thirdly we could look at medication alongside the other things which may be offered? I will be a bit scared of asking about medication to be honest, I don't want the doctor to think that I am looking for an 'easy solution' (from our point of view as parents, i.e if we can't deal with behaviour then medicate him), but I really do think that if the aggresive reactions were limited then he would progress much better in other ways....

just wanted to say that in previous reply I told you about my sons successful (2nd) DLA application. My hubby applied for carers allowance (he gave up his job last September to look after James) and checking my onlline bank statement found that the CA has paid some money (backdated to when he first was awarded DLA) into the bank! No official letter yet, but presume he has been awarded (or we have some mysterious benefactor who knows my hubbys NI number!) so I would also encourage you to get your application in now!

Thanks for that! Debbie

HOORAY! CONGRATULATIONS, HOPE YOU ARE CELEBRATING TONIGHT THEN!

just read jargon buster information, its much clearer now thanks. By the way it is an excellent page with lots of useful information and links!

I presume that to apply for this funding you need to involve a social worker? What do you have to do to get a social worker then? I will have a look at the jargon buster you mentioned, i did follow the link but the information did not really tell me what I wanted to know )well it is nearly 11pm and I didnt get a lot of sleep last night - thats my excuse and I'm sticking to it..

Well I cant tell you exactly but when we appealed last year it did not take that long a time for them to decide to turn down the appeal as well. I remember in the notes if you ask them to contact someone else for advice/ information regarding the person claiming then it instructed them that they were under no obligation to contact the person. BUT if you can get that person to write a letter, then copy it and send it in with your appeal letter then they have to read it dont they! (and saves waiting for months for them to contact the person, and for the person to reply etc). Good luck with your appeal and your other forms etc, sounds like you will be busy! Oh and love the pictures in your post, am not as advanced as that yet, but here goes....

Lasy year on the advice of paediatrician and other professionals I applied for DLA. At the time my son was diagnosed with emotional/ behavioural difficulties - an ASD was suspected but assessments were inconclusive as some behaviours were observed but not enough for a diagnosis. I copied all the information - it took ages to fill in! It was turned down. I lost heart and missed deadline for appealing but my paediatrician told me to appeal so I did anyway as at time I was awaiting a decision for a special educational needs statement to be finalised. I sent of appeal, explained that this was reason it was late, and sent the copy of the statement (as well as numerous other documents detailing his problems from age of 2yrs). The appeal was also rejected. I was sent a wedge of papers (copies of all statements supplied, application form and the medical/ professional reports obtained. Despite me asking them to write to the paediatrician and early years special needs teacher they instead wrote to my gp who has never seen my son regarding this problem, and to a nursery where he had been for all of 3wks and with whom he was showing his good side (that did change and they supplied another letter later but it was still rejected). The reports received did little to help my case and they did not contact the people I wanted them to. And the appeal decision stated that although my son needed help it was not as a result of a disability so he did not qualify. My son was diagnosed with pathological demand avoidance syndrome (and feature of Aspergers) in January. I was told to reapply and my mum told me to reapply once he was 5 as they often turned down younger children saying they needed no more help that a child of same age (as all children who are young need to be supervised). My niece is autistic, non verbal and was not toilet trained but she was turned down before age of 5). My husband gave up his job last year as getting James to school became a big issue so things were financially stretched. He was told to reapply for DLA and at end of july this year I filled in the form again. I used last years form for guidance, and focused on negative. I stated he had been diagnosed and included letter of diagnosis, information on his condition from PDA website and also part of a diary kept by the school detailing his (often violent and agressive and disruptive behaviour). I asked his teacher to fill in the page about him). I put on the form the speech therapist who has been involved with James from age 3 at his first visit to child development centre and who was knowledgable on PDA and on the effect it has on James. Last week we received a letter to say that he had been awarded the middle rate care component for 2 years!!!! My hubby also applied for care allowance at same time but about 4 days after they send back saying he wasnt entitled as my son did not get valid DLA allowance (even though it says on form to send both at same time) So now hubby will phone up and explain situation and hopefully they will reconsider application. Major thing that it says on form is that you cant get DLA just for having a disability, you must need more help that another person who does not have the disability. So just saying you have autism etc is not enough for an award, you have to go through everything you need help with (very personal and negative is how I found the experience - much the same as contacting LEA regarding James' special educational needs!) Sorry its such a long post, and best wishes to all those with DLA applications to be sent/ awaiting decisions/ appeals.

I am giving my son Efalex (hes on third bottle) not sure how much its working but it cant do any harm! (tried it myself - tastes lol, but he likes it)