westie

sorry posted twice

It may be worth having a look at PDA and see if that fits/ seems familiar http://ccgi.pdacontact.org.uk/forum/ http://adc.bmj.com/cgi/content/full/88/7/595 http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=306&a=3352 it is a pervasive development disorder like autism and aspergers, and kids with diagnoses of ASD/ PDD NOS have been subssequently diagnosed with PDA.

Hi, this post could be about my son too! He is 8.5 and diagnosed PDA. Now in yr 4 he has taken a step backwards, and is refusing to do work, and the school I think are scared to push as he is being aggressive again. I also get feeling that they think he is just being naughty as he is not in "meltdown" at that point but is simply refusing to do the work, without being out of control and unable to respond normally. After the annual review meeting (he is statemented) I was thinking about it later I know that with PDA, kids try anything to get out of what they percieve as extremely stressful and anxious situation where someone is making demands on them, and a meltdown scenario is usually last resort when other strategies have failed. The teacher told me that he is very clever, and usually is good in science and history, but writing and numeracy he is not keen on (and PE) and is actively avoiding this. He spends 45 mins actively avoiding doing work and will then rush in last 15 mins to do it sometimes, or just not do it at all and was told that they were lucky to get him working 1hr per day, so he is falling behind. I know he is scared of making mistakes and has very low self esteem, and he has poor muscle tone so his handwriting is bad and he hates doing it wrong, will rip up work he is not happy with and this is partly why he avoids this kind of work, though he can reel of facts about egyptians etc. - if he has interest in topic he is good. We have tried a number of things to try and get him to do the work. School/ Behaviour support service are making referral to CAMHS for anger management or similar He is going to have a safe place to go out of the classroom when stressed - but there are going to be worksheets for him to complete with his helper - so he is not just opting out of working and using "stress" as an excuse to sit doing nothing! Also myself and class teacher discussed motivation to work, and at present we are trying a chart for recording when he has had a good lesson and done work with no inappropriate behaviour. That is 4 lessons and dinnertimes. At end of week he fetches chart home and for each face he gets 10p (or 20p for numeracy as this is particular issue). This is working better than nothing - not perfect each and every lesson but its a start. And I am always aware that this may become "passe" at any time and new techniques may need to be tried. Note he just gets nothing for no face - like the parenting books tell you to reward good behaviour and ignore the behaviour you do not want (obviously we would not ignore violence etc). In terms of homework I get the same at home, and to help I try and give him a "warning" in the morning that he needs to do homework and then ask him what time (3pm, 4pm, 5pm etc) then he is getting some choice in matter but he understands that it has to be done. At chosen time, if he then moans I remind him it was his choice to do it at that time, and mostly he does it but again it usually is 1/2 hr of distractions or moaning although occasionally he will get on and do it without all the fuss! If I can get him involved in decisions somehow (whilst steering towards result I want of course) then he generally finds it easier to accept. I am also trying to get him to understand that he is responsible for his behaviour and if he chooses not to do something there may be consequences that he does not like. - i.e. no homework, no playing with friends until is completed. The PDA forum (see link posted earlier) is useful to read through for tips - there are some good posts on helping a PDA child at school and maybe you can suggest some of the ideas to the school. I hope you find something that works (and if you do please tell us all about it!!!)

Hi, I would recommend phoning the school in question and asking for a meeting/ phone conversation with head teacher there and see what they think. My son was kicked out of a private nursery and I voluntarily withdrew him from another playgroup as his behaviour was extreme (towards others, biting a lot though other behaviours which were "odd"). I had put his name down for local nursery and before he was due (and a few months after concerns had been highlighted to HV, at age 2.5yrs) I was worried about sending him with no warning. An very nice and wonderful early years special needs teacher gave me some important and useful advice: to phone the head and see what they thought, and to write to LEA and ask for assessment for Statement of special educational needs. After discussing with head she told me that they would not accept him voluntarily without a statement as his needs were complex (at a certain age they have to accept him into some school but if he had been without the needs I think he could have gone there earlier than reception year). I did write,to LEA to request an assessment for him and the early years teacher supported me in my application by also emailing LEA in support and they did and assessment and he has been statemented from reception and ever since (and he does need this support). I am not sure whether your child does need this level of support or if you are not sure yet but I think it would be beneficial to contact them before as they too may suggest you ask for assessment or perhaps something else may come up that would be of benefit such as being introducted earlier/ more gradual when time comes for attendance. My youngest son (2.5) is currently being assessed and they think he may be on spectrum. The paediatrician mentioned enhanced provision nurseries and the like if he is diagnosed - never got that first time round so was appreciative of suggestion although like I said this lady in particular and the schools have been in the main very supportive regarding J, and remain so. Take care D

Hi My eldest was 2yrs when "extreme" behaviours were noted and he was assessed at child development centre over a long period of time. I too got referred and sent on a parenting course when James was about 4yrs old as another team we were referred to thought that because I worked full time I was not bonding with him and did not understand him (they also said that a behaviour management course would not work with him as he was looked after by someone else while I was at work and it would confuse him if we were trying to implement something that the others were not). So I attended the 12 wk 1 afternoon a week course and at the end they wrote to CDC and said they noted same behaviours we had described, could they please assess him for ASD!!! It is annoying I know but if possible could you attend to show willing and then you may find similar. It took until James was 5 to get PDA diagnosis and this was confirmed at age 7 by a visit to Elizabeth Newson centre in Nottingham. Interestingly my son who is 2 1/2 has just attended assesment at same centre and although his behaviours are much more subtle - to me - than James' were (apart from bad temper and extreme behaviour towards others) they think he has an ASD, as they have picked up stuff in the assessment although they want to do more assessments at nursery to confirm. I think the fact that my other son is diagnosed with a pervasive development disorder has made them look more closely this time. James had issues with going "wrong way" - different way to school/ grandmas house, walking round town, someone using "his chair" at hospital/ cafe/ nursery etc and was very possessive of toys, disliked being moved from activities unless it was his choice and his play was quite repetitive. He used to play this game called lucky ducks and when he picked them, they all had to face the same way and if you turned one facing opposite he woud go mad and turn it back again! The team do sound like they were a bit patronising - what the hell are you supposed to do if your child is hitting the swimming teacher take them in for another go - its obvious it was too much for your son (and the teacher, not to mention yourselves). Even now I sometimes feel I am getting it wrong and what I would like is someone to come live with me and show me how to do it properly!! (lets see how they cope ) Sorry you did not get the result you wanted. And of course please ingore the above if you feel offended by it, that is what worked for me (although of course at time I was livid that they thought I did not love or understand my son because I worked full time!)

My son has been diagnosed with PDA which is a pervasive development disorder like Autism and aspergers and although he appearas to be on the surface quite sociable he is not really able to interact properly with others and is more likely to tell others about himself or what he can do, rather than ask them about themselves or their thoughts and opinions. I think the best thing if you are concerned that is it impacting your like would be to go to your G.P. and ask him for a referral to someone who understands these conditions Good luck D X

It sounds like you have a lot to cope with and no support from the school or the authorities. How old is your son? It is terrible how unhelpful the school are being. If your son is disruptive at school he will likely be noticed by the other children anyway (sorry I hope this does not offend you but I know from personal experience as my son can be very disruptive at school and the other kids have noticed - luckily after a time they seem to take it in their stride and do not get so frightened - some do know how to press his buttons though so its not always perfect but most of the kids are really good) so I do not think that being "singled out" is a valid excuse for not giving him some support for some time during the day. I hope you do find a solution and I know that sometimes depression is not apparent to the person experiencing it, but I hope that the support you are getting from this forum is helping you, and that you do get some help from your doctor if you choose to go and discuss this with them <'>

Hi, I have just ordered "the incredible 5-point scale" and "when my autism gets too big", which are both books that detail techniques to help your child to regognise emotions and feelings and to deal with them. They were recommended by a specialist because my son has big problems managing and speaking about his feelings. Has anyone else read these books? What do you think? Thanks

Hi, I too think you should not wait for school to apply, but request an assessment yourself (and make school aware of that - maybe ask for a letter from them to submit with your request, although they will contact school to get views when they are deciding whether to make an assesment just in case they cannot produce something quickly) When my son was four the local nursery would not admit him without a statement, and his paediatrician said he would apply for me. I had to withdraw him from a playgroup due to his behaviour and I expressed my frustration to a local early years special needs teacher who told me that I had the right to request a statement. I wrote a letter (the example you have been given looks very good), and I send lots of supporting evidence in with it. In addition the lady who advised me to request an assessment also emailed the LEA supporting my request. At that time he was not diagnosed with anything other than emotional/behaviour difficulties. After reviewing evidence they agreed he needed an assessment, and things started moving forward with him being assessed by educational psychologist and other professionals. They found him to be above average intelligence, but he was given a statement in time for him to start in the foundation year. His statement has been maintained since then (he is now in yr3) because he still needs a lot of support with social, emotional, motor skills development etc. His SATS results were average for most areas, with above average for reading and below average for handwriting. What I am trying to say is that I cannot understand parent partnership saying that to you. In our area parent partnership are supposed to help and advise parents of children with special educational needs, and in my case this is what they did. Is it different in your area? Good luck with the application, I hope your child gets the help they need. Also I agree I think the school are not very understanding, and I think it is unacceptable that they have people working in the class who are not aware of his special needs. Also leaving a child to help/ deal with him while he calms down is not fair at all!

Congratulations and best wishes!

Those are excellent answers to the question an seem to explain Aspergers in an uncomplicated way. Also your later descriptions of "unexpected situations" reminds me of my sons reactions in some wats - He seems to expect things to go a certain way and will not be happy if they are different to what he is expecting. He can ask you a questions; listen to one word of your answer and then have a massive meltdown because in his mind you have said something completely different! For example he once told his dad that I had said he could go to his friends house, and his dad replied "oh did she?" and he started shouting and getting really mad - he thought his dad had said that he was not allowed to go... I often think that it is like he has his own little scenario in his head and that is what has happened, even if it has not been at all like that. Not sure if that makes any sense now, hope someone understands! Perhaps it is just me misinterpreting him...

Sorry do not have experience of PCOS so no info to offer there, although I hope you find some answers soon. Just wanted to say that one of my relations was having irregular/ no periods and she was refered for a scan/ blood tests. Scan was fine but she did find out that she has coeliac disease (gluten intolerance) apparantly if left untreated it can cause infertility. Although I think if you follow a gluten free diet it corrects itself. She only had one other "symptom" which she did not consider a real problem worth consulting doctors about, so it was a complete shock to her. Nearly every time I looked for info. on internet it mentioned that you lose lots of weight which was not the case for my relative, so I think that she would never have attributed her lack of periods to this condition. I think it is diagnosed via a special kind of blood test, although for my relative it was initially picked up by an abnormal result for a liver function blood test which led to further test including the coeliac disease blood test....

just do not wipe the music from the itunes library on your pc to free up space - the next time you plug in your ipod it will "update" the ipod with the music in your itunes library (none there as you have deleted it) so you lose all music. my hubby did this and lost more than 60 cds worth of music which he then had to add again! - just a few of the emotions he felt lol

Congratulations, and good luck!

Hi TN I agree with post above. You have been through a lot in a short time, but are managing to sort things out, and have done some very positive things such as getting to know your colleague better and joining the running club. Hope that you are feeling okay tonight <'> Debbie

That is FANTASTIC - WELL DONE!!!!!!!!!!!!!!!!!!! (and A in maths - what a star!)

My seven year old is diagnosed with PDA, we had assessment at The Elizabeth Newson centre recently. If you want to talk about anything specific please PM me. The PDA forum is also a help though its much quieter than this forum....

Congratulations and well done!!!!

WELL DONE ON WINNING YOUR DLA CLAIM In regards to your question about tax credits:- If you get child tax credit, then notifying them of DLA award will mean that on top of the "family element" which is about ?550, and the "child element" (which you get for each qualifying child) they also add a "disability element" and, if you get highest rate care component of DLA also a "severe disability element" for the disabled child (or children if there are more than one receiving DLA). I think any rate of DLA makes you eligible for the disability element but best to check to be sure. For actual figures go to tax credit web page and search for tax credit payments 2006-2007, but below is an idea. NOTE: The family element is paid to most families unless you earn a lot (think it reduces if your income is greater than ~?30,000, and you get nothing if income ~?50,00 or more) To work out what else you are entitled to: Add up "child element(s)" plus "disability" plus "severe disability elements" if applicable If you earn under ~?13.910 you should get full allowance - i.e. family plus child plus disability plus severe disability figures. If you earn over ~?13.910, per year then for every ?1 over this value, they take away 39p from the sum of the "child+disability+severe disability" value - therefore if your income is well above this you may not get any more than the family element. It used to be that you could go to tax credits site and calculate how much you were entitled to without actually applying, but the site was down last time I checked recommend to anyone to do this if they get it up and running again though. I am NOT an expert so do not rely on this - its just guidance, but it will not be a million miles away, especially if you go online and check actual figures for this last tax year DON'T FORGET THAT IF YOU RECEIVED DLA FOR PREVIOUS 6 MONTHS I THINK THAT YOU SHOULD GET THE RELEVANT TAX CREDIT BENEFIT FROM THAT DATE. ALSO, IF YOU LATER GET CARERS ALLOWANCE, IT COUNTS AS TAXABLE INCOME AND SO MUST BE DECLARED TO TAX CREDITS PEOPLE - IF THE ADDITIONAL INCOME FROM CA TAKES YOU ABOVE ?13,910 THEN IT WILL REDUCE THE TAX CREDITS A BIT AS EXPLAINED EARLIER; BUT CANNOT SEE THAT THE REDUCTION WILL BE MORE THAN THE AMOUNT YOU GET FROM CARERS ALLOWANCE... hope that helps, though is probably even more confusing!

Congratulations lisa, on the new job and on getting a place on the early years course.

Congratulations and well done!!!!!!!!

Hope the visit to the vets for stitches removed went okay, and you both enjoyed getting out of the house!

Yes congratulations and hope he does well at the driving Debbie

Hi Sam1414, would like to comment as follows:- If you have missed the deadine to appeal (which is I think one month) then do you have a reasonable 'reason' for doing that - I appealed a long time ago when I first applied - about 4mths late and I stated the reason was because my son was undergoing assessment at the child development centre to get a formal diagnosis and also that we were waiting outcome of a request for an assessment of special needs whilst at school (both had actually happened at time). They did give me appeal but we still lost appeal because he did not have a diagnosis, plus some other points. we did wait about a year and reapply and then he got awarded middle rate care (since then reapplied and got middle rate care and lower rate mobility. If you are reapplying I would recommend you contact Citizens advice or other organisation who can help you word the questions more like "DLA" speak. If you want I can try and help... pm me if you would like further advice. Remember its not the same person assessing every time and what one person thinks is not a case, another person will have the opposite view. And ALWAYS copy the completed form so you know what you have put, and put in statements/ letters/ info from professionals wherever possible which supports evidence on the form - they do not always contact the people you want them to - I found that out when I appealed and it said supply names of people we can contact - but we are under no obligation to do so - if you send them evidence with your application/ appeal they have to consider it. Also do not be afraid of DLA sending a doctor to see your child - they are not generally prejudiced and will listen to your case - and will see you are not exaggerating. A relative's child had a speech and language disorder and was turned down and on appeal a doctor was sent to the home who, upon asking the child questions immediately saw how much this impacted on their life.... take care Debbie

I did not know that writing all in capitals was classed as shouting. What other things like that are you not supposed to do? Anything else we should know about? (in case I do something to unintentionally offend someone)