westie

Hi, my eldest son is diagnosed PDA, and I also use the forum. I have posted a link to some new info on the NAS website which gives help and advice and some links. Margo the national coordinator is a great person to talk to, her son also 9 has a son with PDA. My son does attend mainstream at minute, he is statemented though. If you want to chat further please pm me with any specific questions. I can maybe help, or point out some info. on the PDA forum which may help if I have no experience of it. It is a bit of a shock, and PDA is harder to find information about but hopefully this may change. Regards Debbie

Hi, I thought this may be of interest to some others on here, it is a new information page about Pathological Demand Avoidance Syndrome (PDA) on the National Autistic Society website (its in the section entitled "related conditions") It is not at all like the previous info. which was on the site, please give it a read! http://www.nas.org.uk/nas/jsp/polopoly.jsp...581&a=17634

I can't believe this, it is terrible for the girl, and her parents that they have taken away her statement and are now trying to fob her off with inadequate support.�It is however� brilliant to hear what a supportive and thoughtful person you are being to her and her family, you are doing a great job.� I have experience of CAF forms. The school completed a CAF form when they refered my eldest son for "anger management" counselling after his annual review last year, and its a long form which lists questions about all the areas of a childs life and helps identify areas where help is needed from other agencies/ parties (e.g. it includes questions about early years, home life, health, learning etc. and my understanding is that it is used by multiple agencies (CAMHS, social worker, school etc) to share the information about your child and ensure they get the help and support they need and it was not there to replace his statement. I had to read and sign the form once it was completed to give permission for info. to be shared as appropriate, and I actually have a copy of it at home.You can also view a blank copy of the document online, and there is some explanation there about how the form is used. Will the mum be able to appeal withdrawal of the statement or is it too late???

Thanks Sooze2, your son sounds a lot like my eldest! He too points out unacceptable behaviour in others but can't see same rules apply to him too. I could try the wrist holding thing, but when I do hold his hand he often tries to bend and wriggle away, or he throws himself on the floor to escape my grip. Until recently, I did use the pram very often to try and contain him when walking anywhere (he runs off a lot and hates holding my hand, or he will refuse to walk) but he hates being in it and screams and escapes (I bought one of those 3 wheeler ones which fold up really small but its disadvantage is that is it fairly unstable especially with a tall 3 year old stood up trying to escape out of the reins in it!� It may be worth a try, though would have to go to the playgroup in the car because he would not sit in it to walk there and back, and I need all hands free when walking with him as he tends to run off, climb things, sit on the floor and refuse to move etc. - maybe this will all be familiar to you too!Hope your son is feeling better now.

Thanks so much j'smum and jlp for your replies, some useful tips (and experiences I too can relate to as well). As he is now at school I won't be taking him as much. Perhaps time out is not the answer, and distraction may be better to try for the minute. And J's mum your description of your son having things taken away from him by others is another thing I can relate to, with C other kids do also go up to him and take things away from him which can provoke a bit of an extreme reaction! Got to get him dressed for school now, and then get the tv off (he has been watching the same dvd for days and when he goes out he wants to carry it with him ) Thanks again

My youngest, C, was diagnosed ASD earlier this year. He has problems mixing with other children his age, and is possessive about toys etc and unable to share, this sometimes leads to aggressive behaviours towards others. I was taking him to playgroup 3 times a week as I realise it is important for his social development to mix with other children his age. One of the professionals advised me to use a visual timer and remove him to side when he was being aggressive, and I bought a "time out teddy" online. This worked for a while in terms of he would sit on my knee (bit of protesting), I would set timer and he would listen for it ringing before he could go back. However over past few months he has taken to wriggling if I try to remove him after he has been aggressive to another child (also accompanied by screaming and shouting) and if I persist in trying to move him he is hitting, pulling my hair, trying to bite (and sometimes succeeding) and headbutting me if I stop him hitting with hands and feet. He is a big 3 yr old, so it is not easy to carry him especially when he is trying to escape. Also having all the other parents staring (first at his aggression and possessiveness then me trying to deal with it)does not help. Last week he bit me when I picked him up to go home after he had been fighting/ arguing with my neighbours child and the bruise is still there a week later. My eldest started like this, from no aggression to being extremely aggressive to me and others (before my eldests diagnosis I sent him to a private nursery full time, and he could not cope with this and that is when the aggression started with him), and between ages of about 6 or 7 the aggression did wane to occasional incidents (always at school nowadays not to me or his dad because we have learned what triggers him, and not to touch him, or speak to him too much etc if he is mad or wound up plus he does not have to deal with kids pushing his buttons or changing teachers etc at home). Any suggestions of what else I could try to deal with it in this sort of public situation I would be grateful for. I am sure that many others have been through it and may have some useful things to try. As I said before, I had it with eldest and tried to struggle through, but second time around I am finding it harder to deal with and do not want to wait for him to mature a bit and for it to go away on its own - of course waiting may be only answer, but I do feel its worth asking you all anyway! Another thing I feel is because with eldest I did not do it right his pattern of behaviour was ingrained and it has been so much harder to try and get him to deal with things in a more acceptable way. What I am trying is not working now so I need to do something different/ better than what I know or have tried so far. I am also scared that C is going to start this at school and it will be a repeat of my eldest's school life (not too good, although could be much worse so I should be grateful) C has just last week started school in the afternoon's and nothing major has been reported so far, but I would not want him to be hurting teachers if they also try to remove him from situation where he is being aggressive to another child. Thanks for your help X

<'> I can sort of understand how you are feeling, as had same thing earlier in the year when my almost 3 yr old was diagnosed with ASD (my eldest has PDA), and it threw me even more than with the eldest. My life has changed so much since then, I dont work now and am a full time carer, and am still getting used to it. I recently started the NAS earlybird course which I have found really useful and meeting and speaking to other parents online and in person is a real help. Take care and best wishes D

I am thinking of you, its a brave and hard decision to make and I hope the foster placement is a success XXX

Hi I hope they both enjoy their first day at school and Joe gets the help and support he needs X Good luck to you too, I hope you have a nice day and do not worry too much (my youngest,3yrs diagnosed with ASD, starts nursery later in September so I will be feeling the same as you then. I have been told to wait and see how he goes though school did have meetings with me to talk about his problems and they were very good with my eldest who has PDA).

Hi, sorry they reached the conclusion they have, the team who assessed my kids were similarly qualified, but as well as the appointments at the hospital they also came to see him at home, at the childminders and at the playgroup he attends. I cannot understand why they do not always do this in all areas as it seems logical step to me...

I have put the video aspect of the course to the back of my mind..... Suppose I ought to tidy up a bit before they come, if everyone watches the clip (and make more efffort with the diet)!!!!

I think you have to have been diagnosed within 18mths so depends on how long since your little one's diagnosis as waiting for earlybird plus may mean its longer than 18mths???.... check on NAS web to be sure I have this right! I have not attended either course, but should be attending Earlybird course in September, so sorry can't advise which may be best. Sure others will have experience though so will be keeping an eye on the replies! (my little one is only 3 so don't have this dilemma myself) I am sure when I attended info. meeting about earlybird course the lady said you can't do both......

Good luck XXX

How horrid for your son. this boy sounds like he should not be sharing transport as he is a threat to everyone. And his parents attitude leaves a lot to be desired. Do you know if the boy will be coming back now (I assume the 3 day trial is up??). He obviously needs some sort of help but cannot be in that situation again as other have pointed out he sounds like a danger to both adults and other children. Sounds like the parents could do with some help too. I hope you get some suitable response from school and LEA. I would not send my son to school after something like that, especially with the knifing threats made as well. <'>

I am so sorry that you have had to deal with this. It must be so hard to have to keep them apart. I do hope you get some help from SS like direct payments or something and I hope you have had chance to spend some time with your youngest and that Kai has settled. I would have thought something like this would warrant a referral to a professional to see if something could be done to help him. Take care X <'>

Hi, at C's most recent appointment with the CDC they ordered some blood and urine tests for numerous routine tests they must do if diagnosis of ASD is made and other siblings are affected by something related.... Anyway a few weeks after I got a letter asking me to take him to the child clinic to have some more blood and urine tests as his initial urine test showed a higher than normal level of "an organic acid" and they wanted to do more tests to "assess the significance". I took him straight away and tried to do some research on internet but without knowing which organic acid I am no wiser, and the info I found was quite complicated - seeming to relate to overgrowth of yeast and metabolic disorders. Has anyone had anything similar, could it just be a one off or something? They told me it would be a while to do all the other tests so am waiting for them to get in touch - his next appointment at CDC will not be till October but I assume they will let me know before then if the other tests show up something..... Thanks

Hi, just to let you know I have just had a letter and we were awarded middle rate care for 2 yrs (until he is 5) so it was well worth filling in the form. I have put in a claim for carers allowance too as I gave up my job to look after him (and other son). If I get carers allowance, I should also be able to claim mortgage repayments insurance where they will pay 12mths mortgage, which is also very good news financially. I am really pleased - have plans to take him to tumbletots and swimming etc to help his co-ordination etc with the money

Hi, Congratulations and well done, you must be well pleased . Interested to ask whether you got a reply from the careers service (not that you need it now!)??

CAMHS means child and adolescent mental health service (I think) so yes it is psychologists/ psychiatrists and the like. My eldest has been referred for some counselling for behaviour management (he had an app. in Feb which was cancelled by then and still waiting for another but that is another story). It must be hard for you, as I have heard from lots of parents whose children are not seen as a problem at school (thats not to say that they are not experiencing problems just they are not seen) but then often have to let it all out at home. I hope that someone does listen properly and you find a way to get support at home, and meanwhile sending you <'> because we all need one every now and again Take care

I can relate to what you are saying as I find it really hard as well talking to school, doctors etc.; and I get really nervous about it as well. I tend to think that I am being paranoid/ over anxious or a bad parent/ doing something wrong. I think it take courage to ask for help and advice even if you feel like this when explaining things to them, and I hope that you get some help from the paediatrician for your DD. Are you hoping for a referral to CAMHS? Well done for saying your piece hope you have a less stressful evening

With eldest we referred to HV at age 2 1/2yrs, 1st appointment at CDC just before his 3rd birthday, PDA was recognised at age 5 and then confirmed at the centre in Notts when he was just over 7yrs. (PDA was even less well known at that time outside Nottingham, so he was a bit of a puzzle despite having numerous tests, and spending a term at the nursery at the CDC.It was only after the SALT had received some training and went through the checklist with us that PDA was mentioned) With youngest refered at 2yrs 3mths approx. 1st appointment at CDC age 2 1/2 yrs, diagnosed at 2yrs 10mths with autistic spectrum disorder.

Have just done "first draft" of the form and given it to a lady who is a family support worker who has a duaghter with AS and lots of experience helping people with DLA forms. I found it harder than filling in the one for my other son as yongest is 3 but wrote about his co-ordination problems due to hypermobile joints/ low muscle tone as well as autism and listed all the things he needs help/support/supervision with because of these conditions... waiting for feedback from her then will get the form filled in properly and sent off. I am also sending medical reports I have from CDC which are discussing assessment and difficulties they observe and recommendations they have made. One question: it asks for your childs NI number. Did most of you find this out or leave blank. I don't know what C's NI number is, and not quite sure where to find out. I think you have to ring jobcentre or Social Security office, is that right? Does it slow down process if you don't put it in?? Thanks

I have made my decision and am not going back to work (yesterday was childminders last day as she starts her new job next week). I was at work for last day after being off with eldest having shingles and school sending him home. I have been thinking about it all the time -what should I do? what will be best? and its making me even more stressed than I was before childminder handed her notice in the other week!!! I can't live with thinking about choices for another month, although they said I could take the time to sort something out. I am pretty sure I am making the best choice right now and at least if I have made a choice I can start planning finances, how to stop myself going insane and not wanting to go out or speak to anyone (I am having days where I feel like that which is not good) Although I will miss the people I work with my kids need me at home and this way I do not have to stress about trying to split myself in two when work/childcare/medical appointments/illness all clash..... In my contract I have to give 3 months notice, but actually gave a bit less than 2 weeks but what can I do? Its not like I am moving to another job, I have no one to look after the kids. I am sure they will be understanding though. My boss seemed to be when I gave her the letter saying I was leaving to look after them.... waiting for them to contact me as not had chance to see my dept. manager with being off with eldest, and boss was busy most of yesterday. Plus I was on verge of tears all day and could hardly speak to anyone. Most of people did not know I was going as it all happened so quick, and I could not talk about it without getting over emotional.. Anyway if I am posting loads on here now you know why!!!!!! Thanks to everyone who posted a reply, I really appreciate it

That is so sad, I cannot understand why anyone would do that to their child whatever their relationship with their ex partner. He sounds like such a &8$%. If your son claims AP has punched him in the face, and does not want to see him then I can't see how any court could take offence at you not sending him to see him, although I have never been through this myself so I may be way off the mark. I hope you manage to sort things out in a way that still allows your son to see his Nan as it sounds like he has a good relationship with her. Take care and best wishes, it can't be pleasant knowing that because of AP's actions you and your family are being put under the spotlight and I hope they (CPT) are helpful and understanding and get to the bottom of it.

Can men be carriers without being affected, or is it only women?