westie

Hi I have a niece who is almost 9. She has been assessed and diagnosed with dyslexia and dyspraxia, and is waiting to be assessed for ADHD/ASD in near future. Her problems were not picked up until she was 7, and her main trouble is that she is having significant difficulties with reading and writing (assessments have put her at age 6 - the lowest score she can be rated at). At her primary school she is on school action plus. The school refered her to request that she attend for some hours per week a special reading scheme at a special school in the local area, however they have refused to do this as (in summary) the school have not worked with my niece using special reading plans recommended to them (school say they do not have these special things in their school) and that the school also do not have any objectives which are working towards her achieveing some improvement in reading/ writing. Nothing they have done so far has made any difference. Also that she is so easily distracted that their scheme may not be suitable. Her school have told her parents in meeting that they do NOT BELIEVE in IEP'S so she does not have any! Now am I mistaken in believing that if you are on School Action Plus the school must do an IEP and review regularly? Another thing is that they will not help her further and have just told her parents that they will have to try again in another 6 months to try and get her on this scheme. So basically they are doing nothing. Meanwhile she is having more problems behaviour wise (its starting to come out now) and being teased etc by others. They also told her parents to get assessment for ADHD/ASD at CAMHS but told them to go to GP and ask them to refer as the school/ SENCO could not make such a referal, I know this is a load of rubbish as the SENCO at my sons school refered him to single point of access team to get a referal to CAMHS for anger management counselling (he is statemented and has been since reception). I just cannot believe a school can decide they do not believe in IEP's even when they are getting funding to help kids with special needs, and could generally be so unhelpful !! Can they refuse to do IEP's or is it breaching some regulation or other? (this is same primary school I attended. I was in a wheelchair/ in a calliper as I had Perthes disease as a kid and the school were brilliant then, things must have gone downhill a lot since - mind you it was some time ago! ) Thanks

Hi My youngest son is being assessed for ASD's (looking likely reading reports done so far) and I just wanted to get your opinion on whether these could be "tics" or something else? A few months ago he would sometimes roll his eyes back in his head (not all the time or on a regular basis but it happened a few times over a few weeks. Also around same time he would sometimes shake his upper body, holding his hands near his chest and in fists. It would last a couple of seconds and not sure if the eye/ shake thing has happened same time. He did not appear to lose conciousness or anything, once it happened while his dad was carrying him into a shop and I am not aware of any common thing happening at that time. Now the other day my hubby pointed out that he would sometimes just stand up and shiver (like when you get the chills for no apparent reason), again only brief. We noticed quite a few times yesterday and I have seen it once today... He does hand flap and clench/ unclench his hands a lot, or rub them/ wring them together. That is one of the unusual things I commented on when I asked HV for advice.... Thanks!

My son has Pathological demand avoidance and he too seems to have good imagination, but he does not have flexibility of thought - i.e. can create imaginative scenarios but cannot incorporate others ideas into the scenario - causes problems when playing with other children his age, as he tells them what to say/ do etc. It took 3yrs of assessments at CDC and others before we found a diagnosis (was behaviour problems and although he has features of AS not enough for diagnosis) My son was assessed and formally diagnosed by a centre in Nottingham who speciaise not just in PDA but in communication disorders in general (and have expertise in ASD's) so this may be worth a look if you want another opinion... Not sure If I am allowed to put name so if you bothered pm me.

I remember phasmid very well and was so sorry to read this post. Mrs P. my thoughts are with you and your family. Ken was so knowledgable and helpful, and he will be sadly missed by myself and many others on this forum. Debbie

Hello J's mum Could you take along some info. to the communication centre regarding PDA? If nothing else it will make them aware it exists and may prompt them into learning a little more about it! It seems to be hit and miss as to whether certain medical professionals/ schools/ LEA's recognise it. I am lucky in that LEA recognise it, but local CAMHS did not a couple of years ago (although someone told me that they now have someone who has trained and has some knowledge of PDA now). There is a PDA forum which has a lot of other useful tips from other parents on various issues so may be worth having a look if you havent already. I can pm you address if you wish. It may be worth a look, although my son like a lot of other PDA kids will soon get fed up so you have to change tactics fairly frequently! My son also does not like writing. He has low muscle tone and it hurts him to write for a long time (he had OT assessment a couple of years ago and they told me this, that is why he slumps on his desk, so his body is more supported) his handwriting is not good at all, and he has trouble with space between words/ staying on same line, and despite his first initial being J, he often writes it the wrong way around. So he gets mad and rips up work sometimes and you have to stand over him and encourage him if you want to get homework done (and is probably even worse at school) I hope that you get the help and support you need, whatever diagnosis turns out to be. Take care Debbie

Find link to leaflet explaining what PDA is? what does it mean for my child? where can I go for help? and where can I get more information? Useful for parents and families of children diagnosed with PDA http://www.themazegroup.org/files/PDA_leaf...ntsfullcopy.pdf

There is a book called: Aspergers - what does it mean to me? It was recommended to me by a professional and it has worksheets and chapters on many topics including friendship. I bought my copy from Amazon Some further info: Aspergers.... what does it mean to me (a workbook explaining self awareness and life lessons to the child or youth with high functioning autism and aspergers. Catherine Faherty is the author, ISBN188547759-7 It is a workbook for the child and the parent/ teacher to look through and complete TOGETHER (not just advice for parent/ teacher). Chapter 1 covers topics such as "how to use the book", "strengths and talents", "autism is a thing about me", "what is autism", "Why do I have autism" and "was I born with autism". Other chapters cover "ways of thinking", "The sensory experience", "Artistic talent", "people", "understanding", "thoughts", "communication", "school""friends", "feeling upset" Many topics are covered within each chapter, pages which are a workbook for child and parent/ teacher to complete, and also some guidance and info. for parents and teachers to read about how to introduce the topic and work with the child to help them learn.

My son used to be violent (physically) at home and school, not so now at home but is still at school and just got referral to CAMHS for anger management therapy, starting later in month. He is still verbally aggressive at home on occasions. At minute is around bedtime as he does not want to go, however I persist in making him go at the agreed time no matter how he goes off. He is expert at delaying or disracting techniques having PDA but I have to try and ignore it and press on. This means I have to be near him all time to make sure he is brushing his teeth/ getting pyjamas on but he gets to bed almost on time! It helps me to keep him calm by using indirect instructions: Would you help me with....., I bet you can't....... and with homework I ask him to choose a time to do it, and then when it gets to that time if he starts protesting I say that is the time you have chosen and if you do not do it then you cannot play on computer/ your friend. Then again I have to stay with him to ensure that it is done (and not ripped up) but he is doing it which is positive step. My son also does not like hearing "No", and I also use Sue's approach (i.e. not tonight but we can go on friday if you are good.... ) There are some good suggestions to try on this thread so hope something works. A couple of times at school have been worrying with him grabbing throats and (whilst waiting for CAMHS appointment) I bought an anger management book and am working through worksheets with my son to help him to identify what makes him angry, how he feels when he is getting angry, situations which may make him angry and how he could think about them in a different way to lessen anger, and last one we did was looking at a recent incident where he was angry, what happened, rating yourself and then looking at ways you can make your rating one higher in next situation. The book focuses on changing the way you deal with anger. Its called "Anger Management, a practical guide" He is worried himself and is trying to work with me even though he hates talking about emotions and things he has done in temper. Take care, hope you find something helps.

Hi Both my sons have low muscle tone and the eldest has very poor handwriting and gets tired quickly. (he is yr 4 and handwriting was 1b when he has last assessed at school. When he saw his OT she recommended a special kind of pen - its a Stabilo "Smove easy" pen and it is a really strange shape. You can buy then for left and right handed people, and they are on general sale. I have seen them in supermarkets. They cost about 4 or 5 pounds and come with refills. It may be worth giving them a try. I hope I am allowed to put the name up, sorry if I have broken any rules - if name gets removed then pm me and I will tell you what it is called!

also forgot to say that I know what you mean about people staring at you and making comments. Have been through it with J (still am) and now with C. One of J's friends is not allowed to play with him at our house any more as J is teaching him bad habits, however J can play at their house where this boys parents can keep an eye on him. What do they think we do then I have lost count of the number of times I have been walking home from school with J screaming and throwing himself about (when he is in Y4, and he looks older than he is). You can feel the staring and disapproving looks. I think I am going to try some of the suggestions/ responses given in this thread!

Hi, my 2yr 9mth son is currently being assessed, they suspect he has some sort of ASD but more assessment needed. He has issues with violent behaviour at playgroup ( he tends to push children over and then lay on them rather than bite and he is big for his age). An early years intervention teacher who came out to watch him at playgroup recommended the time out method when he is violent towards others, 1 min for each year. I bought a "time out" toy lamb which has a timer in its tummy - it can also be used when timing an activity to let a child know when it is time to stop (I wish they had invented them when my other son was small as he did not cope well when he had to stop or change activities!) I (and my childminder) have used it a few times after he has been violent and normally if you pick him up after such incidents he goes mad but the timer sort of distracts him. Afterwards I told him he was not to hurt others and that he had to sit with me until the bell sounded. He has complied whenever I have used it. Afterwards I tend to move him towards another toy or activity, but I have noticed is that once he has been "triggered" he is provoked much more easily for a few hours afterwards. It is early days but I am giving it a try as it can't make things worse! I agree with other comments that sometimes environment is so stimulating that it is almost impossible to avoid tantrums.....

What I meant is you get more tax credit if you are paid the highest level for care component of DLA, hope I have not confused anyone (other than myself!)

Hi, just to let you know that carers allowance payments do count as income for tax credit purposes (know because my hubby claimed this while he was a carer for my son and he had to get a letter from carers allowance place to send to tax credits as first year was not a full year he was paid it. Contribution based job seekers allowance and some other benefits are also classed as "taxable benefits" for tax credit purposes.... However I understand that if your child is awarded highest rate carers allowance you get more tax credit - I imagine you were told this when you informed tax credit line...

Amanda, I have only just seen this thread. I am so sorry to hear about your loss, and wanted to say my thoughts will be with you and your family today. D

Think rach04 means Request for Statutory Assessment (for special educational needs) - though please correct me if I am wrong! rach04 - can understand why you are so frustrated -if you have been asking for feedback for so long and they have not told you most of this! I personally would send in your request too - I have been told they sometimes do not listen to school, but if you and the school are sending reports (perhaps you could get together and send both reports in support of your application??) they may take note. From what you have posted I would hope so. When I asked for J to have an assessment I put loads of details and included reports from medical people etc - anything which supported my points especially if someone outside family - and a lovely early years special needs teacher also sent an email in support of my application (giving reasons obviously). They send me a letter short time afterwards and he was given statement, and has been supported ever since. I hope that with school behind you they may carry out the assessment and give you support too. Hope you get results you want D

earlier this year we went on a school trip to a water centre (they generally ask if one of us will come to support J ) and whilst the man was explaining about the importance of drinking water I heard a little voice pipe up "my dad likes drinking whisky, but only when he lights fires"!!!!!!!!!!!!!!! and all the teachers/ other parents turned to look at me. I laughed my head off, but it makes me wonder what he says about me when I am not there! Just to clarify my husband is not an alchoholic pyromaniac, honest Also to say in response to your post Caroline, I imagine it was awful at time and glad you managed to sort things out with school/ SS.

bogies!!!

home

pm'd you hope it helps! Debbie

sounds a lot like my eldest who has PDA!!!! he was originally given EBD diagnosis as although he showed some ASD traits they could not firm diagnosis to aspergers or similar. When he was assessed at the xxxxxxx they completed this checklist (we filled in questionnaire) and it has some different categories and if you score lower than specific amount in specific areas and then some other scores meet certain criteria it can indicate a pervasive development disorder. I have a report with some details in about the scoring areas (can PM you if you want me to tell you what they wrote about him) but have not completed scoring myself so cannot be more help From what I remember the questions were things like "does he understand things like"he bit my head off" or things like how does he explain things to others??? which when you think about it all are things which someone with ASD or communication disorder find difficult to do. I would say that a speech and language therapist would do this kind of assessment not school (can school not get advice from speech and language, or make referral??) Edited to remove the name of specific centre in line with Forum rules.Karen.

seems like very reasonable letter to me and you deserve answers! I have been following the threads and am sorry your hubby and family had to experience this. take care

There are certain things in my sons behaviour which did not "fit" with PDA and the person who originally suggested PDA said that he did have features of Aspergers (the more rigid behaviour in regards to which way to walk to school for example, and having lucky ducks all facing same way not really detailing PDA but more ASD) but as it is all part ofASD spectrum, and as kids can be diagnosed with more than one thing, perhaps they should cross over. This lady pointed out to me that it was important to address the behaviour or concern that is most affecting him and his progress, and for him it was the features of PDA, and this was the thing we concentrated on (and are still I might add - no easy solutions here, just lots of try it for a while and try something else when that stops working!) I hope you do find the answers

I agree with smiley! - when I sent in my request I sent hundreds of letters that I had and chased anyone for copies if I did not have a particular report and sent that too. My son has been statemented since reception (now yr 4) and his statement has been maintained, (for which I am truly thankful) I make sure I write a 2 page letter every year after his review saying exactly why we (J's parents) think they need to maintain his statement, after review meeting with school and I include comments about school and briefly about how he is at home as well so they get a full picture!) Good luck with your appeal hope you get the result you want

If applying for another house is an option perhaps you can speed things along by asking for a medical assessment form and this speeds things up a little ? (as your 8rs old has diagnosis could you base it on that, and ask your psychologist if he would support application? (My mum is almost 70 and has a lot of health problems not ASD related and we have just had to fill one in for her as I want her to live nearer me that is why I am aware of it.) I am sorry that no one will listen to your concerns about your other 2 being on spectrum, sometimes you just cannot comprehend how daft some people can be! <'>

I think that is a really good explanation, especially of theory of mind thanks! And my son does not really appear to see things from others perspective at all! Especially when he was younger (but even now to some degree) he plays games such as cars, or soldiers or other games like that, but he wants the other person to do or say things exactly as he directs "say this", "put that car there", "drive it this way", and did not like it one bit if they deviated from the plan in his head!!