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  • Kelly
    Posts: 28
    Hello Everyone,

    I have just found this website and have been busy reading everyones notices.

    It means a lot to know that some of what we are going through is faced by others and that there is light at the end of the tunnel.

    My daughter, Georgina, is 6yrs old and I think she is wonderful... unfortunatley not everyone shares my views. her behaviour is at times very demanding and we are already on our third main stream school.

    We have managed to achieve a statement on behaviour so Georgina now gets 20hrs one to one support in school, I collect her each day at 12.30pm, but the medical diagnostic process seems to take for ever! in the last 18 months Georgina has been out of school for a total of 9 months.

    Does anyone else feel fustrated and angry at the hoops we have to jump through to be heard (sorry if that sounds like a rant!) I feel upset that Georgina has been labled as naughty and difficult at 6yrs by the education authority and no one really takes the time to know her or understand.......

    I also have a 13yr old son with Aspergers Syndrome - is it common for one family to have more than one child with autistic specturm conditions????

    I hope anyone reading this message doesn't think that I am just an angry, in denial mother... I'm not honest!

    Thanks

    Kelly
  • Amanda
    Posts: 281
    Hi Kelly, unfortunately it is common to have more than one child on the spectrum. I have two, both boys. Glad to see you here


    Mandxx
  • webbwebb
    Posts: 2,566
    Hi kelly

    I hope you enjoy talking to us all.
    I have only recently joinned this forum but I am finding it very helpful.
    My son 11 years, has PDA/Autism and I have another son 15 years who has Aspergers so yes it is common to have more than one child with Autistic Spectrum Disorders.
    Have you got a diagnosis for your daughter? It is very difficult to get a diagnosis of PDA because not many professionals recognise it yet. If you think it is PDA have you tried getting a referal to the Elizabeth Newson Centre, Nottingham as they recognise and diagnose all Autistic Spectrum Disorders.
    Glad to hear you have got a Statement, but sorry to hear you have already had your daughter in 3 different schools. Its not your daughters fault and its not your fault but it certainly sounds like the LEAs fault. They do have a duty to educate your daughter for at least 24 hours a week! Have you ever phoned the helpline I.P.S.E.A. they know all the legal aspects of education.
    I can offer more info. if needed.
  • jaz
    Posts: 3
    hi im also a new member and have found reading all the information on this site very helpful and interesting my son has just recently been diagnosed as having PDA and has just recieved a statement of hours for school. i am still in the initial i need as much information as possible stage. the school is also in this stage they try hard but seem to be at a loss slowly having to learn to be flexible which is not easy for a school. but i still face the worry of weekly if not daily phone calls re his behaviour and the possible threat of exclusion.

    but reading the information on this site has given me hope that my son will be able to lead a happy rewarding life. the only thing i want at the moment from his school is that he is happy.

    sorry to go on looking forward to reading more about peoples experiences with PDA there is so much that i can relate to and obviously so much more i need to learn.
  • Pamela
    Posts: 205
    Hello Kelly....welcome and nice to meet you I am Mum to Olivia PDA and IDIC15
  • Lesley
    Posts: 21
    Hi,

    You will find that anything to do with the Education authorities having to having to admit that you are right will be very difficult because this will mean that they will have to spend money!

    That said stick to your guns and continually push for the rights of your child because I did and now my son, Richard is very happy that he is no longer in a mainstream school that was making him miserable. He really enjoys the school that he attends which is a special school. He had been excluded from his mainstream school many times and in the end attended half days.

    When I was getting nowhere with the education authority (we had been trying since the age of four arround three years) I contacted the local paper in the end because he wasn't getting any education at all and this is a legal requirement in this day and age. We were even on the local news which may seem extreem but it gave the education authorities the kick they deserved and not too long after things were going somewhere in getting Richard sorted.

    I wish you every sucsess it's hard work.

    Lesley
  • Lixina
    Posts: 289
    Regarding more than one on the spectrum in one family - that is common. There's a big genetic component to the autistic spectrum. In my case I'm autistic, my Dad's probably undiagnosed autistic, my brother's on the broader autism phenotype (not diagnosable but many of the traits) and my Mom maybe has one or two autistic traits. Personally I've found it beneficial as Dad sometimes understands me when Mom doesn't - however with my psychological issues Mom understands me better. I think of it not as something wrong but as part of diversity, like if Mom was white and Dad black and me and my brother brown, with me darker but with Caucasian facial features.
    In terms of school, I'm homeschooled. I'm a very independent learner, I learn best by giving me access to the information and letting me learn it as I want. So any kind of curriculum tends to bring conflict or just underachievement, depending on how determined the teacher is. Another benefit of homeschooling, in my opinion, is that I can choose who to socialize with rather than being tossed into a group where I stick out and get bullied, which is why I left school in the first place. It was to the point where I wanted to die but was too scared to kill myself. Bullying tends to get worse around the preteen years. Never ignore it or think it's just "kids being kids". It's normal but normal isn't perfect. It's normal the way bombs falling were normal in England during world war 2.
    Ettina
  • Hello Kelly
    My son is now 7 and was diagnosed with PDA aged almost 5. At age 3 I was told that the private nursery he attended did not want him there due to his violent behaviour, and later I voluntarily withdrew him from a playgroup as I thought if I didnt then they would also have asked me to remove him. He went to one other playgroup who had experience of children with special needs and who were very good. He got his statement in July before he started in foundation year, and I have been really lucky as his primary school have been so supportive and have never once excluded him (he has been really bad at times so I am surprised).
    They have been keen to learn more about the condition and ways to help, but like us are having trouble getting advice and information as there are no professionals in the area who have a good knowledge (excluding child development centre who only deal with kids who are preschool age). He is statemented and gets extra support though not as much as we think he needs. He moves to juniors next year, another mainstream school and am unsure about what will happen there. At one point we looked into special needs schools but could not find one in area which seemed suitable and who had knowledge and experience of PDA.
    I bet it is confusing for her to keep being moved, I think it was for my son. I thought he would grow up feeling everyone hated him and did not want to be his friend. He does have really low self esteem but am not sure if it is connected.
    Does Georgina 'fixate' on people - i.e. develop a strong like or dislike for them? My son has done both. Just wondered if it was common. Was your son a lot different as a child, and what age was he when his Aspergers was recognised?
  • jelv
    Posts: 185

    westd said:

    Does Georgina 'fixate' on people - i.e. develop a strong like or dislike for them? James has done both. Just wondered if it was common.


    There's no shades of grey with Kathryn either. Her key worker at school is a bit bossy (in a jolly, friendly way), which doesn't go down very well - but she really understands Kathryn and is very kind and sympathetic to her needs. This confuses Kathryn - she 'hates' her because she is bossy and can't cope with someone she thinks she should hate being nice!
  • I dont know what it is with James that makes him drawn (or opposed) to certain people but in every class he has been drawn to one child (always a boy) who he wants to play with to the exclusion of everyone else (and woe betide anyone who comes between them). And he seems to have taken a strong dislike to a substitute teacher who sometimes covers his class - and there is nothing wrong with her its just he doesnt seem to like her. I think she does have a loud shouty voice.
    Actually the kids that he chooses to fixate on are not shy, but equally are not dominating like he is so perhaps its a power thing - they are more likely to do things his way??

    It must be confusing for Kathryn to feel that way about someone, but its difficult if not impossible to help I imagine?
  • jelv
    Posts: 185
    Today we have learnt that "bossy xxxx" is being promoted to a different housebase so she will no longer be Kathryn's keyworker. We're anticipating that she's going to be surprisingly upset at losing the close relationship with someone she 'hates'.
  • Hi Kelly, i run a support group in scotland for autism spectrum disorder. It appears from talking to my group members that spectrum disorders are very common in families and do carry a strong genetic link.

    I have 3 kids on the spectrum, i'm sure myself and hubby are also on it, his brother and sister are on it and i have two nephews on it. \there are probably more family members with it but i've never known them well enough to know.

    Does anyone else in your family have it?
  • Kelly
    Posts: 28
    Hello All,

    I have been out of contact for a few weeks as I had to admit defeat and leave my job. I am now at home with Georgina and trying to bring some sort of normality to the family...

    I have looked down all the responses that have been posted in my absence and would like to thank everyone for their support and insight.

    My son Adam was initially diagnosed with ADHD at 2 years, then he was diagnosed with Autism at 5 which was then revised to Aspergers when he was 6 - Adam is now nearly 14yrs. His behaviour is markedly different which is why it is hard to understand how they can both be classed as 'Autistic' - Adam has peculiar little ticks, he walks on the balls of his feet, he takes the literal meaning from each word and in some cases has managed to get himself into all sorts of bother for either agreeing with a sarcastic comment or doing the literal. Adam likes to be alone and isn't too bothered about people but is slowly learning to be part of the family. Adam has been on a gluten free diet for 14 months as he suffered from chronic bowel problems. The Paediatrician didn't recognise the problem as food related because Adam does not present with an allergy but we sent a sample to Sunderland University and it showed an intolerance to gluten and a boarder line intolerance to casin. Since taking the gluten out of his diet his bowel issues are a lot better, he is calmer and a little more tolerant. The university explained that gluten had the same effect as cocaine for Adam - he was literally addicted to the 'high' he got from eating and when he was hungry it was an addictive requirement rather than a need for sustinance.

    Georgina is more vocal, deliberatly obstructive and manipulative. She doesn't eat anything other than plain pasta or white bread and butter, she only drinks water and refuses everything else.

    We have just got the statement through awarded on her behaviour so now we can call an emergency meeting summining the relavent medical as well as educational people in the hope we can move forward. Georgina still only attends half days and has been excluded four times in the last month for behaviour.

    Sometimes it is hard to focus on the good bits - especially when you are cleaning poo off the bathroom walls again at 11.30pm with the little star singing and dancing to entertain you... but i keep telling myself things have to get better!!! I don't know how or when but they MUST!!!!!

    Kelly
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