General Chat

As some of you may remember, I have been fighting to get diagnosis for my son for the last 8 years. It has been a long struggle to get the help that my son needs. We knew that he had ADHD and had social communication problems, of which there was concern from the school and from us, that he might be on Autistic Spectrum. The Consultant Paediatrician, didn't appear to agree with us that he had an Autistic Spectrum Disorder, and was more inclined to think that he might have Pervasive Developmental Disorder. I kept thinking, 'what the hell is that', I had never heard of it and she offered no explanation as to what it is, all she said was that it was a bit of everything. I went online and looked it up and found that what it basically means is Autistic Spectrum coupled with a bit of other things. It just didn't make sense, she wouldn't listen to what I or the school were saying or what the series of assessments had found. Thankfully the school, Educational Phsychologist, Speech and Language Therapist and myself, still thought that he was on Autistic Spectrum. So, the continued to help him as if he was and gave him all the help that he needed. However, with only having a year left at primary school, we needed some sort of diagnosis so we could find him a suitable secondary school, where he would continue to get the help that he needs. Not only that the school felt that he needed a statement for social communication problems but there was difficulty with that because accedemically he is average in his education. In the end, with support from school I asked for a second opinion and got a referal to guys hospital. We went there last month and came away feeling happier that someone was finally listening. What amazed us was that they took time out to spend time with aiden to see what his social communication was like and ran a series of assessments. Well I got the report through today, and the doctor said that my son has right diagnosis of ADHD, and is also on Autistic Spectrum. Although he dosen't quite fit all the criterea for Aspergers, he is more Aspergers than on the lesser scale of Autistic Spectrum. So, therefore, would conclude that he has Aspergers. Coupled with that he feels that he has Oppositional Difiance Disorder (ODD) and Conduct DIsorder. He feels that the right way forward is to try and get him a statement and have Occupational Therapy. I Know this is quite long to read but felt that it important to post this as there are a lot of genes members that have children with special needs. I want them to know that you know your child and do what you think is right and even if no one listens keep on fighting. It seems never ending, you take 1 step forward and 10 steps you deal with prejudice of people telling you there is nothing wrong with your child and you start believing that they are probably right. I know those feelings only to well but I still kept fighting for what I believed is right and it payed off. Nicola xx

Hi Nicola Well done for fighting for your rights. With a Statement he will get the help he needs at School, & hopefully progress to Secondary School with ease. Do check that he will take the Statemnent with him, so he will continue with the extra help. Sadly it seems to be quite common now for parents to have to struggle to get the help their children deserve! Good luck, :0) Joan

its been a long road for you Nicola - but at least now there is light at the end of the tunnell - you are right though - a mother knows her own child xx

thank you for that joan The statement is for secondary school, he dosen't need it for the school he is at because its a special needs mainstream school and they give him more than what a statemented child gets. Nicola x

Thank you for that Sheila, I just hope that my own experience will help others. Nicola x

Well done then Nicola! Sadly some peeps don't understand Autism, most are lucky to have 'normal' children, so they sometimes don't look at those children that are 'different' to theirs in a kindly light. Best of luck for you & your son, :0) Joan

You are right there joan thanks again Nicola x

so pleased you have a result - so sad it took so long..... I hope the path forward is an easier one for you!! xx

I have an older son with autism and did a course on Autism at U.W.E. in connection with work. (I am a psychiatric nurse). I was told that pervasive development disorder was on the autistic spectrum. I am glad your son is going to get the help he needs. i expect you will find the labels change over time. We started out with juvenile onset schizophrenia. Autism at the momment seems to be atracting the funding and the research. I found my son has responded very well to fish oil suplements. It seems to improve his concentration. I will bump up the autism thread so you can have a look and realise you are not alone.

Hi Nichola, Well done, and thank you for the update. Hopefully you will find a secondary school that will both meet and understand Aiden's needs. Good luck to you both. Jill xx

Thank you for that Anne I work for a support group for children with special needs and exactly what you are saying, I have come accross numerous amount of parents that say the diagnosis keeps changing and that they are not sure which diagnosis their child has. You would think that they would get it right, they never seem to agree what the other doctor says so come up with something else. Everything is too political and they are too busy working against each other, when they should be working together to make sure that the child has the right diagnosis they deserve. Nicola xx

Hello Nicola, was only thinking about you the other day and wondering how you were getting on! So glad to hear that you have a diagnosis at last. I presume you have a nice report that you can send to your LEA now to support your application for the statement. You should get that in as soon as possible as you need it in place BEFORE he starts secondary school - they can take ages to get, even with a diagnosis. Jamie was diagnosed in June with Asperger's and I am STILL waiting for the re-written statement!! You really want the statement to specify a particular school, try and make it one with a 6th form. If they haven't got a 6th form, then you will lose the statement when he leaves that school and have to re-apply for support if he goes to college. I hope that others will take heart from your story. Good luck with the rest of it. Maz. XX

Thank you Maz We couldn't really do anything till we had this report to back our claims, we have been told that it will take up 8 months to get him the statement so will be well in place before he reaches secondary school. We still don't know where the best place is to send him because down here the secondary schools are not fully equiped for special needs. Which is sad because by rights he should be in mainstream. However, unless we find him a suitable secondary he will have to go to a special school, which he will have to travel as its outside the area of where we live. Nicola xx

Update Just when you think that things are only going to get better they don't. It has take a year to get my son a Statement of his Educational Needs, after one huge battle with the LEA. They originally turned it down in December 06, so I appealed, then low and behold the head of the AEN department phoned my sons school and 3 days later overturned their original decision not to access for statement, baring in mind they had no new evidence submitted. He got the state 1 month ago and we stated that we want him to go to special school in September for his secondary school transition. It went to panel and they decided that despite being full they feel that mainstream school can cater for his needs. So no we are battling the LEA again to get him the correct placement. I and his school have argued that there is no way he will cope in a mainstream school. His statement says that has to have 20hrs a week 1 to 1 support and be in small groups with high level of input. He needs to be taught as an Autistic child and needs appropriate support so he can function in everyday life. He no understanding of social situations or in a classroom setting, the sad thing is he is extremely bright child working at level 5 in Science, which is the highest you can get in primary school. Because of this he can't go into the small groups in mainstream because its for children that are under-achieving. I have had to go to all the secondary schools to prove they can't cater for his needs and everyone has said they can't give him what he needs. There are no other special schools in the area that can cater for his needs either, because they are schools for children that are under achieving. The only school is half hours journey away and its the panel for that school that have refused to give him a place. This school is excellent in helping children with Autism that are well above average, the children thrive there and most go onto university and lead normal lives. It beggars belief how they can do this to a child, he is so upset that he hasn't got a school to go to, that it has had a huge impact on his behaviour. So much so that the school have major concerns for his welfare in mainstream school, he has been banging his head on the table and literally pulling out his hair. He has been crawling around the playground pretending to be a cat meowing and purring rubbing himself up against peoples legs. How can they justify doing this to a child that is clearly emotionally unstable and can't cope. Nicola

Oh Nicola I do feel for you after all you've been through think nows the time to get the papers and your MP involved I do hope your son gets into the school you want Norah

thank you Norah That is the next thing on the list, but first letter has to be done to LEA challenging their decision and proving that the schools can't cope. They should have the letters from the schools by now, just need mine to be sent. I have already told them, that no matter what they say about him going to mainstream school, there is no way that I am sending him, they will have to take me to court. If they do then I will putting all the evidence in front of the judge and saying 'now tell me I am wrong'. They won't have a leg to stand on because there is so much evidence there backing it up. Personally I don't think it will get that far, he's been in the system since he 18 months old and we have had to battle them all the way. I am not prepared to give up on this Nicola

nudge

Nicola Keep going. There is a bit more of a battle to win yet but you can do it. YOU know your son best and it would seem that the other secondary schools know that you are right. I wish you good luck and success over the next hurdle. Gwyn

Good luck Nicola, it seems we all have to battle for our rights these days, nothing comes along in a straightforward and sensible way anymore, mainly because the people making the decisions see themselves as powerful instead of being more understanding if you see what I mean. Positive thoughts for you and your son to get what is right for him. Liz

Thank you for your kind words Purple and Gwyneth. I apologise for my ranting, but it makes me so mad they are messing with childrens lives and they just don't care as all they are to them is figures. The sad thing is most people would have given up as they would of felt there is no hope and also because of the stress it causes. Some don't even realise what their rights are so therefore, just plod along and do what they say. Nicola