denise2

Hi Jools, I have been told that you can get the Omega oils on prescription, although I don't know if it is eye q. A friend gets it for her son. With regards to pull ups I asked our continence nurse if our son can get these free. As he only uses 1 a night we are not eligable as I was told you need to be using 2 or more to get them free. Denise 2

Hi Tez, we have our visit tomorrow,and I have the income forms in front of me. When I spoke to the lady from the family funds she said that the new rules include the tax credit. On my form they ask for your income from: Income from employment before tax,Income Support, DLA ( only if you or your partner have had it awarded for yourself ie not the child's DLA), Carer's Allowance, Working Tax credit, Attendance Allowance, Council Tax Benefit, Housing Benefit, Incapacity Benefit, Jobseekers Allowance, Pension, SDA, child tax credits, rent from a lodger and compensation payments. I cannot say for certain if all of these are included, but the impression I got was that they were. When I spoke to the lady on the phone she asked what they all came to for us and I said �21,500. As we are under their limit of �23000 she is coming out. I will try to confirm all this after her visit. Denise 2

I have just e-mailed chaneel 4 news to thank them for highlighting one of the difficulties our children are facing. I also pointed out that there is a hidden statistic of parents like ourselves that have withdrawn their child from school to home educate them rather than fight the system. I don't know if it will halp, but it can't hurt. Denise 2

If its the part where you have to give details about difficulties my mother filled this in. If it is just a name and address of a professional that knows them it was our carer support worker. We got it and neither of them have ever been contacted. Denise 2

Another update. We have today found out that our application for mobility has been agreed. It wasn't very straightforward as our son is no longer at school so they could not get all the information that they needed. I sent them copies of his reports including the fact that he had been awarded milk tokens, as he is unable to attend school due to his disability. A week later we recieved the award. Denise 2

Thanks for the link, my son loves it. Denise 2

Just heard on ITV This Morning that they are going to have a discussion on the closing of special schools. David Cameron and Maria the mother of an autistic child will be on. I think it is approx. 11.35a.m.

lil_me - I applied for the family fund in April, a week after a friend of mine. I received a confirmation e-mail and letter and she just received the e-mail. She e-mailed them again the other day to see how much longer it would be. They told her that there had been a computer glitch and they had no record of her application even though she had received a confirmation e-mail. She now needs to start again. If you have had nothing from them yet, try e-mailing them just to make sure your application hasn't gone missing too. Denise 2

That's a lovely story Carole, after reading about the difficult times you have faced you and your boys are an inspiration to me. It shows that there is light at the end of the tunnel. My son is only 10 and we have already seen a huge difference in him while teaching him at home. The future however seems scary sometimes and your good news is lovely to read. Best wishes Denise 2

Hi Julia, a few of sites worth a look at are: www.ngfl.gov.uk - this is the national grid for learning. If you click on "what are you looking for" on the left hand side there is a list of links. www.ncaction.org.uk www.educationlinks.netfirms.com - a list of links per subject www.bbc.co.uk/schools - this is quite good also Good Luck Denise 2

Hi Lauren, great site. I have been home educating our son since I withdrew him from school in February. At the time our son had developed school phobia and other health problems related to his stresses with school. He also has Asperger's syndrome, diagnosed age 9 and is now nearly 11. We have a visit from the LEA next week so that will be interesting. We have also started a social group in Somerset for children with ASD and their families and that is great for us to meet other families in the same situation. When we were deciding if we should home school or not, I could not find any happy stories of children with Asperger's syndrome successfully going through mainstream school and that helped to make up our minds. I even heard Luke Jackson's mum saying that he had left school with no qualifications after a miserable time at school. Luke comes across as an incredibly strong and bright child and he had even written 2 successful books. We therefore decided that even if our son doesn't take any qualifications at home he won't be worse off than attending mainstream, but he will be happier. Good Luck to you and your family. Denise 2

Hi Becky, ask your Child Development Centre Consultant to write to them direct. Ours did this and it overturned the decision within the week. An alternative is to go through your local MP. I was told by someone in the know that the MPs office can get a decision within the week, however I have never had to go down this route yet with DLA as we have been lucky so far. As you've already realised for some reason it's fairly normal to be refused on the grounds that the school will not acknowledge difficulties. Our school refused to help only to be asking for our help months later as they were not coping!!! Good Luck Denise 2

My son loved watching the final episode in the series and thought the regeneration was great. His only concern was that we were led to believe that the daleks would be destroyed. However 3 of the Daleks were supposedly destroyed by the Annedroid but in the previous episode we discovered that Annedroid did not destroy things, only transported them. He therefore believes that there are still 3 alive that may come back. Anyone else pick up on this or did we miss something? Denise 2

Hi Jomarie, we went through exactly the same type of illnesses when our son was 8 and was awaiting a referral to the paediatrician. He was off school for 6 weeks with constant infections ( ear, throat skin etc.) His lymph nodes were also constantly enlarged. Asperger's had been mentioned to us in the past and like you we thought only mild. After all the infections we were reluctantly given a paediatrician appointment who diagnosed our son with classic Asperger's on the spot. After that he saw a psychologist who told us he was "well into the autistic spectrum " and not mild at all. His coping strategies and keeping everything inside him had caused the stress that had caused all the infections in his body. After his diagnosis he stopped having the illnesses but he became far more autistic in his behaviour. He explained that the diagnosis and consequent education on Asperger's had allowed him to be himself, thus relieving a lot of the stress that was bottled up inside him. He had one more infection shortly after diagnosis when he was particularly stressed but has not now needed antibiotics for nearly 2 years. He still has a lot of problems and has also had to be withdrawn from school due to anxiety and health problems, but the infections have stopped. Good Luck you will get there. Denise 2

Thanks Carole, as we are home educating our son due to his inability to cope in mainstream, we are going to start making a file of these reports in case we ever need them. Denise 2

We have just applied for mobility for our 10 year old son. He was awarded middle rate care on it's own last year. When we asked to apply for mobility they said we only needed to fill in the forms to look at mobility again. Although they say they can look at the whole award I have been told that if care needs have not changed I do not need to fill in the care part of the forms and to just ignore them. It's worth a try. Good Luck Denise 2

Just to update you, I have now received the forms to claim for the mobility part. I was relieved to find that I do not need to complete the whole lot again and I only need to ask for mobility to be looked at. If I am happy with my current award for care allowance I do not need to do anything with the care forms other than write no change on them. Fortunately mobility forms are a lot shorter than care forms!! Denise2

Hi Jan, I'm glad to hear it's going so well. If only we had a crystal ball I think we would not have worried so much about the dilemma. I am very grateful to everybody who share their experiences with regards to education on this forum. If it had not been for this I am sure my son would still be in mainstream and suffering still. Denise 2

Hi Tez, I will happily tell our story. We have a 10 year old son diagnosed with Asperger's syndrome. He is very bright but has many social and sensory impairments. By January this year our paediatrician diagnosed our son with school phobia due to his condition and school and he was also becoming incontinent for which the paediatrician prescribed 2 different drugs. We then had a copy of a letter from his school complaining about everything under the son about our child showing a complete lack of understanding of him. The letter had gone to a psychologist who, we told them, he was no longer with and was asking for any ideas. We then spoke to friends, the parent partnership and read a lot on the forums to try and predict his future in the mainstream school. We deregistered him the next week. I can't believe it is the same child. We saw the paediatrican 2 months later who quoted in her letter that our son had had a remarkable improvement in his health due to being home educated. They wished to see him again in 6 months just to check up on him. Our son never started taking the drugs for continence and we are slowly starting to help him recognise his body signals again. Something he had lost the ability to do due to severe anxiety. As for the incontinence we have been advised the stage he is at has been caused by at least 2 years of stress ( using school toilets) and is likely to take as long to correct. Home education so far has been a fantastic experience for us and we are gradually regaining our son back. He communicates better and has started learning again, something he had stopped doing. It is very tiring and time consuming especially as our son has decided at the moment that he doesn't need much sleep but our only regret is that we didn't do it sooner. Our son has the opportunity to go back to mainstream school if he wishes, but when I ask he looks at me as if I'm mad. For more general help an excellent source of information is www.educationotherwise.org.uk Good Luck for the future Denise 2

Thanks Minxygal, we've decided to try for it has his needs have increased significantly . Denise 2

Does anyone have any experience of trying to get your rate of DLA changed due to a change of circumstances. When we were awarded middle rate care DLA our son was attending mainstream school. His stress levels got so high and his health became worse that we had to withdraw him and he is now home educated. He is 10 now and unable to go out on his own at all. If we go into town he often gets too stressed to walk back so we have to get the bus or a taxi. We also have to watch him when he's playing outside with other children as if they do the wrong thing he has a complete meltdown.I feel he should now be entitled to lower rate mobility as well but I'm unsure as to how to go about it. Any ideas? Denise 2

this was my son's biggest concern before taking the Melatonin for the first time. He was very frightened it would make him so sleepy he would not wake up. He was very brave the first night, but then after that it has been plain sailing. With regards to the Phenergen I have heard that it can have the opposite effect on children and actually send them hyper, has anyone experienced this?

Hi Drift. I have a 10 year old son diagnosed just after his 9th birthday with Asperger's syndrome. It makes me so mad the treatment we are expected to take off of people who won't make any allowances before there is a diagnosis. We had to fight the school and doctor to just get a refferal to a paediatrician. The school told us that they had nor problem, he was just clever and a bit quirky, and that besides they had taught a child with Asperger's before and he was not the same so he couldn't have it. The g.p. told me son was a just a very bright lad with a mother who wasn't helping him by keeping insisting there was something wrong with him. After many stress related illnesses we eventually got a referral. The paediatrician diagnose him within the hour. We wer told he was very classicly Asperger's and well into the spectrum. What made me really mad( and my son very confused) was how every suddenly changed the way they treated us. I was no longer just a neurotic mother and everyone started asking how I was coping. The G.P. no longer looked at son's behaviour with disgust, everyone treated him with understaing and sympathy. But we hadn't change, just one very informed person had been able to confirm what we had believed all along that he had Asperger's. With regards to the school within a few months son's behaviour changed at school and they could see what we were talking about. A year ago we went to the parents evening and SENCO had a blank sheet of paper. instead of telling us what they were doing, they were asking us for advice and help. The same people who had told the DLA that in their opinion he did not require any extra help. With regards to school stress, my son's stress got so high with school ( even with their eventual help and understanding) he developed school phobia and was beginning to become incontinent. We withdrew him from school this year and he is now a different person. Even the G.P who still did not believe that school was the cause of his stress was surprised that he no longer needs the incontinence drugs. There is a lot of ignorance out there with regards to ASD and very often people cause a lot of damage with their lack of knowledge. Keep in there it will get better. Once he had his diagnosis we were again able to enjoy our son, we have accepted him for who he is and what he enjoys. He has a lot to give and many amazing talents, be them different from NT kids his own age. He doesn't like discos and the cinemas, but so what he's happy just the way he is. Our children are amazing little people with a very different and fascinating insight into the world. They just need a bit of acceptance and understanding. I wish you all the very best of luck Denise 2

Do you have a web address for the Gabbittas website please? Many Thanks Denise2

Hello all, I just wanted to update you briefly on our situation. We officially de-registered our son approx 2 weeks ago, and there has been an amazing change in him. During our trial week our son had a major meltdown and we wondered what we had done, but we now think it was getting it all out of his system. We also tried to do some workbooks during that week something he rebelled against, but we perservered. A month ago our paediatrican had prescribed 2 lots of medication for our son as he was starting to become doubly incontinent. I could not tell you when the last day was that he had been completely dry. Since de-registering him he has only had one accident and this was when he was looked after by someone else. He has never started the medication and it now looks like he won't need to. My son is also more compliant, less aggressive and attempting things he would have refused to do before. He even took his sister in the fun house, when previously wee could not even get him to the front door!!! My husband also keeps saying "he's talking to me. Properly talking to me". I am not saying it is easy and it is still very early days but I'd like to see the LEA try and tell me now that he is better off in school. I'm also really tired at the end of the day, but this is through being busy with my son and the compensation is I don't have a permanently knotted up neck and the dread of getting up the next day to face the battle with either my son or the school over his education. I just wanted to give something positive back to the forum, and thank everyone for their advice. Densie 2