denise2

If you don't hear from them quite soon after the application I would give them a call to make sure they have received it. Everyone I know apart from one person had an acknowldegement letter telling them how long it was likely to take as well as an initial e-mail for those done online. The one friend who didn't get a confirmation phoned after a few months and was told they had no record of her application and she was told to start the process again. Luckily the carer support worker dealt with it on her behalf and it got fast tracked. Website with more info: http://www.familyfund.org.uk/ Denise 2

We had a disabled facilites grant for a new bedroom for our son, we had to be assessed by the occupational health therapist then a recommendation was put in for us. Denise 2

We have just had a room built for our AS 11 yr old son using a disabled facilites grant. We needed to contact the children with disabilites team and get an occupational therapist to look at our needs. When she agreed we needed an extra room she looked at all the options including a council house and decided on applying for the grant. We were very lucky as most of it was taken out of our hands from then on, it took about a year from start to finish but it has made a huge difference to our family. Denise 2

Hi Viper, I have an 11 year old AS son who I home educate myself. He is also very intelligent and sat the key stage 2 SATs along with key stage 1 as he just walked through the tests for his age. However by the time I took him out he had stopped learning and developed school phobia. We have had to find things for him to do that will capture his imagination and does not include too much writing, something he hates. We currently subscribe to @school, an on-line "school" that covers many subjects and provides the worksheets to be done on line, it also marks it and you can print it off, so I have a nice file for the LEA, who happen to be coming tommorrow!! We started at 2 subjects a day and have gone up to 3. He completes them in about 10 minutes. website: www.atschool.co.uk costs �3.00 per month and covers national curriculum key stage 1 and 2. For the rest of the day we learn social skills, enter competitions, play games, go shopping, do cooking etc. I also allow him plenty of time to chill out. When he was at school his anxiety levels were so high he was becoming ill and could not cope with the smallest of stresses. Now as he is so chilled most of the time he can cope with the short bursts of difficult or stimulating times like shopping or doctors appointments. We have gone from 2 monthly appointments with the paediatricain to 6 monthly. They are amazed at the difference in him. they fully support concentrating on social issues as well as educational and teaching him some independence. As your son gets older these things will benefit him more and more. After all no matter how intelligent our children are unless they are able to cope in the world it will be irrelevant. Good Luck Denise 2

Thanks for that I'll have a look. Denise 2

My son wishes to build his own website and wants his wn www. address. Can anyone suggest an inexpensive and uncomplicated way to do this. Any help welcome. Thanks Denise 2

I wonder how they work the doses out? Our son is on 1 x 3mg capsule a night, he is 11 years old. We asked the paediatrician if this could be raised when he went through fazes of waking at 2 am and we were told we were not able to give him any more, just try to give it later. Denise 2

If it's an independent school, it won't matter how close you live if you can't get funding. We have a large AS school and college in our county and I have been told very few from our county get funding to go there. Our son has AS and is now home educted due to sensory problems, but we have been told we would have a huge fight on our hands to get him in the school as the fees are so high. Fortunatly we are happy with the home arrangement. Denise 2

Our tax credits went up due to the DLA and then went down again due to getting Carers Allowance. Carer's allowance is taxable and is classed as an income and that is probably why your tax credits went down, but it's worth a check to make sure. Denise 2

Our son stood out as different from a very early age, he knew his alphabet from 18 months, was reading at 2 and slept for only a short time. He was constantly on the go and loved playing on the computer at 3. However the playgroup, HV etc all thought we were teaching him to be like that and his behaviour was bad because we spoiled him and always let him win. Even in reception another parent came out with the comment that after helping in the classroom they were all convinced he was a spoilt only child as he cried during games. He eventually got his diagnosis just after his 9th birthday and things changed for him over night. Initially I was very angry at what we had put up with over the years but we decided to put our energy in the future and the past behind us. We were told by the paediatrician that not many children are diagnosed before the age of 9 as it is very difficult to recognise. I don't know if this is true but at our social group the children with autism were diagnosed quite young but the ones with AS were not diagnosed until they were 8 or 9. There are a wide range of behaviours on the autistic spectruma dn each person has their own personality to go with them, so you may see some behaviours and not others. Good Luck with the future, it sounds like your son is at a good pre-school and hopefully they will pick up anything early. Denise 2

Hi Fay, you can apply a year after the date of your last award. Denise 2

I am not sure if this has already been posted butI Have just seen this in the paper at 9pm tonight on ITV, details in paper are as follows: "When a boy with Asperger's syndrome is accused of killing his own mother, Henry is called on to defend him. Pleading his innocence and unable to lie due to his condition, the boy's story seems straightforward, but the case is compliacted with rumours of an extra-marital affair." Denise 2

Posting to let people know of a grant available for adapting homes: We have just had a bedroom built for our AS son under the disabled facilities grant. We live in a 2 bedroom house and our son has been sharing with his NT sister. It was getting very stressful due to his meltdowns and sleep problems and so we tried to remortgage to pay for an extension (something we had always planned to do). However hubby had been advised to find a job with more consistent hours to be at home more and to give more of a routine to our son. This obviously caused a drop in income and the bank would not let us remortgage. In desperation I phoned the council to see if they provide loans. They told me to contact the Child and disabilities team about a disabled facilities grant. I spoke to the OT and she agreed to come out for an assessment. When the OT came out she agreed to refer us but told us not to have much hope as they tend to only deal with physical disabilities. Also as we had a child of each sex, it was considered our responsibilty to provide seperate rooms. It went to grants and they did not think that we qualifed. We then provided a letter from our local CAFTS stating the urgency to seperate them. Eventually the grants decided to come and see what the fuss was about. When the grants people came out I showed them a list of reasons why he needed it and why we could not afford to do it ourselves and they immediatley moved us to a mandatory grant. After calculations our contribution for a large room and entrance lobby was �340. We are now currently in the process of decorating it. They looked at all his needs and have provided areas for furniture, study, and entertainment. The grant is not very well advertised, and most people believe it is only for adapting houses for the physically disabled. If any one wants more information let me know. Denise 2

If you decide not to sell and are still needing extra room have a think about applying for a disabled facilities grant. We have just had a room built under this scheme and it makes a huge difference. We had to see the OT for an assessment and convince the grants department that it was mandatory, but after that it has been plain sailing. If you want any more information let me know. Denise 2

Viper, I agree with Carole. We home educate and I know of others who do also. This is not routine. Hopefully it will just be an offer of help, and who wouldn't welcome that, but it wouldn't hurt to know your rights with regards to home education before they come so that you are prepared. Good Luck and I hope all goes well. Denise 2

I watched this with my 10 year old Asperger son and 7 year old NT daughter. We were expecting it to be another frustrating misleading feature on Asperger's syndrome but it was brilliant. The psychologist was great and half way through my son went into the hall and shouted "AT LAST A PROFESSIONAL WHO UNDERSTANDS" They didn't put the child down or try to force her to conform, just showed a normal family struggling under very difficult circumstances. In any other situation the child would have been shown as a monster as her behaviour was very bad, but they simply explained that the child got to a point where she could no longer communicate and the key was to divert it before it got that far. I also liked the fact that they showed how desperatly sad the child was after the meltdown and how bad she felt that she had gone wrong again. Well worth watching. Denise 2

We buy this from our local Tesco, it has had a small amount of effect with our NT daughter, but no where near as much as our AS son who takes Melatonin in capsule form before bed. It costs about 90p a carton. Denise 2

Hi Lauren, where did you hear carers of special needs children are entitled to the flu jab? I phoned our surgery and they only offer it for vulnerable groups. Denise 2

I guess we were really lucky. Paediatrician told us at appointment ( for which we waited 3 months). It was confirmed by a psychologist within a month. We were told he was "classic" Asperger's which was maybe why it was so quick. Denise 2

Lucas- we experience quite a lot of lack of understanding from people with regards to our sons AS. When this happens it increases his level of anxiety as people expect too much from him. He is not even able to attend school due to his sensory problems and bowel problems. These are both linked to his AS. At school we were told he just needed to learn to behave and he would be happy!! The programme came across that the majrity of problems caused by AS were behavioural in the way that the child was unable to conduct himself correctly in public. We are very proud of our son and have a great relationship with him. We would never want to change him, but would like to change other peoples perception of AS, and therefore of him. I did not want to see a really negative view of autism just a realistic one, including all the difficulties these children have, including the big one of education. It would also help to show that most parents cope on there own or just with a working partner 24 hours a day 7 days a week. we don't all have the luxury of extra help. Denise 2

I watched it, but again did not feel it gave a very accurate view of difficulties faced. The woman had 3 children, the oldest was 6 and autistic, the middle was mildly autistic and the youngest NT. To be honest the eldest just came across as a naughty child that was misunderstood, there wasn't any mention that I noticed of sensory problems, bowel problems etc, including the difficulties the children develop as they get older. Also the family appeared quite well off and were able to employ a full time nanny, a speach therapist and had one-to-one help from a teacher. they did however show the boys up at 2a.m. and explain that the mum only got 4 hours sleep at night. Once again it's good to highlight the cause, but, last weeks one on living with Alzheimers was a lot more hard hitting. I didn't feel it did the plight of most carers of autistic people justice. Only my opinion though. Denise 2

I found this site http://www.stevenscreek.com/goodies/calories.shtml Good Luck Denise 2

A few years ago, pre-diagnosis my son did swimming lessons. we had to have him moved due to the teacher constantly shouting at him as he did not pay attention and was constantly flapping. She caused him so much distress he nearly stopped swimming, he was 8 at the time. Well now diagnosed with Asperger's syndrome and now age 10, we saw her again yesterday. She said that she remebered him as the one that didn't pay attention. She then asked why he wasn't in school. We told her he was diagnosed with Asperger's syndrome, sensory problems plus others and due to him being unable to cope with school he was now home educated. She then told us that she was most surprised as she was trained to teach autistic adults to swim and thought that she would have picked it up. We informed her that he was not in fact mild but was well into the autistic spectrum and was diagnosed on the spot when we at last got to see the paediatrician and confirmed straight after by a psychologist. She was left feeling quite shocked and from the look of it feeling a bit guilty My son and I walked away smiling, hopefully it will make her think twice in future. My point is that even people who claim to know a lot about autism still often do not seem to have a clue. A lot more training and awareness needs to be done. Good Luck Denise 2

Hi LLaverty, I have no experience of using it, however I did come across this site the other day that might be of some use for people using Makaton with children. http://www.bbc.co.uk/cbeebies/somethingspecial/index.shtml There is also a programme on Cbeebies related to it. Good Luck Denise 2

Hi Barefootwendy, now prepare yourself for the shock by people when they realise you don't have to send your child to school. We are met by so much disbelief from people when they ask why our son is not at school. Especially since our daughter is. Yesterday my son was on CBBC taking part in a school related competition, off air one of the presenters asked if him he was going back this week. His reply was that he does not go to school, the conversation was changed so quickly he did not have a chance to explain he was home educated. They must have just assumed he had been expelled!!! On air the subject of school was completely avoided. We thought it was very funny. Good Luck Denise 2