denise2

Hi Malika, I'm not sure if you wish to have advice re school or DLA. If it is school you will probably get a better response starting a thread in education. Also what difficulties does your child present in school? Often the school will not acknowledge them until they experience the difficulties themselves. With regards to DLA, this is not supposed to be linked to a diagnosis or if the child has a statement but is awarded on the amount of extra help the child requires during the day/night. I hope you get help soon Denise 2

How would that work? I am unable to work due to spending my time home educating. That said I wouldn't turn down any financial help. Denise 2

wow, mom on a mission, I am impressed. We are currently having our room built and I wouldn't know where to start. I think it depends on where you live if they accept you for a disabled facilities grant. We were initially told we were discretionary and they did not have money for that. Then our local CAFTs got involved and told them it was urgent that he was seperated from his sister, the man from the council came out to see us and then moved us straight up to a mandatory grant. Guess we were lucky. Denise 2

Sorry, I didn't realise I hadn't answered your question, yes in my opinion I would just do the introductions and then let him go upstairs. We didn't even get to the introductions as our son refused to leave his room but he was very vocal so she knew he was there. Denise 2

We were asked all about his medication and difficulties and we were asked about the effect his disabilities had on the family and the finances. As our son is 11 and has continence problems I didn't want him to overhear what was being said. Also I didn't want him to think that he is the cause of family life being difficult as we have taken a long time to build up his self esteem since taking him out of school, and it doesn't take much to knock him down again. I didn't think any of the questions were not needed as I realise they have to justify the grants. It was also well worth doing as the grant has made a huge difference to us, especially being able to take the children away for a couple of days. We also needed to provide proof of income and diagnosis and show the medication our son is taking. Best Wishes Denise 2

Hi Gruff, we felt like that as well, but the lady that came to see us was very nice and made us feel quite comfortable. We received our cheque about 3 1/2 weeks later. We have been awarded a holiday grant, clothing and bedding allowance, and money for an exercise machine for his repetative movements. We are also in the process of having a bedroom built for our son under the disabled facility grant and the family fund have given us money towards flooring and decoration. We have also been advised we can reapply in a years time. A friend applied just after us and on her visit thay have put down for a shed for her son as he spends so long in the garden and a printer for his computer. We were guided by the lady that visited, she asked loads of questions and pointed out areas for which we could claim. The only thing I would say is that our son was not present at the interview as he doesn't like strangers in the house and I was glad he wasn't there as there were quite a lot of personal questions. Good Luck Denise 2

We don't have Aspartame as me and my sister have a reaction to it. As a family we drink Tesco hi-juice squash as it does not contain sweetners. Another difficulty is yoghurts, a lot of these have aspartame in. Some crisps also have it in mainly prawn cocktail, barbecue, pickled onion. Denise 2

Hi Carole, I had read and was concerned and disgusted about Debbie's story. I did not realise these were linked. I hope something gets done soon. Denise 2

Carole, yes, please pass on my support or let me know how to do it myself. As you say Cherry, what will happen with our children? My son talks of getting married and having children. I don't know if this will happen but I'd like to think it could if that is the path he chooses. Denise 2

That was just what I felt as I read the article, it does make you wonder what the next step will be. Densie 2

This is not autism related, but I was so shocked I had to share it. The article tells of a family who had their children removed from them for adoption because they have learning difficulties. The mother has an iq of 60 and went to a special school but had been receiving support to look after the family while husband worked. Social services admit children were loved, fed, clean cared for and home was clean and tidy, but felt it was the best interests of the children for them to be adopted. Taking the children was against advice from health visitors and the disabilites team that supported the family. Social services appear to be trying to hush it up as it sounds like a funding issue. The most shocking part was on page 25 where the mail on sunday stated "Government policy has encouraged local authorities to put children up for adoption rather than supporting parents with learning difficulties." It's quite scary the way this Governement continues to punish children and adults with learning difficulties just for trying to lead a life. First closing the special schools and now this!!

Carole- How did you know the ending? Do you know when it is coming out? I agree it could be frustrating if it is portrayed through rose coloured glasses. Denise 2

Just saw this stroy on-line. The Jackson family are being made into a BBC2 drama. This is the link http://news.bbc.co.uk/1/hi/england/lancashire/4144898.stm Denise 2

Hi Jan, good to hear things are going well. I agree it's not easy, but school was much more stressful on us all and we have noticed an obvious change in our son. We are still awaiting our visit from the LEA and have been told it will be some time in September. A friend had hers the other day, the man that came to see her told her they could not offer any better in school. She was worried as she is in no way a teacher and was mixing some formal work with a lot of social and living skills and she got a glowing report. Are you still going to go back to the school system in September? Denise 2

Hi Nellie, we home educate but my son did not have a statement so I am unsure of the procedures you need to follow. However we obtained a lot of help from education otherwise. The website is www.education-otherwise.org.uk. Good Luck, it has been a real turning point for us. Denise 2

We were told by our paediatrician that a lot of people with ASD do not produce Melatonin naturally. This is what makes people sleepy and relaxed in the evening. The paediatrician prescribed Melatonin for him last September. He slept like a dream (12 hours) for about 6 months and now it is hit and miss. The evening is still more relaxed and he goes off to sleep fine after having Melatonin but he has started waking again in the early hours of the morning. This happens every couple of weeks and lasts for a few days and then things settle down again. I have been told there is not much I can do about this. We have been fortunate as we have got a disabled facilities grant so that he can now have his own room which should stop him disturbing his sister. Building starts next week so that should be fun!!! Denise 2

Our visit was quite long, about an hour. She did say that she needed to see our son but he refused to come out of his room. She told us this is not unusual and the reason for meeting the child is to satisfy themselves that the child exists. As ours was quite vocal at the time she was satisfied with that. She did however need to know a lot of information which I felt was not suitable for the child to listen to anyway. We had to show medical letters, medication and discuss the things that caused our son and the family most difficulties. As our son has continence problems he would have hated us discussing this in front of him. We could have not answered the questions but she needed to justify each part of the grant, which would have been difficult if we hadn't been honest. Financially I also provided her with a copy of a payslip, DLA, Carers and tax credits, however they only include salary in calculations. It was quite draining but she assured us we would only have to do this once and then after that we can apply every year. The lady that came to see us was very nice and non-judgemental and it's well worth applying. We told our son we had applied and he thought it was great. However he and his friend who both have Asperger's queried if they really were disabled. We told them that officially they were to be able to claim a lot of the benefits, but in our opinion they were not disabled just our children. Denise 2 Deniose 2

Hi Margot, it's a horrible feelinng isn't it. You don't know wether to laugh or cry. All I can say is that in the last 2 years since my son's diagnosis he has come on leaps and bounds. He still has many impairments but through knowledge from forums, books, supporters etc. we have started to learn to understand him for the first time. We now know a lot of the behaviour triggers and we have learnt that he has sensory problems which means that he's not just being difficult he really can't cope with the noise, smells etc. Our son no longer goes to school due to the high level of problems it caused both him and us. He was also disruptive when he was there and would behave very inappropriatly during lessons. I do however think it is very sad that you have been given left feeling so negative about your daughter and her future. Our children are hard work but they can also be rewarding. My son gives us such a different view on the world, andshows much empathy even though school said he couldn't do this. He is still very selfish and often cannot see other peoples point of view while in the middle of situations, but the empathy does come later when he has calmed down and he is able to think clearly and we can talk things through. Our son also had terrible social skills when he was at school, but during the days when it's quiet I have played games with him, taken him to cafes and had friends round the house and he is slowly acquiring them. I can only go by my son, and I appreciate I don't know your daughter and all children are different, but there is a lot we can do for our children, just take your lead from her and if things get too stressful don't be scared to stop things and try later, our son has quite a short attention span, and gets distressed quite quickly but he has learnt social skills in small doses. It is a mamouth job, but just start small, everything has to start somewhere. Good Luck Denise 2

I have been told that the family income should be below �23000, but there are more details on the website www.familyfundtrust.org.uk . The application form is quite simple if you complete it on-line , but it does take quite a long time for them to get back in contact with you. Good Luck Denise 2

Hi Punky, when did you apply? We applied in April and had a visit last week. A friend who applied at the same time had her application go missing. She did it on-line and even though she had an automatic reply by e-mail the family fund had no record of it. If you are desperate you could try going through a social worker or carer support worker as they may be able to fasttrack it. After help through the carer support worker my friend has her visit next week so she didn't have to start all over agaon. At the visit the advisor went through our circumstances and put down with our agreement what she felt would be most useful in order. We were told the holiday grant is approx.�380 as standard. This can be used as holidays or day trips. We had originally asked for a trampoline, but due to the reports of accidents in the media, and our son having no idea of danger we were unsure. She advised us that the grant is a recreation grant for us to spend as we wish as long as it is for the benefit of the child and we keep receipts. We have also applied for a grant to do our son's new room which is being built soon, a clothing grant and a bedding grant. We have not heard back from them yet and we have been told it is between 2 to 6 weeks for the reply to get to us. She was a really nice lady and did not make us feel awkward at all. She explained that when a family has a child with special needs their income tends to drop quite a lot and they just aim to try and make families lives a bit easier. If it has been a while since you applied it is worth e-mailing them, they reply to these quite quickly. Good Luck Denise 2

Hi Tylersmum, was it his earnings that made him ineligable? I thought once you had a child on middle rate care you automatically qualified for carers allowance as long as you don't earn over a certain amount a week. I think it's approx. �80.00 but not sure of the exact figures at the moment. Denise 2

When we applied for mobility to look at earlier this year they were totally lost as our son no longer attends school as we have de-registered him. I phoned them and asked if they wanted copies of the medical letters that I had, and we got it based on those. When my son was at school we were refused DLA outright due to what they told them. Fortunatly our psychologist wrote to them explaining that in his opinion DLA at a middle or higher rate was more than appropriate and we got the middle rate. Good Luck many of the people on this forum have been there before you, it seems more unusual if it is agreed first time. Denise 2

It's not on the list so I voted in other. My son's obsession is fish fingers. Denise 2

Just for anyone else that is interested I have just had a phone call from the family fund to advise that Carer's allowance is also not taken into account on the calculations. Denise 2

HI Tez, an update after speaking to the lady from the family fund. She said she has just had an e-mail confirming that tax credits are NOT included in the calculations. Denise 2