denise2

Thank you for the lovely replies. We have been very lucky with our LEA. They really seemed to understand our son's needs. He's just started to do some maths GCSE, we are unsure if he will ever sit the exam. Our LEA although encouraging some formal work, really appreciatedthe need to learn social skills, communication and generally coping with the outside world. At her last visit she told us to remember that when he first came out of school he wouldn't even be in the same room as her, let alone speak. A her final visit he chatted about all the sports that he does and the friends he has made. He also discussed his plans for the future. Good Luck

Six years later, I thought I'd come back to update my original post. My son was today signed off from LEA checks with a glowing report. He has not followed the traditional route of education with most of it concentrating on every day skills with some forced formal education. The lady we see from the LEA reminded us how far he has come in the last 6 years which was lovely.

I would check with the DLA as when we applied for mobility to be added, if we did not want to have the whole thing re-assessed we just needed to put no change on the care forms and only fill in the mobility part. This was last year. Denise 2

We've been home educating for 18 months and it was the best decision we ever made. Our son's social skills have improved far greater than they could ever have done at school as he is constantly learning every day life at home. When we first started our son was totally school phobic with extremely high anxiety frequent meltdowns and difficult behaviour and incredibly low self esteem. We started by giving him a few months of de-schooling ( just following his wishes). I was quite concerned as I didn't think he'd ever do any work. We are members of education-otherwise and many people believe de-schooling to be essential. After a few months we started to introduce a small amount of formal work, but never mentioning the word school!! Nine months after de-registering we had our first visit from the LEA and I was dreading it. The day she came he had been vomiting for 2 weeks every day( 3 months later we found out it was caused by the stress of Christmas approaching!!) I was exhausted, he was exhausted and I didn't put forward half of what I wanted. The up shot was that the LEA lady advised that children with special needs need to go slowly and at their own pace and we were doing the right thing by him. She asked him why he didn't like school, and he broke down in tears ( she'd said the school word). She said in her opinion too much damage had been done and she couldn't see him ever returning. She then left and sent a letter saying she would contact us in a years time as we were meeting his needs under the education act. This year he has increased his learning some subjects he works at the correct age for him and others he works 3 years ahead of his age group. He has even chosen his own books for the new school year. He is now more confident, is able to sit still for appointments and has far fewer meltdowns. His anxiety is reduced but willl still go up at certain times. At the moment he knows the new school year is starting ( his sister still attends). This was a period of high anxiety for him and he has regressed some. This only reinforces our decision never to send him back. Good Luck with your decision Denise 2 www.education-otherwise.org uk

We were also told by the OT we were unlikely to get a room but we gathered infomation ourselves from the psychologist and were very blunt and open about the effect on our family to the man who agreed the grants, he even said we had answered questions he had in his head that were not politically correct to ask. Once he was in possession of all the facts he agreed it immediatley so don't give up. Denise 2

I think it's Child And Family Therapy. There is also CAMHS which I think is Child and Mental Health. We were referred to them after our initial diagnosis and although we were no longer with them they agreed to write a letter for us. Denise 2

We were in a 2 bedroom bungalow and were initially refused as we had a boy and a girl and therefore it would never be reasonable for them to share so it was our responsibilty not theres. I obtained a letter from our local CAFTS team that said it was urgent that our son had a space of his own to calm down when in meltdown and to have somewhere to retreat to. I also explained why we could not do it ourselves (increased care needs so Hubby had reduced hours and I could not work). We were immediately moved to a mandatory grant and the bedroom is now built and is a real godsend. Meltdowns are now to a minimum. It may well be worth looking at alternative reasons for needing the extra space. In our case it wasn't applied for as a bedroom but a place of safety and calm. Obviously once the room is built you can use it as you wish hence it is now a bedroom. Good Luck Denise 2

Our son quickly regressed until the age of 10 when we took him out of school.He has now been out of school and with no peer pressure or expectations he has progressed at his own speed. The low self esteem and depression only come back now on bad days. Agression only comes occasionaly when stress levels are high and anxiety is being managed. Our son was on 2 monthly appointments with the paediatrican but is now down to annual appointments. Now he has gained back his self esteem he can explain to us what is in his head and we can work with things and around things. Don't get me wrong he is not the ideal child. We struggle to leave him with anyone as he doesn't have the confidence in them to understand him. Also one of the downsides is that when he tells us why he can't cope with something we have to listen to him which can be very restrictive to our lives. He also needs watching all the time as his social skills are still poor and sensory overload can occur very quickly which if not diverted will result in meltdown and consequently lashing out. But fortunatly meltdowns have now gone from 3 a day to approx. once a week. So I would say medically he has regressed but behaviourly he has progressed and he is now nearly 12.

This reminds me of our AS son when he was at school, the merit system bored him silly. He told me one day that he started with a piece of paper on which a teacher would place a stamp and if he collected more stamps than anyone else he could maybe get some metal (the trophy). He said you could even collect pieces of card (certificates) for every so many stamps. Hence he never collected the merits. We then introduced a top trump card for every merit he collected. Suddenly the merit system was worth while and he started collecting them again. But then the teacher increased the effort required to get them and he stopped again. If he had to be good all day with no slip ups it was impossible. Where as if she had recognised him at the time he did well he could have continued. My experience with rewards for our son is that they have to be instant and useful or wanted. Our son is no good at waiting for a reward as the pressure gets too great and gnaws away at him. Examples of rewards that we have found successful are: collectable sticker albums and stickers, top trumps, trading cards etc. Good Luck Denise 2

I think that's what has happened, however I was checking as I have read on other guidelines that when an award changes they do have the ability to make the change immediately and I was told this was what should really have happened in this case. I have just spoken to them and they have told me that the only way to change the current award (not the renewal) is to complete all the forms again (that's not going to happen!!)and it will all go to a different decision maker who may reduce the amount of the award anyway. It is so frustrating as it shouldn't really work on the opinion of a decision maker but the medical evidence accompanying the forms. I think we'll just wait until November and be grateful his difficulties were recognised this time.

I recently renewed our son's award for DLA. The new award has raised him from the middle rate care of DLA to the higher rate care of DLA, however it does not start until November. As our son has has the increased difficulties for over a year we expected it to start straight away. I telephoned the DWP and a lady told me that it had been treated as a simple renewal and the person dealing with it has not realised the award has gone up. We have asked for written information regarding why it hasn't happened immediately but have been told our only way of getting the award immediately is to appeal. Does anyone have any experience of this please? Denise 2

We live by the sea too and we had the best holiday ever this year. We booked into a local holiday park for a week. We then used the facilities during the day and went 5 minutes down the road to our own beds at night. No meltdowns from AS son all week as he didn't have to sleep in a strange place and got to see the cats every day. It was also cheap as we booked the cheapest possible chalet as we only used it as a base during the day. I think the holiday camp staff thought we were a bit mad though, but we're quite used to that. Denise 2

WE have home educated our 11 yeard old AS son for 18 months now due to him developing school phobia. Our way of life has improved so much in this time and our son is a different child Good luck for September and if you haven't already have a look at education otherwise as there is lots of advice on there. www.education-otherwise.org.uk We are members and we also subscribe to learn premium through them as it's so much cheaper. If you wish to follow a formal curriculum it has a lot of lessons for secondary school age. Good Luck Denise 2

This reminded me of when son was in school, he was not impressed by the merit system at all and made no effort as he thought it was a waste of time. We supplied the teachers with a pack of top trumps and for every merit he got he also got a top trump. Straight away he started to make an effort. Denise 2

If there is a sticker book he is interested in stickers are quite good and inexpensive too. my son has done lots of these, Dr Who being the current one. He will happily complete all his work for a 35p packet of stickers. Denise 2

We had a room built last year under the disabled facilites grant. The council said it was discretionary and so they could refuse it. However due to a safety issue they changed it to a mandatory grant and the bedroom was finished 10 months later. At the time we had a 2 bedroom bungalow and our 10 yr old AS son was sharing with a sibling. Neither of them were sleeping properly and our son was having huge meltdowns due to not having his own space. We own our own home but were told there was a possibility of rehousing into a council house or having a grant for a new bedroom. A friend who is applying at the moment has said that the council will now give you a grant move to a bigger house as another option. To get the ball rolling we had to have an assessment and referral done by the occupational therapist. Here is a link to a government site on it: http://www.direct.gov.uk/DisabledPeople/Ho...&chk=y4L9fn Good luck Denise 2

I've been meaning to order this book as I think this is what is causing a lot of my symptoms. I did a test available from the chemist and that indicated I was starting the menopause but the doctors test was negative. After reading what you've written I've ordered the book from Amazon and I'm going to give it a try. Thanks Denise 2

Our son was exactly the same 18 months ago. I really believe he was on the verge of a breakdown, and his self esteem could not have got much lower. We felt we had nothing to lose, so we took him out of school and started home educating. Initially it was hard work and we had to win back his trust again. After 9 months we had a visit from the LEA but when she mentioned the word school he broke down in tears and she told us we could not send him back as he would not cope, she agreed to come back later this year to see the progress. Well this year he started learning, his confidence and self esteem are really good and his behaviour has improved. The paediatrician is so pleased he has put him on annual appointments. He saw the G.P. for the first time in 6 months the other day and he told us he was amazed at his confidence given his difficulties and his age. The trauma is still there, as his sister started at the school last September we have to go to collect her and he copes with that, however sports day caused major stress so we didn't go to the next event and we had to pop into the school the other day and the previous behaviours came back for 24 hours. I know home education isn't for everyone but it saved our son, he was so traumatised he would not even consider a teacher coming in to the house and he still won't. He knows he has the option of returning to school if he so wishes, and we have recently been abe to discuss that option rationally, but I don't believe he will ever be able to go back. Good Luck and I hope things work out for you. Denise 2

When we wanted to apply for mobility last year we were told only to fill in the mobility form and to put no change across the care form. However when we recently had to complete renewal forms, mobility and care were all on one form. I would ring and check. Denise 2 ( ps the bunny rabbits are to keep my duaghter happy who was looking over my shoulder!!)

A couple of months ago our Melatonin came in the original bottle and it had a website address on it as follows: http://www.lef.org/newshop/items/item00330...ource=melatonin Denise 2

Thanks for that information, I've printed it off. This is just the sort of thing we were discussing trying to find out about yesterday. Our son is also home educated and we wanted to try and incorporate this sort of learning so if you have any further information I would be grateful. Denise 2

The time scale for us was. December 2004 - saw OT who told us although she could see a room was needed however as there was limited funds we were unlikely to get grant as our son is not physically disabled. Half-hearted letter sent to grants people anyway. January - grant immediately refused unless we can provide more information. - letter received from CAFTs stating urgency on safety issue because of meltdowns. - visit from grants department to see for themselves why it should be a mandatory grant. Saw the effects of son's AS on the family as son happily whizzed around the house on a scooter and he saw the medical reports. Moved to mandatory grant immediatly on safety issues ( he shared a room with sibling and had frequent meltdowns as he had no space of his own). We also explained why we couldn't pay for it ourselves, drop in income due to care needs. February - visit from department that was taking over the build of the extension ( these people were heaven sent as we only had to sign a couple of forms they did everything else for us. August 2005 - room started to be built October 2005 - son moved in Hurray!!! So in all it was about a year which is what we were told in the first place. Good luck to anyone wishing to apply and I would say don't be put off if it appears unlikely in the first place, often it is because of a real lack of understanding as to what it can be like for children with Autism and their families. We were lucky enough to have a grants department willing to listen. Denise 2

We had a room built last year under the disabled facilites grant. For us to be given a mandatory grant we had to go via the OT and then prove it was a safety issue. There is more information here: http://www.direct.gov.uk/DisabledPeople/Ho...8283&chk=y4L9fn Good Luck Denise 2

We have a baby monitor in our son's room so that he knows he can call us if he needs us and we will come. His anxieties are normally related to strange noises, bugs or intruders. We got the monitior after he had a room built for him using a disabled facilites grant and he was frightened of sleeping alone. We do still have to sit with him while he goes to sleep. Our son is also on Melatonin and some nights he sleeps well and others he doesn't but it always helps to calm him. We also use Bach flower remedies White chestnut, this helps to stop repetatitve thoughts and he has found it quite effective. Denise 2