Annea

Big hugs to you and your daughter..... I think that unless people are in the situation they do not understand what siblings go through! My 11 year old is recently swinging between desperate sobbing and horific angry moments.... I know it's because she has always played second fiddle to my eldest A/S daughter and no matetr how I try, she always seems to come out of things smelling of roses wheres my middle duaghter always feels the need to give in... It is sooo tough for them...... I hope she feels better soon, and just know it's not your fault, we have to do te est with the cards we are dealt. Anne

I ahve finally sent of my dissability discrimination claim for my daughter.... I have support of my solicitor and a rep from IPSEA will be representing me, but it is still scary, has anyone gone through the process? How did you get on? Anne

Thanks Mel, It seems that their are so many of us I just spent an hour on the phone to my IPSEA rep, in the end I was in tears, he told me I should carry on with the DRC claim against the school and he is going to represent me at the hearing, he also spoke to my solicitor for me to ask if she could support me a bit, I am floundering and I just got stuck in the paper work montain.... I feel a bit more positive now, at least I feel I have got some professionals on my side! I really feel for all you guys out there in the same boat as us.... Big Hugs to everyone... and good luck with your battles.......... Anne

Thanks Pink, My G.Pis a bit rubbish really, I have tried to get hold of her Psych team today, but ones on holiday and the other is on annual leave. I think i will email the school once again and ask for a reply within 7 days. I have a contact in IPSEA so I will maybe ring him as well and ask his advice... It is just so waring... I am sorry to hear your son is in a similar position.... Hope things improve for you too! Anne

Hi Everyone, you are you all keeping well! Any advice for me anyone? As I have mentioned before my daughter goes to an RC secondary she is now in yr 9. I was taking a claim against the school to the DRC, because of a trip that my daughter had to drop out of twice, but it is so prolonged and due to my own ill health I have been reluctant to take it all the way. Just before school restarted I emailed the head and said I was prepared to drop the claim if he would apologise to my daughter and give me assurances that the problem would not reoccur for a third time. I also emailed the same letter to the chair of governers. Some 8 days later and I haven't even had my mail acknowledged. Do you think I should mail once again? Since starting this term, no one has even taken my daughter to one side and asked her if she is Ok, how she is feeling, nothing! She is desperately lonley and unhappy at school, she has never had a big friends base but the few friends she did have, have now turned their backs on her.... She has asked me about home tuition, she doesn't want to be in school... On Friday she sobbed for hours when she got home and couldn't even eat any tea... I am so worried about her! Our house is so noisy, she comes home from school so stressed and just needs to be quiet, but her brother and sisters are all full of fun and chattering and this sends her ballistic.... she has taken to lying behind the sofa to try to find a bit of 'me' space!! I have mentioned in another post about her being assessed by an OT who might be able to offer some ideas, but I don't know how to get an OT.... I was going to ring social services this morning and ask to see if we could be referred to a social worker, but I can't even find the relevant department... they seem to be hiding! Sorry to go on and on.... I am just so sad for her at present! I know that there will be people here who understand what I am feeling just now! To top it all my ex husband was talking to me last night and said... you know it would be a good idea if you started to look forward you know.... it's all right working around her, bt she needs to learn to be able to cope with all the difficulties she has!!!! Does he think I don't spend every waking moment worrying about her future.... Should I be forcing her to tackle all these things that cause her to have such high anxiety levels.. just because she will have to cope eventually??? I do constantly look at ways she can tackle things in different ways to reduce anxiety... but he is more worried that she MUST be able to use public transport.... Feel like sticking my head in a bucket of water today! Sorry for the rant.... Anne

Have a look here, it is not a local initiative but a governemnt one... http://www.communities.gov.uk/publications...facilitiesgrant I spoke to a friend this evening who knows someone who got a grant for a severly disabled child... she said it was a vey prolonged affair.. took about a year just to okay the grant then the grant was put on hold for 5 months then it took months to do the work.. it was about 2 yrs in total..... If we had to wait that long i think we would be needing places in the local psych ward.... I also understand that the work has to be necessary to improve the health and well being of the individual and that all alternatives have to be looked at first... Good luck with your rennovations! I don't think the application mentions any age restrictions but I might be wrong.... Anne

Thank you Nikki, I honestly believe people just don't understand what it is like living with this 24 hr pressure, not just the child, but the fact that it affect negatively everyone in the house..... Anne

Our GP initially told us they wouldn't prescribe my daughters Melatonin, but changed there mind, I now have no problems with it. Anne

Thanks Nikki, I am going to contact our local social services team tomorrow and ask about how we get a social worker.... Quite a few depts have seemed suprised we don't have one due to having two kids with problems and ill health myself.. I am also going to speak to the housing team ans see if their is anything they can do... I am lucky in that the pead and psychiatric team is really very good and I already have support from the local welsh MP... It seems in Wales that the maxmum amount for renovations is �30K instead of the 25 for England... but it says on the website that if the work is more expensive, you can apply to be funded an extra amount. I will let you know how we get on. Anne

Thanks Nikki, Do you think it would be worthwhile me trying to get ourselves allocated with a social worker? We have often been asked if we have one, but we have never been allocated one. It seems that as my daughter was diagnosed with A/S privately, she didn't get passed through the system as she should.... We are just about to be put in permanent accomodation with the council and from the web site, I understand that landlords can apply for this grant too? It might have more power if they apply on our behalf? Can I also ask, have you had to fund any of it yourself, since losing our own home we have nothing to put in the pot, so this would be not possible. Can I ask if you have already put the application in? or do you have to await the various social and OT reports before you can do that? I would prefer an internal room if possible, purely because I think it would be possible to make it more secluded than an outside shed of some variety.. with the other children, I can't imagin how I would keep them away. I have decided that I am going to record my daughter when she is very distressd with the noise. I know people just don't understand or believe just how bad these kids can feel sometimes... Anyone else have any ideas about this grant??? Anne

Thanks Nicola, Di from here as mailed me some local info.... it only mentiosn things like widening door ways etc though.... We have tried ear defenders, but she can't cope with the pressure..... I have aso tried the earplugs but she can't bear the thought of putting them in her ears! The shed summer house idea is good. but it would need to be sound proofed as otherwise it wouldn't work.. How do you heat yours? I know that she would spend hours in there so I think it would need to be heated? Thanks for your help... I think I will approache the council... we are actually waiting for permanent housing so will speak to the housing officer....

Hi Wardie, My daughter also A/s was diagnosed in yr 6, she went into yr 9 last week!!! (where have those years gone!! We worried terribly about the transistion and I think you are right to get things in motion now, as it is a huge strain for children without problems never mind those with A/S We had various meeting s abut what would happen when she moved up, but unfortunatle she isn't in a particularly helpful school and the efforts are always half hearted at best... I would say from experiences.... social stories, social stories, social stories..... there are so many things that are different that it helps to give them the scenarios. My daughter is also very rule bound although unlike your son she is timid and turns the anxiety in on herself... Her psychiatrist is working with her now on these issues... I have had to work closely with my daughter, as I don't want her to feel she is a problem, but I think that whatever you do to prepare, it is tricky time.... Are you involved with the ed psych and the sencos of the proposed secondary schools? My daughter had several visits t the school prior to starting so she had a good idea of what 'big school'was like.... you need to get as many people on side as possibe.... it doesn't always work out, but at least you can give your son every chance at a stress free transiton... good luck to you both!! Sorry if I have sounded cynical just a bad time at present... Anne

Hi Everyone, wonder if you can help..... My daughter (A/S) is struggling more than she ever has.. she is hypersensitve to noise etc and we have recently had to down size our home... My daughter keeps in her emotions at school and needs some space at home... she is going ballistic with the noise..... we have 4 children, a VERY noisy 5yr old boy, a possible A/S 9yr old, a VERY hormonal and angry 11yr old, and the house is constanty noisy!! My daughter has already been referred to the psychiatric team for anxiety management... but she NEEDS somewhere to go to curl up in the quiet!! Now to my question, I have heard that their are government grants available for home modifications needed for dissability.. Is this correct? Has anyone heard of such grant and if so has anyone heard of anyone of anyone using it to convert a loft or build a quiet / multi sensory room? We are now in a council house and I doubt they will do it without some overnment grant, but I don't know where to start... I am so scared for my daughters sanity!!! PLEASE can anyone help??? Anne

Hi, Tylers mum have pm'd you back... My daughter goes to st ALbans and very few people know in her school, but the way I see it, the only people who would really go, would be people who either have contact with those who have and ASD or professionals so she is happy for me to arrange it. As for the subjects I thought of it being quite general, BUT as firm arrangemnts haven't been made we could still jiggle the seminar.... Let me give you all soem further reasons for the seminar... I have missed ALL wendy's talks so far but have heard big reviews, My daughters scjool is in dire need of some real guidance from a 'real' expert, I think it would do all children their a BIG benefit. I also know that their are many health professionals in this area who would also benefit from a seminar here. The reason it seems so rushed is that I only spoke to Wendy the other day about the possibility of a seminar and as she is here from OZ in October, she suggested the dates either 23rd or 25th.... She is in North wales before those dates, London after I think. I am 'only' a mum trying to get Wendy in this area so we can all benefit... but I am very aware of all the costs that I have to cover... Wendy is not expensive as far as many experts go, but her fees have to be covered so I anted to put feelers out to see who might be interested... I can't afford the fees myself Anyway.... Will try to get more details.... Do any of you in this area go to support groups, so I could tap into potentially interested parties from those groups? Anne

When the assessor came around to see us, he asked me about benefits etc, one of the children I applied for has A/S and is on full rate care the other is as yet undaignosed and I haven't yet applied fr DLA. I told him the situation but he never asked for proof. Two days after he came, i had a letter and some forms through the post asking me to fill in with proof details of benefits The letter said to give them to the assessor (who had been two days before) I meant to send them off to the family fund anyway but forgot and noone ever asked me for proof.... Must admit as said in my post above, the organisation seems to be,,, let's say a little unorganised... it seems a shames as they do so much good! oooo And we finally got our washing machine! I never thought I would be so happy doing my laundry! Anne

Hi all, I know there was a presentation by Wendy in Cardiff back in March, but we are hoping to have Wendy with us the end of October in Pontypool south wales. Parent ticket prices for this event would be approx �5 and professionals, teachers etc would pay �15. This is a tentative query before I make firm bookings to see who would be interested in attending the talk as I know there are quite a few of us parents in this locality. Can anyone who is interested, please PM me or email me if you might be interested in attending this evening talk toward the end of October. (23 rd or 25th) Wendy is a lovely lovely who is Autistic herself, she also has many , many qualifictions surrounding Psychology etc. You can see her home page here: http://www.mugsy.org/wendy/ Anne

Thanks everyone!!!!

We are due to spend a week in Blackpool thanks to fam fund. We want to do the pleasure Beach but wonder at other peoples experience with a child with Aspergers? My dd hates queues and hustle bustle and after Orlando and the caring treatment received there, I am worried it will be just a big anti climax? Anyone? Anne

well, we had our visit in June 14th and on 11th July was awarded �400 toward a holiday (this has paid for a week in Blackppol in Half term hol October for all 6 of us a t Haven) �200 between my 2 daughters for clothes and �200 between my 2 daughters for bedding. We were also awarded �400 for a washing machine. In the letter it said a comet voucher would be with us within 21 days but to date it still hasn't turned up even though apparently re issued! I feel quite selfish complaining but as a charity spending public money I think they should be a little more careful and more organised. When we were awarded the machine back in june it was like THANK GOD! ours had just blown up, but now 8 weeks later we have been using the launderette twice a week at �25 a time!!!!! therfore we have actually spent �400 on washing!!! Also all the hassle of the getting the stuff to the launderette and the diesel and parking costs, it would have been cheaper to have asked my mum to buy us one and paid her back, week by week! It seems sucha shame and a waste of that part of the award! Ah well... hopefully it will turn up soon, when I rang them today they told me that Comet had reissued the card again BUT it could take up to 21 days!!! WHY??? Anyway,.... hope some of you are having more luck than us! Anne

quote>>He has put us down for a holiday (he said something about having to choose from a selection with a company- does anyone know more about this? the places you can go etc?) Does anyone know about how the holiday thing goes with the family fund? I am still waiting for the details to come through.

Had my visit today from the family fund man, he was very nice and not at all judgemental. My house was a real tip!! He has put us down for a holiday (he said something about having to choose from a selection with a company- does anyone know more about this? the places you can go etc?) He has also put us down for a new washing machine and clothes and bedding. I am so very grateful for this fund, just not having to find the money for a new washer will be a god send..... Anne PS my application only took 10 weeks approx so hope for those who have applied and think its a long long wait!

Well I sent off my application about 10 weeks ago and heard today that someone will be coming around to see us next week. I was expecting it to be longer having read some of the responses to my earlier post. Does anyone know how long it takes to receive an award when (if ) one is made? Thanks Anne

Have just glanced through the family fund thread an their are a couple of people who had sent their forms in some time after August and have had awards made. Did you say you had checked that they had actually received your application Smiley? I suppose this is what happens when a charity can make a real difference... they get deluged! Anne

OMG thats nearly a year!!!! I had a letter back from them within a week of sending the application and it said 8- 12 weeks! Wow, I won't hold my breath then! Has anyone else who applied after August been visited??? Anne

Oops sorry everyone had a mini moment of madness yesterday I am sure i had posted this in the family fund thread.... Must be going mad........ sorry!!!!! The question still stands!! Anne