nellie

ASD Family Help and Berkshire Society are worth looking at. They both have social groups. http://www.autismberkshire.org.uk/default.aspx http://www.asdfamilyhelp.org/index.htm

Hi Lynn, Forgot to say, this step by step guide should be used by anyone carrying out an assessment of need. http://www.autism.org.uk/socialcare Nellie

Hi Lynn, I haven’t posted on the forum for years but saw your post when I visited this morning. I hope the following information is helpful. When writing the request for assessment it's important you include the part relating the section 47 of the NHS and community care act. Good luck. Nellie Local authorities' duty to carry out a community care assessment Local authorities have a duty to assess a person who may be in need of community care services. They may need services because of serious illness, physical disability, learning disability, mental health problems or frailty because of old age. The local authority is obliged to carry out a community care assessment when they become aware that someone may be in need of community care services. This may mean that an assessment is offered even if you or the person you look after have not specifically requested one. Alternatively, you or the person you look after can contact your local social services department and ask them to arrange a community care assessment. Template letter for requesting a community care assessment You don’t have to use this letter exactly as it is. You can use it as a guide for your own letter if you like. You should send it to the director of social services at your local authority, they will probably not reply to you directly but will pass it on to the right person. [Your address] [Your telephone number] Date Dear Sir/Madam, Community care assessment I am writing to request an assessment of my needs under Section 47 of the NHS and Community Care Act 1990. I have [say what your diagnosis is here, if you do not have a diagnosis say what some of your difficulties are such as anxiety, depression etc]. This causes me difficulties in the following areas of my day to day life . I need the following services [state which services you need to have provided]. I look forward to hearing from you. Yours faithfully, [Your name]

Lorry <'> <'> My thoughts are with you. I have answered by PM. For once I totally agree with baddad Nellie xx

Hope it goes well Bid. <'> Nellie x

Hi Viper, Good to 'see' you again and great to hear your good news. Nellie x

Thank you for sharing this wonderful news. Well done both of you. Nellie x

Loraine <'> <'> "dont worry no one was hurt"...........that just sums it up!! You have fought so hard to get your son the support he needs and is entitled to, it's the system that has let him down, not you. Try to hang on in there for a little longer, with your help, knowledge and experience it might just get better. Take care Nellie xx

Hi Loraine, So sorry to hear you are having these problems. <'> I agree with Jaded, you do lose control when your offspring becomes an adult. As you know my son has been in an ASD residential placement for over 10 years, they are very good but we still get the odd blip when things go pear shaped and he crashes. The big bonus is they work with us, we just have to flag up a problem and they have a meeting to sort it out, we feel part of the 'team' and feel our voices are heard. I would love to have my lad living nearer to us as he's 4 ½ hours drive away but I worry we would lose the partnership we have. He has a good life, better than we could give him at home or any local assisted living place could give. I have to say most of the problems are due to my son reaction to something they have done or not done and they don't realise his behaviour is not the problem but a way of communicating the problem. I have supported a few parents in the past who are not allowed any input and in some cases have no contact because their offspring refuses it. They are not even told why their offspring doesn't want contact with them or if they understand what it means. I hope this changes sooner rather than later, parents need to have some rights. I'm gobsmacked that the day centre doesn't understand that your lad will react in some way to his new placement, he could display this in many ways including physical signs. I can only suggest you try to work in partnership with them, not always easy but you need to be able to have a voice. It's often the case you have to find evidence to back up what you're saying, or find an ASD expert to give evidence. It's not just for your son's benefit but the benefit of everyone who looks after him. Try hard not to alienate them, let them know you would like to work in partnership with them. I don't know what his rights are to privacy but it sounds as if they have overreacted and brought in everyone, but you have to wonder for whose benefit this is! You could create a folder documenting all your sons needs including his likes and dislikes, medical needs, what works for him and what sort of things would give a negative reaction, try to paint a picture of your son, you know him best. They should be grabbing your input with both hands. I hope you manage to work something out and your GP is helpful. Nellie xx

Happy Birthday Gordie! (phew - nearly missed it) Good to see you on the forum. Nellie xx

I emailed the NAS asking if they propose to take any action. I received this reply today. We have received a number of enquiries regarding this issue and we have produced the following position statement: http://www.autism.org.uk/nas/jsp/polopoly....647&a=20232 Nellie x

If you think your child won't cope with flying, I would seriously consider a holiday in the UK. This link gives information on holidays including Airport Awareness - Travel advice for parents and carers of children on the autistic spectrum. http://www.asdfamilyhelp.org/info%20leisure%20holidays.html Hope this helps. Nellie x

Hi Delyth, That's wonderful news! Well done, what a great victory, you should be very proud. Nellie xx

SD, <'> You have been here for almost 4 years. You are you, a respected and valued member of this forum, you don't need a diagnosis to be here! Welcome scoops Nellie xx

NAS - Autism Action Network http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=2305

There is a limit to how much the school can charge. Details can be found here. http://www.ace-ed.org.uk/advice-about-educ...stions-faqs.htm

Brilliant news Hev Well done Steve.

Would it be possible to find someone in a similar situation who would be happy to share a holiday? Maybe contact a local parent group or similar. This link might offer a solution. http://www.asdfamilyhelp.org/info%20leisure%20holidays.html Nellie x

Hi Hedders, I hope this link to a previous topic helps. School records, How to get access to documents? http://www.asd-forum.org.uk/forum/index.ph...mp;#entry246886 Nellie x

Nope, having read your posts, I think I got it spot on! Let’s hope all the parents / carers / professionals out there don’t take it out of context then! Nellie

Hi Hev, nice to see you. Sorry to hear about Nicks mum. The best of luck to Steve in September. He must be pretty grown up by now. Love Nellie <'>

Hi Janey, It might be best to talk to the school first. I have know quite a few children (ASD and otherwise) who have been frightened by sex education or have acted inappropriately after having it. Hope this helps Sex education and children and young people and with ASD http://www.nas.org.uk/nas/jsp/polopoly.jsp?a=6001&d=1071

QUOTE (baddad @ Jun 26 2009, 01:46 PM) .You don't have to use autism (or any other factor, autism related or not) as the starting point. Ah! ……now I get it! You treat the person as guilty unless proved otherwise. Brilliant, that saves us from making reasonable adjustments. Nice one! Job done! Nellie

Hi Debbie, <'> This is good news. The flat sounds lovely and it's good that you feel at home there. I hope the move goes well and you settle in quickly. Thank you for your email, I have just replied. Love Nellie xx

Hi Szxmum <'> My youngest son was diagnosed with AS at 21. He started to fail during his A levels. He went into full time employment on leaving school but eventually crashed in his late 20's. He attempted suicide and admitted himself to hospital for his own safety, discharging himself the day after his 21st birthday. Knowing when to push and how hard to push was difficult but my instincts told me to give him time and space to recover. I did however try to make him responsible for some things such as washing himself, his clothes and bedding. I would only intervene if the smell became unbearable!! He's now 28, it has taken him 7 years to get where is. Apart from the odd hiccup he is happy and enjoys life. He works 4 days a week for MENCAP plus a Saturday job, (both pay well). Working for MENCAP means he has good support and a chance to learn about people with learning difficulties. He still lives at home and contributes to the running of the house. He has a good social life and plays sport. He drives, cooks, cleans, does his own washing, takes full responsibility for his dog, he is a joy to live with. We feel he is almost ready to leave the nest (with a little support), we shall encourage him if and when he wants to. I look back and wonder how I survived those 7 years, as a carer I felt helpless and alone. It's awful watching your offspring so low and disabled. I decided to work from home where I could appear busy and be close at hand but not in his face. I worked from home as a volunteer for my local autistic society and spent hours on this forum giving advice where I could. It kept me busy, supporting others gave me a purpose. Both my sons found school a struggle, they appeared to cope but internalised their anxieties which had a serious effect on their mental health. I knew my eldest was suffering but couldn't get anyone to understand that he was, although he looked as if he was coping at school his behaviour at home proved otherwise. Sadly my youngest managed to hold it together at work, school and home without anyone (even his close family) realising how he was suffering. I agree with Bid our children are often slower to mature. Hang on in there, I'm sure things will improve with time. Try to encourage and motivate him (not easy) but give him time and space when he needs it. It's important to look after yourself too. Lots of me time and don't forget to reward yourself, even if it's just a pat on the back, which I'm sure you deserve. Good luck and take care. <'> <'> Nellie xx