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My son is now 12, recently diagnosed with Aspergers. He is having a hard time at secondary, is now statemented.
I have never really looked much into benefits as I feel as a family we would not qualify and I don't believe it would make his life better. I also find it a bit of a mindfield to understand. However, I am concerned for when he leaves school and is expected to attend interviews etc. He will, then, require a support worker ?? - to help with this.
Really unsure of what to do, I feel support would be required rather than financial assistance.. Do I wait until he leaves school ?? Can anyone offer any advice please. Thanks
Are you receiving Disability Living Allowance? This is specifically for care and transport. If you are not you should apply. Its a pretty draining application form but get advice on how to fill it in. I was told to think of the bad days and fill it in based on that. The NAS website apparently has some tips on filling it in. You really should apply. When it was mentioned to me I thought we didn't need it but applied. We have used the money for so many things for my son that we wouldn't have got without it, including a dog to help his terrible phobia. It worked! When he is older you might be entitled to Direct Payments, we are at that stage now.
Apply for DLA.
It is not your benefit and at the moment not means tested The allowance is for your son and will help to get things that wil help improve his life.
your right - it's not all about benefits, but they are important and your son's right. Go to your local citizens advice bureau who will help you to fill in the forms and get plenty of back up evidence - if it is support you need the school should be giving you regular feed back and reviews of his needs. Get some help from your local parent partnership organisation - ask your education department - it is funded by them but is usually an indepdendent organisation and a statutory right to your needs.
You are doing the best thing by thinking ahead now; imagine where he maybe headed in the future is important for you to do as family are the people who know him inside out - strengths and weaknesses.
I don't know your situation, but from my own experience, the best advice I can give is more than anything to ensure he has as much indepedence as possible in any routine he is involved within when you feel it necessary - making tea, choosing clothes, choosing food when shopping, paying for it, managing pocket money, washing clothes/ recognising why they need to be washed ect -very valuable to any child, but especially a child diagnosed with an ASD. They will learn through systems and routines, and again, just from my own experience, I have worked with many an adult who cannot do things for themselves and find it difficult to change to another routine, and these have usually started with very nice well meaning, concerned parents who didn't see their actions became more sheltering to the person than helpful.
This isn't supposed to be taken literally - it is different for every parent, child and family, there are so many variables at home and away that influence people, but invoking independence wherever possible makes a great start to their future.
If you have a lowish income, find out about the Family Fund. Money won't solve your son's problems but it will certainly make your life easier. Don't be afraid to ask, they gave me money for us to have a family holiday, and I know of other mums who have been given a washing machine and/or dryer for children with continence problems, and another whose driving lessons were funded by the FF. It's not charity money, it's government money.
Pass the word on!
Have a look at Cerebra, this is a charity who helps and supports anyone with a child who has a brain related problem. You can download from their website a booklet that shows you exactly how to fill in the DLA application form. I used this and my son recieves the high rate care of the DLA. They also have a magazine they send to you which is packed full of information. They have a lending library. They have there own helpline, I have found this so helpfull over the yrs.
Good Luck and take care
0808 808 1111
Lines open 9am to 5pm, Monday to Friday
Charity number 222377 (England, and Wales); SC041079 (Scotland)