General Chat

HI Sue Iknow what you mean abour professionals backing off, I had great support until my son was 18 (he has severe learning difficulties) including respite etc, and then it all disappeared, no social worker, no respite carer, nothing, If I want him to go into a social services daycentre it will cost me £11 a day and that is without a cooked meal, just a packed lunch from home, If I want respite it will cost £10 a night, I'm on benefits how can I afford this. Linda P

Oooh Linda All I can do is sympathise with you, I know how hard it is having a child with special needs myself. It makes me so angry that all these professionals dish out all this advice, without having a clue what it's like telling us what we need to do. Then they just pack us off and just expect us to get on with it, without any help what so ever. I took a drastic step last year and self referred myself to Social Services because I couldn't cope. That was a big step for me having a bad experience of being in care myself and being let down. They said that they couldn't do much for me as my son hasn't got a firm diagnosis of Aspergers and even if he had I don't think much would have been done to help us. I'm not a violent person, but sometimes I just want to punch these professionals because of their attitude towards us as parents. One of them said to me, why do you feel the need to know what is wrong with your child and then she said, well there won't be much different in the help your child would get. I told her that there would be a lot of difference, as teaching a child on the Autistic Spectrum is different to teaching a child with ADHD. I'm not knocking all professionals because most of them do a fantastic job considering they are under so much pressure. But when you get the ones that can't even be bothered to listen to what we are saying, that's what annoys me the most. Nicola

HI Nicola It would be nice to see somebody to get angry with there is nobody, got to go now my timne is up in the public library Linda P

I agree with everything said I had to fight for help since my oldest boy was born I have not had respite or anything. I wish they would listien to us mothers we know when there is something wrong

By Linda take care and chin up, I will always be hear to listen if you would like to offload. Nicola xx Valerie there are some great sites out there for parents, one of them that is good is the cheeky monkeys at: http://cheekymonkeys.netfirms.com/ the other is adders http://www.adders.org/ Hope this helps Nicola xx

Valerie Yes they don't listen to us parents, all they do is Criticise us parents to the point when we start to doubt ourselves. Nicola xx

Thank you very much will look up sites after my dinner it is good to know this site is here and people do help with advice when they can and we can give each other support even with just a few words means more. Nicola we should never doubt ourselves as long as we know we tried to me thats all that matters val

Your welcome Valerie, there have been some really nice people on here that have given me support and it's really nice to be able to give something back. Nicola xx

There is a place I am not sure but at time I got help it was called THE FAMILY FUND you have to write maybe if you search on web ferret or google I only got for eldest but they gave me money every year for a holiday or days out,beds,bedding and delivered a new washing machine and tumble drier your child has to be bad but not sure how bad now as didn't get for middle son could be worth checking. Tickle Pink can the hospital get on to Social Services for more help that would be worth try

Oooh Tickle I am so sorry, it makes my problems not half as bad as it is for you and your family. If you want to off load that is fine by me, you talk as much as you like. Have you tried doing search on the internet to see what there is available. There are so many great sites out there for parents and children, that there must be one of some use to you all. Nicola xx

TICKLE PINK Just been on a site might give your daughter some help it is called HOLIDAYS FOR DISABLED I think you should give it a look they organise holidays 1 week a year and a doctor on hand unless stated hope it helps val

Hi everyone My son is 16 in his last year at school and has ADHD, we have had lots a problems over the years, not to do with his academic side he is very intelligent but social, but we are getting there. Must say can't wait for him to leave school though. My daugher I must say is just fine thanks goodness lol

I work at a nursery and we have a lot of professionals come in to look at the kids - with parents' permission - about whom we have worries. We are Montessori based but not rigid and because we treat each child as an individual it has got to the stage where the Ed. Psychs and doctors are recommending us to parents and as well as lots of 'normal' kids we have some with problems, physical, psychological and educational, from as young as 2 yrs. I know how hard it is to get official support because I used to work with teenagers with 'special needs' at a mainstream secondary. Can I say, don't knock the Learning support staff at whatever level because they all report back to someone qualified, they all love the children and they are the best to be had. I live in a rural area and I see some of my 'hopeless' kids driving tractors, building, down the pub, and they all say 'hi' and I'm thrilled they've grown up happy.

Hi Helen All the learning support staff at my son's school are fantastic and the Senco is also fantastic, she has tried to get the specialists to listen also. I would never knock them as they always try to help my son. It's just the specialists that don't seem to listen to what us parents have to say, which as I said earlier frustrates us so much to the point that you would want to screem at them to listen. The trouble is, it's hard for senco and the learning support, because half the time they feel so helpless. They try to support the parents and children as much as they can, but their efforts seem wasted sometimes. My Mother is a learning support at a secondary school, and she is frustrated half the time. Nicola xx

In my experience the problem is not so much with either the school or the specialists - its the piggy in the middle that causes the problem, the flamin LEA. All down to money, budgets and political correctness. Maz. XX

Nicola, I hear what you're saying. I have a friend who complained for years on behalf of her son. He is her 2nd child out of 4. He drove all his teachers potty, not to mention his mother. She was brilliant and stood by him all the way through. His parents finally divorced but she forced him through mainstream school where they said he was just 'difficult'. He was also school phobic by the time he was 14. I have babysat for this family lots and had the kids round to tea. They have had a prejudiced existence because of this boy who blew everything. He is now nearly 18 and at college studying music technology, very happy but still not easy. Can I say, fight for what you believe because Mum is usually right.

i totally agree with maz,at the end of the day it does come down to money,schools always say they not got enough in the budget.its taken me 2 years to secure 1 hour a week for my daughter who has aspergers and selective mutism with a specilist teacher.you have to fight all the time to get help,i also have a 16 year old with adhd and aspergers and finding it hard to get any help for him at all,he attends a james brindley school now because he got school phobia he made us all proud lately by acheiveing an A* in school exams, lea have a lot to answar for in my opinion. debs.x

carole my heart goes out to your little grandson,he is so lucky to have a loveing,careing grandma and parents.i truelly hope you get the help you need in the very near future. luv debs.x

My grandson who is now 21 was diagnosed with Asperegers upon his arrival in New Zealand. The family had left Devon where he could not get any treatment and was banned from school for his violence..His parents were blamed for his behavior. Upon arriving in NZ they contacted a child pyscologist who diagnosed Aspergers, put him on medication, appointed a specially trained health visitor. He did have outbursts but the Ritalin helped a great deal. He is now at Victoria University Wellington doing an honours degree in Georgaphy. He came top of all the country in his pre university exams. He has learned to control his outbursts and leads a normal independent life This goes to show that you should never give up on these children. I feel for you all and wish you all the very best brenda

Tickle you have a winge all you like, at least we are all in a similar situation so, therefore, are able to understand what you and your family are going through. It is extremely difficult to talk to someone who dosen't understand what we are all going through. I have supportive friends and family, but they have no idea what's it like, so therefore don't know where we are coming from. I always find comfort in talking to people who are going through similar things to what we are. Brenda I'm sorry to hear that no one listened to you and your family, I have found that they also don't want to listen to us. I am fortunate enough to be able to afford to pay private. My son get's disability living allowance, so I am using that money to pay for it. It's just a shame that I can't use the money for other things for my son. There are so many people out there that are not as fortunate. Nicola xx