General Chat

There seem to be an awful lot of us on here with children on the Autistic Spectrum. Asperger's, ADHD and unidentified social/emotional whatnots. We all must have experiences and advice, questions and problems to share. Lets all try and help each other. Maz. XX

My son is Jamie, he is 7 and he has a Statement of Special Needs due to speech and communication delay with social, emotional and behavioural issues. He is currently waiting to be assessed for Asperger's. When we applied for his Statement the LEA turned us down 4 times, so we had to go to a tribunal in central London, which we won. I am happy to help anyone in a similar situation. The best piece of general advice I can give is that you know your child best - so shout shout and shout again until someone listens and takes notice. Maz. XX

Some useful websites ... www*parentpartnership*org*uk www*dfes*gov*uk/sen www*nas*org*uk www*asperger*org*uk www*addiss*co*uk www*afasic*org*uk

Maz one of mine is the same.... he had septicimia when he was 10 weeks old and it left him with a load of problems! 2 years ago he couldnt even read or write but thanks to a great special needs school he is now getting there! He is now 16yrs and is at college, he is doing a rural skills course and is loving it... he still has problems and is mentally a lot younger than his physical years but he is getting there slowly but surely. Shaz xx

Shaz you must be very proud of your lad. The thing is that you are SOO proud when they achieve ANYTHING, yet they can just next moment be so frustrating too! At the moment I am keeping a behaviour diary for my boyo ready for his assessment. I am sure he has Asperger's - just need the official confirmation. I don't think the DFE does enough to educate teachers about these conditions - so many of our kids end up with the 'naughty' label when its just not their fault. Maz. XX

I totally agree with you there Maz! My son ended up punching the receptionists window at the mainstream school he was attending through sheer frustration. These schools are given quite a bit of extra funding per statmented child per term but they dont use it to hire proper staff. They did until my son was about 10 then they stopped and he had to make do with a classroom assistant who had to divide her time between 3 statemented kids in the one class. This girl didnt even have any teaching qualifications, had never went to University and only had two A levels, one was in music and the other in Drama! I actually caused a whole stink over the way my sons school was ripping off the Local education authority and I removed him from the school when he was 14 and he went to a special school after that. Shaz x

hiya,my daughters emily 7 she has aspergers and selective speech,shes not been statemented yet because school say she's no classed has special needs! on recommendation of her hospital dr ive requested the right to have her statemented,my senco has told me this will be difficult and long winded.i dont care how long it takes im willing to fight for emily so that she get the help in school that she needs. i also have a son matthew whos nearly 16 now he has aspergers and adhd,he went to same school as emily and slipped through the net i was put down to being an over anxious mother and matthew was a naughty boy according to school.matthew has not long been diagnosed with aspergers and adhd and is now on tablets. thank you so much to maz for starting this thread as it means alot to know that others are there to offer support. thank you maz. Debs.x

Oh Shaz, How I agree with you about mainstream schools ripping off the system when it comes to help for special needs kids!! I was a Special needs assistant - or learning support assistant - depended on whom I was talking to - in a secondary school for 2 years. The first year I was allocated a boy with Spina Bifida and Hydrocephalus. This included assisting him in the classroom - and the bathroom - alone. When I pointed out the danger in this I was told to stop fussing!! The second year I was the help for a year 7 Downs Syndrome girl, and a year 11 Aspergers Syndrome boy. I had to differentiate all the work for the girl - apart from Geography (the teacher there knew it was her job!!), and sit with the Aspergers boy - and still do bathroom duty for the boy with spina bifida!! Oh, and I also looked after a boy with an unspecified mental disorder, and in the meantime made the SENCO look at 4 other children I had identified with non-specific learning difficulties (I thought this was her job - she got enough money!!) I was also expected to be a dinner lady - all for a minimum wage!!! The boy with Asperger's wanted to go to college and do 10 A levels!! He had the ability, cos he would have stuck his nose in books and not moved!! I convinced him 5 would be enough - and perhaps he could try a social life!!! - even voluntary work!! His parent's weren't too happy with me - rather than encourage him, hey tended to push him - and the school went along with it. He got his 5 A levels and made many friends at college - and did extra curricula activities!! I loved that job, despite being put upon, but needed to earn a liveable wage so had to leave and do boring office work. maggie

Oh sorry Mags I hope you dont think I was knocking support staff :-) The girl I spoke about earlier who became my sons classroom assistant actually ended up being one of my closest friends which is how I know what her qualifications were/werent she had an excellent relationship with my son and it was the so called qualified teachers that were useless. She earned a pitance of a wage and also had to give up which was a shame. Shaz x

Can I please suggest to anyone with young children, that when you start their early years education which is usually at about 2 and a half in Pre-school, you look for one that does continual assessments on children and / or follows the stepping stones for the foundation stage. Ask who the Special Educational Needs Co-ordinator is or whether they have one. Over the last few years many children have been highlighted in Pre-schools I have worked in and have received help at an early stage through the Early Years system. I may be fotunate enough to live and work in an area where services are good but even then, a lot of parents have been unaware of what is available. If a Pre-school says they will have to consult the Committee as to whether a child with extra needs can be accomodated, go somewhere else that accepts the child first and then discusses any extra needs. Good luck to you all. Jacky :-)

My 9 yr old son has mid range autisim, adhd, and is deaf in one ear. Bless him he does his best but can be very challenging. He has no idea of danger whatsoever, he cant go out to play as he would be gone for ever in moments. His school is very good with him, he has from the senco 20 hrs per week for a lsa, but he does get more, which thankfully the school are more than happy to give him. It took me more than a year of me throwing bigger wobblies than he did to get him diagnosed with adhd, and another year for the autism, ( mum's you know your child best). The problem we have with him now is the violence, but I have been told that is down to his autism and not the adhd, so the ball has now started rolling at school to try and do something about that, it seems that as he is getting older that part of his behaviour is getting worse, so we have to try and do something now before it gets any worse and he is totally uncontrolable. He is a lovely boy who likes nothing more than playing for hours on his x-box, that took a long time to find something that did hold his attention for more than 5 mins at a time. I know people say they are bad for children and to limit thier time on them but it is easier said then done when it is really the only thing in his life that gives him pleasure. Now that he has been diagnosed his school has been more than helpful, its the doctors that arnt, I was told he had autism here are some leaflets, get on with it....

I used to get a lot of references to Dustin Hoffman,in 'Rainman'. A lot of people don't understand, and until Mark I hadn't heard of it. Then started to read up on it too much, and frightened myself!.. Mark was 15mths then, he is now 18, but very small and slim, although immensely strong!. He has only recently started puberty!. Can be ok one minute then anything can upset him, very unpredictable. Does a lot of throwing!. Hates supermarkets, on school visit to Tesco, a customer complained that he shouldn't be in the shop!. He loves swimming, and walking in woods and forests, and his own company!. *update 2005* Mark is now 19, and moving on to pastures new in October, this will be a very stressful time, as he will be in a new house for 4 people with carers, and will have some kind of day activity, as yet not sorted!!, am not looking forward to this for him, going to be very stressful :(

I've got Chris who is 15 and has Aspergers. Don't even start me on school problems. Its also the attitudes of others, both adult and child. It seems impossible for people to understand that Chris percieves things entirely differently - and they can't or won't make allowances for it. and as for all the little eejits in school who think that being different makes it ok for you to be got at .... Lisa

For all You Mums, Dads and families you are doing a wonderful job with your children, i admire you all. I worked with learning difficulties and disabilities in community homes, as a Residential Social Worker, teaching life skills, i worked 15 hours a day five days a week, so i have some idea of how challenging each day is. I worked with aspergers, autism, adhd, prada willie,downs syndrome etc etc. these were all clients that the parents were unable to continue having at home, some had been abused and others went on to abuse. One thing i learnt is that strong guidelines and consistency worked, i taught everyday life skills cooking, gardening, personal hygiene, house work etc and some eventually went on college placements, for the classes held for learning difficulties. all children are special and i found this the most rewarding of my careers. I would argue their cases with social workers and physciatrists for their personal rights and in some cases even got medication changed.to give a better quality of life as some were on such high doses and hadn't had it changed for years. I wish all of you alot of happiness with your extra special children and i am sure the good times will always outway the hard days. Happiness to you all sandra

Hi guys, I have an 18 year old with ADHD/severe dyslexia and autistic spectrum tendencies. Please join me and lots of other parents on our board at adders(.)org for information, a good moan and a larf. Look forward to you joining us. Nan

My daughter is 17 and from day one we knew there was something not quite right. She constantly cried I never knew what it was like to have a good nights sleep for years. I had a four year old daughter when she was born so had some idea of the average milestones. It was all totally different. She was thirsty all the time but wouldn't drink from a bottle so I ended up breastfeeding for 14 months, luckily all three of mine were very late starters with their teeth!! She was trying to pull herself up in the carrycot on the straps at 6 weeks, I wouldn't have believed it if I hadn't seen it myself. We had to put her in a buggy. At five months she was crawling couldn't put her in a walker, she would climb out. 9 months she was walking. Her speech was very poor and she was always clumsy. I got fobbed off all the time. Whoever I asked for help used to just say she'll grow out of it when she starts school. She was almost chucked out of playschool, (too cheeky) a week after starting nursery she got pushed off the climbing frame and broke her leg. She had to leave the brownies as they too thought she was too cheeky and I got complaints all the time. At primary we used to be called in all the time, but the head teacher wouldn't recognise that there were major problems and get her statemented. The meetings were just a joke. We got her into a good school with a special needs unit at secondary. She was there a couple of months and the special needs teacher got her statemented. Top level funding was awarded and the school employed a helper for her on a one to one basis in the classroom for about 90% of her classes. Unfortunately we moved a year later. The school she moved to was a total nightmare. The funding was given to them within 3 weeks of her starting all the help they provided was a weekly session on a computer programme. There was no end of trouble, a boy started a month after her and they really clashed, guess what they were put in the same sets. Another load of meetings no joy. The senco insisted it was my daughter not the school, really helpful, and would not supply any extra help. The year she was there everything went down, her reading at the time was around 6 years (she was 14) still this senco didn't think she needed more help. Where was the money going. We eventually got her into a special school in Clacton, 20 miles away. Guess what 2nd day she was there the boy we had all the problems with at the other school appeared, he had been got into the school by the senco!! Her knowing full well my daughter was going there. So her last 18 months at school were blighted by this boy. We have never had a definitive diagnosis it says adhd but we firmly believe it is more far reaching than that. She has been tested for other things but nothing conclusive has come up. Now she is on the gateway course at college. She is still having a lot of problems but mencap have taken her on and are going to try and get her some work experience and hopefully some paid work, she is very naive will believe what anyone tells her and is unable to judge situations, making her very vulnerable. She goes out with another charity called circles of support sometimes. But all the help (not much) that I have got is never from the nhs or whatever, you just get told, she doesn't meet the criteria, it's from charities. Diane

Hi, My daughter is 10 and has ADHD and a learning disability, and global developmental and speech delay, she has a statement of special educational needs and goes to a great 'special school' here in Portsmouth. What I find very upsetting are the 'looks' of horror I get from parents of 'normal' kids when she plays up. I suppose, because she looks like a normal, pretty, blond hair blue eyed little girl, they just think either I am a bad mother of she is undisciplined and a child from hell (which she can be). She has no idea of stranger danger and would go with anyone, no understanding of roads, no social skills (she'll ask the most cringing questions directly to people), and needs to be watched constantly. My husband works abroad a lot, and I get no respite, (social services don't want to know), I have been on the waiting list for over 5 years for respite, I only have one family member who will help me out, but she is 'getting on', bless her! My mother doesn't want to know. We also have a son, almost 13, who has been labelled as a 'gifted' child, he is bright, witty, great fun and I don't know what I'd do without him but he too, feels the strain. He feels that she has torn the family apart and thay we can't do things like 'normal' families do. Just wanted to rant..sorry, I love her dearly but GOD she is hard work. Julie

Julie What you are saying is almost identical to me. We have never had a social worker, when we tried just got fobbed off. When I asked for some respite was basically told it would be taking "a bed" off somebody who needed longer term help! I said would I get some help when I'd ended up committing a murder then, no answer. These agencies don't realise the strain it puts on families. My older daughter moved out at 18 no longer able to put up with it. My 10 year old son is very bright too, he reads spells etc., for her. I have no help from anybody. Friends I had that I used to visit with my older daughter, suddenly no longer want you round. They did look at her and think she's just a naughty out of control child because she looks "normal", total discrimination. She missed out on so much. Now she's 17 she has no statement even though her psychiatrist said it would continue until 19, this would have then provided transport to college. The reason for this is that she is at a college not a 6th form. Well I don't know any special schools with 6th forms in our area. She is expected to leave here at 7.15 to get a bus into Clacton 20 miles away to go to college. It's not achieving anything. If she misses the bus home the next one is 75 minutes later. I don't want her hanging around Clacton all that time, yet they moaned because we said she had to leave 5 minutes earlier to get the bus. No one wants to help you. Diane

Guys, I have to say that you would all find a lot of people in the same boat on the adders(.)org board. Aspergers, ADHD, dyslexia, dyspraxia, autistic spectrum, - please do join us as there is a huge amount of info on the site for help with applying for DLA, carers allowance, statementing, SEN, dealing with schools and CAMHS. Just check it out please - it can be a life saver.

Thanks Guys for your replies, I know I am not alone, just feel it sometimes! Where in Essex are you Diane? My son was all set to be born in Clacton Maternity, then things took a turn for the worse and in the end was born in Colchester Maternity (daughter too, actually). Moved back home to Portsmouth in 1996. Julie