General Chat

I am a Special Needs Assistant working with children with a range of special needs - physical, emotional and behavioural- this is a job that I thoroughly enjoy and find very rewarding. In my experience most of these children are blessed with caring and understanding parents/carers - so well done to all of you - keep up the good work. Clare

I have a 6 yr old son who is waiting to have a assesment for aspergis. he also has epilepsy, a communication disorder and dyspraxia,he has a left sided weaknes left over from a very servere fit when he was 2 but as he is left handed it is not helping with him learning to write. I have been told he can not be statmented but is placed on the iep register.( I think that is what it is called) Julia

One of my twins,in fact the eldest was not diagnosed until three years ago.He is 43!!!!! Age makes no difference.He is a lovely man but all relationships fail,He is too intense and tries to control his partner.He is totally obsessive with whatever is of current interest to him. He has an exceptionally high IQ as do most who suffer from this disorder. He cannot work as he gets the sack from most jobs he has ever had.He will competely redesign an office,or resheduled an existing working practice.It infuriates his employers as they are not as quick as he is and cannot cope with him.He is a brilliant inventor but cannot get practical things together, To those of you who have young Autistics,you must accept that they grow into adults with the same problems.I spent thirty years telling myself that he would be better. THEY DO NOT GET BETTER. What ever you do keep them OFF drugs. In my experience few medics understand the condition and try to deal with any problems with a chemical cosh. My son manages to live in his own flat and cope for himself. He finds shopping an absolute nightmare as he cannot stand crowds and being surrounded by people. He tends to be fairly reclusive now .He does have agroup of quite understanding friends.He was doing a few hours work a week recently for a friend who runs a reclaimation Centre.We talked bout just relaxing into the job nd not getting too involved.At first it was fine,He enjoyed the odd weekends work but as he got into the job the old problems began.He began to redesign the site. Hwanted to change the methods of retreival and traffic control .He became obsessive again.He cannot help himself and he cannot learn from past experience.He is always right . Inhis eyes we are all out of step.He goes through good and bad phases.When we are ging through a good phase with no dramas,I am just waiting for the Sword to fall. When he crashes he goes right down nd tries to committ suicide. We all try and cope as best we can. Best Wishes Eveyone. Rose

Shaz, Sorry for not replying earlier - work!! - and hasn't this thread grown!! No need to apologise for your comments!! My point was that LEA's councils and head teachers encourage children with special needs into their schools for the extra income, but fail to pass the income on to the people with the responsibility, and I have noticed many people mix up the words 'care' and 'patronise'!! As I said in my earlier reply - I would love to do the work again, but can't live on the income!! Also, I probably haven't got the right qualifications now - I may have a degree in Education - got as recently as 1999, but haven't done any of the recent LSA training - ironic eh? maggie

Right, Im bumping it up again. Please, any parents of children with ADHD, ADD, Aspergers, autistic spectrum check out the website: www(.)adders(.)org/ (remove brackets) This is a UK based web site for supporting parents of children with these sorts of probs and for adults with these conditions. Caroline who set up the site has a 20 year old with multiple problems and that is why she started the group. Caroline attends all the ADHD conferences all over the country for us and knows the experts personally. There is a very active forum. An experts advice board and even some positive things about our kids with these conditions. Trawl the site for template letters for statementing , advice on exlusions, applying for benefits, and lots and lots of other stuff that you will all sigh with relief when you realise you are not alone!! There is also MSN for online moaning or larfing. Hope to see you there!

Hi Julie My three were all born in Colchester maternity home, demolished several years ago now. I moved from Colchester to the hells of Harwich nearly 5 years ago. Cheers Diane

My 3 yr old son has recently being dianosed as probable ASD. I think he has asperger's, though, I'm a long way from having him diagnosed officially. I took him to a doctor with 2 autistic children who told me he thought he was OK and only referred me through one thing I mentioned, the spinning, lucky I said it or he would remain undiagnosed. Thank you Lorraine for bumping this up so it was easier for me to find!

Wow - what a response!!! I have been at work today, so this is the first time I have checked back on the thread. There seems to be a lot of common ground here - mainly to do with teachers, health professionals, friends and family just not understanding Austistic Spectrum and what it does to our kids. It really is the invisible disability isn't it? The other issue seems to be centred around the fight to get a statement and then get it implemented. At our school (me and Karen's kids are at the same one) we started our own parents group for those of us with SEN children. Its not going any more - have to think about that - but it really helps to have someone to compare notes with. Also, the school can't ignore you if it knows you are all meeting. I am certainly going to have a good look at the website that Nan has suggested - www*adders*org - and hope you all will too. I know there are some others out there who haven't joined in yet - feel free to e-mail me or anyone direct if you would prefer. It can't be said too often - YOU are the person who knows your child best. No-one else is going to do it, so MAKE yourself heard!! Don't let anyone tell you that you are fussing over nothing or that nothing can be done. Read everything about ASD's that you can lay your hands on - plenty of excellent books in your library - so that you know what you are talking about. Don't take no for an answer. Maz. XX By the way - did/does anyone else have an issue with others in the family disagreeing with you over this??

My son is coming up to 11. Originally he was in a village school near us but after 8 years of reports stating that he wasn't trying, lack of concentration and us asking for an in school assessment we pulled him out. The new school was brilliant and worked with him on his problems and came to compromise on some points-in January this tear he was assessed as ASD/Aspergers but not serious (I am an LSA and have worked with higher ASD children). The consultant says he is typical and noriceable within the first 15 minutes). we have moved again but this time the information has been passed on and he is settling in well. I just wish that it had been sorted when he was younger and I had not felt like a failing mother ( M-in-L and husband also felt the same way as school as the 'school' must know). we actually had a run in with the heamaster who wrote on his report that Alistair would nebver succeed unless he changed his attitude. It took me two hours to calm him down. Life is easier most of the time now and it is only occassionally that we have the tantrums due to misunderstanding.

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

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.

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

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

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 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

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

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

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 :(

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....

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 :-)