Elly

I know its about epilepsy, although I was not aware it was a recent diagnosis. Saying that, most things are still accessable with the right support and saftey equipment. I know a young man who weight lifted for the country, swam and did competitive diving and has epilepsy. A friends son does everything his brothers do, he also has epilepsy. I know everybody is different and the type and frequency of fits is highly varible. I would contact the Dr/nurse involved in the care of the sufferer and seek their advice. Maybe researching on a few epilepsy websites could also help. Keep smilin Elly

As long as sensible saftey precautions are taken, I can't see a problem. Trampolines come with enclosures , making them extremely safe, helmets can be worn for ice skating, roller blading etc. OK, there may need to be 1:1 or even 2:1 support, but life is for living to the full. (I've been Ice skating in my wheelchair ) It's no good spending life thinking about 'what ifs' Our children have a hard enough time without be denied as much fun as we can give them. 'GO FOR IT' is our motto Keep smilin Elly

I'm not suggesting that her kicking people should be ignore, I am only to aware of how much other children can suffer as a result of another childs behaviouR. Since attending the school my daughter has had a child try to stab her, her arm shut in a door, her ankle kicked so badly she could not walk properly for weeks and so on. We sent her to this school because it was supposed to be an MLD school. Unfortunately, like most special schools now,it has becaome a dumping ground for children who's main issue is behavioural. When my DD started there, although she was impulsive, she was never violent towards children/teachers. She also loves school and would never have holidays if she could. Over time, with her hormones going haywire, she has started copying the behaviour and language of others. She thrives on structure and finds breaktimes hard to cope with. I have repeatedly asked for her to be given structure at breaktimes, but, as I said before the school does so for a few days then it slips again. What really annoys me is repeated hearing "she knows better so should not copy other children" She loves adult attention, sees that is how other children get it and goes for it. I have sent in visual aids for her to use and have asked the school to chose 1 adult(how she relates to) who can take DD to a quiet place and discus how she feels and how to deal with those feelings. Again, short lived wonder. I am going to send in a notebook this week and ask for them to keep a detailed record of her behaviour. We see her paed in half-term so can take it and our notes and see what she feels. Thanks for listening to my moan. Keep smilin Elly

My DD14 attends a special school and has a chromosome disorder that has left her with MLD, S&L delay,Dyspraxia,ASD traits + others. I also believe she has ADHD. Her behaviour at school as become increasingly erratic and her hormone problems(caused by turners variant) are not helping. Her latest trick is to kick people at breaktimes The school seem to be focusing an awful lot on her 'bad' behaviour, rather than her good. This goes against everything we do at home; we try to reward good behaviour and, after talking it through, forgetting bad behaviour. We are well aware that if her time is not structured she will do something to gain attention and have frequently asked the school to give her 'little' jobs at breaktimes. Like everything else, they do it for a week and then forget about it She particually loves looking after the smaller children and is very happy when allowed to help in lower playground. Have had another phone call today to say DD has been at it again and they have told her a letter will come home if she does not behave. DD said she would like another chance so they phone and tell us instead Hubby took phone call and he said they gave the impression that, if she misbehaves again, the so called letter we will get is a contract for us all to sign about what will happen next I don't believe in signing these contracts, especially when the child involved has no real control of her actions. My concern is that they will exclude her for a set amount of days. This would be a complete nightmare, as she will have a major meltdown at not being able to go to school(anytime off school causes a storm) It will all be my fault and I will be the punch bag for the days she is stuck at home How do I get the school to see that they are going about this the wrong way? I have had so many meetings with them that I think I might just move in It just makes me so mad that you put your child in a special school and they still don't understand what they are doing wrong Does anyone think getting the ADHA officially confirmed might help? She is already on Risperidone to help her sleep and relax, I cant see what else to do. Rant over. Keep smilin Elly

I have just asked for the forms, after phoning about 30 times too get through We are hoping to get a computer, multi sensory equiment and money for riding lessons. Does the child have to be on High rate care? My daughter is, but my son is on middle rate. Does anyone know a similar fund that helps disabled adults? I am on high rate for both care and mobility and hubby had to take very early retirement to help with the family care needs. Been a shock to the system losing a regular wage Keep smilin Elly

You say he is on the special needs register; does he have a statement of educational needs? If no, then it is a must if he is going to have the chance of any specific help at school. Don't let them try the ' he is to bright for a statement' con. My son is very intelligent and has a statement because of the needs caused by his ASD (not that we use it now as I home educate him). For the meeting make sure you write down your concerns(yes, all of them, even the little ones) and any questions. Also think about what sort of support you think he needs and how he would benefit from it. Don't be shy about it and ask for more rather than less, because they never give you everything. If I told you it will be easy I would be lying; I'm afraid you will find it is a constant battle So far, you sound as though you have been fairly lucky in getting people to listen and repsond. Whatever it is you are doing, keep it up Keep smilin Elly

Curra, Maybe you could get you son a copy of 'Freaks, Geeks and Aspergers Syndrome' by Luke Jackson? It's a great book written by a teenage aspie. Hope things pick up soon. Keep smilin Elly

Good for you If parents don't stand up for their children then who will? There is a book available hat lists all special schools, if I remember correctly it 'The habitas guide to special schools'. Might be worth a look if you can get it. You will need to do what you feel is right and show thw LEA you won't be bullied. Keep smilin Elly

If it was me I would contact the school and tell them that my son would not be returning to school until the problem was dealt with. I would then ring the LEA asking for an urgent meeting and write a written report to the school Governors. If threatened with 'truancy' I would ask our GP to write a sick note for mental health needs. This sort of attitude from the staff is totally unacceptable. Do you have access to an Autism Outreach Team? Your son is going to have a major breakdown if this is let to continue (sorry to sound harsh) and the school need to realise that. It looks as though the only way you will get through to them is to go in guns blazing I hope todays break has been good for you both. Keep smilin Elly

<'> Maybe these will go a little way to helping? Is his loudness worse before he fits? Some epilepsy sufferers have strange warning that one is on its way. Maybe you could contact his consultant and let him know whats happening? Sounds as though you could both do with a chill out zone. Is there anything that helps calm him? Maybe headphones, a weighted blanket or music? Wish I could offer more help. Try to keep smilin Elly

Once our children become 16 they are legally meant to sign these forms (DLA is slightly different). To be able to sign the careres form for him I think you would need 'Power of Attorney'. This has to be applied for and would be granted if it was felt the person concerned was mentally or physically able to manage his/her finances etc. All your son would be doing is saying that, Yes, you do provide that care. It has no connection with his DLA claim (although if he is on high rate DLA care then Carers guaranted). Do you or your son have a social worker? They should have made you aware of benefits available. The only thing I could suggest is contacting your local citizens advice bureau and gettting some legal advice from them. Keep Smilin Elly

He could be doing it so he can return to the film for reference. I would check this, as it maybe he wants to use it for teaching. Whatever he wants it for, you have to give permission for your child to be filmed. Best to discuss it beforehand with the paed. We have never been filmed for assesments, but have been asked too for them to use as a teaching aid. It depends on how comfortable you and your child would be with it. Keep smilin Elly

You say your little one is more social, but is he playing with the other children or just alongside them? Another clever one is looking at a point over a erson rather than at them(looks as though they are looking at them). My son likes certain company and will talk to anyone who shows and intelligent interest in scince, nature or history. These social interactions tend to be a bit one sided though as once B gets going there is no stopping him I think different 'symptons' of ASD show up at different stages of life. When he was a baby he liked to be left alone, hated his pram(loved pushchair) and chatted away. At about 2yrs old he stopped talking and eating. His behaviour took a nose dive(I know common at that age but, as he is youngest of 4, I could see a difference) and he would scream when taken to certain places. His speech came back when he diecided he could do it properly and, as he has got older, he is able to explain more how he feels. He now only dores something when he feels he is able to do it to perfection Bets thing to do is follow what your heart is telling you. Keep smilin Elly

This is totally unacceptable, and the fact your son is worried to take it further would really concern me If you feel you should get him and bring him home, just go for it. Explain to him it is not running from a problem, it is removing yourself from the situation while the problem is dealt with. The tutor needs to realise that what she is doing is not appropriate and the school needs to be aware you will take it further if nothing is done. Only by standing up for our childrens rights will we be able to stop this type of thing happening I hope you mange to sort this out. Keep smilin Elly

Oh Cariad, You really sound as though you are having a rough time <'> It's appalling that a family has to get into debt to get their child a decent education Have you considered the local press? Not sure where you can get financial help though. Have you or you partner been in HM Forces? At such a late date it might be hard to find someone else to attend the tribunal, bt I am not sure I would want to go with someone who is not 100% on my side Do you have a local ASD support group? Or maybe NAS could help? Sorry if you have tried these things, I am newe here so not sure of whats happened already. Keep smilin Elly