fiorelli

Unfortunately this all sounds too familiar to me. When Louis was in year R, I had a Mother come to me (while waiting for the doors to open and with a playground full of parents) and say "Your son is bullying my son. What are you going to do about it?" First I'd heard of it, and totally inappropriate in my eyes. I was not spoken to by any other parent (other than the ones whose kids Louis had gone to nursery with) for the rest of the year, or the next, or the next. 2 1/2 years in exile - not a good feeling for me or my kids. During that last 1/2 year, we were going through the statementing process, and it was then that I found out that ever since Year R, parents had been writing complaints about Louis. And that in the last 1/2 year, they were actively campaigning to get him out of the school. There were parents telling the head that unless Louis went, they would pull their child out of school. Louis was eventually permanently excluded from this school (which if you search the boards, I'm sure you'll come across the posts). We also removed my other son from the school and registered my 3rd son with another school (he was on the register to go to this school the following september). It was one of the best things to happen to us.

A new headteacher started at Louis's school in September (we were told 1 week before the end of term in July that the Headteacher was leaving 'for personal reasons'). I was in school yesterday for a coffee morning (some coffee morning though - only 3 parents - including me - turned up!), and Headteacher collared me afterwards while I was waiting for his teacher and said: "I don't understand how Louis came to be in this school." I could see this coming, as every week he comes home with the Gold award for behaviour, and this last one came home - "Well done for going for gold. (Again!)" The school is a Behavioural and Emotional Difficulty school. When we were going through statementing, we put in our thoughts on this school and said it wasn't right, that we wanted (and had a place lined up waiting for LEA approval) him to go to a school specifically for those with Asperger Syndrome and Moderate Learning difficulties. Louis's then Psychiatrist wrote to the LEA and said the same thing. We were however told that he HAD to go there. That the school had said they could meet Louis's needs. I feel like I should try and get a meeting with the Headteacher to try and ascertain exactly what he means/thinks and go from there. We were told that his Annual Review is being done on Thurday (we got the letter on Monday!), so I have asked for it to be postponed until after Christmas - especially as the original was finalised in July, and last years Review was done in February so I believe it's being done too early anyway. So I want to get everything straight before the review. But I do wonder if I am reading too much into his comments? His class teacher says that he is a model pupil for behaviour, but his social ability is very low, as is his emotional ability. He is working at year 2 work at the moment (He is in Year 4). I don't know what to do! If this were you, what would you do? (I'm prepared for all answers!!) fiorelli

Louis saw a human beatbox somewhere, and ever since he has been trying to do it himself. Unfortunately, someone had the insight to tell him he was good, so now we can't stop him! So not only do we have stimming with his hands, but we also have the beatbox too

I was wondering if anyone could help me. Back on 14th September, I told DLA that Louis started residential school on 10th Sep. His DLA was stopped completely while his case went to the 'decision makers'. I have just had a phonecall from DLA to say that they now have the information from the local authority regarding funding, and just wanted to check dates for the last half term, as that was the last piece of information they needed. She said that his case was now going to be passed on to the who pay the DLA. Anyone got any idea what happens now? Thanks, fiorelli x

Sorry Sesley, this is a hoax (See here: http://www.snopes.com/computer/virus/life.asp). Although it does give a valuable lesson, not to open anything from people we don't know/e-mails we are not exxpecting.

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Louis had to have a blood test a year ago for the same reason. Our GP surgery has a policy where ALL children go to the local hospital's childrens daycase unit to get bloods done. Louis was anxious about getting bloods done, we were honest with him about what would happen and how and why. He was still anxious but knew what was going to happen. The nurses then made a big thing about whether he was going to have some Emla cream to numb the area or a spray to 'freeze' the area so he wouldn't feel what was happening or whether to not have either. This made him so much happier - he felt like he had some control of what was happening. (he chose the cream). When they were taking the blood, we also used distraction technique - basically they had a 'where's wally' book which myself and a nurse had him looking for Wally while the blood was taken. He didn't even realise they had done it! He got given a plaster AND a sticker! Next time he had to have blood taken, the GP decided that she would do it there and then. Asked him to lie on the bed, and took the blood straight away - with Louis watching! Without the cream. I feel that first experience for him at the hospital set him up really well to show him that it isn't that bad.

Hi Shell, Are you sure that MSN are closing groups as I can't find anything on there about it? You have set up a good Forum though - well done!

Thank you for your help there are some really good ones suggested. What about: Making the beds. chastisement. praise. telling a person to do their homework.

Just spoken to DLA again, and they confirmed what you guys have told me, that the mobility part will be paid in full, and that (when the decision makers have done their job) the care part will be divided by the amount of time he is at home. They have sent a message asking that they continue to pay the mobility part while a decision is being made re care part.

Pearl, you have it nearly right. Even if you are in receipt of Carers Allowance, you are still classed as an informal carer. This is because CA (previously invalid care allowance) was introduced by the government as a way of saying to informal carers 'we know what you are doing, you are saving us X amount of �, you are doing a valuable job' There are however, guidelines as to what an informal carer is (put simplisticly, if you weren't working and could get Carers Allowance, you would be classed as an informal carer. So if you meet the criteria, you are an IC whether you get the money or not). Clare, at the moment, I would say it is. What my course is looking at (at the moment), is that not everyone sees themselves as an Informal Carer, why that is, and what benefit there is (if any) of a person changing that viewpoint. I will then go on to look at other forms of caring over the next few months, and the legislations that are in place.

Pearl, the definition of an informal carer given in my text book is: A person who takes unpaid responsibility for the physical and/or mental well-being of someone who cannot perform the tasks of daily living unaided, because of illness or disability

Informal as in someone not paid to care for someone (if that makes sense)

Thanks Pearl! Will head over there in the morning (I'm wrapping up for the night now). If people can continue giving their thoughts, I'd be very grateful. Thanks!

Thank you all, there are some great thoughts there (anyone got any more?!) Pearl, this is basically what my first essay is about - Informal Carers - What they do, how they do it, what defines an informal carer, who is an informal carer, whether or not the 'label' matters, what support is there for informal carers. And I have the grand total of 800 words to do it in!

ok, I'll add my own (bearing in mind I've only asked for one?)... Making meals.

Keep strong. I have no words of wisdom, I only wish I did. My thoughts are with you as always. <'>

Doing an undergraduate certificate in Health and Social Care. As part of my research, I have to ask various people what they understand from the word 'Care' - what do you think it means? Do you mind telling me what you think? I only need simple 1 word answers or a single sentence. Thanks, Fi xx

I do bid, but trying to explain that to my husband so that he understands is a nightmare - I've given up trying to explain!

Thanks all for replying. Bid, the lady I spoke to at DLA said that as he comes home every weekend, I should fill in the forms every week, but that most probably I will get the forms every month. Kazzen, That is good to know about the CTC. I don't get IS so don't have to worry there (thankfully!), and CA said that as long as he is still getting some sort of DLA and I'm caring for him for more than 35(?) hours a week then I'll still be entitled to CA. It is all so confusing, and trying to explain to my husband why DLA is going to be reduced is a nightmare - his opinion is that L is still disabled, and that it is his (L's) money, and what happens to it if he doesn't get it. So trying to explain why it has been stopped completely while they sort it out is even worse!

apparently, when they have made their decision, I will have to fill out a form every week to let them know when L is at home.

Hi Bid, Thanks for replying. I have already spoken to CA, and they have said that as long as DLA comes back as he's entitled to it, then I will keep CA, as I will be caring for him for around 64 hours a week (they include overnight as well which I didn't realise). It is just a shock as when I notified DLA over a month ago, they didn't mention that it would be stopped until a decision had been made. Have you any idea how long it takes?

Phoned DLA to inform them that L now goes to Specal school from Monday morning to Friday afternoon during the termtime. I was informed that they would have to divide the DLA in accordance to when he is at home. DLA was supposed to go in bank today. We have been given a total of �0.00 - zilch - zip - nadda - nothing. No mention of DLA at all on my bank account. It has been there without fail for the last 3 years. Bug*er.

We are 'lucky' (?!) in that my sister and her husband have had L to stay at theirs for a week, and we often do return visits where they stay at ours for a weekend and they stay at ours for a weekend (and even spent a holiday together in a big 2 bed apartment!), so they have seen L at his best and his worst. They are in no doubt that he has AS/ADHD - they have seen his difficulties for themselves, and have no problem in telling others of their experiences. Because of this - and what we tell others in the family - all are accepting that he has this condition. Yes, we have had the 'he needs to spend a week with us, we'll sort him out' comments, but a smile and change of the conversation usually sorts that out. Keep your chin up.

Update above, but basically, we have spoken to resi, they have spoken to L, L got really upset, L calmed down, L went to bed, they spoke to us.