fiorelli

Thanks Simon, unfortunately, the box went into school with L with his meds for the week, and didn't come back home so I don't have the information leaflet. (Does anyone know a way around the fact that school want his meds in the original box leaving me with loose meds as they don't send the boxes back home?)

Hiya, just wondering if anyone knew the side effects of Equasym XL and Risperdal. Just wondering if L's irritability, 'I can't do it' thought and moods, constant hunger (or at least saying he is), and major meltdowns between 2.30pm and 5.00pm could be down to these. Have a CAMHS appointment on Thursday, so will check with them, but wondered what your thoughts are on these meds. Thanks.

pants

fun

juice

cake

glass

marriage

manure

bread

moon

fish

Hiya, was wondering if anyone can help. On L's last day of school (23rd July), I filled in the 'days at home' form for DLA, wrote a letter saying that he was now at home for the holidays, and as such was home for more than 28 days, returning to school on 8th September etc. put it in their pre-paid envelope and sent it that day. We are now 2 days away from 3 weeks since I put the letter in the post, and DLA say they still haven't recieved it. Last thursday, they agreed to send out a duplicate form. I have yet to recieve it. I understand that they are extra busy in holiday time (there must be loads of us doing the same thing!) and that things take longer. But I am so used to them recieving the form within 3 days of me posting it, and the money sitting in my account a week later, that having to wait 3 weeks for them to even recieve my form is a joke, never mind having to wait for them to post out another one, having to fill it in, wait another 2 weeks for it to get to them (how long they estimate that they are 'behind' at the minute), and then wait for them to verify the information, then wait for them to assess how much is due, and then wait for them to send it to my bank. He'll be back in school before it's all sorted! What good is it then? Sooo Frustrated! Is anyone else going through this at the minute, or are we the unlucky ones?!

Flora, there is no legal age for leaving a child home alone. It is all down to the individual child/parent. However, if a child is deemed to be 'at risk', then it is an offence. http://www.nspcc.org.uk/helpandadvice/pare...e_wda35965.html (see here) Chris, Our local high school provide a daycare service for all the local children of school-age - they provide after-school clubs, and during the holidays, they open all day. It is a registered child-care setting and they take children up to 14 (I think - may be older). It is quite reasonably priced at �2.75 per hour with discounts for siblings. Do any of the schools in your area provide a service like this?

Well, today I had a meeting with a social worker from the CDT. It was because I have requested a Yellow Card for L (don't know if they are called that everywhere, basically it's registering him disabled, which will entitle him to hold a 'yellow card' which is basically just like a discount card and can be used as proof of disability at swimming/cinema/theme parks etc) I had to go along to fill in a questionnaire (name, age, disabilities, what they are, how they affect you, whether you are in receipt of DLA etc). Well, I must admit that she was a very nice lady. And I am afraid to say that the meeting turned out to be a lot more than filling in a form! I Blubbed. A Lot. All because she asked me 'What's he like?' We talked about lots of things. She has given me some advice (e.g. write down everything that the school say, and date it!). She looked shocked. She questioned what the LEA told me about no other schools in the area. She agreed with me. She Listened. She didn't (outwardly) judge me. She included L in the discussion, but I think she soon realised that L does have the disabilites that we say he does (I think she realised that on one of the first questions - 'What have you been doing these holidays L?' His reply 'Lots.' 'What things have you done?' L - 'Ummm....' at which point he looked at me to help him answer the question. The outcome is that we came away with more than just a potential yellow card (She said we have to wait for her manager to come in on Wednesday and check over the form and sign it off, then we will have it at the end of the week/beginning next week). She is also going to look at whether they can instigate a Common Assessment Framework (she said ordinarily, they wouldn't be able to as L isn't 'severe enough' to come under the disabilites team) as she feels we need more support, and as all his 'professionals' have discharged him, we have no-one. she is sending us an application for the Family Fund (I had heard about this before but thought we wouldn't be eligible for anything, so never done anything about it), she's going to get the local NAS people to contact us (I've had no joy - no reply to e-mails/phonecalls), there is a Special Parents, Special Children parenting workshop that is run in the area, I asked if she could refer me onto it. She also asked if we had thought about extending L's boarding (we can't as the school he is at only provide Mon-Fri term-time boarding) because of the effect his violence is having on the family. So, all in all, whilst our areas Social Services is absolutely appauling for those with AS, the Social Worker was aware of this ("There is a huge gap in the provision here") and tried to make up for it in other areas. It was nice really, just to have someone to talk too. Who didn't judge. Who didn't try to belittle how we are feeling. Who didn't try to make me feel like we weren't doing our best to manage him, and help him.

In that case, I read your posts wrong, and I'm sorry.

FLora, I am glad my post didn't upset you. I read everything that you (and everyone else) posted. My post came from that. I understand that you listened to her. I understand that you got upset at how you perceived her to be boasting about the grades. But really, was she doing that? (If she was, and it was my friend, I'd be thinking whether she was a friend I wanted around me). I have a feeling that she'd be upset that you were sad (iywkim). Like I said earlier, I have been there. Who on here hasn't been?! <'> Fi xx

Flora, I totally understand where you are coming from. It isn't very nice to hear something like that only a day after you have shared your feelings over how well (or not as the case may be) your child has done. Flora, I really don't mean to hurt your feelings with this, and I really hope that it doesn't as it isn't meant that way... Everybody has hopes and dreams for their own children. I, myself have 4 children, and I have different hopes and dreams for each and every one of them. All coming from how well they are doing in school at the minute, what their personalities are like, who their friends are, what they can and what they can't do. I have a mental 'list' of grades that in an ideal world I would love my children to achieve, and again these are different for each child. I am also friends with parents of other children in my sons' classes. They too have hopes and dreams for their own children. When it comes to these end of year tests and reports, you raise your hopes and think of the best that your child can get. You can get (in my experience) one of 3 responses to the result - indifference - an 'Oh well, you done the best you can' attitude disappointment - an 'You could have done much better than that' attitude exhilleration - an 'Oh my god - didn't you do very well' attitude. each one is going to get a different set of reactions. You need to talk about them, and it is only natural that you should talk to your friends about them. Flora, you spoke to your friend about how Ben done in his SATS. She sat there and listened to you. She waited until the next day until she discussed her child's SATS with you. I personally think she thought she was being thoughtful (she could have told you about her child the same day you were talking about Ben). I understand why you feel upset - really I do - because I feel the same when I compare L to his brothers, or to his peers, or to friends children. But I think part of a true friendship is accepting this - accepting that other people want to talk about their children, and their hopes and their fears. And that they shouldn't have to wait days, or weeks, or months before talking about it with you for fear of upsetting you. When they are upset/pleased about their child's achievements - whatever they may be, or however different they be from our own children's - they should have the right (as your friend) to discuss them too. Otherwise, what sort of friendship is it? <'> Fi xx

I just wanted to share how brilliant L has been today. So often I come on here and say how difficult it has been, so thought I'd do the opposite too! He has been a (near) Angel all day. He got up, didn't go straight down to raid the fridge, but waited for me to go down and make his breakfast. He played quietly with his brothers. Not once did he hurt anyone, or even shout. I have not had to raise my voice once. I haven't had to tell him off. I haven't had to advise him about his behaviour or his language. I haven't had a 'shadow' for the majority of the day. He has accepted it when I've had to say 'no' to him. I even managed to get a hug from him! He has been brilliant. Well done L. (Let's just work on those night-times... You CAN do it. We DO Love you.)

Hi JsMum, I understand what you mean, and to be honest, I am a little concerned about how much they will 'push' him. At the moment though, I am reading into it slightly differently. In his current class, he is the oldest boy (by nearly a year). He is seen as the 'boy to look up to'. He does the work that is asked of him, but no more. He is seen as funny and clever. There is nobody in his class that is there for HIM to look up to. There is nobody in the class that he can look at and think 'I want to be like him'. I am taking it to mean that this change in class is going to adress this in some way. He will no longer be the oldest boy in the class (He won't be the youngest either as there is another boy going up who is younger). He will no longer be the biggest. He will no longer be the 'best', and as such there should be something he can aspire to. The other boys doing slightly harder work should also mean that he has to try harder. Yes, this will create some problems. But to me, this seems just a little better than the, constantly saying to him 'yes L, that's ok. If you've tried your best' for the last 2 years, there has seemingly been no negatives for him. And to me, you need to know the negatives in order to be able to work on them to make them positives. In fairness, this probably isn't the way that the headteacher thought that I would take it. He probably doesn't think that anything will go wrong. I have a feeling that he thinks he is going to prove us, his parents, wrong, and that there is nothing the matter with L academically - or behaviourally. (As this is the headteacher that told me "I don't know why he is in this school, he's a perfect pupil!" Smiley - guilty consience? I'm not sure he knows what one of those is! (I too am hoping it's going to be better in Sept)

Louis often throws things/kicks things when in a meltdown or he doesn't get what he wants, or someone does something he doesn't like, or he can't do what he wants to do. I do replace stuff that has been broken - within reason. We live in a rented house, so far, he has broken 2 internal doors (with a little help from the doors themselves as they are the very old style doors that are just bits of sheet wood stuck together), I have been able to repair them on several occasions, but they are now beyond repair, so we will be replacing all the internal doors (thankfully my big sister works in a diy shop so we can replace quite cheaply), However, if he breaks other stuff - e.g. he kept throwing his nintendo DS when he couldn't get through a part on a game - it eventually split in 2. We have not replaced it. We have kept the distruction of other stuff to a minimum, in that if it looks like Louis is about to kick off (or if he HAS just started to kick off), we isolate him to his bedroom. He can trash that as much as he wants. It is his stuff, if he wants it to be nice, then he will look after it. If he doesn't then he can carry on. That may seem simplistic, but we have had far too much of him breaking other people's things and leaving his alone. We are sick and tired of it. I can honestly say that we do not pay out lots of money on stuff anymore. You can get nice things without them costing the earth, and then it doesn't matter so much if it does get damaged. (Oh, and I can heartily recommend painted walls instead of wallpaper - as nice as wallpaper is - so much easier to wipe clean/touch up if it does get damaged)

all my thoughts and prayers go to her and her family Cancer is a horrible disease

Well, I have had 2 hours peace! I dropped him off at the local high school's 'Skool's Out' they do every year. Lots of structured activities, outdoor play, messy play, computers, drawing etc. He went a couple of times last year and seemed to enjoy it. If he has enjoyed it today, I will have to see if I can afford for him to go 2-3 days a week over holidays.

Thanks for replying all. It is comfortimg to know that others are in the same boat. Isn't it funny thought how a child who normally shys away from people constantly seeks to be with you or by you in some way or another? Well, over the last 4 days, we have grown into a sort of 'quiet existence'. Thankfully the weather has been kind to us, so we have been able to spend most of it out in the garden (we are lucky enough to have a large garden, not huge, but big enough for 3 boys to ride their bikes around without constantly getting in each others way). L has sort of got himself into a bit of a routine. He gets up (usually on quite a high) has his breakfast and his meds (moderate release methylphenidate stuff), which take about an hour to come into effect (during which his brothers stay out of his way, and I make sure he doesn't hurt/damage anything. When he is finally calm, we go out and get out the bikes/swingball/balls etc and try and have some 'energy wasting' time. By then it's lunchtime, after which he has quiet time watching tv, and then he joins us back outside. By about 4/5 pm his meds are wearing off, and he has been getting 'high' again, meaning I have to keep a close eye on what he's doing. I must admit that he got so bad on one day that I gave him a 10mg ritalin (we stopped the afternoon ritalin around 6-8 months ago, but still have some left over from then - still in date) He still follows me around, but not quite so much as the first day. I am sat at the computer now while he is downstairs watching tv. Which is an improvement. Although bedtimes are still a problem. I have to find stuff to do upstairs until he falls asleep as otherwise, he constantly follows me around 'I can't get to sleep' 'I'm not tired', 'I dont' want to go to bed', whilst having really bloodshot, tired looking eyes. Ah well, only another 5 weeks to go... Hope you're all bearing up ok, and holidays are going as well as they could be for you.

L broke up for summer hols last wednesday. On Friday, I had a phonecall from his headteacher. He apparently wanted to apologise for the way that the annual review was held in February(!), and wanted to 'assure us' that they are going to start helping L improve academically... Hence why they have decided last week(!) to put him in a class of mainly year 6's (he will be in year 5 in september). HT said that there are 'at least 4 serious pacemakers who will help push L to work harder in the class'.