fiorelli

We got back from Pizza Hut at 6.30pm. At 7.30pm L was sat at the table with his brothers eating a large slice of carrot cake and a glass of milk. 8.11pm - apparently I have "5 minutes - or Else" to get him a slice of bread and butter... He is supposed to be in bed (7.30 supper, 7.45 get ready for bed, 8.00pm in bed, lights out) At the minute hubby is in bathroom, and I am in my bedroom and up until 5 minutes ago was quietly (as in just above whisper) and calmly answering his questions with 'go to bed' or 'it's bedtime'. I have now stopped answering him at all. He is in his bed and quiet, but I know as soon as I leave my bedroom he will follow me and start his "I'm Hungry"-ing again. How do you deal with it when your child is constantly on for one thing - whether it be a toy, food, drink, cuddle - whatever! and you know for one reason or another that they can't/shouldn't have it at that time - especially when it has been deemed that that particular thing has just become 'habitual'?? (In our case, L's food 'diary' has become habitual/ritualistic in the times that he has them... 8.00am breakfast. 10.30am snack time, 12.00pm lunchtime, 3.30pm snack time, 6.00pm tea time, 7.30 supper time - any deviation from these times has him constantly asking 'when's lunch/tea?' 'I'm hungry, what can I have to eat?'

L boards at school during the school week. They know just how difficult we find managing him at the minute, and they know that the relationship between L and my husband and his 3 brothers is 1 thread away from being totally non-existent, leaving the burden on me to sort out every little thing that goes wrong, and to act as a go-between/referee. There is a 'contract' in place whereby we need to 'work' with school/resi and they us. That is however, until it is a weekend, or a holiday, or a teacher training day, or they close the school because of snow. Am I being unreasonable to expect at least a phonecall to see how we are managing/how things are? All I have had is a 30 second phone-call from the headteacher just now saying "Sorry Mrs ***, we have made the decision to close tomorrow as well. We hope to be able to have them back in tomorrow. Goodbye." (actually, I don't think there was even a goodbye!

Maybe he meant to write "You don't need to" and "You don't have to". Which I personally would then take to mean him saying maybe "no, you don't have/need to do that thing we were talking about. But I think it might be a good idea if you did. But I can't be seen to be telling you what to do". Does that make sense?

I would say that they have no idea about the use of grammar and have used the wrong 'marks'. "Quotation marks are for just that" - a quotation.

You remember the petition on the number10 website we all signed with regards to the possibility of all those on Income support and Carer's Allowance being moved onto Jobseekers Allowance? Well, here is the official government response... http://www.number10.gov.uk/Page18179

I am pretty certain that I have read that you can contact the Ed Psych's yourself - although they do like you to go through the school if at all possible. Maybe try phoning the Ed Psych (look on your local area council website for the number) and explain the situation and see what they suggest?

L takes Bio Melatonin. He takes 6mg -2 tablets (It's in a blue square box with 60 in a box isn't it?) He is absolutely fine on it. It just helps him feel tired enough to go to sleep. It isn't a sleep pill as such, it seems to regulate the body clock properly to tell him when he is tired (It doesn't stop him waking up at all hours, and sleeping fretfully though!). He has been taking this one for a few months now, and is at the stage where he really needs a break from it for a couple of nights as he has grown used to it. If your son finds it difficult to take, L's CAMHS doctor told us to crush it between 2 spoons and sprinkle it on his sandwich, or in a drink, or in yoghurt etc. L has also taken melatonin capsules in the past - these are like little white plastic capsules - if you have this type, you should be able to pull apart the capsule and tip the contents into the sandwich/drink/yoghurt. I have heard that you can get a liquid melatonin, but have never had need to use it, so don't know the in's and out's of getting it. When L was first prescribed melatonin several years ago, his then Dr. said that there was certain milks that had melatonin added into....(never seen it myself mind!)

Would you? That would be fantastic! (pm me to let me know what you want towards the cost of it please!) Cheers mate!

Need you help guys. My 2 yr old's pre-school manager and I got talking today, and she asked if I had any 'bits' that I could share with her (They have had 1 child in the past with Autism, and they have suspicions arising about a child at the minute). Me being me, I thought I did as I have been given so much stuff from paeds/school nurse/CAHMS etc over the years, so I said yes, "I'm sure I have some things, I'll have a look and get back to you". Now, I've just searched everywhere I can think of and can't find a damn thing, yet I know that I have stuff hanging around as I came across them the other day. Anyway... What sort of things would you pass on if you were in my situation? (bearing in mind that nursery has access to portage and inclusion officers)

I have a son who has "Asperger Syndrome (Autistic Spectrum Disorder)" (as written by the paediatrician in her medical report). I have tried to get into some local support groups, both for my son, for my other children, and for myself and my husband. 1 support group (for L) had a very long waiting list for his age-group. He was put on the list - but by the time he gets to the top of it, he will be due to 'go up' to the next group, so is on the list for that too. He has been on the list for 9 months and should be nearly near the top of the list. I have tried to find a support group for my other children with absolutely no luck - despite being told that there is a support group in our area for siblings of those with disabilities, we have yet to find it, and no-one seems to be certain about the details. I'm sick of "I'll find out and get back to you", "The person you need to speak to isn't here at the minute, can we take your number and get them to call you back" There were several support groups in my area for parents/adults etc. 1 shut down with no warning. Another shut down because of a family members illness/death (understandable). There is currently 1 that I know of that is up and running. I have e-mailed and left phone messages with this 'support group' to find out when they meet/what activities they do etc, I know that several other people (social workers/other people I know in the area etc) have also tried to contact this support group for me. But nothing. Nadda. Zip. Zilch. So a question for you. How many of you go to an actual 'real life' support group? How did you find out about it? How do you find the support it gives? If you don't go to a real life support group - do you wish you could?

Hope you're all well, and had a good Christmas/start to the New Year. We all came down with this very bad cold bug that has been doing the rounds. L brought it home from school on the last Friday of term. I caught it from him on the Saturday, and everybody else came down with it on Christmas Day - with Louis being better Christmas day - great timing huh! We are in the process of removing L from his meds. (he is now just on equasym xl in morning and melatonin at night.) Myself and my husband are of the opinion that L's behaviour at the minute is nothing to do with his Aspergers/ADHD (in our minds, proved by the fact that when he had to go without meds for a week because we couldn't get hold of any - he was exactly the same). He has, however, turned full force against my husband (his step-dad since 2000). L has seemingly got absolutely no respect for him, often calls H rude names, deliberately does the opposite of whatever H asks him, will not speak to H unless it is to try and provoke H into an argument. We are at a loss as to why this is (actually, I have my suspicions...think real dad, lack of contact, previous things real dad has said to L etc). CAMHS have him on the waiting list to see somebody there 1-1 (at the minute he only goes to the ADHD clinic as a review of meds). I have sent off letters to various people regarding L's schooling, and am dreading what will come from it. But I can't do anything about that until it happens. Oh, and I managed to part with �69 buying a Wii Fit!! Finally!!

Sorry if I'm missing something, but why are school ordering him special shoes? I would have thought that he'd need to be assessed by an orthopaedic doctor, and if necessary, sent to the orthotics department of the hospital to be fitted properly - whether for shoes/insoles or other equipment to help? As for how you're feeling with regards to this, I would say it is totally normal way to feel. Every 'extra' thing is something 'new' which needs it's own time and consideration to deal with. Take care of yourself Julieann, have a blub, a glass of wine and some chocolate, and I hope things start looking a bit rosier for you soon. Fi xx

Isn't it funny how little things can have big impacts? Like L walking away from his brother who is being deliberately annoying. Like a hug from a child who doesn't 'do' hugs. Like an 'I Love You' Like a piece of carrot cake with your cup of coffee Like a psychiatrist telling you that your 10 year old is behaving in a way expected of a toddler - but a toddler can be left to amuse themselves for a bit. Like a teacher asking 'So are you happy with the IEP now I've explained it?', and you answering 'Well to be honest, I've not been happy with any of the IEP's'

Sorry Mods, thought I was in education. Please can you swap for me? Cheers, Fi xx

Hiya, was wondering if anyone can help me out a bit. If the target on the IEP is not achieved at review, what is supposed to happen? are they supposed to be carried through onto the next IEP, or altered slightly, or (as in L's case) Marked 'Not achieved', '50% achieved, '80% achieved' (hmmm, wonder how they work out that something is 50/80% achieved...?), and then totally new targets chosen for the next IEP? Thanks for your help.

In Answer to the question, Are there too many boards on this forum, I have to say that no, I don't think there are. Each different board has a specific purpose, and makes it so much easier to find information or to get the right 'readers' for your post, if this was condensed down, I think because of the sheer amount of people on here now, this would be disastrous. (although I don't think that it needs to get any bigger I am a member of another online forum (just a general one, not one related to ASD), and they are just coming through something similar on that forum too. Lots of Members, old ones, new ones, in the middle ones, all vying to try and find their place in amongst the 'community'. The forum itself has gone through some major changes, including a completely new forum provider, to make it able to cope with the sheer amounts of people on there now. Not to mention the obligatory Trolls - which thankfully we don't seem to get on here, and hacks. (I am coming to a point, honestly) This all caused some pretty major upsets, ructions caused within the community, quite a few arguments, people 'leaving', people coming back, management stepping in when things got really quite difficult. However, that forum is now pretty much out of that now, the community has (largely) stuck together, worked through problems, and has come out the other side bigger and better. As is life, the online forum 'community' is going to have problems. People are going to disagree, people are going to gravitate towards their 'friends' more than others and back them up, but problems need to be worked through and addressed for anything to get resolved. I too, used to be here when we were 'Krism', and yes, we were a lot smaller, and so we got to 'know' each other better and problems never seemed that big, but I think we are a lot better as we are now, because of the amount of members there are now, there are a lot more people to give their advice, or their support, or more people needing help to deal with certain situations that arise, or even more people to debate with! and because of this I think we are a lot stronger, because it is opening up horizons and views, helping to make possible (even if it is only a hint of hope) that, yes, things can change, things can get better. That no, I am not alone, there are others out there who know exactly what living with ASDs is like. Please, yes it is okay to air how you are feeling, but there are ways of doing it without attacking something/one. That is not going to get anyone or anything anywhere. Fiorelli xx

I really wish I could come Smiley, but L is home - and don't we know it! Oh, he came home with some 'wonderful' IEP's - a 'revised' one for this term, and 2 'completed' ones... I feel a letter coming on... Oh, and we recieved a letter to say that his teacher is leaving at Christmas to become deputy head of another special school in A******, but no mention of who the new teacher will be, or when they start, or whether the children get to meet her.

Thank you Kathryn. "Things" aren't really looking any better, but I am dealing with them a bit better - if that makes sense. After my post a couple of weeks ago, my husband took us away for a few days as L and P were at their father's. It enabled me to clear my head a bit and have some 'me' time. I also met a lovely lady off here who made me see that it isn't just me that is having problems, and that we are not alone. I have a vague plan of action in my head which includes - amongst others - trying to get water-tight proof together that the school L is in isn't the right one for him, and that he needs a certain type of school. I am going to become that parent they hate - the one that is constantly on their back. For far too long, I have sat back and though 'that isn't right', 'why are they doing this and not that' etc. I have good intentions that I'm not going to sit back any longer. I need to speak to resi today (my husband spoke to them last night), as I am concerned about how L was last night. I am guessing he must have gotten quite 'bad' for them to call and let us know at 9.40 last night. I also want to know what they did to help him. My husband said that the resi boss had told him that "another child with Aspergers said he'd had enough of this and took himself off to his bedroom". Louis isn't always (mostly not) capable of doing that.

My husband has just off the phone to L's resi (they phoned us about 10 mins ago!) Basically, they have had another boy's brothers in visiting tonight, and in the words of the resi boss, they were 'hell'. Resi boss, has just told us that for the first time ever that L has displayed 'interesting behaviour'. Apparently he became very withdrawn, anxious and agitated. Normally L presents in resi (and school) as a happy-go-lucky child, who would do anything, full of smiles, tries anything etc. Not sure what to think. part of me happy that they have finally seen something other than the above, part of me is sad that he got to this stage.

Thank you to all that have helped me in the past. I have come to the conclusion lately that I just don't fit in - not just on here, but in various areas of our lives. I seem to have been the cause of L's problems lately - but for what reason I don't know. I need to take some major time out from everything in order to get myself sorted out in order to help L. The results of his blood tests came back today, and they show that there is absolutely nothing wrong with him, suggesting that he is overeating because it is a habit that I have allowed to develop. The aggression also seems to stem from the fact that I don't do enough for him - or any of my other children. I have spent the last week constantly doing stuff for my children, and keeping them occupied, and for the first time in a long, long time I have been upset at L and P going to their father. I was enjoying having them around, there was no fighting, there was no shouting, there was no violence. We were like a 'real' family - abeit one that has a child with ASD. I have given out far, far, far to much personal information on here, and I realise that that must come to an end. The problems with me and my family are just that, and I need to be the one to sort it out. I have begun to envy and despise people both on here and in real life who have support and advise, know where to get it from, or who to get it from, or know someone who knows someone etc. That is not right, and that is not me. I feel all alone drifting out to sea in a storm, and no sign of land on the horizon.

My son, L arrived home from school today with a bruise on the corner of his eye. He did not go to school with this bruise, so I am of the understanding that this injury happened whilst in the school's/resi care. In fact, L says that he sustained the injury on Wednesday. I am rather dismayed to find that injuries that L sustains in school are not relayed to us as soon as possible after they happen. This is the third time that this has happened now, and I find it wholly unacceptable. The first was an incident where L went under the water while swimming with the resi, and was helped out by a lifeguard, the second was an injury he sustained to his ankle during school hours which resulted in him being taken to the hospital by staff the next morning - which again, I was not told about until I called to check on how he was at 10:30 the following morning. Both of these injuries I was only told about in an 'Oh, by the way...' when I had called to speak to L in the evening when he was in the resi. I truly believe - as is the case with L's eye this time - that I would not have been told about these incidents if I had not phoned L. Please could you let us know how this injury to his eye happened and how it was treated at the time. Please could you forward me copies of the accident book/s which records these incidents. Please could I also have a copy of the accident procedures. Thank you for your co-operation. I am well and truly sick of this school now. I've just had a phonecall in reply to the above, (quite good 'service' actually as it is half-term!) where the headteacher tried to imply that maybe it was because of an incident on Friday at football (ummm - read the e-mail! L states that it happened on Wednesday). But that he 'Shares my concerns, and will look into all 3 incidents thoroughly, and will get back to me when I pick L up next Wednesday". What's even more annoying, is that L went into school with a not-to-dissimilar bruise on his eye - and we ended up with social services and the police on our doorstep! GAH!

Hi, was wondering if you could give me you thoughts on L's new IEP please. It's not sitting right with me, and I can't work out why. Thanks. Page 1. Behavioural, Emotional Social targets: 1. To learn strategies to become more assertive when dealing with his peers 2. To extend his social interaction skills. Details of support provided (includeing monitoring) and strategies used THAT ARE OVER AND ABOVE THE "NORM" to help the child achieve the target. Target 1............................................................ (?????It's left blank!) Page 2. Details of support provided (includeing monitoring) and strategies used THAT ARE OVER AND ABOVE THE "NORM" to help the child achieve the target. Full time resi pupil Weekly Play therapy page 3. Academic Learning Targets 1. know by heart all pairs of numbers with a total of 10. or less than any given number. 2. Within the range 0-30, say the number that is 1 or10 more or less than any given number 3. To use the correct vocabulary for measuring time and length 4. To learn weekly spelling and show measurable gains in weekly test results. 5. To extend creative writing skills by using and writing descriptive words. page 4. Notes from reviews/meetings....................................................(???left blank) signed.............. somebody other than the teacher has "pp'd" the signature, nobody from resi has signed, child hasn't signed,

Just been speaking with L's keyworker in resi. Initial feedback from L's ed psych report suggest that L has profound learning difficulties and problems with auditory processing. I am going to call school tomorrow to speak to teacher for a bit more info. But will have to wait for the ed psych's report before knowing full details. This year is going from bad to worse.

Thanks for replying loulou. The Psych mentioned that drowsiness is one of the side-effects, but as she said - with L, that can only be a good thing , and has instructed us to give it to him at night. I will keep an open mind, and see how it goes.

Thanks for that stardust. (whereabouts do you live?)