fiorelli

We had L's CAMHS appt today to review meds. The psych thinks that the rispiridone has been a contributing factor in increasing L's appetite, because of this, she has recommended that we slowly stop the rispiridone and replace it with aripiprazole - (brand name Abilify). Has anyone here got any experience of this med? I've never heard of it for ADHD/ASD before, and in googling, I've found it's licensed for use in over 18's with schizophrenia, or mood disorders, and that it hasn't been trialled for under 18's. If it's easier to PM me with info, I am more than happy with that. Many Thanks, Fi xx

Non-ASD-specialist NHS staff will not get any specific ASD training unless it is directly related to their work, or they have elected to go on a course related to it. For the simple reason, if they do it for one thing, they have to do it for them all, and that simply isn't possible. However, NHS staff should be expected to treat each person with respect and take into account the individual circumstance where possible. But you must remember that these people are only human, and are trying to do a job, and sometimes, their own prejudices do leak into their work - even though they shouldn't - when this happens, it should be brought to their line-manager's attention so as steps can be taken to re-educate the person involved. As for something to show people in these situations, how about the NAS card that carries a brief discription of ASD?

Kazzen, it is an LEA school. the medical appointments are for CAMHS, hospital appointments for paed, hearing etc. which for obvious reasons can only be booked for when the clinics are held. (what prompted my question, is that I find ourselves in a position whereby L has to miss a days schooling a week over the course of 4 weeks because of different appointments for different people - I have to go and pick him up the evening before the appointment, and drive him back after his appointment. The last one, he ended up only having an hours worth of school, but as I have 2 other children at school, there is absolutely no way I could get him there for 9.00am the next day) As for school and resi inset days, this is the first time that resi had different ones to the school. The other ones, as I said, have been when resi has had to close for health and safety reasons - once because of the issue with the fire doors and another time because they were having all the bathrooms refitted over a half term, but had to close early in order to clear everything.

Wondering if anyone can help me out. Basically, L boards at a school a 40 min (on a good run) drive away. LEA chose this school, said it was the nearest one to meet his needs. Transport is provided for L, on a Monday to school and a Friday home from school. LA refuse to do any more than this. - e.g. if resi is closed for some reason, like at the beginning of term, the school was open, but resi was closed for staff training, and again was closed for safety reasons as they had a problem with the fire doors. Or if a child has to come home to attend a medical appointment, LA refuse to provide transport to get resi pupils to and from school. We are told that it is down to us to get our child to school in these instances, and if we can't then the child will be marked down as 'authorised absense'. (L has had 3 days like this so far this school year). The last time it happened, we were told by LA that the only way transport would be provided would be if the school paid for it. I was wondering if anyone knew whether the above is legal. Also, if a child has a medical appointment that simply cannot be made for out of school hours, can/should transport be provided to get them to/from school - esp. in the case of a boarder? Thanks xx

Well, L has been subjected to a battery of blood tests today to check (amongst others) - Thyroid, Gluten tolerance and a genetic test for prader-willi syndrome. Because of the last test, the results won't be back for a few weeks. Dr. is going to write to us with the results. If all turn out to be negative, then we have to go along the line of his eating being a habit - although that doesn't explain why is isn't gaining any weight with the amount he is eating.

We have finally got somebody to listen to us, and understand that we are concerned, not only about how much L eats, but also the fact that he isn't putting on any weight for the amount he eats iykwim - he is age 11 for trouser length, but only a 7-8 for waist size). We have been keeping a food diary in conjunction with his resi. placement and school. e.g. 2 days for L went like this last week... Tuesday... Breakfast - 2x weetabix + 2x toast school dinner - pizza, wedges, peas + salad, seconds, jelly + fruit Tea - chicken in BBQ sauce (3 fillets) + mash + peas + sweetcorn + meringues, fruit and cream snacks - crisps + 2x fruit Wednesday... Breakfast - 2x weetabix + 2x toast dinner - pork roast, roast potatoes, veg + salad + seconds, + flapjack tea - kebab skewers, wedges + salad + seconds + prawn filos + magnums (yes, the magnums are written as plural in his food diary!) snacks - 2x fruit + hot dog + 2 x biscuit His keyworker wrote a note in the diary which reads... "portions in the ***** are large adult size and often requests seconds. Has a snack before bed but often states he feels hungry." I feel sick just looking at the diary! Never mind if the food was actually put in front of me, it just seems soooo much!

Thank you all. You've made me think of this in a different way. I think I now understand the question and why it was asked.

"Did he steal it, or did he just take it without asking?" I am sick and tired of hearing that sentence being asked of us (in relation mostly to L and food). Surely taking without asking is the same as stealing and stealing the same as taking without asking? If someone else knows differently, please can you let me know!

We were out for late lunch/ early tea having a pizza as it is my 7yr olds birthday today, when Louis asked me "Why do I have ADHD and Aspergers Mum?" Now, we have never kept the fact that Louis has AS/ADHD from him - or his brothers, and talk to them about it as and when it comes up. However, this question never has. The conversation went along the lines of... L - "Why do I have ...." Me - "Because you were born with it, It's not anybody's fault" L - "But why was I born with it?" Me - "Well, when babies are made, they start up as a ball of cells which divide up and grow into a baby. Sometimes these cells don't grow properly. Sometimes they mean that a person has no arms or legs, sometimes it means that they look a bit different, and sometimes - like you - it means that they have Aspergers, or ADHD, or Autism. There is nothing anyone can do about it. It just means you are different (wrong thing to say!!!!!! I realised as I said it!!! His look also said it all!), It makes you who you are...Just think - if you didn't have ADHD, you wouldn't be able to stay as slim as you are with all you eat! And if you didn't have Aspergers, I doubt you would like Louis Hamilton as much as you do!" - (Right thing to say apparently - big grin from him and no more questions). Have any of your children asked you WHY they have AS/ADHD etc? If so, what did you tell them?

dogfish, please don't change it on my account, I am but 1 person in a forum of many. I feel bad now.

Sorry if I came across as rude on my earlier post. No offence was intended. The brown looks like red on my computer, and I can't read it properly (and I was always brought up to understand that writing in red is rude.) Thank you for clarifying that those questions would be answered in your information sheet. fiorelli x

Oh, and I hate it when people write in red. I consider it rude. (sorry if I offend, I know other people can read more clearly in different colours etc.) It just smacks of wanting to get noticed.

A few things concern me. I don't know who you are I don't know what the study is for I don't know who the study is for I don't know the detailed aims of the study I don't know who would see my input I don't know how to make the video - do you provide the equipment I don't know exactly what you want in the video - surely to get a proper study, you need questions/answers/focus on a specific area I don't have any guaranteees as to who would see my input I don't know who your study is overseen by I don't know how you would get a person with an ASD to talk about themselves (sorry - I know not all people with ASD present the same, but I know my son wouldn't sit there talking to a camera about himself/his hobbies etc) I am sure there are more, but I can't think of them at the minute.

I apologise for all the posts over the last couple of days. I am trying to get things straight in my head, but as I am finding answers, they are only bringing up more questions, some I [sort of] know the answers to, and others I simply do not have a clue. In my quest to find out who 'diagnoses' a Moderate Learning Difficulty, I have found out that you can get referred to a Learning Disability Assessment Centre. Now this is something that I have heard about vaguely on the grapevine, but never really looked into that closely. (L was diagnosed AS/ADHD by a paediatrician specialising in these, and he was assessed by an ed. psych as having specific LD in Maths and literacy) Now, I'm beginning to wonder whether this would be a good idea (getting an assessemtn by an LDAC), whether it would give us a clearer picture of what L can do - and can't do. That they will - should - be more impartial as they don't know the child/school/situation so aren't - shouldn't be - biased in any way. Have any of you ever heard of an LDAC? What were your experiences? How did you get referred? Was it what you thought it was? What did you get - if anything - out of the LDAC? Many Thanks. Fi xx

Just wondering where/whether you have your child's ASD/ADHD/ODD etc etc mentioned in the statement of SEN. If so, where about is it mentioned in there? L's is written in under part 5 of his Statement - Non-educational needs. Just wondering if this is the 'norm' or not?

Lorry, I live in Tadley. We have been told on numerous occasions that there is no provision in our area for those with ASD from SS. We get assessed and left to deal with it. I have heard nothing of this Self Directed Support (another name for Direct Payments?). Feel free to pm me. Fi xx

Thank you for your help. I have e-mailed you. J x

If you know what I'm talking about, is there any chance you could pm me your views on it. Many thanks. Fi.x

Baddad, that would be the ideal way wouldn't it? But it is fast becoming apparent to me that the LEA bod wasn't lying to me at the beginning of the summer holidays when she told me 'there are no other schools in our area that will meet your son's needs' when she answered my question 'Are there any LEA run schools other than ******** (school he's at now) that deal with Aspergers and ADHD that will meet his needs?' I am now down to 3 schools. All day schools (no boarding facilities), 1 is within 10 minutes drive (and heavily subscribed with a waiting list), the others 50mins/1hour+ drive away. I think I now need to look at out of county provision... Then private... (at least I think that would be the 'route' the LEA would take.) I have a headache.

Thanks Kazzen, will pm you if that's ok? We will be looking for a yr 5/6 placement (he has just started year 5). I recieved another call from school yesterday. From his teacher. I'd called to see how he got on in his first week (turned out fine apparently), and find out what topics they will be covering. I found out that they have actually put him BACK in maths... The poor thing, after finally getting to go to a classroom with children his own age, now has to do several lessons with a teacher and class he had 2 years ago! I'm getting sick of the ineptitude of this school.

Thanks for replying SAM, I will be seeing L's CAMHS psychologist on 2nd October and will discuss it with her then. She too has the same views re. L not being able to go to mainstream just yet, so I should be able to get some advice from her. I will be going to look at school, but my problem is cutting down the amount of schools I have to physically go and look at. The schools in our LEA's area go from the Isle of Wight in the South, to Basingstoke in the north, to the edge of the New Forest in the West, and Rushmoor in the East. (I know of a child that travels from Portsmouth to Andover - at least 47 miles! to get to school.) So you can just imagine the sheer amount of schools I need to discount (thankfully, all mainstreams will be discounted straight away, cutting the list drastically). I don't think the LEA will challenge a change of school. They will, however, try and give him something unsuitable (in my experience, they do not like paying for out of county/private schools, so will argue black is white to get your child in a school of their choice.)

I had a phonecall yesterday from L's headteacher. He couldn't apologise enough - again - for both the handling of the annual review, and of comments that have been made to us by both himself and his staff that have - in his words (and we agree) - "must have left us very concerned". He said in no uncertain terms that L just isn't capable of mainstream, that he is just too vunerable. So they would certainly NOT be looking to re-integrate him there. He said L is responding well to the structure of the school, and that although his behaviour is really good in school, he believes this is why, along with the small classes and high adult support (3:9/10). Academically, he said that they done some more tests on L at the end of last term. He said that L's reading age is 'functional' - i.e. that he can read (not everything), but it certainly isn't fluent, or expressive. That his spelling is 3 yrs behind, and that his maths is a major problem and a cause for concern. However, he said that L is very hardworking and that he is doing exactly what he is capable - that he isn't capable of doing anymore (that was hard to hear ) He said that L does not belong in a "school for essentially naughty children", and that we should be looking to move L on sooner rather than later, and certainly before high school transition. He has said we should look at calling the annual review this term, and I have an 'informal meeting' with him set up for 24th Sept. to discuss all this in more detail and decide what to do. Oh Heck! How on earth do I go about finding another school? How do I go about discounting the ones that we don't feel are right - in a way that the LEA will agree with and understand - and legally as well - somehow, I don't think 'We just don't get the right feel from the school' will go down too well! Can anyone tell me who classifies the 'grade' of learning disability a child has? I was looking at websites last night, and they were classified (amongst others) as 'Moderate', 'Severe', 'Complex', then you get the ones that mention ASD - but seem to do it as some sort of afterthought.

Hi Flora, I know how you feel. I have just sent L off for his first day back at both school and resi. today. He was absolutely fine - in fact I would go as far as to say ###### brilliant - he earned all his stickers this week! - up until yesterday. I think the reality of going back to school finally hit him. He has, however, gone off in the taxi this morning full of smiles. I just hope the rest of the day goes as well... New class, New Teacher, New assistants, New classmates (most of whom are year six, 1 year 7 - and he's year 5 - don't ask as it's certainly not about differentiating the curriculum to needs!) I hope Bill has gone off well for you and that he enjoys it now it has come back around. (enjoy the peace!) Fi xx

Hi Mumble, I don't know the people in question, so can't say whether they were joking or not. However, you CAN get into trouble with the police for buying alcohol for people under 18. You could end up with a criminal record. I always err on the side of caution... If someone has to ask you to buy them alcohol/cigarettes, then there is obviously a reason for them not to be able to get it themselves - Hence, I don't buy for them. (unless of course, it's my husband/Mum/Dad/Big Sister etc. who can't get to the shop for whatever reason etc)

Thanks for those Simon. As a bit of an update, we had L's CAMHS appointment today. To say she was shocked/unhapppy is an understatement. Basically, she explained it to us that L IS manageable at home (in that we can and ARE managing him), but that his mood swings are such that what we are doing are not having any impact. She has increased his meds (50mg Equasym, 0.5mg Risperdal in morning + 1mg at night,) and has also prescribed melatonin (again - he had it before but it stopped working -, but a bigger dose - 6mg) to help him sleep. She is really concerned and confused at the levels at which L eats (we went in with a food diary) and the fact that he has only put on a minimal amount of weight since the last appointment despite all the food. She is making a referral to a paediatrician for testing. Oh, and we have another CAMHS appointment in a months time (they are usually 6 mths inbetween). Oh, and we've had a really 'interesting' afternoon since the appointment.... Oh Joy Of Joys!