fiorelli

Hi Cariad, We have noticed Louis's 'strange' pain threshold in more ways than the dentist incident. It just seemed more 'intense' because it was witnessed by someone who didn't know Louis, and the Head of resi (who had taken him to the dentist for me), and the sheer fact that someone had lanced him and he hadn't flinched. Other incidents of note for us are when he was cutting cardboard with a sharp kitchen knife cutting himself and me only knowing when I walked into the kitchen with it looking like a bloodbath. Louis was still merrily cutting away. He also fell down the stairs in resi. No tears, no mention, yet the next day his ankle had swollen up to twice the size. However, he can also go the total opposite - if you accidentally brush up against him, he will scream blue murder!

Thanks baddad, don't worry about the order. My stupid fault for duplicate posting!

Apparently her Dad found her this afternoon. It appears that she tripped over a ladder and had fallen out of the loft hatch. We have no other information. Louis will be gutted she's not there for their trip into town. Get Well Soon E.

Oh, I forgot to say, if you have a fruit monster, please, please, please give them a little bit of cheese afterwards (if able to of course!) to neutralise the acids, and make sure they are brushing their teeth properly. It was only watching Louis brushing his teeth on the weekend, that I realised that he can't manage to turn the brush upside-down and brush the biting side of the top teeth. These, of course, are the teeth that now need to be pulled.

I did thanks smiley. Thankfully, the dentist got some advice from a higher ranking dentist(?) and was given the ok to do the work with his carer there. The only stipulation being that she had to phone me to tell me exactly what she wanted/needed to do. I updated a little more in general, but basically, she had to lance 2 absesses (which she proclaimed, L didn't even flinch at!), and she has to remove 4 baby teeth, and fill 1 tooth. He has 2 more appointments in April, one during half term, and one later in the month. Louis's comment to me on the phone just now was just that it was 'weird' (I had asked him if it hurt at all)

Well, it was sorted and Louis is sat in the dentist chair right now. Dentist has just phoned me. Louis is officially 'brilliant with pain'. Apparently she has just lanced 2 large absesses that cover the gums over 4 teeth and he didn't flinch once. She is just off to try and pull a tooth or two and drain the absesses some more (they keep filling back up apparently ) depending on how Louis is. If she can't do it, then he will have to have a general anesthetic to have them taken out. (although the waiting list stretches to June, which funnily enough is still a damn sight quicker than an appointment at our 'own' dentist, which gave us an appointment in July!) As 'luck' would have it, the dentist that the dental helpline pulled strings to get him into is actually the community dental centre - where children with special needs get sent. So it looks like he's going to be registered there from now on. A bit more of a trek for me, but I'll be able to arrange the appointments better in the future. He has to have a 5 day course of antibiotics. My poor boy is going to have a rather sore mouth, and I can't give him a hug until Friday

Can someone tell me if I'm right in thinking that Louis's resi career can take him to the dentist (emergency appointment)? Louis has abcess on 2 teeth, and the only dentist available anywhere is one right near his school at 2.20 today. I can't get there and back in time to pick up my other 2 boys from school at 3.00. Dentist has now said that she isn't happy to do any work on him unless I am there. I swear I have filled in a form giving resi the permission to take him for any emergency treatment he needs (this is getting checked out as I type), would showing this to the dentist, along with a phonecall be enough to let them do the work, or do I HAVE to be there?

Canopus, the one for Basingstoke - 'Different Worlds' - has closed. apparently the person who's running it couldn't do it any more after the death of her father.

I asked on here a couple of times for advice regarding my 24yr old sister - N. (possible AS, living at home, no job, no money, refused DLA). Basically, my (other) sister has just given me an update... My Sister (N), has herself, organised for her to attend a day centre, recieve help for her AS via hospital, has got herself DLA, has got herself into an assisted living house which she will share with 3 other adults, and will get support as and when she needs it. She should be moving in at the end of March. So. well done N!

Hi Caroline, Thanks for replying. I didn't make it clear in my op. L has already been awarded DLA. We applied in 2005, and he was awarded for 5 years! (not looking forward to re-applying in 2 years time!) Now L is boarding in school, the Care element of DLA is reduced, and I have to fill in a form every month to let DLA know when L is actually at home. They then award accordingly. I couldn't remember how long it is that they usually take (when I last sent in the form, it got lost, and I was chasing it for nearly a month). I have however, phoned today to check whether they recieved the form, and not only have they recieved it, they have actioned it, and sent a payment to my bank that I should get in the next couple of days.

That's exactly it Kazzen. I'm sure I've asked the question before though? But thanks for replying. Hopefully I should hear by the end of the week. If I haven't I'll call next Monday.

I'm pretty certain that I have asked this question before, and been given some info by someone on here (kazzen?) but the search engine isn't my friend tonight. Anyway, on with the question... I filled in the monthly DLA form and sent it back a week ago. I believe I got told that it takes around 7-10 days for the post to go through their system. Does anyone know how long after that it takes them to decide whether to pay, and if so, how much? Thanks Muchly. fiorelli xx

Thank you all for replying. There is some useful info which I will look into more in depth this week. stressedmum, you have a pm back.

Has anyone got any experience of moving areas with a child with AS/ADHD? Any idea what it entails with regards to school/CAMHS/Drs/Meds etc? We are thinking of moving closer to family which would mean moving into a neighbouring county. Louis has a Statement of Special Needs which has literally just been through an annual review. I believe that the new county would have to keep to the statement until the next annual review at which time they are in a position to either renew or revoke it. But what happens with the likes of CAMHS and meds/psychiatrist and Hospital Doctors? I want to check everything before we finally decide what to do. Oh, and if anyone has any experience of a local authority with a Door Set in it, or even any mouths of Bourne, or a big Pool, I would be greatful of any PMs. Thanks. fiorelli xx

Does anyone know anything about play therapists? Basically, there is one that comes into Louis's special school and works with some of the children. Louis is one of them. Does anyone know how much information on these sessions I am entitled to know? Is he entitled to full secrecy (wrong word - can't think of the right one!)? Or am I, because he is a minor at only 9 years old, allowed to know about everything that goes on?

We had Louis's annual review a few weeks ago, which his teacher couldn't come to as she was poorly. Upshot being that I was having a moan to his resi. keyworker about feeling out of the loop with school now that he is in resi. His keyworker has set up a meeting for myself, her (keyworker), his teacher, and the play therapist he sees in the school. Now, I fully intend to use this meeting to the max. Will be asking about his schoolwork, whether they think he is actually progressing when his reports suggest otherwise, how I can help him with his schoolwork at home Ask about him using a computer/other ways of him recording things as he complains his hands hurt when he writes. Will be enquiring more indepth about his behaviour in school in order to find out whether he is actually fine, or whether he is just being overlooked because of others worse than him. Will be asking for advice on how to manage his anger asking for advice on how to work on his aversion to anything he considers an unwanted negative response. finding out how he goes about playing asking the ages of the children in his class (possibly) finding out about homework/reading books - we NEVER see any of these - apparently he does it all in resi. asking what sort of things the play therapist is doing with him. can you see if i've missed anything?

Was just looking on Great Ormond Street Hospital Website, and came across their question and answer bit. I was interested as to what they had to say about Autism and Asperger Syndrome. I am Gobsmacked. quoted from here: http://www.gosh.nhs.uk/gosh_families/advic...e/a/autism.html So does this mean that Louis's diagnosis of Asperger Syndrome is false? He has major problems with Language and it's use, it's context, with listening to is and to speaking it (correctly). He is also, at age 10, only at level 1b/1a for most subjects, and is assessed at age 6 for reading, writing and maths.

Hi Smiley, I am so sorry that you are going through this. As you know I have had 'dealings' with this particular LEA man myself in the past, and had much the same response as you. I feel for you. I too am in a similar place in that L isn't progressing (gone from a 1b to 1a in 3 years!), but cannot appeal/try to get him in another school because the LEA won't amend the statement, and the school take the line that he IS progressing Stuck with the status quo until something quite big gets bashed against a brick wall shattering it. I unfortunately have no words of advice. I wish I did. I just want you to know that you're not alone. J xx

This information is from my local authority website. A special Needs register is something that local authorities have to set up to follow law. This info tells you better than I can. My local Authority have called it the 'Joint Information Link' instead of a 'special needs register.' Hope this is of help to you. Why do we need a Joint Information Link? The Children Act 1989 required that all local authorities set up a register for disabled children. ***** developed a register in 1993, but over the years it became obvious that a joint register would benefit all the agencies that work with your child - Children's Services and the National Health Service. Parents continually say to us, "Why can't you talk to each other?" "Why can't you share information?" The JIL enables us to co-ordinate services for children with disabilities, and work together with families to plan and provide better services for the future. The JIL will help us to identify when a child is: of an age when they may be eligible for a Blue Car Badge, e.g. for parking, so that we can alert our colleagues who deal with these badges eligible to receive a yellow card which will briefly describe their disability, under the Disabled Persons Act. This yellow card can give evidence of their eligibility to access certain equipment and adaptations.. (To apply for a yellow card, please visit your nearest Area Office.) The JIL will also provide the following benefits: each parent or carer whose child is on the database will receive a copy of the Pinpoint publication, which gives details about services available in the county - statutory and voluntary services - and how these can be accessed. This is updated approximately every eighteen months help us to ensure that we make more effective transition plans for those young people who are likely to need support into adulthood enable us to identify gaps in services for children with disabilities and their families help us to decide which services will be required in the future, for both children and adults. Within the first year we are hoping that the JIL will allow you to: contribute to service development by giving us your thoughts and opinions enable us to keep you up to date about new developments in services, changes to legislation, etc. How can I put my child's name on the Joint Information Link? You can choose to put your child's name on the JIL if you are resident in Hampshire or registered with a Hampshire GP. If you're not a resident of Hampshire, some of these benefits may not apply. You can apply in several ways: For newly diagnosed children it could be when your child is first diagnosed with a disability, the Health Visitor (or sometimes the Consultant Paediatrician or your GP) will ask you whether you would like your child's name to go on the JIL. You can download an application form here: Download the JIL application form (PDF format) Download the JIL application form (Microsoft Word format) If your child was diagnosed some time ago, you can: contact the JIL Co-ordinator talk to your social worker contact your child's school download an application form using the links above. Young people, under 18 years, who are able to decide for themselves can ask for their name to be placed on the JIL. You can ask for your child's name to be placed on the JIL at any time up to the time they are 18 years of age. You can also ask for your child's name to be removed from the JIL if that is your wish. Young people who are able to decide for themselves can also choose not to have their names on the JIL, and can request that their names be removed. In these circumstances please contact the JIL Co-ordinator. Must my child be on the Joint Information Link before they can receive services? No - putting your child's name on the JIL is purely voluntary. If you decide not to, this will not prevent you from receiving any services your child has been assessed as needing.

I have just read on another thread (westie's re. IEP's) that assessments do not go lower than what is expected of a 6yr old. Is this right? If so, that would explain why Louis's reports state that he has had a reading, writing and maths age of 6.0, 6.4, and 6.0 for the last 2 years (at least). Also, if this is right, how are you supposed to know that your child is progressing if all assessments say they are at 6.0 when, in fact, they are probably performing at less than that? My 6yr old had an assessment of the year 1 key words before half term. Out of 75 words, he got 72 right. Louis asked if he could do them. He managed to sit still long enough to do 30 of the words (before storming off because he couldn't sit still no longer and knew he couldn't right the word 'there'). Of them 30 words, he only got half right. Also, something to come out of his annual review is that Louis now knows his 2 times tables, and needs to start learning his 3 times tables. It appears that he only knows the 2 times tables by rote (i,e, 2, 4, 6, 8, 10 etc) As soon as you put the 1x2=2 in, or take them out of sequence, he hasn't a clue. But according to his teacher/deputy head teacher/annual review report, he 'knows' his 2 times tables.

Thanks Kazzen. Will look at the links when L has (finally!) gone to bed...

Does anyone know if there is anywhere you can go to get independent assessments of your child, in terms of where they are education, behaviour and socially-wise? Thanks, fiorelli xx

Thanks for replying all. The thing is, I don't know whether these things are classed as 'tics' , and some have become so much of an everyday occurance for him/us that I just don't think about them anymore. Things like Louis's tapping of his leg/suddenly standing/jumping he has been doing for as long as I can remember. However, he can go for periods of a time - from days, to weeks, - without doing it, then all of a sudden he starts again. We have mentioned these before when he was first diagnosed, but nothing was ever said about what they were. Louis's clicking with his mouth is something totally new that was only brought to my attention last week. He did it while calm and in the middle of a calm conversation where we had both gone quiet (as you do while thinking of something else to talk about/mulling something over) for the first time with me a few days ago. If you ask Louis to stop doing it, he will often say 'I can't', but on the other hand, he will also do it just to annoy us! (There is a difference though, as it isn't quite 'right' when he is deliberately doing it, you know, sort of in the way you can tell the difference between 'naughty' behaviour and ASD/ADHD behaviour)

At L's CAMHS appointment at the ADHD clinic (don't ask!), the psychiatrist asked if L has any tics. I automatically said no. When my husband came home later that day, I was telling him about the appointment and the tics question. And he automatically said 'yes he has', and reminded me that Louis flicks his hands by his face, and when he is sat having his meals, he taps/shakes his leg (as if timing really fast music iykwim) He also does this when brushing his teeth. I also mentioned it to his resi. keyworker, and she said that yes, they have noticed him doing things that may be classed as tics. He does this thing with his tongue where he is half licking his lips. She also said that at meal-times, they have also noticed that his does this 'clicking' in his mouth, but don't know how he does it. I heard this for the first time yesterday, and it sounds like it's coming from the back of the tongue/throat, and is really quite quiet, but noticeable. She also said that while watching tv of an evening, he will be sat there watching, and then all of a sudden stand up then shake out his shoulders/arms. She said that she had thought 'that's strange' but nothing else. (he has done this at home too). Writing that down seems like quite a lot really! Now my problem? Is this 'normal' AS/ADHD behaviour, or is it tics? Does anyone else's child do anything like this? Should I contact CAMHS and let them know, or should I leave it until his appointment in August?

Happy Birthday to you, Squashed tomato and stew, Bread and butter in the gutter! Happy Birthday to you. Hope you had a great day Bid!