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peaches

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Everything posted by peaches

  1. I have brought up two children with autism/aspergers. I am bringing up 4 grandchildren. The youngest (9) shows traits of ASD but not enough for a diagnosis. A few years since we went twice to CAMHS and were told that after observing her in school there were no problems, she was doing really well at school, was quiet, never caused any trouble. If she had ASD she would show traits at home and at school. So I dropped it, despite disagreeing with this. My reasons were that my daughter's diagnosis wasnt made early enough as she was very quiet in school and caused no trouble. She got to 21 and had 4 concealed pregnancies before a diagnosis was made, despite her being seen by CAMHS at 14. I explained this to CAMHS and told them that girls have different ways of showing the symptoms. But I couldnt get beyond the young psychologist, and she kept saying there were no problems in school, only what I reported, she hadnt observed anything. At the moment the most troublesome problems are sensory with clothing, she wont respond to my repeated requests to do things, she is very loud. I have been through her refusal to get dressed in a morning and got to the bottom of it. The school uniform was too uncomfortable, she couldnt bear shoes and socks either, and at one point wore sandals in winter. I got round this by asking school permission for her to wear a plain white cotton t shirt, no cuffs, no collar binding. They allowed this. I also got permission for her to wear cotton bamboo lycra leggings in school colours. Instead of the school cardigan or sweatshirt she wears a soft hoodie and takes it off in the classroom. I order her socks from Israel, they are bamboo with no seams. (after trying every type of sock from UK stores). When searching for school shoes we have to ignore what the Clarks lady says and buy them too big so she cant feel them pressing anywhere. This is how we get to school on time in a morning. The above took two years to achieve, and at one point involved me carrying her to school and her getting dressed in front of the SENCO. I now make her clothing for out of school use, choosing soft materials and techniques. She will never tidy up or put things away, when asked. Most of the time she wont do homework when asked. If I withold treats, she does without. Her bedroom she shares, is always a mess, as she has to have the bed arranged a particular way. I am through with star charts. They dont work for her. Nor do marbles int he jar or whatever. She falls out with her sisters frequently and is very very loud. She wants to dictate the games they share. She has a special soft throw that she wraps herself in and finds comfort from that. She is very interested in gymnastics, and performs different gymnastics routines daily for around an hour, very minimally dressed. She is very bright for her age and does well in maths and English. At school she is very very quiet and some teachers cannot get a response. Like her brother, she sometimes responds with a sound. Right, I can understand that all that isnt a diagnosis for ASD. But in my opinion the sensory problem with clothing is bad enough to require treatment somehow as it gets in the way of everyday life. When she goes to comp she will have to wear a full uniform. Is it worth my pursuing this, or shall I just do what I have been doing and placate her with special clothing?
  2. My grandson got a diagnosis of High Functioning Autism, ADHD, Attachment Disorder and Developmental Coordination Disorder when he was 6. From age 8 he has taken methylphenidate for ADHD. He is doing well at school and is considered a natural mathematician. He doesnt see anyone about his autism but has a very good support assistant/key worker in school. He is now 15 and I am in fear for his future. School think he will definitely secure a university place in maths or science. How does a young person go to university when his living skills are so poorly developed Examples: I have to pour his drinks from bottles or he spills them. I have to get him up in a morning and select his clothes otherwise he wouldnt get up, and would make crazy choices like a pair of shorts at Christmas etc. He cannot prepare meals, I show him how to do parts of tasks and he can just about make toast and cheese and crackers. He is vulnerable and gullible when it comes to dealing with people and his relationships have to be supervised. OK so if he decides he doesnt want university, and he stays here with me everyday playing computer games, what about when I die? His mother was unable to bring him up because she couldnt priorities and neglected him and herself. What support is available for young people like this?
  3. peaches

    Im back

    You were so helpful a few years ago when my grandson and daughter were newly diagnosed. Ive come back as I have a few more worries. Hello again!
  4. peaches

    Family fund

    I have had an assessor today, it is our first application. How long after assessors visit should we expect to hear? I was a little confused because she said it wasnt means tested, its all about the child's disability and their needs. I hadnt applied before as I thought we werent eligible because my husband works. I applied when he cut down his hours because our income fell. I am sure I had spoken to someone about a grant before and we thought I wouldnt be eligible.
  5. A contact from this group made my weighted blanket about 5 years ago. Is this person still around?
  6. Yes he has a statement, yes he has support, and the new school has staff who are specialised in supporting children with autism. I chose it because they seemed to do so much for the children with autism. I have a personal meeting at the new school coming up and I will share my concerns. I only put the query on here because I thought someone else would have had the issue. I am looking into the clothing situation, have bought some already to try and see which ones he prefers.
  7. He is bright academically, gifted at maths, I tried to get him into a secondary with an autism unit, but failed. I am waiting for the new school transition co-ordinator to get back to me. I have given her a list of my worries as above. She has visited him at his old school, he has been to the new school 4 or 5 times and will be going at the end of the month for 3 full days, PE included on 2. I try to get him to use a disabled toilet as I use them myself, I have a radar key, but there isnt always one. It is a relief to know someone else has come across this. I think at home he does remove his trousers, and does often change them. He seems to see the need for privacy at home, closes the door and locks it now. The tie is a clip on, but the difficulty will be wearing a proper shirt not a polo shirt. He is going through a phase at the moment where he says his school jumpers are too tight and the bigger ones arent right either. I dont use social stories, I read up on them when he was younger, bought the book and did a few but he didnt seem to respond that well. He responds to things like check lists and being physically shown how to do something. I cant do that with the toilet issue.
  8. Can anyone help me locate the thing that updates the signatures? Things have changed.
  9. Can anyone help me locate the thing that updates the signatures? Things have changed.
  10. peaches

    Back again!

    I havent been on the group for a while, we have our ups and downs, but generally things are going in the right direction. Hope its the same for all of you. I have posted in the Education section, but it may be better in another section. I have anxieties about our 11 yr old boy using public toilets due to him dropping his trousers and pants. I will post a link and would appreciate your input. http://www.asd-forum.org.uk/forum/index.php?/topic/30375-transfer-to-secondary-school-few-worries/#entry347577
  11. I take sertraline and it has been very useful, I have been on it more than a year now. I know another Aspie who takes it and it helps him too.
  12. I have a few worries about the transfer of our boy to secondary school. The new school have been helpful so far and he has had a few visits with lots more to come. I am posting here as one of you might have come across a couple of our problems and found a way round them. Sorry this first one is embarrassing I have worries about public toilets. It has become apparent to me recently that our boy age 11 routinely drops his trousers in a public toilet even when he goes for a wee. I have told him to always use a cubicle (hope he does). He can't seem to get the idea of getting his "equipment" out and when I try and discuss it I get the angry "STOP TELLING ME WHAT TO DO". I asked DH for a man to man approach, he isnt capable of this apparently. The way I found out was his trousers appeared wet sometimes after using a public toilet. He unfastens them and lets them drop. I am working on him to keep a hold of them, but having undone the trousers he still pulls his pants down. He prefers elasticated waist trousers and shorts, but for school will wear the zip ones if they have a hook and bar which he has now mastered. My worry is that at secondary school one of the big kids will see him with his bum uncovered and make fun of him. I really hope I am not the only one with his problem, as it would be laughable if I was on the outside looking in. The other problems are less difficult to solve. Showers after PE - wont shower. Tight collars and tie and 2 layers under blazer, doesnt like this confined feeling.
  13. I have a few worries about the transfer of our boy to secondary school. The new school have been helpful so far and he has had a few visits with lots more to come. I am posting here as one of you might have come across a couple of our problems and found a way round them. Sorry this first one is embarrassing I have worries about public toilets. It has become apparent to me recently that our boy age 11 routinely drops his trousers in a public toilet even when he goes for a wee. I have told him to always use a cubicle (hope he does). He can't seem to get the idea of getting his "equipment" out and when I try and discuss it I get the angry "STOP TELLING ME WHAT TO DO". I asked DH for a man to man approach, he isnt capable of this apparently. The way I found out was his trousers appeared wet sometimes after using a public toilet. He unfastens them and lets them drop. I am working on him to keep a hold of them, but having undone the trousers he still pulls his pants down. He prefers elasticated waist trousers and shorts, but for school will wear the zip ones if they have a hook and bar which he has now mastered. My worry is that at secondary school one of the big kids will see him with his bum uncovered and make fun of him. I really hope I am not the only one with his problem, as it would be laughable if I was on the outside looking in. The other problems are less difficult to solve. Showers after PE - wont shower. Tight collars and tie and 2 layers under blazer, doesnt like this confined feeling.
  14. He has had a statement for at least 3 years now. He has IEPs. I take your point about what it will achieve. I have made an appointment with the Autism Communication Team (again). We havent seen them for a while. They used to be present at his reviews when he was first in school but they arent. I feel as if at first the school was doing a lot, but now they are just sitting back.
  15. R (diagnosed High Functioning Autism, ADHD) now aged 9 has been excluded from school for biting another child. Its a fixed exclusion and was for yesterday afternoon and today. He goes back after half term. Its the third such incident in a fortnight. I know its wrong and he shouldnt have done it, but I feel it occurs because of his diagnosis and he cannot cope in the playground. I have asked repeatedly for him to be more closely supervised in the yard. I pointed this out in a letter today to the head. The head said she had given additional supervision and gradually withdrawn it to give him more freedom. She also pointed out that there are times when even an adult was close by incidents could occur. Yesterday he had tried to find an adult but they were dealing with someone else so he took the matter into his own hands. Myself and R would actually prefer it if he didnt go out into the yard because he doesnt actually like it. Having looked over the exclusion letter I notice I have a right to appeal to SENDIST. Im not fussed about the exclusion being revoked or anything, I would just like him to be excused from going into the yard or having one to one supervision in the yard. I am actually tired of asking for them to supervise him more closely. I do it each time he has a run in in the yard. Its obviously not working. Shall I write to SENDIST? Is it worth it? Shall I write to the governing body?
  16. R has been having melatonin 2mg for a week now and its been a godsend. We were only allowed 14 days prescription as our health authority will only prescribe it for 14 days for purely budgetary reasons. Im wondering if I can buy it?
  17. My daughter has never been able to work and has limited social skills. She occasionally sees an occupational therapist and this is her only form of support. The occupational therapist has recently been trying to get her to go out and mix more, and has got her into a special sewing group where she will be supported. My daughter seems to be enjoying this and wants to try to make her own clothes as she has a bit of a flair for fashion. The OT has tried to get her a grant for a sewing machine but this has been unsuccessful. Does anyone know of anywhere that would give a grant to an adult, on benefits and DLA, to purchase a sewing machine? I have been trying to find something on ebay and have posted twice on freecycle, so far nothing. I know quite a bit about sewing and know what Im looking for, but its just the funding.
  18. I know this is reviving an old thread, but Raph has had a weighted blanket for about 18 months now and its most beneficial. His school have ordered him a weighted belt as the OT thought one might be a good idea but he doesnt like it much. Im thinking something like the shoulder thingy or lap pad might be better. Can anyone make a suggestion about one of these and where to get it from please?
  19. 1. Change the social story 2. Get Carole Gray's book on social stories so you have a better understanding of what they should contain and how they should work.
  20. His teacher called me in to say that although there were still one or two problems in the playground, since starting the medication Raphael has been a different boy in school. His concentration has been much better, he has been on task more and hasnt made a fuss at things that normally cause him to. She is really pleased with him. As she points out, she knew I was reluctant to consider the medication, but hopefully the effect of the equasym is giving him time to think before he acts, and therefore this is helping him learn more productive ways to behave. Im really quite pleased, as I didnt expect anything so dramatic straight away, nor did I expect him to take the tablets as well. I still dont like having a 7-8 year old on regular medication, but if it helps him then it is acceptable. We still have a lot of trouble getting him to settle down at bedtime, but thats always been the case.
  21. My son was in year 5 or 6 at primary school when he got the "Lynx effect" and asked for some for his PE bag. So age 9 or 10 I suppose. At that age they had a male teacher and he talked to them about this sort of stuff! I dont ever remember him smelling bad, he was always ever so fussy about hygiene, and still is. My daughter, however, often needed to be reminded about this sort of thing. And sometimes she is still smelly. As you can see from my signature, my son is NT and my daughter AS.
  22. The headteacher got him to take a second tablet at lunchtime, and his teacher reported he did every well today. I sometimes feel a bit inadequate when there are things I cant get him to do, and someone else does, but I know its not unusual. I was glad he was OK though as he thumped me this morning when I turned his computer off as he wouldnt get ready. He had lots of warnings before I did it. I have now banned morning computer. He never used to touch it in a morning but all of a sudden he does.
  23. Has anyone had any experience of crushing a tablet of equasym (NOT sustained release just normal white pill) into food or drink? CAMHS said not to because of when they get onto sustained release form, but R is quite definite that he is only having one a day. School have said there has been a tremendous difference, and obviously when he is more open to learn he is also more open to learning about how to control his behaviour. He is supposed to have 3 a day after food but he is quite adamant about one. I dont like the idea of slipping another tablet crushed into his drink, I dont see it as a permanent method (PLEASE dont start a debate on the ethics of this), but I would like to know if its OK for the times when he wont take it normally.
  24. Thanks Suze, thats reassuring. <'> I cant believe where this thread has gone.
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