Kathryn

Baddad, I can't get the picture out of my head of you spontaneously exploding. Rather like the egg I dropped and trod on soon after getting the letter. Thanks for the encouragement. I hope you're right. I'm learning fast that these people who make arbitrary decisions about our children's lives inhabit a strange parallel universe devoid of reason and logic... K

Helen, Can you tar and feather my LEA while you're at it? Sorry to hear that you had bad news today too. K

Thanks everyone <'> back to you all. Feeling a bit calmer now. Now that the red mist has cleared, having read to the end of their letter, it says that the decision was based on the evidence received by 16 Nov and the panel would be "very happy" to reconsider Lucy's case. If we have more recent additional info or reports I am invited to contact the assessment team manager to arrange for the case to be looked at again. Do I take this as a hopeful sign? It's possible that the panel did not take into account that she is not at school at all and hasn't set foot in the place since 15 Oct. (Their advice to the school suggests this). to My last piece of evidence does not make this absolutely clear, and I'm kicking myself as it could be crucial. I guess I need to speak to them tomorrow before setting off down the appeal route. I know we are right. But how long will it take "them" to see it? I like your quote, Vicki! Not giving up - watch this space. K

The panel, in its great wisdom, have decided not to assess my daughter for a statement. So we have failed at the first hurdle. Their "carefully considered" reasons? The panel considers that the school has not shown evidence of implementing and reviewing external advice. The panel would suggest that the school contacts the Autism Advisory Service and incorporates their advice into an Individual Education Plan". They go on to say that her progress will "continue to be monitiored" with advice from Professional Sen Services. I feel completely demoralised. All the evidence we sent in, including a strongly worded report from the co director of the Autism Research Centre in Cambridge has gone unheeded. We may as well have sent them the local bus timetable for all the difference it has made. I feared the school would be the weak link in this, and I was right. Because the school did not follow SEN procedures last term they have no evidence to show thayt they have gone through all the stages. I don't know what was in their evidence to the LEA but I would expect that they covered themselves rather than admit the truth that they screwed up. I daren't speak to the school right now as I would probably say stuff I might regret. What do the LEA honestly expect us to do? They are talking as if my daughter is still in school - how do they propose to "monitor the situation" ? It's obviously too late for any of the usual support services. We tried everything to keep her in school and we have professional advice that to continue to send her would be damaging. I have a child at home who speaks to no one except immediate family, and even then uses single words a lot of the time. Who melts down if anyone says hello to her in the street. Who will not walk past groups of schoolchildren. Who can't make decisions about what to wear let alone what to put in a GCSE essay. Who will not go out anywhere where she might meet people let alone set foot in a classroom. Who has said yesterday that she wants to move away from [ our town] because of all the bad people and bad thoughts connected with it. This is the reality of our situation. How can they make an informed decision without assessing her when it should be clear that this is a complex case? I feel like dumping her on the doorstep of County Hall and daring them to tell me then her special needs don't warrant an assessment. Now part of me is wondering if there was something else we should have done- if I messed up the request in some way. I never wanted to initiate the process but I had no choice. I'm cynically thinking the LEA want to obstruct us as much as possible so that they can ditch her when she's 16 in March. I've tried to read my ACE handbook to see what to do next but my head is just spinning. I've left messages with the NAS advisor and the PPS person. I was already on the floor emotionally this week because the situation at home is tough enough and this is just like a kick to the head. I was preparing for the worst - I know many of you have been through this and worse. I know you guys understand the frustration I feel right now. If anyone can help me see the way to go from here I'd be grateful for any advice. K

Thanks Mike. This slowing down of the brain is something that bothers me. She finds speech difficult and I'd like to see if stopping the medication makes a difference to this. She does say that amytryptyline stops the "jumping" feeling she gets in her legs so anything we replaced it with would have to tackle that symptom - she says that's the main thing that keeps her awake. I long for the day when she doesn't have to use anything at all. K

nellie, Your son's sleep patterns sound very similar to my daughter's. She has often argued with me about the wisdom of going to bed at a "civilised" hour and has said that, left to herself, she would prefer to go to bed at 5 am and sleep till afternoon, that's just the way her clock works. Of course there is no way the rest of the household could cope with that. Now she doesn't have to get up for school, though, it's tempting to let her sleep in, and I have occasionally done so, just to give myself a break, but if she gets used to that she will find it very hard to adjust later on when and if she goes to college. Thanks Kirstie, it's good to hear the experiences of people who have actually been on these drugs; there are so many pros and cons to weigh up. I hope things carry on getting better for you, K

Hi Zero and welcome, I don't know what age you are dealing with but I've found: Autism: preparing for adulthood by Pat Howlin to be pretty useful, focusing on adolescents and transition into adulthood; a good overview of the problems they face. K

bid and Auriel Great news, glad the visit went well. :D The best Christmas present ever, if it all works out. K

Thanks kirstie, Did the amytriptyline affect your balance when you wre walking? kl

Thanks tez and simon, that's really helpful. My daughter has always had trouble taking pills though, can't swallow them and I always have to crush them up for her, so ideally a liquid would be better.

karen and baileyj, Your experiences seem to confirm what I have suspected, that the amytriptyline is causing a general slowing up especially, karen if you were only on 20mg. My daughter is on 50! She can get away with more sleep at the moment as she isn't at school, but there is no way she could live like that in the long term. I wouldn't mind if it was doing something for her anxiety, but it hasn't made a noticeable difference to that. I think I'm going to reduce the dose slightly for now: she is due to have it reviewed anyway next week. Tez, how can I get hold of this melatonin stuff and how much is it if we can't get it on prescription?

Thanks for the replies. I've been reading the thread on melatonin with interest. It might be worth a try. Tez does it affect your son's alertness during the day? Lucy was on sertraline for a while which I think is an SSRI as well. That didn't help her sleep at all, in fact she seemed to be more agitated on it, and she had a skin reaction as well. Prozac does worry me, it seems risky in someone her age. The trouble is, you can't know in advance how someone will react to a particular drug, so everything is an experiment.

My daughter has been on 50mg amytriptiline nightly for the past 3 months, more or less. It was prescribed mainly to help her sleep, which it has done, she now goes to sleep fairly easily and has an unbroken 8 hours plus. The rest of us sleep better too, as a result, because she isn't up and wandering around. The trouble is, she complains of tiredness throughout the day, and aches in her limbs. She seems to have balance problems at times as well, ie she holds on to the walls when coming down stairs, and her general stamina seems to be low. I don't know if this is related to the medication, has anyone else noticed anything like this? On occasions when we have forgotten to give it to her, or given it really late, she reverts to her previous pattern of staying awake till 5 am because she says her mind is racing and the muscles in her legs twitch so she can't sleep. It has been suggested by a specialist we saw a short while ago that she tries Fluoxetine (think I've got that right) which is prozac, apparently. I don't know what effect this will have on her sleep patterns. Trying to weigh up all the pros and cons - obviously we'd prefer it if she didn't have to take anything at all. Any personal experiences of either of these medications would be welcome.

Received my claim pack this morning. just when I was wondering how to entertain myself this weekend. I think I need to lie down in a quiet room before I tackle it! Hope we get it as we really could do with the money. Thanks to everyone who has posted info on this site as I would never have known about DLA otherwise. I will be reading the relevant threads carefully before filling the forms in.

Bluejenie, I too would like to take those boys and bang their heads together. Our children are so vulnerable and school behaviour policies don't take account of their particular social and communication problems, so they always come off worst. My child has often been on the receiving end of bullying and has started threatening to hit anyone who touches her again, so I sympathise with your situation. K

I can also add my recommendation. I had already come across this website, and shown it to my daughter as I thought she would find it useful. I think his words of wisdom deserve a wider audience and I hope someone will publish them in book form one day. I was sad to find out he was no longer alive. Does anyone know why he died?

Thanks for the advice. (Why do I have that "night before an exam" feeling??) After re-reading the report from the psychologist who diagnosed Lucy, it seems that most of the recommendations she made have not been followed in any consistent way by the school. From what Lucy has told me, some teachers have done some things to help but there is no written evidence of this, at least, none that I have seen, but I'll see what the SENCO has to say tomorrow. To add to the mix, Lucy came home at lunchtime today very agitated and wouldn't go back for her last two lessons ( a combination of bullying and complete sensory overload) I think a break from school on medical grounds seems increasingly likely. As she has been on antidepressants since May I don't think we'll have much trouble getting backup from the GP.

Mossgrove, thanks for the encouragement. Our meeting with the Senco is tomorrow. I find it difficult to approach these situations with the right degree of assertiveness but having the right information helps. A couple of months ago I knew nothing at all about SEN provision. At the moment Lucy's anxiety is now so acute she may need to spend some time well away from the classroom. If we keep her at home even temporarily, will it weaken our position with regard to getting a statement, do you think?

Thanks for the welcome everybody. I've come here for some much needed respite after trying to get Lucy to organise her bag for school tomorrow. We are going to meet with the SENCO this week to talk about the way forward. I was advised by someone from the NAS to go for a statutory assessment so I think that's what we'll probably do, although the prospect makes my head spin. Up until May she seemed to be coping reasonably well with the pressure - the change has come so suddenly. (I expect I should be saying all this over on Education rather than on the Introductions thread, so I'll shut up now. )

Hi everyone. I'm really glad to have found this site; I've already found it really helpful. It's comforting to know there are others like me out there and I look forward to getting to know you. I have a 15 year old daughter who was diagnosed with Aspergers in April. She has never found school easy but recently she's begun to suffer severe anxiety about going and has lost all motivation. She has cut herself off from the few friends she had. The school don't seem to be aware of the seriousness of the problem. Taking her out of school would ease the stress, but this is her GCSE year. I'd really like to talk to anyone else in a similar situation. I also have a 7 year old NT son who is the complete opposite, sees school as one big exciting adventure. having taken the plunge and made my first post, I'm now off to bed!