sueeltringham

Stay strong and don't let them get to you. Hugs, Sue

She doesn't need an exam to give her an end of key stage grade. They can just go with the teacher assessment, as they do for lots of pupils who miss exams. She's bound to have caught a bug the day before :-). I wouldn't send her in. It's not worth her getting stressed over. Maybe you could get her to do some suitable work at home, so that it feels like she's not getting the easy option. However, make sure she realises that this is NOT going to happen for her GCSE's! Good luck!

For the sake of any other patient/family with a possible ASD, you've GOT to put in a formal written complaint. His attitude is disgusting and could cause someone/patient/family/parents serious mental stress. I honestly can't believe he said that to you. Sue

Well we were told similar by our ed psych and autism specialist teacher. We were first told he wouldn't get a statement. I ignored all the advice and requested assessment. We heard we had been turned down initially, but for some reason they then decided to assess (?I think because me and the HT kicked up a huge fuss?). We expected between 5 and 15 hours and came out with 16! It wasn't an easy ride, but I'd documented everything, including keeping a diary of all the anxiety attacks at home. I do feel J' s needs are met at the moment as he's functioning really well and achieving. It's taken us over 2 years to get this though. I think the deciding factor was that an autism specialist teacher came into school for the whole of the summer term for several hours a week. J functioned so much better when he was given specialist help and the teacher was able to demonstrate techniques and the subtleties of his anxiety. It might be worth thinking about the times you think he might need the most help, eg. breaktimes, lunchtimes, PE, assemblies (the difficult times for J) and work from there to calculate the amount of support you think he'll need. Sue

A beautiful film of a beautiful family! I could identify with many bits, especially the sealife place which my son has a love hate relationship with the tunnel. As for traffic jams, the anxiety is exactly what I see when/if I can look in the rear view mirror. You are such a loving family with a very positive attitude and that's how we strive to be. Well done! Sue

It's a fine line Xilef. I could confiscate something which could be dangerous, or against school rules. However we have to be extremely careful, because it's not our property and if anything should happen to it, then we are responsible/liable (imagine scenario with mobiles, mp3 players going missing!). Certainly, in the school where I work, the student would be asked to remove/put something away and if not carried out, then discipline procedures would be followed which would be for disobedience. Of course it depends on the school. Perhaps you could apologise to your teacher yourself for the way you spoke and ask really nicely for your property back. If you don't want to do this personally, you could always write a letter. It would look much better coming from you rather than your mum.:-) Sue

It's terrible that you've had property confiscated, Xilef. I'm a secondary teacher and I would never be allowed to confiscate anything as it's a students personal property. Not sure what your school policies are, but you could maybe talk to your form teacher/head of year and explain the situation. Glad you're getting some help with your GCSE's. Sue

Yesterday, we met some people we haven't chatted to for a long time. Eventually the conversation got around to ds's diagnosis. They were quite surprised, but then started comparing him to another child they knew with a similar diagnosis and could see the similarities. Then the wife, out of the blue, said 'Isn't it a shame, all the people in the country who have perfectly normal children with no problems and just don't love and care for them! and here are you with a child......' I stopped her in her tracks. I was sort of shocked at the statement as she went on to say 'look, you have all this love for children' I was a little taken aback, but told her that we wouldn't change my son for anything. He was very affectionate, very clever, and had his own little personality. I'm not sure she knew where to put herself, but how could she think we were disappointed with our child? Or that we didn't love him? or that we would even consider swapping him for a child who was normal, but unloved? Which is what she was trying to suggest. Strange some of things people think! Just had to share and I'm surprised at how calm I am after the conversation.

We have a strict order for everything. Dictated by my son of course . It helps that I have a toddler to dress and nappy change, so we all go into her room. It's taken us about 3 years to get to this point and lots of breaking tasks down and rewards for each very small step forwards (such as managing to TRY and put a sock on without help, even if not on properly). So, now we have a competition of who can do what first. Countdowns also help, but we use that strategy all the time for other tasks too. Of course, it all goes pear shaped if something is out of order, or something is missing or wrong (wrong socks for instance?). It's so fixed that socks have to go on first, pants next, etc. He can independently dress now, but needs me in the same room and it all breaks down if 'we' finish first and have to go downstairs to feed my youngest. So, after all this rambling, what I'm saying is that we've established a strict routine which works for us and it will take time. We have tasks split into mini tasks and mini rewards. Hard work, but worth it in the end. sue

I'm so cross about this too. Joe was diagnosed almost a year ago. Since then the paediatrician and SLT service have both discharged him. CAHMS saw us twice to follow up our diagnosis then promptly discharged us saying that we, as parents needed to be Joe's therapists and were responsible for his care (????). I'm still fuming as we suffer periods of anxiety which is severely affecting all of us and we are left to 'deal' with it. Support services for those on the spectrum are dire! Sue

I had HUGE problems breastfeeding in the first six weeks. He just didn't seem to 'learn'. He was very fussy about positioning, any other distractions or changes in his routine. I remember sitting for hours trying to get him to feed. I know I was a first time mum and all that, but looking back it makes much more sense now. We stopped breastfeeding at 8 months when he discovered the bottle and completely refused to feed any other way My second, dd was an absolute doddle to feed and fed from birth, knowing exactly how to suckle and just found her way there. Sue

Hi Jsmum, Thanks for the ideas. Have wondered about a weighted blanket. Will def look into it. Bullying at school/ other things that happen at school I really have no idea as he won't talk about school (but unlikely). School report no change, but in the same sentence report that he's continually asking stupid questions which is a sign of anxiety in him. We have contacted the communication team and flagged this as a concern at school (he's statemented). We're not aware of him watching anything as he watches very little tv, and then only stuff like cBeebies. I don't think it's linked to Piriton or anything as he's had that maybe only half a dozen times (hubby is a pharmacist, so tends to not medicate!). He has suffered quite severe anxiety attacks previously, but in the daytime. The night time ones are a new thing. We were referred to CAMHS last year because of the increase in severity of his day time attacks, but the appointments were useless. Basically they told us WE had to sort out our son's probs and become his 'counsellors' and therapists!!!!!! I'm wondering if we maybe need more medical help, i.e. medication? In the past it's taken me months to work out what 's been causing the anxiety and it looks like anxiety is one of our main problems at the moment! I'm hoping that the coming 2 weeks off school might help, we'll see! Sue

Thanks for the reply, Enid! Been up to him twice already. Afraid I was quite stern and told him I didn't want any nonsense. Not a peep at the moment, so hope it works. We've tried reading, singing, and 'giving him a dream' (his request) to calm him, but sometimes nothing works. Changes are worrying and difficult to get to the bottom of! BTW, we have tried Piriton as it has a mild sedative effect. We have used it on occasion and it worked! I don't want to be using it every night unless advised by a doctor. My son seems quite hyperactive at the moment, where he used to be very placid and passive. Hope you get to the bottom of your probs, Sue

DS used to sleep very well, mostlly anway. However, since Christmas he has been waking up to five times at night and not going to sleep until very late, either, often into the early hours. During these 'awake' periods he seems to be suffering pretty extreme anxiety where he is irrational and very demanding (partly because he just shouts from his bed). We mostly calm him with pressure and holding, but sometimes this can take a long time to settle him and is having it's toll on us. We had thought that the anxiety was linked to his wobbly teeth, but now I don't think so. I have also gone back to working 3 days a week shortly after the problem started, which doesn't help. In the daytime he has a good routine, seems happy both at home and school and the only sign of anxiety seems to be that at bedtime he is talking monologue pretty much incessantly. It's looking like our previously good sleeper has become hyperactive and I've read that this can happen. I don't know whether to go to GP, try to contact CAMHS, or try something else. So, I would welcome everyone's ideas. Sue

My son hated reception last year. The teacher hadn't got a clue (to the point of negligence) and his needs were not being met. However in year one he has two VERY understanding teachers, a very good TA who understands him really well and a statement in place. It has made such a difference, but I know that next year could be totally different (because he'll have a different teacher). I strongly believe that children need to be happy to learn, so if school was making my child so unhappy I'd have to consider other options (other schools, home-ed, etc). It's amazing what a difference specific strategies have made. Maybe you dd's aide needs to be trained, or perhaps the school should be asking for outside help, such as ed psych, or other specialist teachers, assuming she is at SA+, or she has a statement. We had to push really hard to get specific help, but it has been worth the fight. Sue

We had a similar situation at Christmas with school productions and I just told school that ds would only attend one of the evening's shows and he didn't make it in the next day, either! Tough! As it turned out, loads of the other kids found two evening and two daytime performances incredibly difficult, so then I felt even more justified (and smug). After the event, the teachers admitted I had made the right decision. You know your son and his capabilities and have to think of his needs 24 hours, so do as you feel is best for all of you! sue

That's really well put, David. Exactly what I wanted to say if I'd had more time to concentrate and write this (I'm supposed to be marking coursework!). I've received hardly any training in teaching SEN pupils, but yet I'm expected to teach pupils with very complex needs in large classes, sometimes up to 30. Fortunately I do have some SEN experience from working with SEN kids in my spare time and from living with my own children. I do a lot of supply work in the North East, and I'm not sure I agree with behaviour worsening, but students are much more disrespectful, confrontational, know their rights and are prepared to make a stand. When I first started teaching we had equally bad behaviour, but students weren't so cheeky, had more respect and would often say 'fair cop, sorry!' I think the lack of respect is a REAL problem! Sue

It sounds very much like attention seeking/controlling behaviour. I just wondered if there were any sibling support groups near you that your daughter could attend? I attended a drama production by a sibling support group recently and it really hit a raw nerve how we spend so much time with our ASD kids and our lives revolve around them, because we have to and although other children are incredibly good with their ASD sibling, they do lose out on a 'normal' childhood. A support group might help your daughter come to terms with some of her feelings. Sue

Hi Mookamu, We are in a similar situation. My son is six and just got an AS/HFA diagnosis last year. When we were going for all the appointments we told him we were going to find out why he thinks differently and have so far told him his brain is a little different/special to other children, which means that he finds some things hard (insert eg.s here) and some things easier (numbers and reading for us). That's all we've said so far, but we do chat about things occasionally. So far he's not aware that he gets special help, though he does have his own space in the classroom and a LSA. Other children have not worked it out yet, either, but they are incredibly accomodating and tolerant of him. I think you've got to bring it all down to their level and explain it in a very positive way. After, it's not an illness and many very special and gifted people have AS. Sue

I second purplehaze's suggestions. We have to plan clothes/shoe shopping very carefully with a schedule, expectations of behaviour, time limits what will happen, etc, followed by a reward for success (negotiated). It has to be only one shop and for a very limited time. I find if I buy clothes unseen they are never worn. I'm sure it's sensory stuff that's going on (colour, texture/feel, smell). Some shops we can't go into or we have meltdowns, others are OK if they are pre-negotiated. Other than school uniform, we only have a few 'nice' clothes that are acceptable and they were quite expensive, but if they are worn (till they fall apart usually), I don't care. At least they are worn and it's cheaper than having drawers full of stuff he won't even look at. Sue

Bagpuss, I got really worried reading that. It read like the school where I teach. Not the parent bit, but the students cheeking teachers. I wished i could say it was not the norm, but unfortunately with some students it is. I teach in a very good secondary in a major city which has excellent results. Although the majoryity of students are fab, and are really lovely to work with, there are a large number who will cheek the teacher and we basically have no authority! You wouldn't believe some of the behaviour I encounter each day! It's very worrying, but I would imagine it happens in most schools. Sue

That's fantastic news madme! Well done to you, your son and all the teachers! It's so nice to hear of education and SEN working so well. sue

We got a lab when my son was 2. She is the most faithful, patient and tolerant dog. She's my sons best friend and he often comes home from school, lays on the dogs bed with dog and tells her his troubles, hours before he'll talk to us. She's his best playmate and probably the first thing he properly communicated with. He feeds her every day and helps take her for walks and throws her sticks and balls. I can't describe the relationship they have as it's very special. Getting the dog was the best thing we did (and before we realised he was autistic), but it's still a huge responsibility and not something I would recommend for everyone. However if you're ready for the responsibility of a dog, then I'd highly recommend a carefully selected lab. Ours is from a very good working strain, so quite unlike the labs you often see and was sooooo easy to train. Sue

I agree with the other posters. It depends very much on the situation, but mostly I have a thick skin and ignore other people's reactions. However one incidence is very clear in my mind. DS was having the worst of meltdowns outside Waitrose (and it had been brewing some time). The only thing I could so was sit him down on the floor outside the shop and sort of hold him, not speaking (that works for us). I very soon had a crowd gathering around us which was making the situation worse and the people were quite intimiditating and tut-tutting. So, I calmly said "excuse me, but do you mind, my son is autistic and this is not helping!" Everyone turned, very embarassed, apologetic and walked away. It felt so good to be able to say that and totallly diffuse the situation and in their minds I had changed from a terrible, uncaring mother to one who was in control and it was THEY who were embarassed! So, yes, sometimes the label is useful. sue

I didn't realise socks were such a common problem. You wouldn't believe the meltdowns we've had over socks over the last few years! For ds, the socks have to be 'right'. I think for him it's more to do with pattern (or not) -stripes, Bart Simpson, spiderman, plain for school days -but I have to be a mind reader to know which ones sometimes!!!! Solved much of it by buying loads of socks ALL the same (once I knew he would wear them). Now the main problem is that socks have to go on first when getting dressed and they have to be just 'right'. Sometimes this takes ages and we can't get any further until the socks are sorted! I really do think school should be more understanding. It's not as if wearing comfortable footwear is a big issue is it? TBH, I'd rather wear comfortable and I really sympathise with your son, mum2one! Sue