av16

Just found out that they have changed their mind and are going for assessment! I'm really pleased. Thanks for everyone's advice about not giving up. Now I'm worried about the outcome. It seems there's always something more to worry about.

Hi, we flew with my son [now diagnosed AS but not back then] when he was just 2, he screamed the whole way and hid under my seat. The flight crew made a big fuss about him being strapped in his seat for landing but because he was so noisy etc. they left me to it. I asked for a belt so he could be strapped to me and they handed one over without any problem. He soon calmed down - to a round of applause from other passengers. We didn't fly again for another 4 years and I never get embarrassed by his behaviour now! It may be an idea to try and contact the airline before you fly to explain the situation, if you're paying for his seat then I'm sure they would be willing to help. Good luck AV

Thanks for all your support, I'll keep you posted!

I rang the LEA today to check that they had received all the new info we have had since they turned down our aplication for a statutory assessment and they've decided to send our case back to panel on Thursday this week! I hope it's not a delaying tactic but as they didn't request any information back in February maybe now they've got something from 'professionals' they might see sense.

My 8 yr old son dx AS in mainstream has some 1 to 1 support- doesn't like it to be too obvious as he wants to be 'normal'. He's on school action +, has a psp (not a new playstation!] and has been turned down by our LEA for assessment. Has had 2 exclusions before dx, 1 internal since- mainly due to 'Golden time'. School really supportive our LEA (school in another LEA] useless.

I think this is bad, lots of websites give info saying don't take comments from an AS child personally e.g.www.aspergerstips.com. The class teacher needs to deal with this urgently. I printed off some of the info from the website to help people at my school and my son's [ I'm a teacher with an AS child in my class and a son AS aged 8]. The TA sounds completely unsuitable but maybe she was having an off day[still not acceptable tho]. All the best, hope your child is ok. av16

Hello, I wondered if anyone had experience of 'Golden time' at their child's school. My son (8 +AS) has it every Friday or rather I should say he doesn't get it as if you do something wrong you lose 2 minutes out of a possible 20. He goes to pieces after he's lost the first 2 mins and he doesn't seem to realise if he carries on he will lose more and not 'earn' it back. He was very morose when I collected him from school today and whined and moaned for ages then had a screaming fit when it came out about golden time. I would like him to not be included in it at all but then he would really stand out as it is a whole school thing. I can see that it works really well for the other 220 children in the school but not for A who really hates the mention of it. Any ideas anyone? Thanks AV16

Hi, until my son got to Yr 3 he was exactly the same but my Dad died very suddenly and A was very close to him, he also found it more difficult to cope with staying in his seat most of the time and then took a dislike to a student teacher and started to behave in school the way he always has at home. It has got worse unfortunately resulting in a couple of fixed term exclusions. I look back on the 'old' days when he was good at school and wonder how it can have all changed and wonder about the future. Although hard I think if they're good at school it makes it a bit easier to bear the meltdowns etc at home. I'm hoping that I've made you feel a little bit better.

It's been really helpful to read this. We're off to hosp tomorrow for a blood test. We were asked to do this at he diagnosis appt 2 weeks ago and have been putting it off as A (8) is terrified of needles etc. I am going to tell him now rather than tomorrow. Here it goes...

I don't know if this will help you but in my LEA it is possible to borrow an alphasmart from a 'library' of aides/equipment held in a special school in the borough. I've borrowed one for an Dyspraxic /AS child in my class. I know everywhere is different but maybe in your area if there's a special school they might be able to help you. Best wishes & keep smiling!

Hi Rainbow Queen, like you I am new to this, my son (8) was diagnosed AS last week. I am surprised your son has got to SA+ without you meeting the SENCO. I am also a primary school teacher so I can see some of both sides. The senco can be your route to getting more help with your son including behaviour at home. I would ask what he is like in class, what help he is getting, (has he an IEP do you know what's in it?)I would give her as much info about him as you can and then ask her as many questions as you can. Also don't assume she will know alot about AS/ASD but of course she may be very knowlegeable and may be able to provide you with info about local help/groups etc. Does that help at all? I hope so, I wish you all the best! AV

Thanks for this I will get on with it now. AV

Thanks everyone for all your support,had a really good meeting with the Behaviour support team person, senco,Ed psych and class teacher so feeling we are getting somewhere. Still haven't had the letter from the LEA saying why they have refused to proceed with assessment so I can't start the appeal process yet but I'm ready & waiting. Also had a letter of apology from the local MHcare trust about the length of time we had to wait for assessment. They have now changed their system and cut down the waiting list and changed their procedures so cases can't get 'lost'. This is good for the people who are referred now but if it hadn't happened to us then our son probably wouldn't have been excluded as the situations he found himself in would have been avoided by the school if they had known about AS. (sorry that's a bit of a rant) AV

Hi Sallya, I hope to spend longer looking at all this info, had a good meeting with behaviour support team today ready for tomorrow's meeting. As an aside the child in my class also diagnosed AS today. I'm really going to have to read up on all of this. I'm still waiting for the letter from the LEA so can't start planning the appeal yet. Thanks for help & support, Best wishes AV

Thanks for your advice, I will ask the school to get on to the LEA, today Alex was diagnosed with Asperger's and the psychiatrist is also sending them a copy of her report. I hope they change their minds... we'll see.

Yes, he always has damp hair when asleep and as he has spent so much time in our bed I know it makes me feel uncomfortable so I don't know how he copes. He never likes to wear too many clothes and never has anything on his feet at home and doesn't seem to feel the cold other than when he gets up in the morning. Me and his sisters are always cold & he can't understand it.

My son (8) is always really hot and sweaty- really sweaty and always has been, I can't say I've noticed his ears being red but I'll look out for them now. At school they noticed how hot he gets and when they see he's starting to lose it they send him out to get an ice pack and quite often it calms him down..

I'm a primary school teacher (4th yr) previously 17 yrs in local authority in information & statistics. Did the PGCE because I recognised that no one would look after son in the school holidays so started training as he went into reception. Now have a child in my class who behaves in a very similar way to my son- I recognised his probs straight away- got to Yr3 with everyone thinking he was naughty. It's hard and sometimes I feel I'm failing both but I keep trying!

[Has your child been seen or assessed by ED Psy or specialist support services. If not ask them to refere your child to these services. The more amunition the better for your child. Jen Thanks for your reply- we met the Ed psych last week, he said A was displaying typical AS/ASD behaviour, isolating himself from rest of class and being very controlling. He was very helpful and the school asked him to provide some info before the case went to the SA panel. The LEA behaviour team are also involved, meeting about a PSP on Friday this week. I hope you succeed with your appeal though why we all have to go through so many hoops I don't know.

Thanks for your advice- I think we will appeal, although he's only 8 I'm worried about secondary school- he just would not be able to cope at the moment so we need to get him all the help we can.

Hi, I don't know what effect this will have on my son but today I've found out the LEA have refused to proceed with a statutory assessment despite the school also pressing for it and the fact that he has already had 2 fixed term exclusions for violence against his teacher and another child. The school have been really supportive by trying to provide a full time LSA, giving him structured supervised play each lunchtime but other parent's are starting to get upset by the disruption he causes and I feel stressed the whole time in case I get another call from the school. We are due to see the Paed. on Weds to get the results of assessment. Do any of you think there will be a big impact because he doesn't have a statement?

Hi, this may sound a bit odd but do any of you have problems with your teeth? I have 4 molars that have literally fallen apart because of the effort of keeping calm- I grit my teeth. I am so glad to have found this forum, as I read the posts I keep thinking that could be my son (or me dealing with him). This is a busy week for us, a visit to the paediatrician on Weds to hopefully get a long awaited diagnosis and on Friday at school to meet various people to set up a pastoral support plan. Any info on that if anyone has any would be good. Thanks to you all for being there.

Hi, I'm new to all of this. My 8 yr old son has been excluded from school twice (just a couple of days), we are going back to the paediatrician/psychiatrist next weds. for the results of assessment. His case also goes to panel tomorrow for statutory assessment. He displays classic ASD behaviour and I believe has since birth. Staying calm is something I aspire to, I try to remain calm and explain but as previous replies say we're all human. I'm also a teacher and have a child in my class who also displays classic ASD behaviours and is at the same stage as my son (but without the exclusions) so I feel like I never get a break from thinking if I say this what's the reaction going to be! Sorry for going on a bit but I can see I'm going to be using this forum alot.

My son aged 8 and not yet diagnosed is on his second exclusion in 2 weeks. This time for lashing out at a girl who was swearing at him in school. He insists he was justified in doing this because it's wrong to swear. He cannot understand that it's equally as bad to kick people. The school admit they don't know how to help him & nor do I. I am convinced he has AS, today I have been on the phone to the Health authority, parent's advice etc and our MP. So far no one has offered any help or got back to me. I'm a teacher myself and I can't imagine how I would cope if I didn't know anything about the stupid systems there are. I'm really angry!