BusyLizzie100

My AS son likes to collect trading card games, the latest is the football cards (even though he doesn't play football!). He told me about the footie ones ages ago and when he was ill last week I went to get some for him - got the last pack in the shop cos they're selling out so fast. I said to son: 'You found out about this ages ago, didn't you? You've really got your ear to the ground.' Of course he replied: 'But it isn't stuck to the floor and I'm not lying on the floor.' Let myself in for that one, didn't I!

My son (aged 6, ASD) often does lots of the above. If he finds something funny (like a sneeze, or some slapstick on a video, or just a particular word) others often don't find it funny but it can keep him laughing for ages. He'll think about it often afterwards (he tells us) and laugh again, as loud and as long. At night he sometimes giggles away to himself - really eerie when the rest of the house is asleep and you're woken up by manic giggling. I sometimes think it's his way of dealing with stress - it's like the old saying, you either laugh or cry and he can't work out which one's right, but he obviously gets some release from it and goes back to sleep. By the way, he hates crying, I think because the feelings involved are just too raw, too much for him, and it gets him unwanted attention. I do love it when he laughs, because his giggle is so infectious. He often starts me off! Lizzie

Hi folks, How do people feel about having homework as a target in an IEP, ie getting a child to do homework and hand it in (Independence and Routine)? I know I mentioned it in an earlier thread but wanted to separate it out to get people's reactions. As you know, I'm having a bit of trouble with my son's IEP at the mo - he's 8, in Year 3 and has Asperger's syndrome; no Statement. The other targets include social interactions, eg 'I will feel happy at playtimes'; and handwriting, eg 'I will be happy to write'. Along with the three priority areas, self-esteem is 'still a priority running through all of these targets' but no strategies to support that. I fully appreciate that everyone's child is different, and I don't expect you guys to write my son's IEP for me (!!!), but if anyone of you clever bods have an opinion, particularly over the homework thing, I'd love to hear it. Thanks again, Lizzie

Surely they are not relying on just the ADOS as to whether or not your child has an ASD? My son's ADOS was borderline but, on the basis of the parental interview, an art therapy session and a school visit they confirmed a diagnosis of AS. Yes, his anxiety etc may be due to other things but if they're going to rule something out, they should absolutely rule it out properly. Good luck

My advice is to go with your instincts, get as much as evidence to them in the first instance as you possibly can. It won't hurt and it can only help your cause. And if you are successful in getting a Stat Assess, then send it in all over again as they probably won't refer back to it. Best of luck.

Thanks for all your support, folks - it really helps. Sobbing over wine now but still coherent, I hope! The only reason the head didn't collar me at school was because my son's been off all week. She said she'd been looking out for me. Good job I wasn't there, I'd probably have hit her! Well, OK, not really, but it would have been a horrible situation. Just to clarify and because I'm a fair person, the head didn't lose her temper on the phone (far too icey for that) but she was very upset with the letter; the teacher was so upset when she read it first thing that she couldn't teach the class (what???!!!???). The head said she'd put a lot of work into the IEP and into supporting my son generally and she was very upset. By the way, I didn't lose my temper either, but I was livid. I can express myself quite well under pressure (as I did in the letter - I write for a living). Additionally, the IEP was the result of a meeting the week before between the head, the teacher, the SENCO (who is not a full-time member of staff - a teaching assistant, actually), my husband and I. We discussed targets, albeit in a general way, and we were looking forward to the result because everyone seemed quite switched on for a change. I was absolutely gobsmacked when the IEP came home! I really value this teacher; she did a good job with my other son, who is Statemented, in his Reception year, although come to think of it that's probably because she had input from outside bodies to help her with the IEP. Am I right to feel that Homework is not an issue for an IEP? They may be trying to encourage his independence, but shouldn't that be up to Mum and Dad at home? Perhaps they could write an IEP for me, if I'm not reaching their targets. I'm genuinely sorry if I upset the teacher, who I like very much (and haven't seen yet this week), but it was certainly not my intention and I was just trying to help, both the school and my son! PRIMARILY my son, who seems to have been forgotten in the head's kerblubble. As far as school is concerned, my AS son is all right really and should just get on with it, never mind the fact that his stress and anxiety are escalating all the time. What will it take for them to realise???!!!! I really thought we were genuinely working together (that's definitely how I worded my letter) and now it's clear that they just don't get it. By the way, wish I'd used the bit about my son standing on the table to rise above his classmates' comments - that's exactly how he would have interpreted it!!!!!!!! Thanks again, all. Lizzie

Aaaaaaaaaaagh! The head teacher has just had a right old go at me, accusing me of upsetting her teachers!!! What kicked it off was my son's latest IEP. (He's in Y3, with AS) After a discussion at school things seemed to moving positively; son has a good teacher so we were hopeful. IEP came home on Friday - very disappointing. The strategy for 'rising above the other pupils' comments' is: to rise above the other pupils' comments. And the rest was pretty much the same. Solve the lack of social skills by putting a Friendship Bench in the playground. Great, so how will my son use it, exactly? They even described his Asperger's as mild. Don't know where they got that from! So, after initial devastation and despair, I put pen to paper, wrote a long letter to teacher asking her to look again, carefully explaining what AS means for my son. I even said I wasn't criticising her but wanted to help and I appreciated everything she was doing. Husband read it and agreed that it was a good letter and not bolshy at all. So what right has the head to ring me up and tell me off? Isn't the most important thing what they're doing for my son? Sorry if I unintentionally upset anyone, but I get pretty upset EVERY DAY with ASD kids to care for and a three-year-old who would try the patience of a saint..... Sorry, going into one again. Where's the wine - is it too early?!

Don't know if it's any help, but my NT son had his (huge) tonsils out when he was two and a half - they were so huge they were touching and there was concern over his sleep apnoea, too. Adenoids came out as well. In fact when he was about 8 months he had to be rushed to hospital with a breathing problem - the docs never really figured out what it was - no evidence of chest infection etc but they gave him antibiotics anyway and he got better quickly. I reckon he probably had a throat infection but at that age it just closed up his windpipe. Anyway, the good news is that the surgery had an instant impact and he's much improved in many ways and now 3 and a quarter. My eldest (AS) son has also had his out, and my middle (ASD) son, aged six, is due an operation imminently. His is the one I feel most nervous about, apart from the fact he has a hole in his heart as well. Still, it did the others so much good that I think it's the best thing for him. He's just missed two days of school this week with a bad throat and it just throws him totally - particularly going back to school and trying to work out what's going on because the rest of his class has moved on.

There is a very useful paper on the OASIS website specifically for grandparents. Sorry, can't do the link thing but the address is: Click here! Choose under the section Family Matters and the paper for grandparents is top of the list. It comes from the Asperger point of view, but you may find it useful. Perhaps someone more switched on than me can make the link come to life!! From our point of view, one set of grandparents found it enlightening and the other acts like nothing happened. Ah well.

Thanks everyone for your replies. Bid and Kathryn, that's really useful advice; and MotherEve, thanks a million for the PM. Now I've just got to find the time to get it all down on paper! I can see a bit of midnight-oil-burning coming on - that's if the kids will leave me alone to get on with it! Any further advice warmly welcome, Lizzie

My son's difficulties have definitely become obvious since starting Year 3 (Juniors). He's much more stressed out and his anxiety levels have peaked. We are in a bit of Statement-or-not situation also, but I think it's just a matter of time, ie if not now then later. Sorry to hear you're feeling down, Lil Me. It does feel like a constant battle, doesn't it. But at least you are there, battling for your son. Keep up the good work and hang in there. Lizzie

My kids (both on the spectrum) find Golden Time really stressful - all that free play and potential for social skills nightmares! Is that really a treat?????????????!!!!!!!!!!!!!!!!!!

Can anyone help me? Every time I sit down to put together the parental contribution for a Statutory Assessment, I just don't know where to start and invariably just give up! I just can't figure out which is the best route into my son's difficulties. Briefly: he's eight, has AS, very high verbal IQ but very low spatial IQ. That means he gets very frustrated because he's Gifted but can't get his ideas down on paper - writing is illegible. He is doing well academically but not fulfulling his potential - the dyspraxia side of things cancels out his brilliance so that he does well enough - not very fair to him, though. Has usual problems with social skills, apparently fantastic language but literal and just doesn't 'get' what's going on. He has very high anxiety levels and panics easily with subsequent meltdowns and/or hysteria (like a child possessed, sometimes). He operates on Red Alert all the time, so is exhausted from the constant stress of it all. Makes huge efforts to fit in at school but it's really taking it's toll. A private psychologist's report says he definitely needs a Statement. The NHS report says he's doing fine and its recommendations are a bit sketchy (eg keep an eye on him in the playground; enrol him in Beavers - I ask you!) I've finally decided that a stat assessment is necessary, even to clarify why there's so much discrepancy between the two reports, but I just can't figure out how to start or what my major argument should be! Help! My younger son (aged six; ASD) already has a Statement, but his situation was a little more clearcut, whereas the elder son's difficulties are more subtle, or at least, harder to see. Any advice much appreciated! Lizzie

This is a topic very close to my heart and I read SLT's posts with interest. My son is in Y1 and has SALT written into his Statement. I had a phone conversation with the therapist last week who intimated that his need for SALT is getting less - omg his Review is two months away and I can't help she's preparing me for taking SALT out of the Statement! This strikes fear into my heart, because although the recent standardised tests he sat show that he is 'age-appropriate', he still has huge difficulties in putting his speech and language into practice. The tests just don't take ASDs into account, as mentioned earlier. So, on the basis of tests that are not appropriate for my son, he may well have vital SALT input taken away from him! We NEED ASD-appropriate tests!!!!

My son has a home-school link book that works well. It's not like a diary, but I frequently write stuff in it like 'F had a bad night and is really tired' or 'F has an OT appt on Fri' or 'F has done lots of colouring-in this weekend'; most days school writes something also, usually his LSA but sometimes the teacher. It's often just a paragraph like 'F was reluctant to write today but did some good work.' School are very good about emphasising the positive and I try to do the same, although I think it's important to get a balance and that they know the negatives as well. By the way, my son's in Year 1 which probably makes a big difference. Having a different teacher for each lesson may be more difficult, but surely not impossible? Just a sentence can sometimes make all the difference.

Hi, does anyone know where I might find some kind of guidance on writing an introduction to my kids and to their areas of difficulties (ASD and AS)? I'm enrolling the boys in clubs and activities and need a simple format to explain to people without overwhelming them - I'm liable to ramble on and on and write a whole essay, when what's probably best is a short, well-phrased couple of paragraphs that I can adapt to fit them both individually. Any info or links much appreciated!

Hi, I'm really interested in this topic as my son (eight) sounds so similar. What help can schools offer in these situations? Sorry to be brief - have a train to catch!

Hi, we're in St Albans which is just up the road from Hemel. I though a plane had crashed, or a building in town had collapsed/exploded. The whole house shook, bed, windows, everything. It was really weird lying in bed not knowing what to do! I waited for the sound of sirens, but just heard loads of alarms going off everywhere. Neighbours up the street whose windows face the other way said they could see the flames leaping into the sky. The plume of smoke has been over us all day, blocking out the sun. Totally weird and oppressive, although the sun has tried to get through occasionally. My eldest (eight, AS) wandered into our room shortly after the blast, but didn't know what had woke him. The others (six, ASD; and three) both slept through - amazing! I believe most of Herts schools are shut tomorrow. Check www.musicradio.com for info on local schools. My kids are delighted - so's my husband, he's in charge of them tomorrow!

Thanks for your replies. I find I keep changing my mind as to what to do! Mother In Need: Sorry to hear about your situation. This is the sort of thing that worries me. Suze: No, he has not been seen by an ed psyche. He did well in his SATs, as did the whole class, as does the whole school. (I have to say I find that rather suspicious!) The thing is, he is 'keeping up' with his peer group because of his high intelligence. The private psyche did cognitive testing that showed he has a verbal IQ of 137 and a spatial IQ of 87. His reading is very good. He has had OT input since he was four, but most recently it seemed to be causing more stress than good and we've laid off for a while. I think he's on School Action Plus, as he has been seen by the Autism Advisory Teachers a year ago, although they weren't much help. School Senco??!!!! Yes, there is one at the school. The first (and last) time I met her was at my other son's Annual Statement Review in March. Enough said. Jools: We've done Write From The Start throught the OT, but to no effect. Motivation is a key issue: he hates doing it or any other kind of 'work', including homework, at home. Major meltdowns. He has found it slightly easier to write joined up, as he doesn't have to keep lifting his pen, but it's still pretty illegible, unless he tries REALLY hard and then, of course, he doesn't have the stamina to do much. Basically he's doing OK at school with his work, but the cracks have really started to show this year, along with the social thing, which trips him up more and more. But for a child this bright, I feel he's dumbing down the whole time. It seems so unfair for him. Is a Statement the only way to accommodate his way of learning? Sorrry for the added rant. But it helps to know that someone out there cares! Lizzie

My son's AS has now been confirmed by two diagnosticians. The private one says he needs a Statement, the NHS team say he's managing all right at school. Aaaaaaaaaaaaaaaaaaaaagh! So, does he need a Statement or not???????????/ The background, in brief: He 's in Year 3, just turned eight, very bright, with dypraxic difficulties which mean he finds writing very difficult (it's barely legible) and has the usual difficulties with social skills, although it's hidden well(?). So, although he's managing OK at school, he is nowhere near achieving his potential and he's getting more and more frustrated with his physical difficulties. And his anxiety levels are off the scale. He seems to operate at Red Alert 95% of the time, at home and at school. I think the private psyche is thinking stop the rot now before the system fails him totally, ie the earlier he is supported, the better. The NHS lot say he has a good teacher and he's managing. His teacher is great, but what happens next year and the year after, if the teacher's not great? Am I stressing too much about this? Should I wait a bit longer and see what happens? If so, how long? How much should I be pushing the school (at the moment he has an IEP but no additional support)? Could a Statement giving him, say, just one extra hour support a day be beneficial? (His school is quite inexperienced when it comes to SEN, although they seem prepared to learn. I just wish it wasn't my son they were learning on!) Sorry, lots of questions , but any answers or thoughts, opinions or similar situations etc very welcome! Thanks guys

Now I have a confirmed diagnosis of Asperger's for my son (eight), one hot off the press today. One comes from a private psychologist back in March, saying he needs a Statement - he's highly intelligent (gifted) but barely able to write legibly. The second comes from the NHS team, who say he's coping OK at school. My son's anxiety levels are practically crippling him. All I want to do is support him, but with such conflicting reports I don't know what to do. How can they be so different? It seems so unfair to my son.

Yes, I'm on anti-depressants, my husband's on anti-depressants... do they help? Well, maybe we just need higher doses! Hate to think what I'd be without them, though...

Thanks for that - what do they do and why haven't I heard of them before? Two of my three sons have ASDs, one of which Asperger's. Are they just not around everywhere? Should I find out about them?

Keep seeing the word Camhs in various posts about seeking diagnosis, but what does it stand for? Am I missing something here or am I just thick?!

The suspense is killing me! The three weeks is nearly up so it should come any day now but I'm just desperate to know what they've decided! I'm going crazy. And then I've got to deal with what the letter actually says... Aaaaaaaaaaaaaaaagh