krystaltps

Ohhhh, this is a tricky one. I am a parent of a child with AS first and foremost, then I am a teacher of children with complex needs (including autistic children). I like to think I am good at being both a parent and a SEN teacher. I can totally see where Mumble is coming from - as the title of the post immediately caught my attention and "got my back up". I feel very strongly about general "teacher-bashing" too, Mumble. However, I do agree with Andrea on some accounts, as I lived through a year with my son when he had an absolutely appalling teacher... when I felt very angry - I still struggle to even speak to her when I meet her at in-service days, etc. But I think Karen makes a very valid point in that Andrea hasn't been posting long, and I'm sure no offence was meant to the "good guys" in our profession. I'm also sure I probably made some unintentional generalisations when I started posting - I very nearly did it last week in reference to hospital office staff... then edited my post to correct my generalisation.

I posted about this about a year ago, after I'd been to see a Tony Attwood talk. C was born with a normal-sized head, but by 8wks, he was referred to a paed to investigate his abnormally large head circumference. By 4 months, his measurements were off the scale and he had developed a marked head-lag due to being unable to hold up his head as a result of the sheer size and weight of it. By 2yrs, his head circumference was bigger than mine. He also still has a very noticeable ridge down the centre. R had to come out the "emergency exit" as his head was too big to come out the usual route at birth. His head circumference has always been slightly smaller than C's, but he also has plagiocephaly (flat at the back on the right-hand side). Although R isn't dx as being on the spectrum, as he gets older, his AS traits are becoming much more apparent (as he spends less time with his totally NT twin sister, who has always been his role-model for social behaviour). Interestingly, R's EEG (he has epilepsy) showed abnormal activity focalised in the right parietal lobe (where his head is flat). His MRI also showed structural abnormalities of the right frontal lobe (which ties in with Flora's post). Also, we have noticed that after a bad night of seizures, R's behaviour is distinctly more ASD-ish, and he has long episodes of echolalia and palalalia the following day. I have no doubt, with regard to my two boys, that head size, shape, and brain structure are all related to AS and ASD traits.

I agree with Karen - if you had not explained your concerns and J did not lie still for the duration of the scan, they would be even more annoyed. Being annoyed is what some hospital office staff do best, anyway (in my experience)... so don't worry. R had an MRI when he was 5 yrs, and because of his age a general anaesthetic was arranged, and as we stay on an island, they had booked him into the ward to stay overnight. We were very lucky in that there was a cancellation for after R's slot, so they thought they'd try him first without GA as they had plenty of time incase it failed and they needed to use GA afterall. Amazingly, he fell asleep - he'd been starved in preparation for GA, and we'd gotten the earliest ferry off the island - 6.30am... no wonder he was so exausted really. So he lay like a little mouse for the full 50 mins (his was a brain scan). I doubt you and J will get so lucky (the staff were amazed when they came back into the room afterwards to find R asleep, apparently it's unheard of!), but they can give older children mild sedatives instead of GA - perhaps you could ask about that.

This is a useful topic for me at the moment - were taking our lot to Florida in July and C has never flown before. He's obsessed with Pokemon games on his DS, and he'll be taking his PSP too. So, the combination of these two should help keep him amused.... but I'm worried his anxiety levels will hit the roof. He's already stressing about flying, especially for such a long time and over so much ocean. He's into statistics and is reeling off airline disaster stats (much to the upset of the twinkles). According to his psych, it's all he's talking about during their sessions. I'm seriously thinking about asking for a mild sedative or something for the flight... has anyone else ever been prescribed something for while they are flying?

YES!!! It was as if he just didn't have the patience... he seemed to know what it was all about, and fussed to get latched on, but wanted it to happen instantly. He would end up screaming and going rigid... and I would end up feeling such a failure. I tried to explain to the midwife that it wasn't working, but she said to just keep trying - even though she had spent hours trying to latch him on for me... By the end of the second week, he'd lost 25% of his birth weight, and we admitted defeat. I expressed for as long as I could, then moved him onto formula. I blamed myself because he was my first. The experience was so awful that I didn't even attempt it with my twinkles. Interesting thread, this one.... I hadn't even thought it may have been related to his AS. Funny though, he was a nightmare to feed once he was weaned: when he wasn't insisting on doing it for himself and ending up feeding his eye and blaming me, DH was having to perform a cabaret act behind me to distract him from the evil task of eating... And all meals had to start with pureed carrot or he wasn't eating anything at all. Then he gave up milk entirely at 7 months but refused to drink water or juice.... I ended up feeding him watery fruit purees for fluid and custard for calcium. Looking back, it's amazing he grew at all, lol.

Hi, we split the capsules open too. It's not that C can't or wont swallow them, it's that he's too impatient to wait an hour before they work. He gets two capsules (4mg) dissolved into fruit juice each school night and he's asleep 10-30 minutes later (depending on how active his mind is and how relaxed he is after taking them). When he first started, one capsule was sufficient - so I think it probably had such a fast effect on your DS because he's never had melatonin before, so his system is more sensitive to it - apparently size and body weight isn't much of a factor. Word of warning - try to give him one or two nights a week without the melatonin, as his body will get used to it and he'll need bigger doses. It's amazing how quickly this can happen. We take C off them entirely during school holidays, and over the course of a school term he goes from 1, to 2 capsules and then right near the end of the term he's needing 3 - and that's with weekend breaks.

Oh, I like this thread - this is C's speciality. He has been playing with words since he was 3 years old. All of his words are fantastic, and have become regular parts of family vocabulary. Spotten - applied to the twinkles, meaning spoiled rotten Bumpop - flatulence Pokeynut - an insult, as in "You are a Pokeynut" Underbelly - one's bottom Construnctions - the bit in the box of chocolates that tells you what flavour they all are He also uses old-fashioned words such as pataloons (meaning his underpants). There are loads more, I just can't remember them all at the moment.

I remember looking into this a couple of years back when I posted looking for advice about getting a dog as a companion for C. The system seems to be really big in the USA. I would recommend a lab as a companion. I have a beagle and a shih-tzu (the latter is my DD's), the beagle having been bought for C as his new friend. It didn't work. Despite the fact that beagles in general are supposed to be very good with children, Buttons is petrified of C because of C's flapping and noise. He starts shivering and growling when C goes near him, and as a result C hates him. BUT... my sis's labs - well, they're a totally different story. They love him, particularly the younger one, they seek him out when my sis brings them round to visit, they simply move calmly out of his way when he's having an outburst. The older one even let us know one night when R was about to start having a seizure: she cried to get out of the room, went upstairs and sat at the foot of his bed... two minutes later, R's seizure began. They really are amazing dogs. I agree with Sue - my sis's labs are from a working strain... they are so much more placid, confident, and easier to train than labs bred for showing.

Hi all, not been around much lately, have been busy, but thought I'd pop in and ask a question. I was speaking to C's teacher today (he'd had a meltdown during golden-time and she was filling me in on the facts), and she said a really interesting thing about C's eye-contact. He stares at you intently when you are talking to him - it's so intense, it can make you want to look away. This is so true, although I had never really put it into words before, because you are always asked about lack of eye-contact, and I always reply "Oh, C's fine in that respect". But I had never thought about it from the opposite perspective. Does anyone else find this with their ASD kids?

C isn't touchy-feely (quite the opposite in fact), but he is very outgoing. He is usually (depending on mood) one of the first to approach new people, but he can do so inappropriately, comes across as too intent and unwittingly scares people away. If he decides he really likes you and wants you as a friend, then we have "stalker syndrome" to deal with. He blew his first proper friendship in this way last year and we're hoping he has learned from that. It's a bit of a thought... what will he be like in this respect when he's a teenager and decides he likes a girl . I suppose - why can't you have ASD people who are introverts and are extroverts just like everyone else... I think that's all it boils down to, really.

Hi, can I ask which Local Authority you live in, Sesley? In Scotland, we don't have a National Curriculum - that's one of the beauties of Scottish Education - however it does trust that LA's, schools and teachers "know what they're doing". A good LA will provide access to training for the staff who work with your son, and it should also provide access to experienced and trained educational specialists. In my LA we have Area Network Support Teams (of which I am a teaching member) and each member of the team has a specialist area (i.e. the additional support need in which they specialise). If we come across something new, there is a large CPD (training) budget to cover the cost of training courses. Does your lad have a Support Plan or Co-ordinated Support Plan? It sounds as if he should at the very least have a SP. Is the class-teacher in charge of the SP? All of this is not specific to my LA, other LAs in Scotland will have similar provision. The Additional Support for Learning Act (Scotland) has given you, as a parent, rights... and there are tribunals happening all over Scotland at the moment as parents are exercising these rights. Because where I live is geographically large and mostly rural, we have children in our schools that would be in specialist schools if they lived elsewhere. These children are accomodated in mainstream (with the exception of "my boys", who are not in classes) and their needs are met. That's the important part - the needs being met. If they are not then you have cause for complaint... no matter how hard the teachers are trying, it's the LA that's letting you down by the sound of it. If you need any advice on the ASfL act, or anything else then please PM me.

hall (as in at school)

Happy Anniversary, Clare! It is a great place to be, isn't it?

With C, if it's sensory overload - total peace and quiet, no interuptions until he emerges. If it's general stress and hassle, I like to go for a drive - just me, Graham (that's my car... don't laugh, all my cars have had names) and music... but only when DH is home from the rig (otherwise I'd have to take the kids with me and that would defeat the purpose). Alternatively - Sudoku... relaxes me so much I fall asleep.

Then there's the loo roll issue! Which way to hang it - one way is seen as correct but I can't remember which one. Personally I like to hang it so the hanging-down bit is nearer the wall... actually it's a bit of a bug-bear with me as I usually "fix" my mum's when I'm round visiting.

This is a huge issue with C as well. We tried doing it when he was asleep, but he woke up and totally freaked out, resulting in a massive meltdown. With him, the pain comes from the little bit of skin that the nail used to cover - any form of contact for a few hours after cutting seems to be particularly painful. So we resort to plasters to protect this. We do it before a bath or shower, so that we can soak the plasters off afterwards. We aim for one nail a week to lessen the trauma... but it doesn't always work this way. Bribery for the haircut - one haircut = a trip to the swimming pool. He actually prefers the nail clippers as they're smaller and seem less dangerous to him - he won't even let the hairdresser use scissors and his hair has to be cut using the clippers alone.

HAPPY BIRTHDAY!

angel

I do lots of cooking as part of life skills at school. Really simple recipes, most of them healthy. I'm making up a recipe book based around Letterland... this week it's the letter "n" and therefore "Naughty Nick's Nutty Nibbles" (the joys of alliteration). I'd be happy to forward the recipes I've compiled so far... once you get past the silly names they're great recipes. PM me if you'd like them.

chocolate (ahh, it always ends up back at chocolate... the Swiss stuff is gorgeous)

Please don't beat yourself up about this... I once threw jelly at C!!! - he was only about 3, and we'd had a day (and a night) of it, hubby was offshore and the twinkles had had almost no attention all day. I felt awful afterwards... but C just laughed, thinking it was a great game. I know how frustrating it is when they fuss over food - C has put us through the mill in that respect. But, like Bluefish said, at least he's willing to eat a mandarin - C never has. As for the kitchen thing - that sounds so like C when he was younger. If he likes lining things up give him some kitchen things to line up. C loved tins. He'd follow me into the kitchen and get all the tins out of the cupboard... and voila - hours of fun! Remember to write on the lids with permanent marker what the contents are, though - hours of rolling along the floor and lining up along the skirting board means the labels tend to come off.

Hi, I posted with pretty much the same question not long before Christmas - here's a link to the thread and the subsequent replies... (hope it works): http://www.asd-forum.org.uk/forum/index.php?showtopic=15436

Oh Hev <'> for you and your lovely boy.

C can do anger-vomiting. It's partly "deliberate" (although he does not put his fingers down his throat) in that he knows it's coming and enjoys the "release" it gives him. He used to do it at school if he didn't get his own way or if he was restrained. With C, I think it serves as a way of getting everything to stop - and it sure does get peoples' attention! Try to find out if anything out of the ordinary happened today at school... if your lad is trying to get out of something or if he feels that he's been unfairly disciplined.

I suppose it is slightly different with NTs, but the "odd feeling" is still the same. R and E do get a fair bit more independence than C, which is hard for C as he is the older one. Also, with NTs each one of them is different - I would trust R with anything and frequently send him on errands, whereas E is a bit of a "space cadet from the pink planet fairy" and usually has to have R accompany her incase she gets lost/forgets to come home, etc. With C, the worry is greater - as it's not just the cars, etc to be concerned about. Well done BD - one small step towards independence achieved