cattubb

Hi Pebbs, You should be able to organise exit passes so you don't have to queue which would take a lot of stress out of your trip. We haven't done that at Disneyland yet but did it recently at Legoland and it was brilliant. I believe you can do it at Disney too. I would e-mail them to see how you go about getting them. Have a good trip Cat

Hi Durhamlass My son is 5 and was dxd AS Nov '08. I feel guillty about everything: did i not play with him enough when he was younger, did i let him watch too much tv, did i not cuddle him enough, did i not send him to enough 'clubs', did i not do enough arts and crafts with him.....for gods sake, the list is endless!!! Someone told me that guilt is a wasted emotion and i couldn't agree more, its just putting that into practice that is difficult. Then I question the diagnosis. Last week i was at home with DS and DD(2) for the whole week as he was off school and its physically impossible for me to take them both out by myself. Obviously DS was in his element - no going out, tv/ps3 for a week solid and was therefore quite relaxed (only 3 meltdowns all week!) so i start questioning things...maybe he hasn't got AS, maybe they got it wrong, maybe I made it all up.... aarrrgggggghhhhh! why do we all insist on torturing ourselves??? Anyway, rant over....you are not alone! Cat xxxxx

Definately a good idea to go before the summer hols, it was quite busy yesterday but not packed. If you buy your tickets online you'll save a few pounds and make sure you take relevant paperwork showing diagnosis (they told me to bring a blue badge(?) but we're from Jersey so we don't have them). Have a good time!!! Cat

Just wanted to share this. We are in UK on hols/visiting family. We went to Legoland today and, oh my god, it was the first successful family day out we've ever had. We got exit passes as it would have been meltdown hell if C had had to queue. It really made the day we didn't have one incident all day which is amazing and above all I wanted C to enjoy it as Lego is his 'thing'. Little one was happy as larry too and spent most of the day in Duplo World (me and hubby took one child each and went in diff directions which is the norm as C cannot tolerate his little sis). Anyway just wanted to say if any of you haven't been and are thinking about it, I would def recommend it. The staff were helpful and friendly, the rides were excellent and our children were kept busy and happy all day. Cat p.s. I know it can be a bit pricey but we saved quite a bit because one of us got in free as we are classed as a carer, kids under 3 go free and we took a picnic!

Well the sun is shining and its gorgeous here so i'd say it would def be a good place for a holiday!! Thanks for your ideas Esther, i sent an e-mail to our local NAS last night to see what they thought and see if they had any ideas also. I'm really keen on setting up a support group having thought about it loads over the last couple of days, my only reservation is are there enough families in our situation on the Island to warrent setting one up. I'm sure there must be after all there is a population of approx 85000 here!! Thanks again for your replies! Cat xx

....i had forgotton 'til i read your thread, when we went to see a pead. last year he measured C's head and didn't really say why but then went on to say that C almost definately had AS (he has since been diagnosed) although I assume that was mostly down to the history of his behaviour. I remember at the time wondering why he had meausred his head but didn't think to ask! Cat

Hi Kathryn, Thanks for that, should of thought of that myself! Fingers crossed xx

Hi everyone, I desperately wanting to meet up with some other families in the same situation as us but have so far been unsuccessful. I live in Jersey and as far as I can see there are only coffee mornings run by the local branch of the NAS (who, I must say are brilliant support) however they have recently been cancelled because there is some changes going on at the premises where they are usually held (????). Has anyone got any suggestions? Anyone else on here from Jersey? I think it would be excellent for my family and others like us to have a support group of some sort but i don't know where to start! I personally feel totally isolated at the moment. My son is in a mainstream school and although all the mums are really friendly and always inviting us out etc. Its just impossible for me with my 2 (DS,5, AS and DD,2,NT) DS and DD are both 'runners'. I have never met another family with ASD children or, indeed, another child on the spectrum. I have asked several people in the position to do so to put me in touch, but nothings ever come about. The result - its the easter hols, its sunny and we're stuck in the house for 2 weeks while everyone else is at the park/beach/zoo with their NT kids (ooops sorry went off on a bit of a moany/sulky/feel sorry for myself tangent there) Anyway, as I said, time to do something positive myself but I have no idea where to start. Any suggestions would be massively appreciated!! Thanks Cat

Hi Karen, i think it is so important that we sort out his support at school as soon as possible as i can see the bridge widening between him and his class mates as each day passes and thats got to be stressful for him (He does tell me more or less every day that he hates school and has no friends ). We do already have a record of need in place which is good, i'm not sure if things are done the same here (we're in the Channel Islands) but from what i understand a record of need will allow him access to any support the CAMHS team decide he needs. And you're right, theres been some great advice, thanks everyone. Cat

Hi everyone, thanks for your replies and sorry i've only just managed to answer, we lost our internet connection yesterday. I am beginning to recognise when Charlie has a meltdown because of sensory overload and the behaviour is different to when he is in a rage. For example we went to a friends house yesterday and he went crazy (as he does whenever there are too many people around). He will shreik, headbang, run around in a frenzy basically, however he does not lash out in these situations (unless i try and hold him to calm him down. He cannot tolerate being held or cuddled). When he behaves like this we usually let him burn himself out (luckily we have very understanding and patient friends) His rages are occuring literally whenever i ask him to do something he doesn't want to do, or rather to stop doing something i.e. he is a computer manic and if i ask him to come off it for whatever reason i.e. his dinner, to go out etc, he goes crazy. He is so single minded that everything just has to be his way and thats all there is to it. The worrying thing is he just shows no remorse, in fact he won't even admit hes done anything. Theres certainly no point me trying to reason with him at the time because hes just not 'with it' if you know what i mean. Our situation at the moment is that I have a befriender once every fortnight and thats all the help i have at home. He is in mainstream school at the moment but the school have expressed a concern that he might need to go to one of the 2 schools here with units for children with social and communication disorders. He has no specific support at school but the classroom assistant (hes in reception) is spending the majority of her time with him. The ed phsycologist is going into see him on Wednesday to see how hes doing because she feels that when she last saw him at school he was fine. Which begs the question why do the school think he needs to move?? Cattubb

Hi all, just wanted a bit of advice and i guess a lot of you have experience in this area! My son (5 AS) hasn't been too good all week i.e. very distant, no cooperation, no conversation, up late at night the usual stuff but more pronounced. Anyway, recently his violent outbursts seem to be getting more frequent again but only ever towards me and his sister (3). Yesterday was the worst one for ages, probably because hes also getting stronger as he gets older. Anyway yesterday he flipped out totally and attacked me and his sister and as a result i now have a black eye and my arms and legs are covered in bruises (luckily my daughter got away with it as i was stood between him and her). Theres no point me putting him in another room to burn him self out because he just follows me round kicking and punching and he is incredibly strong for someone so small. Then today he bit me through my coat which is padded, and now i've also got teeth marks in my arm. Usually I think i'm quite hardened to it but this time its really upset me. My question is this. My son will not even acknowledge what he has done he just denys everything. How do you teach a child who you can't even talk to that these things are wrong? He even saw me crying my eyes out yesterday and he didn't even bat an eye lid. I know its part of his AS but its really hard to take. Anyway, moan of the day over, any advice would be gratefully accepted! Thanks for listening. Cat x

My son (5 at the end of the month) has aspergers AND a wicked sense of humour when he wants to. Put it this way he appeared down in the lounge 10 minutes ago 'wearing' Darth Vader Mr Potato Head hat, arms and mask and laughing uncontrolably. Anyone who says Aspies don't have a sense of humour are talking utter tosh. xxxx

Thanks everyone for the great suggestions. I'm definately going to try the quiet room/noisy room thing and i'm also going to film him in action as i'm planning to get in touch with our CAMHS team next week to discuss this anyway and you can guarantee he won't do it in front of them. To be totally honest i was beginning to worry he might have tourettes but although he does have a lot of constant body movement he does'nt have any facial tics, does anyone know much about it? The only reason i was concerned about tourettes is that all the shreiking, barking etc does seem to be involountary. I may be barking up the wrong tree here (no pun intended!) but we feel totally in the dark as we don't know and have never met anyone else with AS so we really don't know what the behaviour of other AS children is like. Thanks again for the ideas!! cattubb.

Hi all, Firstly, HAPPY NEW YEAR. I just wanted to find out if anyone else has the same thing as me with their child. My son is 4 (5 this month) and has AS. He has always made a lot of noises, mostly yapping, barking, roaring, howling and screeching. Over the last couple of weeks it has got noticably worse. I guess the upheaval and stress of xmas has got to him as he usually makes a lot of noise when hes stressed out, although sometimes he will just roar or bark out of the blue for no apparant reason. Its really beginning to get us down as its upsetting to see him like that but also its really stressful when he is constantly making these noises and nothing we do or say can stop him. He is also constantly moving his body (unless hes engrossed in something hes interested in in which case he'll sit still for ages) which again is really stressing me out. Its particularly annoying (i feel guilty saying that but i'm being honest) when i'm trying to wind down my daughter (2) towards bedtime and he is constantly moving himself, the furniture, leaping around over the furniture and making the noises as well and theres just nothing i can do to stop him. I know this might sound trivial but over time its really getting me down. I'm beginning to worry that theres something else wrong with him apart from his AS so i thought i'd ask if other people's children display similar behaviour??? Thanks cattubb

Hi Ian, how would i go about doing that i.e. who do I ask? Would it be the CAHMS team? They've told me to get in touch whenever? I'm still a bit unsure on these things as this is all new to us we've only been in the 'system' since January and had a diagnosis for 3 weeks! Thanks, cattubb

Thats really true about the coordination thing. I'm not sure about catching balls etc. because my son has no interest in physical activities (its computers/tv/lego nothing else) but he is definately really clumsy and kind of awkward. When hes walking his feet sort of get in the way of each other and also when i hold his hand he holds himself really 'heavy' if you know what i mean. He is also always falling over and dropping things. Hes also got a bit of an odd walk which is becoming more pronounced as he becomes older (hes almost 5 with AS) cattubb

My son was diagnosed with Aspergers Syndrome 3 weeks ago and my husband asked what the difference between AS and HFA is and we were told that people with Autism would probably have had a significant language delay and that people with Aspergers would have normal or even early speech development and also above average IQ. My son definately fits the bill for Aspergers! Cattubb

You have definately encouraged me. You sound very 'together' and calm, although i would imagine you've had a lot of hard work and stress over the years. I don't really know anyone with ASD children so its VERY good to talk on here!!! Thanks x

I'm really pleased with myself as I have found a Transformers Transforming toothbrush today in Boots!!! I too have major teeth-brushing issues with my son but as luck would have it Transformers is his current thing. I'm keeping my fingers crossed for some clean teeth and peaceful mornings!! cattubb xx

Hi Pearl, just read your other thread. Sounds like he had a great time, you must feel so proud of these acheivements. I'm not even thinking about the future at the mo, too busy with 4 and 2 year olds to think about anything, prob not a bad thing!! xxxx

C (diagnosed Aspergers only 3 weeks ago)did his first Nativity on Friday (hes 4) and although i wanted to feel so proud i actually feel heartbroken. Its the first time i've really seen him with all his classmates and all the others did beautifully: sat still knew exactly what to do etc etc. Charlie had a teacher sit with him the whole time, he was yapping bouncing around, licking and sniffing his crown (he was a king) and basically was totally hyper. When he had to go on stage he basically threw the gold at baby jesus (did have a little snigger then) and tried to run into the crowd. His teacher had to sit on the stage with him as he was stamping and shouting when they sang we wish you a merry christmas at the end. He was a nightmare for the rest of the day and told me he hated it and would never do it again. I know Charlie well and he'll remember hes said that so i'm thinking he won't be doing it next year! I suppose it gave me a wake up call that yes he has AS and maybe it was like seeing him through other people's eyes. Sorry, i'm rambling but i feel so sad, when hes like that i just want to keep him home where hes safe and happiest but i know that would be no good for him. You probably all know how i feel. Thanks for listening.

Hi all, it is such a relief to hear that other peoples children act in this way too. I haven't really had any contact with other families with children with ASD s (probably because we live in a relatively small community so theres less of us!), so although i don't actually post on here very often i do read this forum every day and am finding it a life saver, i think i'd be going mad if i didn't get to 'talk' to anyone else having the same experiences as me. Cattubb

Hi all, thanks ever so much for the advice. I will definately be putting the reins in the bag next time i go out...... Also Charlie is absoloutely obsessed with the t.v. so i thing losing t.v. time is also a good idea which i'll try out. jsmum, i've never even heard of ODD but i'll have a look at those links, sounds interesting. thanks again all of you! cattubb

Hi, I haven't been on here for a while but i really need some advice and thought this was the best place to seek it! My son Charlie (4 1/2) has high functioning autism and possibly ADHD. We struggle with dealing with bad behaviour on a daily basis as he simple won't acknowledge if hes done something wrong and doesn't even get upset if we tell him off, not that we TRY to upset him, its just that if he got upset when he is in trouble it would show that he has at least registered that hes done wrong. He is so single-minded that he won't admit hes done anything wrong and in his eyes his way is always right. Its literally like banging your head against a brick wall. Anyway, recently he has run off a few times: on the beach, escaped from a friends house crossed a busy road and gone to the shop and back, walking home from school. I'm not careless and don't let him out of my sight but i also have a 2 year old and i can't physically hold on to him all the time. Today his Dad took him to town to get trainers and he had to let go of Charlie's hand for a second to put his pin number in the machine and Charlie ran off in to the crowded high street. Luckily my husband found him within minutes, thank god. Once again Charlie doesn't even acknowledge that it was dangerous and naughty to run off. He just says, cool as a cucumber 'i was looking for you' (i was in another shop with my daughter). I've got to the stage when I think theres no point even saying anything as it doesn't seem to make any difference. Has anyone else experienced this and if so how on earth do you deal with it? Also Charlie was having several violent tantrums a day which have now eased off but instead he will sit and rant to him self saying really awful things like 'i'm going to kill you mummy, i hate you, i hate everyone, i'm going to break all your stuff, i'm going to stab you with a sword, i'm going to break your legs etc etc etc' (i won't go on!). Again, is this normal, do other people's children do this? Sorry to rant on but i really need advice on this one! Cattubb

Morning, i was at the end of my tether yesterday with Charlie, i am at the same stage as you: although the 'professionals' are sure its Aspergers, Charlie still has a few more assessments to go through. Anyway, Charlie has very violent outbursts and I have got to the stage of not knowing what to do as he just does not react to any sort of 'punishment'. I've tried talking calmly, shouting, conviscating toys etc etc - nothing works. It feels like you're banging your head against a brick wall because theres just no reaction and Charlie just doesn't acknowledge that hes done anything wrong. Anyway, yesterday i decided to phone the NAS helpline (details on their website www.nas.org) they were brilliant: very helpful and it was very calming to speak to someone out of the situation as i am also on the point of tearing my hair out. The lady i spoke to gave me loads of good tips and is going to send info in the post. The thing i am going to do immediately is that she suggested we get a little trampoline so that when Charlie gets in a rage i firstly tell him he's feeling angry so he can eventually begin to recognise the emotion when he feels it and then put him on the trampoline so he can 'bounce' off all the negative energy. At this stage i say anythings worth a try, and at the end of the day if Charlie doesn't like the trampoline i'll have fun bouncing on it (maybe i could use it to bounce off stress/tone up thighs ha ha ha ha) Good luck and its def worth giving NAS a ring cattubb xxxxx