Mother in Need

My AS son overeats as well, but because he is also diabetic, I have to keep a very close eye out on what he eats and how much! On the one hand that's not easy, but on the other hand it is easier because of the additional rules and he likes rules. I do think it is also a sensory issue with him, he needs something to chew on constantly. He will chew on his hair (or mine...), on his shirt, paper clips etc etc etc. The other week I was given a special chewing tube for him, and he spent the whole weekend chewing frantically. However, he didn't just chew it, he also ate it so it wasn't suitable in the end. But, during that weekend he ate a lot less! So I think that apart from needing that full tummy (he does know when he is full up, but wants it to feel that way is my impression), he simply needs to chew which is what makes him ask for food all the time.

KarenT, you're describing my son fully! Though emotionally I'd say he is a 'terrible two toddler' in a 12 year old body with the intelligence of a 16 year old. He is dyslexic as well. And yes indeed, I am looking into asking for a statement but school feels he does not need this as he's so bright and keeping up with the schoolwork. They obviously haven't seen him when he comes home...well they have actually, I've shown then video tapes, but they still feel he does not need help What means 'learning disabled/having a learning disablility'?

Hi Abby, the first person to mention AS to me was a friend who has an AS son herself, then followed by an independent educational psychologist. It took 4 months for the psychiatrist to do all his 'tests' and agree, whereas I met a speech therapist the other day who within 10 minutes of seeing him for the first time recognised he had AS. I certainly agree with everyone else, that your TOM most likely knows more about AS than the person who will end up diagnosing your son. There is a big difference between 'being the doctor or specialist' than living and actually working with a person with an illness or a disability.

Good on you Phasmid!

Thanks Blue, that info is useful. Looks like I have to go ahead and somehow have this done. We spent 2 hours at the surgery on Friday, trying to convince him to get that blood test done but to no avail ...surgery says we'll have to have it done via the hospital instead......... but what difference will it make if he is too scared to have it done, how are they going to do this? Anyone had experience with convincing a child to have a blood test done? Ironically, I give him 2 injections a day and several small bloodtests (but they are only fingerpricks); after 6 1/2 years of this and at age 12 he still won't have a normal test done...

I've had similar problems with my NT son of 14 (tall, handsome and smart, young carer, different than everyone else and hence a target). HOWEVER, after loads of assaults and reports to the police etc (long story) the police has now given the culprits harrassment orders and warnings of ASBOs, and since then they have left him alone! They're still a pain in the village, but we personally have not had any problems for months now!!! It does pay to keep reporting it to the police. And if you can, video what happens, not only is this really useful for the police, the culprits themselves don't like it and RUN (we've had some real fun at their expense with this, one moment they all come up threatening to beat him up and the next second they all turn tail and run as fast as they can! The first time I did this it even turned out that the camera's battery was flat, but they didn't know that!)

My son has just been diagnosed with AS and the psychiatrist said he wanted to do a routine test for fragile X. I did not check this out (as I should have done) but consented to this. However, bloodtests are a nightmare he absolutely hates them and it is going to be a real trauma for anyone in the immediate vicinity, let alone him ofcourse. So now after what you say, my son also has no learning disabilities and is very bright, maybe I shoudl refuse to do this in the first place?

Karen. could you talk to this guy and explain to him? WE had a similar problem with a parrot of all things, which was put out at 7 am and was making more noise than my boys (and that's saying something!). However, when I suggested that 7 was a bit early and could he maybe wait till 8 before putting the parrot outside, he actually listened, then asked other people and they all agreed that the creature was rather noisy. He now often doesn't put him outside till 10 am but never before 8! I too have no family, am completely alone, their dad is useless and non interested in them (AS son won't stay alone with him anyway) , I've three boys incl 12 year old with AS and ODD, life can get pretty tough. However, the holidays so far aren't too bad, which shows that school is harder on him than I thought. Mind you, he still locked me in the bathroom this morning, and was very grumpy and irritable most day; we had a HUGE scene also when his older brother wanted to spend some time with his friend alone (a neighbour came over to ask if everything was alright...);when dropping off a letter to the GP at the surgery I really couldn't leave him alone in the car, and yet he blatantly refused to come out, you know the scene, screaming, shouting, holding on with full weight to something so I can't shift him (he's too heavy for me anyway), so what could I do................ What do you all do in those moments, who do you get them to cooperate? However, everything became so worth it when I bought him this life vest and took him to a nearby lake in which he loves to swim; he is very over-confident but can't really swim all that well, so I have been worried re his safety in the water a lot, but now with the vest he can go as far as he likes! He enjoyed it greatly and was jumping up and down for joy! My structure (if you can really call it such) is home in the morning (which means computer and videos for the boys and should mean some work work for me (not that the internal/infernal interruptions really help me to get anything done) and then in the afternoon we go out somewhere, preferably low cost like a walk around or a swim in some nice cold lake. First week over, only 5 more to go.........and I'm still sane.........!?

Karen. could you talk to this guy and explain to him? WE had a similar problem with a parrot of all things, which was put out at 7 am and was making more noise than my boys (and that's saying something!). However, when I suggested that 7 was a bit early and could he maybe wait till 8 before putting the parrot outside, he actually listened, then asked other people and they all agreed that the creature was rather noisy. He now often doesn't put him outside till 10 am but never before 8! I too have no family, am completely alone, their dad is useless and non interested in them (AS son won't stay alone with him anyway) , I've three boys incl 12 year old with AS and ODD, life can get pretty tough. However, the holidays so far aren't too bad, which shows that school is harder on him than I thought. Mind you, he still locked me in the bathroom this morning, and was very grumpy and irritable most day; we had a HUGE scene also when his older brother wanted to spend some time with his friend alone (a neighbour came over to ask if everything was alright...);when dropping off a letter to the GP at the surgery I really couldn't leave him alone in the car, and yet he blatantly refused to come out, you know the scene, screaming, shouting, holding on with full weight to something so I can't shift him (he's too heavy for me anyway), so what could I do................ What do you all do in those moments, who do you get them to cooperate? However, everything became so worth it when I bought him this life vest and took him to a nearby lake in which he loves to swim; he is very over-confident but can't really swim all that well, s

My NT son of 8 is only now learning to tie his shoe laces. I think it is a matter of being ready and motivated to do it. I've tried loads of times before but he never caught on, but now he seems ready and is doing them! They look nice, but I simply used a piece of card board, made some holes in it and tied an old shoe lace through it. I am giving him a sticker for every time he manages to do it (with lots of help at first but by now without any!) and it seems to have done the trick.

Yeap, the same with my son and he's nearly 12. He can also not distinguish between tv programmes and what is real, same with computer games etc. Though it does very much depend on his mood at the time. The same with my son too, but unfortunately he does not take this very kindly and is always accusing me (in a not nice manner) of lying and trying to make him feel bad, when all I want to do is help him (and protect his brothers in the process, they too have basic human rights...) Is there some way we can 'connect' their 'knowing' with their 'actions'? It seems as if they have two personalities at those moments, one who knows how they should behave but only looking on from within, and the other totally irrational and full of anger on the outside?

My AS son tells me that when he has a meltdown (he calls it being in a bad mood, but I can tell you that is somewhat of an understatement) he can still think clearly inside his own mind, and that he realizes that his behaviour is wrong while doing that behaviour. For instance, while he is kicking and punching his younger brother, he knows he shouldn't be doing this and he doesn't want to be doing this, but he cannot stop himself from doing it. He always seems so totally irrational during his bad moods that I was very very surprised to hear this, but at the same time it gives me hope that maybe he can somehow learn to actually stop and control his behaviour. Has anyone experienced this before and maybe have some tips that might be really useful?

Hi, my experience with social workers so far is that they have no training at all re any type of medical problem, and do not want to understand either. I have found it real scary to talk to those people; without training they are there to give us 'advice' and if we don't do as they say............they've got too much power based on no knowledge............... as Carole wrote, dragging her son kicking and screaming on their orders, is just not on. The same with doctors in hospitals as well, doing bloodtests or anything to do with needles and our kids get so scared, but they will continue even if it takes an hour of agony for them, with no regard to their feelings. I think it is all totally wrong. And Carol, for me, bribery works sometimes and when it does, I use it! Why make my son extremely unhappy for hours, when he can't help himself anyway, if I can make him happy quick and keep my own sanity in the process, and thus remain fit to care for him? Happy v unhappy. I know which one I prefer!

Viper, to prove you wrong (as requested), my son has just been diagnosed with AS and ODD, he is also dyslexic, has dyspraxic tendencies and is very gifted. And is diabetic, to add a few extra mood swings to the mix. And oh, did I mention he has just started puberty to complicate matters even more......

A friend with a child with Asperger's and then, completely indepently, a week later a private educational psychologist who I had asked/paid to assess him for his dyslxia/dyspraxia mentioned autism. It then still took a full year before he was finally officially assessed, and I had to change GPs and do a lot of pushing to get this far.

I too was wondering about my son's lack of memory, though with him they are usually the memories of his more negative behaviour. No he does not remember pushing his brother down the stairs the day before. No he does not remember screaming and shouting for over two hours when asked to get off the computer. ETC ETC. It seems to be much more pronounced the more upset he is/was. He DOES remember criticism but never praise, you can tell him he did something well 100 times, and only once that maybe he could have done it slightly different, and he'll complain for ages that all you ever do is critisize him. BUT his own behaviour gets completely lost in his memory. It's interesting to hear that there might be a physiological part to this, like what was mentioned about being thirsty. Has anyone else noticed something like that, either thirst or bloodsugars or stress or whatever? Maybe if we can suss out between us which may be possible triggers are, we can help improve this?

Suze, I can relate very much to that! My 11 year old son certainly has no sense of time, thinks lunch time is supper time and vice versa, believes things happened yesterday even though it was earlier in the same day, etc. Sometimes he can suss it out, but certainly not when he is confused. We often use a timer so he can keep track of it; but then he becomes really rigid with it which doesn't help. ~Also, he has such complex theories re time that I won't even try to repeat it. Or understand it. Definitely way too logical!

My AS son had a similar system of credits at school, and he was happy with that, as long as indeed he did not have to get up in assembly. However, the school have just changed the system, they now receive blue notes that all go into a big box and then at the end of the week they pull a couple of notes out of the box and those kids receive items like stereos, MP3 payers etc (donated to the school by local businesses I guess). And now he suddenly HATES the rewards and is extremely critical of the whole process. 'You shouldn't receive rewards for something you should be doing anyway' he says, as you should do your best at school always anyway. The whole class can be in absolute chaos or rioting or whatever, but my son will sit at his desk and do his work (though extremely upset about the noise and distractions!)

I've had great difficulties getting my AS son to school also. School was not helpful at all, and plainly would not believe me till I showed them video clips of my son's extreme behaviour in the mornings. Once at school he was alright, but it was/is indeed the matter of getting him there in the first place. It is a lot better now though! School is now listening and really helping. They have taken away some of the pressures and that has made a huge difference! Like no homework!!!!! (oh, was he stressed about that one, he had problems remembering what he had to do in the first place, then problems with actually doing it until I broke it all down into teensy little steps for him (which I could only do once I had managed to suss out what it was he was supposed to do though), and then the stress of realising at 10 pm the night before, or first thing in the morning, that he had forgotten something). They have also taken him out of foreign languages which was a huge stress factor too (he is also dyslexic). There are still times he finds it difficult to go, and there is always some underlying stress related factor to that, like a change of some kind. Monday monings are still the worst as it is the change from weekend routine to school routine and he doesn't like change at all. The psychologist today said that it is important to identify all these stress points so they can be worked on. I personally feel that my son is better off in mainstream school AS LONG AS HE GETS THE HELP THAT HE NEEDS but then, he is extremely bright as well and his intellectual capacity is less likely to be stimulated in a special needs school. I think that the question of special v mainstream depends VERY much on the individual child and the help that they are receiving. And to be honest, some of the stories that I have read re special needs schools haven't particularly impressed me.