Mother in Need

OH YES, exactly what happens to me. What time is it now.... and nothing done.....

Same problem here, I actually have him home watching telly right now as he said he wasn't well. Yesterday I sent him in despite off it, but school did call to ask me to pick him up. however, he was really upset because they couldn't get hold of me for 1 1/2 hours (mobile had run out of battery) so he's been really tantruming since as he feels so insecure. If he goes to school not feeling well and I am not on 'stand-by', this is what I get... it'll take weeks for him to get over it, and longer before he is willing to go to school when feeling slightly ill...... I do normally send him in if he's not too bad as he is hard work and I need the respite school gives me. Sounds egoistical I know, but as it's all I ever get I need it. Also, the half hour in the morning and 10 minutes in the afternoon I get with my youngest WITHOUT him are very precious for my youngest, and his behaviour goes downhill too when he doesn't get me for those short times (as again it's the only times he can have my full attention).

My son doesn't do either of those things either, and he has a dual dx of asperger's syndrome AND high funtioning autism.

My son can be very aggressive and violent as well, though he also has a dx of oppostional defiant disorder, so I guess that'll make it a lot worse. He is on respirodone which has made a huge difference, though it can still be quite tough. Most of his aggression comes when things don't go the way HE wants them to go, and from his totally self-centered point of view he can simply not understand that other people have needs and wants as well, and he feels that whatever anyone does, it is in order to spite him (eg, I didn't allow him an icecream a while ago when we stopped for petrol, someone came out of the shop eating one and he felt that person did it just to upset him). School is a huge stress factor, though since he has full-time 1:1, he has become a lot easier to handle. Before that, school couldn't cope with him and I was told it was better if I kept him home for a while........ Fortunately this actually helped a lot in obtaining his statement and the help he is now getting.

Thanks both. SS is totally non-responsive, they must have a huge (and I mean huge) pile of letters from professionals asking them to support us, but they just don't react, or when they do, they simply still do nothing at all. I have tried all sorts, but to no avail (and that includes their official complaints procedure, and threatening with court). I dare say it is financial; as long as they don't acknowledge someone has a problem, they don't have to help...

JsMum, thanks for the link, it looks interesting though I couldn't find a specific course for physical restraint, but anyway, I couldn't get there and back while my son is at school (from Cornwall), and there is no-one willing and able to have him at any other time so courses are out of the question really... though it is what I need...

Thanks for trying David. Unfortunately I do fully understand the reasons for not being allowed to put these techniques up on the forum. And I think it is those same reasons that stops anyone from passing them on, incl organisations etc... I'd love to be trained and shown them properly, but I have only met brick walls to that request. I did not, by the way, have my son on the ground. He is 13, nearly my size, heavier than me and much stronger. There is no way I could wrestle him to the ground even if I wanted to... I used a wall, a table and sheer desperation to keep him more or less in one spot, and I am still hurting... The psychiatrist was considering increasing his respiridone, but because of his weight (and he is diabetic as well, so extra concern there) he decided against it.

Thanks for those links Smiley. It is clear to me that what my youngest is experiencing is usually not related to that kind of shutdowns, but is more likely epilepsy. Though, saying that, he may sometimes shutdown in an auditory sense, and I will observe that much more closely now. He is being officially tested for dyslexia tomorrow (finally, as he definitely is), has been referred to speech and language and has a EEG next week. I don't know if any of those can be linked or are part of a greater pattern? If an EEG doesn't show anything (I mean, it is only a very short moment's peep into the brain), or there other tests that can be done to check for epilepsy?

My son's bus driver ended up refusing to take him in the end, so they didn't have much choice really. Though they did tell me I had to take him in myself, with that so-called petrol allowance that doesn't cover the cost, I too had another child to get to school and refused. IPSEA helped me, there are places to look for official rules etc, I'd look for the link but don't have time right now, check on IPSEAs site I am sure it is there. The taxi is now written in his statement.

I already asked the local group of the NAS at one of their courses, but they said they didn't do them.

rights for working parents with disabled children Hope this link helps!

Do you have contact with the girls parent's, via a home to school book or something? Whenever a situation like you've described happens with my son at school, I am on them like a BOMB, and every time the SENCO sends yet another note to ALL the teachers reminding them of his difficulties. I do find that as a parent I have more influence somehow to have these incidents sorted, and they now happen less often. Maybe if the parents were aware, they could complain to the SENCO as well?

Thanks all! I have just received a renewal form, apparently he only got awarded for two years, so now I HAVE to re-apply. I will ask the diabetic nurse, the clinical psychologist, and school who is now finally cooperative, and send them his statement (incl 30 hours 1-2-1). Hopefully this time I get the right person...and manage to use the right 'magical' words.... It'll be a while before I'll manage to fill in those forms, have also just received the forms for the family fund grants, and lots of other paperwork to do, but I'll slowly start working on it.

At the beginning of the holidays (thank God they've just gone back to school now!) I had to seriously restrain my AS son in public (while bowling). It took a whole half hour before he was calm enough so I could let him go. If I hadn't done this, he would have run out into a busy road, and apart from the risk of being hit by a car, he would have gotten lost as he was in a city he didn't know. Surprisingly I didn't have a single reaction from the (plentiful) public, though I think the fact that I constantly stroked him (when I could free one hand for a moment) and kissed him while restraining him, and talked to him calmly non-stop, will have made people realise I wasn't trying to hurt him. I was there with my ex and my three boys. My ex completely ignored the situation and did absolutely nothing to help, he was only upset because the bowling was being interrupted and he had payed for it (a very rare happening). My eldest did try to help at times and hurt both his wrists in the process. I struggled on by myself, and hurt my already bad arm so much it still hasn't fully recovered now a week later. What I would like to know is, does anyone know how/where one can learn restraining techniques properly? I have asked CAHMS, school, social services, but all they ever say is that one should not do it at all, or at least with two people. Fat chance of that.... I know I wasn't restraining properly and I had to hold my eldest back from kicking the hell out of him. both of us got hurt (though not my AS son). There's got to be something..........I've looked on the net, and also tried to google for the CALMS method mentioned above, but cannot find actual techniques.

Wow, the fact that he feels like going on that trip is quite something, there is no way my 13 year old would even feel secure enough to go and stay somewhere else where I wasn't, even if it was only 1 minute up the road... Anyway, I can't help regarding the exchange, though my eldest has done a French exchange we had trouble obtaining a passport for him, so in the end he couldn't go though we did have the French lad here. All I can say is, having been in Germany myself, they all seem to speak very good English, and though it is supposed to be an exchange, they will expect to speak quite a bit of English with your son (as we spoke French with the French boy). Personally I would tell the other family about his AS, so they know what to expect and what to avoid. Would you let your son stay with strangers in your local area without them knowing? Germany is a long way off and if something goes completely wrong because he can't cope, it'll be somewhat difficult to go and reassure him...

Has a poll been done on how many ASD kids here have epilepsy as well?

Thanks Mel. What rate are you getting for your son? I still also feel that they should have added all his problems together, I mean, most here on the forum receive middle to higher rate for their ASD kids, and I know children with diabetes-only usually get middle rate, so why does my son ONLY get middle rate when he has both AS and diabetes, plus oppositional defiant disorder to deal with as well? I just don't have the energy to try to re-apply, but feel we have the right to a higher rate.

I too think you did the right thing. And that the teachers were standing around because they weren't allowed to do anything, not even so much as touch them these days. Let's hope that this episode will help them back you up for the right provision on his statement, as he is obviously not coping. I too have had to restrain my son on loads of occasions, to stop him from hurting himself, and to stop him from hurting his younger brother. Unfortunately, at 13 he is heavier than I am and MUCH stronger and as I have lost partial use of my left arm due to his violence, there isn't much I can do anymore. I just wish that training on restraining techniques would be made readily available to all us parents who need it, as that would ensure we do it in a safe way. However, the only response to that request I have ever had is that it is too dangerous and one should only ever restrain with two people, etc etc. So what does one do as a single parent? And how does one stop them from jumping out of an upstairs window, or beating up a sibling?

JsMum, Have you got a nice link to the disability discrimination act? I have just done some browsing, but cannot find those parts you mentioned. It is difficult to read as well isn't it. Anyway, I don't seem to be able to find the proper one I think.

From what I have read so far, this means that my youngest could be epileptic as well then, there were some more symptoms listed that he also has. Though he is not on the spectrum (as far as I know), he is emotionally immature, lacks social skills, has some mild speech problems, sticks to rules like glue etc, so I do feel he has a few tendencies. Has a poll been done on how many ASD kids here have epilepsy as well?

What are communication disorders, emotional difficulties etc etc? They are developmental disorders and/or mental health problems and therefore you do fit into those criteria!!! Yeah, that support from those schools is so freely accessed? Yeah right.

Thanks Hev. I think (someone please correct me if not fully correct and/or add to it): an ECG is an electro cardio gram which really looks at one's heartbeat. They attach small electrodes to the chest and other areas, to measure heart beat. it is totally painless and only takes minutes. An EEG is an electro encephalo gram which looks at one's brainwave pattern. Again they attach small electrodes, on the head I believe/assume, and is painless also.

Am interested in this thread as my youngest (NT) has funny turns as well (interesting that we too name them as such), he has those little absences but ALSO gets very dizzy often, and sometimes his heart goes mad and he almost collapses, is confused, extremely tired, headache, and takes longer and longer to recover (1 1/2 days the last time). He has had an ECG (normal) and is awaiting an EEG but that prob won't be for another 3 months, and meanwhile he is scared and so am I, and I don't dare take him up the moors or anywhere steep (ahum, we live in Cornwall), as it is hell getting him back home after, apart from risk of injury, and I have AS son to deal with as well who can't see he needs to take second seat while all that's going on... Has anyone experienced anything like this? Sorry Hev, don't mean to hijack your thread, tell me off if I have...

No clubs at all, ever, there is no support available in this area, he just seems to want to stay with me and me only, even though it is hard work to stop him from being bored all the time, he cannot cope without extra support. Did try horseriding last year (with me beside him), but he was so difficult part of the time that is became simply silly at �10 half hour + hour's fuel, as he wasn't even riding for that time.

The only thing that jumps to mind is maybe use a tape of italian (language/life, whatever) as a background noise to help keep him calm at times? people in warmer countries are so much more open and warm, aren't they, there is a marked difference. The not-applying is pretty normal I think, my son is 13 and still has serious trouble with that, he knows it in his head, but applying it all is a different thing altogether! You must be so desperate for some space!!! Or maybe a video/documentary on Italy, would he sit and watch that and give you a few minutes peace?