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Mother in Need

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Everything posted by Mother in Need

  1. Thank you Aro, have gone there and been reading avidly for nearly an hour now!
  2. I know there are many people on this forum whose kids have epilepsy, so please, someone? My youngest is at the point of a mental breakdown and selfharming etc. He is totally not coping at the moment (apart from the fits and not being allowed to do the activities he likes to do, he has lots of problems at school and has to deal with his brother), and the more info I have the more I can help him. To be honest, I am barely coping myself, with my AS son and his difficult behaviour I have trouble coping as it is, and now with all this on top........... even my eldest was crying yesterday (which for him is very rare), feeling totally neglected. I just don't have the energy to do it all. Someone must have some ideas? How else does epilepsy affect a child, apart from the actual fits?
  3. My youngest has had fits for a year now, and though he still hasn't been seen by an appropriate specialist the GP and school doctor seem to think it is epilepsy. My question is, how else can epilepsy affect him (other than the obvious, like absences and fits)? He has a lot of other problems, esp at school, and I am wondering what is cause and effect or what might be something else altogether (ie autistic traits). Examples: mood swings, slowing down of emotional maturity, needs not being met at school (but WHAT needs??????).
  4. First aid training doesn't cover giving medication (except for aspirine during heart attack). And in this age of sueing, no-one dares to hand out meds. I had great trouble at school when my youngest needed a liquid medication before lunch, it took weeks to sort out.... And an insulin injection for my AS son during school time is a complete no-no.... Ambulance personel are allowed to medicate though, aren't they? Could you maybe make the arrangement with the transport people that if your son has a seizure, that they ring an ambulance straight away? If he doesn't need the meds, then they can just leave again, but if he does need them then they are there... I'd be reluctant to drive your son to school yourself, that way the LEA will never really do what is needed, and it will make your son even more dependent on you, and will give you less time for yourself which you need.
  5. Thanks Scrappybunny, that makes me feel a lot better about it all! The helper listened really well to my concerns actually, and gave me the phone number of the chap who runs the youth club, so I will talk to him and take it from there. It does feel like maybe I was worrying a bit for nothing (better than the other way round though!).
  6. Well, the psych saw him (didn't give her any choice really!) but it feels she is brushing it all off with remarks that at age 10 he is torn between staying little and growing up (true, but most kids will have those feelings, my 16 year old still does), he hasn't got the right examples of behaviour (tell me about it), and he prefers to be with his mum rather than be at school (I knew that!), I gave her lots of examples of other problems (esp lack of social skills and emotional immaturity (both already mentioned to her by school itself), stickler to the rules etc etc, but she just said that it is easy to see autistic traits in anyone when you live with it all the time. Not too useful. Though I hope she'll give it more thought (she does see him as part of the whole family therapy sessions). So, I still don't have a clue how to help him. At least he went to school this morning without too much fuss, spending extra time with me yesterday did him good, but taking him out of school to do so will only compound some of the problems more.
  7. Thanks Stressedmumtotwo, that gives me a bit more of an idea (though he doesn't like sports of any kind...); the idea of going there myself first is a good one! And yes, they are first getting acquainted, today she is supposed to take him for walk, but this involves a car ride first and there is no way he will go into someone else's car, plus he doesn't like the idea of being away from me (doesn't feel safe, even though he knows nothing can/will happen). I suggested to him that I'll do the driving and they can go for their walk while I take the youngest in the opposite direction, and he carries the walkie talkie so he can still talk to me to feel safe. Hopefully the helper will be alright with that, and it'll work. Butterfingers, that is what it feels like to me... He is not really interested in socialising, BUT he would very much like a friend, and you can't get the one without the other...
  8. I suspect that around here it is frequented by the 'nasties' or at least 'impressionables', my eldest won't even consider going for that reason. And the helper works part time as a youth club worker (in a different area though!) so can't see anything negative about it. But I will try to find out more details and point out where my son might find it difficult.
  9. my 6th try. I am now going to do this in really little bits. I know my child but but I don't know the youth club. I have no idea what they do, what the sound and light levels are like (he can cope with normal talking and darker light, but not for instance with loud music or disco lights).
  10. My fourth attempt at a reply, I keep loosing everything I have just typed, it keeps jumping back to the main page....
  11. The thing is, if I take him (which has now been arranged with school anyway), she cannot refuse to see him as he is THERE. And his brother won't be there taking over any conversation, nor can we hurt his feelings by talking about him. What he would like is to be at home, and not go to school, so home education. The educational side of things is easy, but as I mentioned before, it is my respite time and I need it. Also, I was hoping to spend some time with my eldest (who has almost become a stranger as all he does is lock himself in his bedroom) who will have some study leave next month, and I can't give him time if I have to educate and spend time with the littler one...
  12. My Youngest (aged 10) has just given a great shout for help, by running away from school, because he wanted his mummy.... due to all the attention his AS brother needs, I can't give him as much as he needs, and he just wants to be home with me while his brother is at school. Well, that is the situation very simplified. There is a lot more to it, a long history with school problems, ie bullying (though that has now stopped), being bored, not liking his teacher, lacking the social skills to properly make friends, etc. Then there are his health problems (stomach, headaches + poss epilepsy), and ofcourse having to deal with his brother's difficult behaviour and often bearing the brunt of it. Question is, what can I do? How can I help him? He would love to be home educated, but school time is my respite time and I need it. I have an appointment with the psychologist tomorrow, which was meant for me alone (for the first time ever), but I will take him with me and request for her to assess him or whatever. What is the kind of thing I should ask for, for him? I did request before for them to see him, when he was badly bullied and just wanted to die, but they refused then(though they did talk to the school). What can I say or do so they will help him this time? By the way, he was missing from school for at least 15 minutes before I rang them up, and they hadn't even missed him.....
  13. After nearly two years of fighting to get some help from social services, they have finally decided to give us 2 hours of help per week. It's not much, but certainly better than nothing, and will enable me to spend some time with my other two sons. And it means he is finally 'in the system' should something go wrong (ie I have to go into hospital or something). However, ignoring his behavioural difficulties and the effect this has on the rest of us, they feel 'he is socially isolated' and are ONLY helping to get him to go to youth club; first with help, but the idea is for him to eventually be there by himself. However, this is a boy who at 13 still holds his mummy's hand, and has never really done anything independently. And, he doesnt WANT to go to youth club and be with other youngsters, in a noisy environment with crowds of strangers. I am grateful for the help they give, and I have to say, the lady who has come twice now is really good with him and has herself a son with AS. I am however wondering about how suitable this whole idea is. Has anyone had any experiences with youth clubs, because to be honest I really have no idea, BUT my 16 year old won't go anywhere near them either, so what can we expect?
  14. Have just received a letter acknowledging my claim and saying that it'll take about 3 months to hear more from them.
  15. That sounds like disability discrimination to me.
  16. We too receive family therapy, though for his oppositional defiant disorder. I value it greatly. Although it doesn't actually make him behave any better unfortunately, he is willing/able to talk about some of his problems and feelings; at home he just blows whenever I try this. This has made that I understand him better, which makes it easier to bear, but also makes that sometimes I can avoid difficult situations. My youngest is also a bit more tolerant now, though my eldest still refuses to take part and just wants me to put him in a home...
  17. My son passed some of the things on the ADOS test as well, but fortunately the psychiatrist realised the test wasn't all. He said that it shows that he is capable of understanding some of the issues on an intellectual level, and that it shows that with time he should be able to learn to apply them consciously. This sounds more like the way it might be for your daughter. I agree with the others to get in touch with the specialist in Alderhey and hopefully you can then sit back and let him/her take up the fight! You can do without it...
  18. Yesterday my son exploded in the session with the psychologist who paled somewhat and actually told him off.... so yes, you're not the only one. To be honest, I totally ignore it, but then I ignore him often as he always talks non-stop and i have a hearing problem and couldn't get anything done otherwise as listening takes too much concentration.
  19. tried to do it, but it 'couldn't find anyone to contact' in my area....
  20. Have just sent mine off yesterday, for a trike and a holiday. Does anyone have any idea how long it'll be before we'll hear anything? And then how long does it take for the visit, and then for the results?
  21. I too need to kep my AS son constantly entertained or he too becomes intolerable and very horrible to his younger brother. So after school there is always something active that I do with him, like gardening (on his terms!) or going for a walk, or even a car journey to pick up his older brother. Then while I cook he watches a video, he'll then hang around me and talk and talk and talk till he gets ready for bed, I read him a 1 hour night story, he'll spend another 15-30 minutes in bed with me, and then finally gets into his own bed where I'll spend another 15-30 minutes talking to him. That usually takes us till about 9.30, and thanks to the respiridone he'll actually go to sleep then. I myself then still have to put his younger brother to bed (who listens to the story too ofcourse), do the dishes or there won't be space to make the packlunches in the morning, and try to find some time and energy to have a chat with my eldest, although by then he is usually in bed too. All this leaves little time for his brothers, nor for myself. Again, in weekends and holidays I constantly have to entertain him to avoid him getting bored and blowing, and after a week I've usually had it and it all goes pearshaped... So, after all that, maybe you could give him something to do (or lots of somethings, my son is only interested for short periods of time)?
  22. Oh Bambi, I. like so many others on this forum, can so sympathise with how you feel. I have been feeling like throwing the towel in this week, and I don't get it as bad as you do! I personally think that hospitalisation might not be a bad option. You get a much needed break, and will therefore be much better able to care for him after, but also, his problems will be hopefully looked at so much more, and the roots of them maybe discovered, so something can really be done to actually help him. You should also receive more help and support afterwards, when he comes back home. I hope! Meanwhile you'll also be able to spend some quality time with your other little boy, which right now will be nigh on impossible. Saying that, I have the feeling that that is where my own son would end up if I really couldn't cope anymore, and there is no way I would leave him by himself in our local hospital as I know the care there is sooo bad (last time he had an operation I actually took him home overnight, as I couldn't stay with him and they had no clue as to his medical care (I am unfortunately very serious...) let alone the austism.... So do make sure he ends up where they can actually provide for his needs!
  23. My eldest definitely wouldn't agree with me if I said I was sane....... but then, what keeps me sane (well, in my eyes anyway) is to go up the moors and goecache, preferable with friends, whatever the weather. Well, when the gales get too bad we do go home. And then when I come home with stories of Dartmoor ponies trying to eat my lunch out of my hands, of crossing streams that are really too swollen, or of splashing through miles of mud, and all this to find a small plastic container at the end of it, my eldest definitely feels I am mad!!!
  24. I am 100% sure that my ex is on the Spectrum, after all that I have learned over the last year (most of it from/via this site!!!). And as my son is growing up, he is becoming more and more like him, which I actually find more and more difficult (I mean, I kicked ex out after 13 years of marriage for a very good reason...).
  25. Oh Jessie, I sooooooooo feel the same. If I had had a a gun in my hand yesterday I would have shot him, honest. Right now I am sitting here crying and wondering what would happen if I rang SS and told them to take him away or else. But I can't, I just love him too much. I am losing my other two children (due to me not being available for them most of the time), and I feel I am going to end up having to choose between my AS son (with a life of abuse and loneliness) or my other two boys and enjoy a normal life....
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