Jump to content

Mother in Need

Members
  • Content Count

    544
  • Joined

  • Last visited

Everything posted by Mother in Need

  1. And is the help you've been getting written down/backed by a statement? Because if it is, they simply cannot just withdraw that help!
  2. A good article indeed. I won't hold my hopes up yet though, IF anything comes from it it'll be years, and there have ben plenty of other people pointing out all of these things.
  3. That's great, and you are very fortunate with that! IPSEA is for when you have problems getting your child's needs recognised and provided for, and to me it sounds like the SENCO does recognise them and will help you to get that statement, so I would hold off on them for now. Good luck with your meeting tomorrow! A suggestion: it would probably help if you make a list beforehand about where you feel your child's needs are different from the other children in the class. You know your child and the SENCO doesn't, so that should help her put the help in place that he needs.
  4. My youngest (9, NT) is dyslexic, but also very bright. As is so common, his high level of intelligence masks his inability to spell anything but the most simple of words somehow, and it has taken me till he is year 5 for a teacher to listen and take a test (last Sep). There was great cause for concern in the test (but they hadn't noticed that without that stupid test) and he has since been referred to the Dyslexia Advisory Teacher and also to SALT, for speech problems that they 'suddenly' picked up on. Having approached the school repeatedly as to what is done for him meanwhile, the answer is and remains: NOTHING as he is not behind in any subject and even in his spelling not as far beind as their tables say he has to be, for action to be taken; the fact that he is not reaching the levels he could reach and that his self esteem is greatly affected, is seen as totally irrelevant. My question is: shouldn't he at least be on School Action or School Action Plus as he has been referred to those two services? And if so, shouldn't he at least have an IEP? The teacher has no clue and it seems neither does the SENCO........they simply say no, they don't have to do anything till they have received some advice.......they should have the basic knowledge to do this surely? Must he be on SA or SA+ or can these referrals be done without? The SEN Code leaves me confused, 5:54 seems to say that they can act as consultants without being on SA/SA+ (that's how I read it anyway), but 5:55 seems to say yes.
  5. "i am sick of them telling me that all our problems are caused by anxiety". I am soooo sick of that as well, whatever it is, the cause according to the GP is always stress. And though stress will aggrevate things, it doesn't always cause it... it has stopped me going as well. I hope you're feeling a bit better Pingu!
  6. Suzy, what a horrible situation. I know a little what you're going through, in that my son's father has no clue either. BUT my kids won't be left alone with him, so when they see him I am always there, controlling everything as much as possible (and no, I am not a control freak, but, as you say, otherwise we all pay the brunt before and after the visit). My ex has NEVER read the AS reports on his son (mind you, he won't even read the kids school reports), and for a long time he didnt' even know what the word Asperger's stood for. I got fed up with this, and eventually refused to let him see the boys till he had at least looked it up. It took him two months, but then he did, and at least he is now aware his son is disabled and he needs to give him a little leeway. It's not much, but it is more than before. I don't know if this is an option? If their father really wants to see them, he'll have to do his bit, and the boys shouldn't be too long without seeing him. Maybe give him a book to read, one that you have found particularly helpful, so he'll understand more and adapt his behaviour and get that routine in place? By the way, I don't think you should try to pleease anyone, at this stage you need to keep your relationship alive and yourself sane. Without that, no-one will be pleased with anything...
  7. Hi Gowler, I know exactly what you are going through, I have more or less the same situation with my AS son. The only difference is that because he is on meds, he is a bit more controlled and his rages don't last that long. And I am not so lucky as to have a partner to help out, but then, I only have 3 kids, not 5. And my son is regularly seen by a psychiatrist and clinical psychologist, which is what you need. OK. I would think your priority is to get him on to those medicines. My son is on respiridone and it is the only reason we're all still reasonably ...what's the word...alive...coping..well, only just.... I have the feeling you know what I mean. I am assuming that your son is doing his final GCSE year. This will create an enormous amount of stress for him, and one he cannot cope with, increasing his behavioural problems enormously. Somehow, maybe you can reduce this stress somewhat, this obviously depends on how cooperative school is, on how detailed and useful his statement is, and on how much energy you have left to FIGHT, because that is what you'll have to do to get the situation changed, both at school and to get him on medication. First step is to go to the GP and explain the situation, preferably while crying your heart out (it seems stupid, but this seems to make a big difference). Give your GP a letter as well, detailing as much as poss, preferably with a detailed diary of his behaviour included; this will ensure that ALL will go on file (it is amazing how very little they actually write down after one's visit...) and that you get to cover all that you want to; this letter of yours will then most likely be copied and forwarded to the CAHMS specialist, so the clearer and more comprehensive, the better. If there are other people who know your son and have seen his behaviour, get them to write a letter as well; the more the better! As for school, as I said, this'll depend on their cooperation (but then, they must be desperate as well), and on what his statement says. After a nearly 2 year fight, my son's college is now quite helpful. I hope this helps a little, feel free to PM me.
  8. Minerva, I think that was an incredibly courageous thing of you to say. Admitting to yourself that that is how you feel sometime is one thing, but admitting it out openly another. I don't know if my feelings have anything to do with grieving, but I too think so often about how life would be without an autistic child, not only for me, but mostly for my other two chidren. This morning, my youngest asked me that if I had to choose between him and his brother (AS), if one of them had to die and I had to choose, who would I chose.... ofcourse I reassured them both that that would never happen, and I loved them both just as much, etc etc, but my 9 your old stated clearly that I would always chose for his brother to live (his feeling is understandable as it seems like I am always there for his brother but so little for him, poor soul). However, my own feelings are actually quite clear on that, if I had to loose one of my 3 boys, I wished it was my AS son, not because I don't love him like the others, I really do, but because then his brothers would have a decent life too and I would have a future myself....is this selfish? Uncaring? Are these feelings unusual? Or am I simply not coping too well to be thinking this way? Don't worry, I would never do anything to my boys, it is just that those thoughts do cross my mind, those what if's, esp when I feel matters are way too much for me and I am slowly ground down.
  9. Teaker1s, I know exactly what you mean, I am in a similar situation workwise/benefits wise, if I were to go back to work I'd be much worse off, I dont want to be on benefits but have no choice, it is stupid, I want to work, have plenty of skills and yet I'll lose so much if i did.... I would suggest you go to CAB and discuss all the figures, and check if there are any rules that would allow you to keep your direct payments etc.
  10. Mother in Need

    Statements

    The same for us, statement, help with DLA, SEN code, IPSEA, sleep, my sanity, etc etc, has all been achieved thanks to this forum, so thanks to those having started it, and thanks to those on this site who are spending their time reading and answering!!!!!!!!!!!!!!!!!!!!!!!!!!! Now all I need is tackling SS (ahem, yeah I know, I have really given up on them by now, but one can but hope, winning the lottery is probably more achievable)
  11. Mother in Need

    Statements

    I have to add to my vote that although I received his statement in July this year, it had taken me a whole year and a half getting there, and that included a solicitor and a LOT of fighting etc too (not to mention all the years before when I knew something was not right and thye told me I was basically imagining things). And now, still not all aspects of his statement are fully carried out, but the new SENCO is actually very good and I don't want to get on her wrong side by pushing things too much. The improvements to his school life and hence our life as a family are colossal, so I am very grateful!
  12. Thanks Elanor. Yes, my son can cope a lot better now as well, and he AND his brothers now have a childhood worth having. Saying that, he has never had any bloodtests done, but then, that is an impossibility anyway (he has to be unconscious before that can be done...). I sincerely hope that his psychiatrist will feel the same way as your son's specialist! And ofcourse that he won't get any side effects, but then, that is the case with ANY medication, for anyone.
  13. My son has been non Respiridone for over a year now, 1 mg twice a day, and the difference it has made to our life's and our safety, is HUGE. Without it, I'd not be sitting here writing this. Fortunately, he does not seem to have had any side affects from it, though the pshyciatrist did keep an eye on it for some time. What I just read about the two year maximum usage is very worrying, as he has ODD as well and is incredibly strong and I couldn't manage him without it at all, not that and keeping his brothers safe from him... A quick edit to add that the respiridone has made him much easier to go to sleep at night, he now sleeps earlier, lasts through the night and wakes later; another life-saver for me!
  14. D has never had a party, we usually just go to the cinema and that's it (which is a treat due to the distance involved). The rest of us would love to follow it up with some bowling which is next door to the cinema but as he can't cope with that... As I say, he is 13 now and has never had a party (his brothers have) and I don't see him wanting one in the near future. The sad thing is also that as he has no friends, we wouldn't know who to invite anyway (we have no other family either).
  15. Oh yes, be very careful with what PP says as true, because it may not be so at all! After one very upsetting session with PP I contacted IPSEA and just about everything this woman from PP had told me had been untrue and some even downright illegal. This was a pity because she did help me in the beginning, for which I'll always be grateful, but I won't let her 'help' me ever again as she was too clearly only trying to pave the way for the LEA to do whatever they wanted to. Thanks to IPSEA this didn't work!
  16. Nope it is during lunch time so the teacher is free. Specifically asked to see the head too but for whatever reason she couldn't and there were no other times either. Oh well, I'll see how it goes, my suggestion to the teacher of putting the boys at different tables (which is such an obvious step I can't understand how the teacher could not have thought of it over the last three weeks...) has made a big difference so hopefully the worst is over.
  17. My youngest is being bullied at school, and I have been trying to get an appointment to see both his teacher and the head at the same time, but because of my AS son I can only do this during school time. I cannot talk fully to the teacher and explain more complex matters while my AS son is there, and I have no-one who will care for him for even 5 minutes. I cannot leave him alone either, and certainly not with the youngest (due to his violence). School said no, I can only get a joint appt after school. Unsuitable I am now seeing his teacher tomorrow, but not the head, I will have to see here seperately... Is there any regulation or other that can help me force the issue?
  18. Does this also mean that they don't have to provide TAs for after school clubs? Interestingly enough, when I told my son's school that it would be discrmination under that act, they suddenly offered to provide a TA for a club that he wanted to do .... and then I discovered the club wasn't even on anymore this year For a child who gets 30 hours 1-2-1 I would say NOT providing a TA would fail the reasonable adjustment anyway, but as you are just saying it doesn't cover them...?
  19. My AS son is also dyslexic, as I taught him to read and write myself (he was home educated till year 4) I soon noticed!
  20. Have just sat here for the last 20 minutes reading this thread, even though I should really be doing something else... It is such a complex topic, and I think everybody is right, but it is how to balance all the issues. Those of us who give their kids a balanced diet within the child's boundaries/abilities, are already doing all they can. But then there are also parents who'll give their kids the cold leftovers from MacDonalds from the night before... My greatest concern is why are school lunches still so ######? My children still won't go near them because my kids themselves feel they're so unhealthy... and that is for the main meal. What about all those desserts? They are mostly pure ######, unless there happens to be yoghurt (depends on what type too though, most of them are loaded with all the wrong stuff!) or fresh fruit. And as for cereal bars passing the patrols, most of those are way high in calories and fats, usually worse than a mini roll. And if food is suddenly so important for the nation (it is, I do agree!) then why is the hopsital food so totally inedible and completely devoid of anything healthy? I am concerned about the children being indoctrinated in a sense, as they cannot always see the overall picture, esp not our kids. Also, concerns re food issues like this can lead to eating disorders, which are already on the increase along with self-harming.
  21. Off the top of my head, yes diabetes runs in families, so there is a higher risk of developing it. Exact figures? I doubt anyone knows, as they are still somewhat unsure what causes it in the first place. What to do to avoid? All the general good health stuff, like don't smoke, don't drink too much, and especially do not be overweight. For exact info though, check out: www.diabetes.org.uk (the diabetes UK website, but it doesn't seem to be working properly right now), and I have just come across this one, though have no idea if they're any good: children with diabetes
  22. Flutterfly, how many injections is she getting? They normally work it so there is no need for injections during school time. Also, you can ask the nurse to adjust the dosage so she is running a little bit 'high' for a week or so, so everyone can adjust to her being diabetic without having to worry overmuch about hypos. There are also booklets you can get from Diabetic UK, to give to other people like the taxi drivers, so they can learn more about it and recognise hypos. Does she have a statement? If so, make sure they amend it to include her diabetes. Has her school had children with diabetes before? If so, that would help, though they'll need to be aware that because your daughter is autistic, the 'rules' change somewhat. Is it an option for her to stay home for a few weeks so you can all get used (a little bit anyway) to the new situation and adjust, and to give time for meetings with the school etc?
  23. Yeap, there is. My son has Asperger's, ODD and diabetes type 1. He has had diabetes now for 8 years, giving me experience from the age of 5 to 13. I haven't often got the chance to come on the forum (which is addictive and hence a quick 5 minute check never seems to work), so pm'ing me and then going via email will give you the quickest response. I am happy to help where I can, though others are right also and you need your own diabetes nurse, dietician etc, but I also know they can be hard to come by! Chocolate, it does indeed depend on your child's insulin regime, which I assume at this age is 2 a day? A good way to do it is to say he can get some when his bloodsugars are low. At least this sometimes works for me, as exercise lowers the bloodsugars and hence my son (who is not of the active sort) will actually get some exercise because he wants the chocolate.
  24. Thanks Phasmid ! That was some very good information, just what I need. Now I can go back to the school to push them a bit
×
×
  • Create New...