deeejar

I don't know which forum to post this, so apologise in advance if it is in the wrong forum. I am basically fed up of my husband's attitude to our 11 year old son who has ASD/ADHD. Ds is very high functioning but also has alot of emotional difficulties and can be very explosive if not managed properly. H knows all this but seems to hate ds. We also have an 8 year old with autism who is more obviously autistic, and h apppears to have more understanding with him, but always leaves it to me to deal with when ds2 becomes oppositional, which is increasing. Me and h do not have a great marriage even without our two boys, however the way he deals with ds1 is really driving in the final nail. Yesterday for instance was swimming day, but h changed his mind at the last minute and therefore upset ds1 who reacted violently and by not eating dinner (very sensitive area). He then, after I had told him he was being unfair (I was gobsmacked) said he would take them. So the boys went to put on coats very excited, and again H says no he can't take them. I was fuming after this, and extremely upset. I really feel that this is emotional abuse of my boys and I have told H that I want him to leave. But I am so worried about the decision I have made I really think he makes life unbearable for ds1 and things would be easier without H. Also petrified about how I am going to cope alone....

Hello everyone! I am not a brand new member here, but have been away from here for well........years! Very anti-social I know, but I do admit to having many asd type characteristics so can only say that I just could not post unless I had to. I am hopng to overcome that now, but well, don't really know what more to say about that one, except sorry and will make more of an effort from now on. Anyway I have two boys on the spectrum, and possibly another one. Have been refused assessment like so many others right now it seems! i am riding by the skin of my teeth at the moment trying to get my appeal in by the time limit but so difficult with packed days, non-sleeping children and husband that does nothing to help....but that is another topic altogether..... So stressed, and glad to be back!

I feel like this, alot, when things are getting too much for me aswell. I find it helpful to make a mental plan of what I need to do, in a way that flows so that the order reflects the way things are arranged around the house. So for e.g. I will do so many jobs in the kitchen, with a now, next, later schedule, and the room next to it in a similar manner,etc. I would then give myself a reward not connected with my distraction/obsession, possibly chocolate, and afterwards continue. This way I accomplish more in a day. On a particularly bad day, I just do things that make me feel happy, until I start to feel better. If I have a deadline, it helps to think of the day of the deadline and to have a definate plain of rewarding myself in some big way when I get to that day. Sorry if that wasn't helpful. By the way, I can't even call my husband by his name most of the time, I have to go up to him and tap him on the arm, how wierd is that!

Since finding out that my son is autistic, and all the reading and thinking about the symptoms it involved, I certainly recognise alot of myself. I am still affected to quite a large degree, and prefer to chat on forums, actually that is the only place I do chat. My dh is the most understanding person I have ever met, because he understands my need for solitude and just lets me be. I don't choose solitude, it is how I have to be. I become anxious, panic stricken even, when people are around. If I am forced to talk to people, I find it exhausting, and need alot of down time afterwards. I have grown up watching my sister who has the most fantastic social life, and wondering how she does it. I went to university, and thought I would get a chance to practice social skills, and that maybe I could change. I actually believed the reason I couldn't find anyone to socialise with was because I was better than everyone, , now I can see how arragont I was, and still can be. I soon found that at uni people began to notice wierd things like my inconsistent eye-contact, and that I never acknowledged anyone if I bumped into them 'outside' of uni life, such as out food shopping etc. People begain to comment that I averted my eyes, and just looked through them. They also noticed my strange picky diet, my obsessions, my tendancy to not sleep at all (although I covered this up well, becaues it was quite studenty). and my growing alcohol dependancy. I was also very socially gullible and alot of other students stole from me, but I thought friends 'borrowed' from each other, and shared their belongings, . Anyway, I have felt all my life that people were picking on me, that no-one understood me, and why the hell does everyone lie to me. I watched soaps, etc, to get some idea of social functioning, but real life was not like that, and I could not work out why. I had, and still do have, scripts of conversations that I plan to have with people, and it is difficult to 'organise' a conversation for me. I also make lengthy and detailed plans of everything I do in my life, the journey to make to the shops, what order to do things, and I hate to be disturbed. I still hate seeing people in different places than I expect them to be, but have now built up a repertoire of 'small talk' conversations, but they can never last for too long. I usually tell people I will call them, that is socially acceptable I find. I did all the classsic things as a child, I use to stare at floating particles, and swore I could see cells, and at one time had to see a psychiatrist, but refused to see him because he had a voice that hurt my ears. I also had anorexia as a teen, and lots of other strange obsessions, but so did lots of teens, except I had no friends. My mother accused me of hating her, quite often, and I found this so hurtful, because I loved her dearly. My sister and brothers think I am cold, but I never considered myself to be. I had an amazingly high pain threshold, and could never understand why people cried so much when they fell over, and thought my sister exagerrated everything. Well I am starting to feel uncomfortable with such a long post, and have to stop, but thanks if you managed to read it. I suppose I am saying that I know I am on the spectrum, and it still affects me today.I don't see the point of getting a diagnosis, however I do feel quite depressed sometimes, and sometimes don't leave the house for weeks, my dh does all the school runs etc. I only ever go out if I have to take my children to medical appointments etc. My life is affected in a big way, but I have got used to the way I live.

My 5 year old is like this aswell. We are on a waiting list at camhs at the moment, doing the waiting thing. HE has problems with a crowd and goes crazy thinking everyone is bumping into him. He gets quite physical aswell, which is a major problem. He told us he was going to phone the police the other day, because we keep 'disturbing' him! I wonder what they would make of that! He even accuses the baby of hurting him. He appears to be hyper senstive to touch as well, which doesn't help. I don't know what to do about it either. I can definately sympathise though! <'>

Well, I have a proposed statement for my 3 year old. Not quantified, not all of his needs are on it, vague terminology, etc etc. So will have to look at it carefully again. So happy to have got one though, one less tribunal for me! Now the hard work really begins. x

Phew! Well done bluefish. I have my meeting next Tuesday. I hope you get the proposed staement you need. My draft statement is extremely vague, with lots of 'access to' and 'oppurtunities for'. I hope they don't keep you waiting too long for the new one. Lots of luck!

Sorry Jen, I have never had a home visit from CAMHS, so don't know about that. I have got an appointment for my ds in two weeks. I am going through statement, and I think my LEA are disputing the diagnosis. I know I sound cynical, but can't help it! I tried to see the consultant psych for months before, and was told that it was not possible. Now, all of a sudden, 2 weeks after being told my ds is going to be referred, hey presto an appointment! I was told I would have to wait until my ds is 5, so I suppose they changed the rules just for him! Lucky me! I am tempted to not go, until after the statement has been finalised, I can just keep cancelling, the kids always have the snuffles anyway! I hope that your dd really plays up on the day, and is much worse than usual!

Well, I wrote to the ep, and she said it was too late to change anything, I wrote to her boss,who after alot of back and forth communication, has said it will be discussed after the draft statement, if given to my son. I think they are going to use the falsified report to refuse to issue my son with a statement, Also, I have been trying to find out, but with no success: Is it legal to write a joint advice with a pre-school home visitor(portage), and clinical psychologist? That is what the ep has done, I can't find any information about it, and no-one seems to know the answer. I have been told that after the panel meets, if I wish to discuss the matter, then the ep will meet with me, and also attending will by the pre-school home visitor and the clinical psychologist. Personally, if they decide not to issue a statement, there will be no meetings and Iwill apply straignt away to tribunal, with a private ep report,

Good luck Jen, thinking of you!

Ok, I have been asked to give my LEA the choice of school for my son, and I have not yet received the draft statement. I did not expect this. I told them the school I would prefer, but not sure I have done the right thing. Is this normal procedure, What should I do? I can't get through to ipsea or nas. This is the email I got today: Dear Mr & Mrs xxxx Thank you for giving me written confirmation of your school preference for xxxx, which will be presented to the SEN Panel next week. It was necessary to ask for your preference so that when the draft statement is prepared I can consult with the school(s) of your choice. The appropriateness of school placement is determined by the SEN Panel, who would have considered all the advices received. Please let me know if you need further clarification on this matter.

Could someone please tell me, where in the COP, or anywhere it says that LEA,s have to acknowledge "other providers of support" ? Please, would much appreciate it, thanks!

Hi, thanks for the replies! I feel a bit better about the report now. I am just so worried becuase my lea is one of those that is not giving out statements for less than 18 hours. School action + has been extended to 18 hours, and only those that require support beyond level 4 now get a statement. So am very worried. I know my boy can not cope without constant supervision, doesn't understand anything simple instructions and most of the time doesn't pay attention anyway. His language is all echolalic, although he does have some words. oooooooooooooooooooh! I can't bear for him to go to school! He is still my baby, only 3 years old, and like a toddler still. He is so vulnerable most of the time, and does not know how to stick up for himself at toddler groups, or special needs drop-in groups. He could never cope in a school. Anyway, no matter how good the EP report appears to be, it is never going to be enough support for my son, I am sure you all understand how I feel.......... Thanks for the replies! x

In the educational psychologists advice for my son's statement most of her recommendations are for inclusion into an IEP. Under educational provision she has just said "xxxx will need full-access to the foundation stage national curriculum, differentiated to meet his individual needs." She then goes on to mention some strategies for IEP, such as visual timetable, choice board, social skills teaching, speech and language therapy, home-school diary. I think the inclusion of these things for IEP is a bit odd, and it should be part of his provision. She then mentions for 'staffing': "XXXX would benifit from support from a staff skilled in working with children with social communication difficulties. XXXX would benifit from a high staff ratio that allows opportunities for one-to-one and small group work". That is the sum of all provision she has recommended. I think it sounds like he needs no help, and so the statement will be useless. I am panicking aabout the draft statement. I wrote to her with my objections and she said that it is too late to change her report. This is just such a wishy-washy report isn't it?

or err today!