witsend

OMG thanks for that I can see a doggy Xmas ahead But the thought of one of them dying is already making me nervous Luv Witsend.

Hi Dobbie - welcome to the forum. My son was initially dx with DCD (Dyspraxia) and while I accepted this dx I always felt it wasn't the whole story, he was also then dx with dyslexia, DAMP and semantic pragmatic disorder. Basically he gathered diagnoses and still it didn't seem to be the whole picture. It was only really when I did my homework on ASD's and thanks to brilliant support from parent partnership in my area that I pushed for dx of AS and recently got it! Now that he has been dx with AS it's a great releif and a lot of things have fallen into place, including much more support form school and increased banding in statement. My son has a fantastic imagination - i also used to think he couldn't have AS because of this, but have learnt since this is not true ( the issue re imagination in ASD's is a complex one even the professionals can't agree on - as you've already found) my son is often unable often to forsee the consequences of his actions and in this way his 'imagination' is limited but as for having fantasy worlds, unusual ideas etc he's streets ahead. How can the school be saying they will treat him as ASD but then so obviously not doing so (detentions etc) is a puzzle. Sounds like the school are not being helpful in the slightest - do you have the option of changing schools? Also for someone to tell you they don't like to statement children because of area sorry but that is nonsense! My son's headmaster tried to fob me off by saying statements were being phased out so there was no point asking for one, that was over four years ago!! Since then (and the headmaster leaving) my son has got a statement and has had his banding incresed twice! While there is still talk of statements being phased out it still has not happened! Please do not take no for an answer when you feel it is wrong. Go with your gut feeling and do not presume any of the professionals know more about your sons problems than you do - in my experiance thay don't! This forum is great to learn from and to share things with. Good luck - witsend.

Hi Kerre - just read your post - my son is wanting a PSP for Xmas (he's an avid PS2 fan) so I'm just interested to now why you don't rate it? Expensive if it's not worth it! Luv Witsend.

Thanks Kathryn - I'm guessing you must have been very young when your Mum died, can't imagine really how awful that must be. I suppose we expect the parent left to do the job of both? However old we are I think we always relate to our parents in the same pattern we did as kids Have you not told your Dad about your daughters dx because you think he won't understand or because he'd be unsympathetic or some other reason? Sorry if that's probing too far or is a really stupid question, just with these difficulties with my own dad I'm really interested in other peoples stories, of 'how it is' for them. On a positive note (hopefully ) i have given my Dad some info re AS to read (see sweetdreams post) tonight and he did actually seem a bit suprised but welcoming of it! Fingers crossed eh? Take care - luv Witsend.

Thank you sweetdreams - i have just looked at the link and thought it was great. Am busy printing it off at the moment So now all I have to do is pluck up courage and/or find a diplomatic way of giving it to Dad Any ideas?? Luv Witsend.

Thank yo for your replies. Simon I've read your post through a couple of times since and since I've calmed down a bit I agree your right, I think maybe I have been a bit inconsiderate and harsh on my Dad I still do think he could make the effort to come for Xmas dinner (he knows I don't expect him to stay all day) for the sake of the kids really. I suppose I'm worried my son will think (know) that Grandad isn't coming because of him, although I don't know if that really is the case, but it feels that way. But in any case I'll think of something. Your right I suppose I forget how difficult it must be for an elderly percon to cope with kids with challenging behaviours and I think my Dad often does feel frustrated himself that he doesn't know how to handle it. I guess really I just miss my mum Anxiousmum I'm a bit like you I don't like to let things fester and my first inclination is to go round and have it out. Now I've thought it through though I don't think I'll say anything for the timebeing, I may wait 'til he raises the subject first (unless it gets to xmas eve and nothings been said ) I'm glad you confronting your Dad lead to improved relations between you to you for being brave. Thanks again - luv Witsend.

Oh let her find out for herself and then don't be in!!

Hi Tez, don't worry too much. My son had an OT ass recently after a very long wait too and this included the sensory questionairre. If a lot of your concerns are to do with sensory issues then this questionairre will probably help you to highlight what you most need help/guidance with, it is quite a long detailed one. Hopefully the OT should go through the results with you and also be able to highlight problem areas with you. The type of interventions needed will be indicated by the results and the OT will tell you about them. In the meantime I'd just write a list of all the things you're concerned about but try to make them practical and concrete (eg he can't tie shoelaces, he can't use a knife and fork rather than he struggles with fine motor skills), that way you will hopefully actually get the help you need. We were also told OT's time is limited and they could only offer guidance for interventions at home etc rather than ongoing therapy, but now my son has been seen the OT's told us we can ring her anytime and my son is to commence on a 10 week strength programme, Ot has also been into school, so I think once your in the system you have increased access to it. Good Luck - Witsend.

Hope this post isn't gonna turn into too long a rant feeling really fed up and confused and just want to offload this. Basically we have had a few upsetting incidends lately around how my father treats/speaks to my ds. My father is in his 70's but quite fit and active, he is quite conservative and old fashioned I suppose. I have always told him about what is happening with my son including telling him when son was dx and explaining AS to him as best I could. Trouble is my Dad doesn't seem to want to know, to the point where I have practically stopped telling him stuff. He still treats my son as if he is NT and he can be quite strict and curt with him at times, when this upsets my son and he reacts (my Dad would say over-reacts) in a typical AS way (you can imagine ) my Dad gets angry and upset and shouts at him to stop acting like a baby etc etc, yesterday when this happened my son just ran away and I found him crouched in a ball all stiffened up and it was horrible In the meantime my Dad was just huffing and puffing and saying "Well you've got your hands full with that one" My Mum died two years ago, she was so close to me and my son and she was fantastic with him, it makes me so sad that she's not here for my son anymore and his only granparent who is around is slowly but surely alienating him. My son thinks the world of his Grandad and has always been respectful and very kind towards him, I don't think my Dad even realises how hard my son tries around him and sometimes it makes my blood boil The latest thing which is what I was gonna post about in the first place, is that my Dad (who always comes to us at Christmas) has said to my sister he doesn't think he'll bother "going anywhere" for Christmas this year, he'll just spend it with a mate of his from the pub!! I an ###### incensed. Mum died two years ago just before Chrismas and the following year my husband and I split up so he wasn't there for Christmas either, now it looks like my Dad aint coming this year Really don't know how to feel or what to do. Should I ask my Dad directly about it or wait til he says something? And do I tell him what I really think (that he's being selfish and I'm really disappointed in him) or do I just act like it's all OK to prevent a row or any bad feeling. My Dad does not talk about feelings anyway! Anybody else out there got similar problems and or advice? Luv Witsend.

Hi Mandyque - my ex has not seen my children for six months now. I do not expect (or want) him to see them in the future either! I have a 10 year old (AS) son and a 3 year old (NT I think) son and an elderly father and a dog and a job! It is not easy I also struggle with childcare, I don't really have any respite or social life. I live in fear of the day I might not be well because God knows what would happen! All I can say is that the kids do make it all worthwhile (despite the fact that that they drive me bonkers as a rule!! ). It is hard but if we weren't here for them then who would be?? Sorry to be personal - I don't know anything about your ex - but I'd say don't hate your life because of what someone else is or isn't doing, get on with it you've only got one and if he is only adding to the stress cut him out! It is easy to feel resentful when exes are not helping but I've found that resentment fades away if you accept they are useless and sort it all out for yourself and your kids and exclude them from the scenario! Good luck- take care of yourself - luv Witsend.

Sorry scojos not exactly sure what you're asking - but advice I wish I'd been given about a 'special child'? Well that list would be pretty long but I guess would vary according to each individual, what springs to mind (and I hope this isn't too cheesy or offensive) is it's not your fault! Take care -if you post again and be a bit more specific I'm sure you'll get great advice here - luv witsend.

Thanks Guys

Just wanted to share good news. Had sons annual review this morning. This had been delayed by several months due to waiting for various reports and dx. Two days ago school told me guy from LEA wasn't coming (we very much needed him there 'cos we were asking for more funding) and the cons report still hadn't come through (he saw son on July 1st!!). School were very disappointed by all this and I was fuming Wednesday evening and all yesterday I had to make various calls and eventually got LEA guy to agree to come and then had to track down cons and get him to promise he would fax his report to school. By 2pm yesterday report still not arrived, eventually I went and plonked myself at child ass centre until report was actually faxed Sooo today we had all the right people there and all the reports in and guy from LEA is going to recommend sons statement is increased to band D by the time he goes to high school Also school have taken on board my other suggestions which will hopefully make life easier for my son. What a relief, feel jubilant and wanted to share it - as always the advice I get from this site has contributed to my (our) success today. Luv Witsend.

Viper sorry too to be late with the congratulations but well done . Viper by name eh? Luv witsend.

Lauren <'> to you it must be dreadful when the school are behaving like this, it makes me see red . Sounds like your getting good support from IPSEA. I just wish you the best of luck and to you for not giving up - hang in there - luv Witsend.

The first time my son met his consultant he asked him what he wanted to be when he grows up - my son said " a nazi"!

Hi Lauren - just wanted to say we were refused a statement following assessment and I was all ready to appeal, (my son at was only dx with dyspraxia I think at the time) but having got advice from parent partnership I decided not to appeal but to ask LEA to reassess my son a few weeks later when I had gathered more 'evidence'. This was so the best plan it turned out because I think I'm right in remembering that if you loose your appeal it's quite a while before you can go through the procedure again! However I know you said they are refusing to even assess your child so I've probably not been much help. Do you mind me asking is it you or the school who have asked for assessment and if it is you are the school backing you up? Good luck - luv witsend.

Thank you all for your replies - must admit I feel a bit scared now about what the future holds I had hoped my son would do less of this kind of thing as he gets older but the reverse seems to be true. I am going to town today and will try to get the Luke Jackson book - I think my son desperately needs to know there are others 'like him' so maybe that will help a little. I must admit the more attention I pay son when he is saying this kind of stuff the worse it seems to make him because he becomes so focused on it and anything I say whilst he is in that mode just seems to make it worse, also then I get very upset and then he feels guilty he's upset me. I tend to wait til he's calmed down and then talk to him about how he feels, I have told him he can tell me anything however distressing. Thing is once he's offloaded all his stuff he's usually a lot better, the other night he started getting very stressed with homework and this lead to him saying the stuff about wanting to die he also came out with a lot of stuff about hating school, "being stupid" and said he doesn't understand anyone and no one understands him etc etc. It was heartbreaking to listen to, I said perhaps we should go to the DR's and talk about how he's feeling he rejected this idea at the time but this morning said he'd like to go, the thing is this happened a few days ago and I made him promise me that when I ask him how schools been (he usually says fine and looks like he means it) that he would give me an honest answer even if he thinks it will upset me. Each night I've asked him he has said schools been fine honestly and he once again seems OK. I don't know wether he really is stressed at school most of the time or wether he just over reacts when he has had one bad day and then outpours all this stuff. He does quite often hit himself though and this really upsets/worries me, but again it goes on longer the more I pay attention to it and tends to stop fairly quickly if I pretend to ignore it. I feel pretty horrified at medication at this age, I do not mean to offend anyone who's kids have meds I am sure no one does this lightly and that if you and have gone down this road then obviously it must have been right for your kids at the time, I know everyone on this site is constantly doing their best for their children and I respect you all for it. I suppose looking at this problem is very difficult for me right now because I am still really coming to terms with diagnosis, I do feel overwhelmed by it at times We have an annual statement review meeting on Friday and I think I'll bring this up there too, the school have actually been very good recetnly and they are going to recommend sons banding be increased again. I had to ring the consultant yesterday 'cos he still hadn't submitted his report he said he will fax it today and when I asked him if it confirms the diagnosis of AS he said it did and also he had dx ADHD!! Just want to cry, think my son now has every diagnosis going! Anyway I'm rambling a bit now and going off the original thread I know but like I say just feel overwhelmed at moment. Thank you for listening and replying - this site has become my number one support mechanism Luv Witsend.

Hi all - my 10 year old son (AS) has for quite a while now said distrerssing things when he is upset/stressed along the lines of "I don't deserve to be alive" "I should just kill myself" and more recently talked about cutting/hurting himself. He has never actually done anything in practice except for one time when he told me he had cut his knees with a knife and on inspection what he had actually done was made indent marks on his knee with the butter knife Although I find this really distressing I have so far tried to not make too much of it as I suspected he was really just attention seeking and being dramatic (is that awful of me?). When I told the consultant about it a few months ago he said it was just my sons way of verbalising that he's feeling upset and that I shoudn't react to it! But as my son gets older and these things he says are getting more frequant I am starting to worry more. Since he was diagnosed I have read that people with ASD are more vulnerable to menatl health problems and that does make sense to me. Does anyones elses kids say this sort of thing and have they gone on to act on it? Should I be right to be concerned or do you think I should carry on trying to ignore it? I have read other posts that make referance to cahms, I'm wondering wether this is the sort of thing I should be asking about now? Does every area have a cahms and how do you go about getting a referral? Does it sound like I need to do this? Any advice would be appreciated - luv Witsend.

Hi Flutter - I know what you mean some of the terms used to describe our kids feel at best patronising and at worst offensive. Just to keep it in perspectivve though I try to remember that they are just words and what is acceptable today will be laughed at in the future! I used to work in a hospital for people with 'learning disabilities', when I first started the term 'mentally handicapped' was used and accepted, then it changed to 'learning difficulties' and then 'learning disabilities' may have changed again now for all I know. the people (aka patients aka residents) who lived there had various labels which also changed during their lifetimes (mongols/downs syndrome, retarded/idiots, schizophrenic/bi-polar etc etc) one unit still bore the name 'for feeble minded women'! I find labels interesting because they are so much of their time and reflect the social cultural views and attitudes of the day, just as diagnosis criteria do too. Many of the older people at the hospital I worked at had been placed there at a very young age because they were illegitemate or because they had comitted a misdemeanour, over time they became insitutionalised and so exhibited behaviours which fitted into the diagnosis they were given. (Does that make sense?) Recently when my son was behaving 'oddly' (ie being himself) on a train journey I overheard a man talking on his mobile phone he was busy telling the listener how bl**** awful the journey was because he had to site near s"some retarded urchin"!! Retarded Urchin - I ask you - he meant my son How angry was I?? But have to admit I have since shared and laughed at this story because his use of language was so well laughable I think outdated beurocracy hasn't had chance to catch up with the modern world and the relevantly recent terminology used to label and describe our kids, I foud that out when I filled in DLA forms, it does feel demeaning but it's ignorance on their part and not a real reflection of how our kids are in my mind. Disability is whatever society decides it is, if we lived in a place where 'autism' was the norm I guess we would be disabled eh? Hope your chilling out now and enjoying the choc. Good luck with the rest of the dreaded NVQ (what is it in?) Luv Witsend.

Yes they do suprise you sometimes. I hope he has a great time Lauren.

I know, I know......Rumplestilstskin!!!?? I never clicked on 'til I read this thread either, and Suze I can sympathize, when I first started work in nursing I quite willingly went off in search of 'diabetic eggs' as instructed!! We live and learn eh? Luv Witsend.

Yes phasmid - that helps! Thanks I found that really useful, even though I feel I've 'chosen the right school' now, I know I need to ask lots more questions and prepare the way for my son. I am planning to arrange a meeting with the head of the high schoool to ensure I've made the right choice (God knows what I'll do if I haven't!) I've learnt that the more proactive we as parents are generally the better for us, school and child. Suze - hope you get sorted soon there's nothing worse than 'not knowing' is there? PS How's the potty training going? Luv Witsend. xx

Just wanted to add ASDA sell 'egg' lights they are (obviously) egg shaped and are battery operated, they change colour and give off a soft glow. You get 3 for around 10 quid, don't think they'd be too good as emergency lighting but kids love them as a night light

Now I know you're all waiting with bated breath to hear about what high school I've chosen for son Just wanted to say we went to rural (high percentage of SEN) school open evening tonight and things have become a lot clearer. I got a sinking feeling after about 3 minutes the school was dreary ill equipped and poorly attended. I spoke for a while to the SENCO assistant who ran out of things to say after 5 minutes and then met the SENCO who did nothing to attract me to the school and even seemed a bit embarrassed herself re lack of facilities/opportunites the school offered! I was dreading son turning round and saying he loved the school but thankfully he was also suitably unimpressed and just gave it 3 out of 10! So thank goodness we are now able to make a decision and feel it is right. It's scuh a relief!! All I can say to any parents going through the whole high school angst is go and see the schools you're considering before you agonise about them, this may seem obvious to the more sensible amongst you, but I was in torment for ages about the whole thing when I needn't have worried because tonight has just sorted it all out. Luv Witsend.