witsend

Hi Sallya- sounds like you've got a lot on your plate at the moment. <'> It sounds like lots of things are going right and you've done a lot to get it that way so try to stay positive Good luck with the tribunal, you're right to point out that you don't want to have to rely on having good professionals in the future cos as you say some aren't that good and then you may well need the statement more watertight. Hope you find a bit of time to yourself where you can just chill for a while Take care - Luv Witsend.

Hi Amanda - nice to hear from you and good to know things are going well for you all at the mo Good luck with getting the computer sorted out. Luv Witsend.

Fabulous!!

Hi Forbsay - we've got a similar situation to yours here. 3 year old (NT) terrified 10 year old (asd) loving it. Went to little ones nursery bonfire on Weds and he spent the whole time with his face in my jacket shouting I WANT TO GO HOME at top volume, 10 year old was running around having a great time! Will prob get a few fireworks for 2moro but may just take older son to local bonfire don't think little one coluld stand another one. Luv Witsend.

Hi - meant to post this a few days ago but what with the swimming/OT drama didn't get around to it. I posted recently about my son having an outburst at school during which he alarmed everyone by threatning to self harm. Since then the head reffered him to camhs and when I followed this up they told me one of their 'play therapists' would be writing to us soon with an appt. When I was talking to the head and sons support teacher about it all I had talked about how playtimes were most stressfull for him and they agreed, I asked them how they could help with this and TBH they were a bit clueless so I asked could there be a quiet place my son could have access to if needed during playtimes and was told "not really, we don't have anywhere". They suggested instead he goes to find support teacher if needed, well I had my doubts about this working in reality, I imagine it's quite hard to get past the welfare staff and then to find the support teacher, who he's not fond of anyway, and then verbalise his feeling to her , welll you see what I mean? However I accepted it because I was worn out and didn't see the point in arguing. The second thing I asked about was some social skills training at school but was told again no, they don't do that and don't have the funding for it. So again I felt a bit deflated but said no more. Anyway after this meeting I more recently had follow up meeting with (new) ed psych and suprise suprise, in our discusssion (just me and him unfortunately) he suggested son should have a quiet place to go to at break times if needed and should have some social skills stuff via school! (and yes they do get funding for it!!) He also felt a play therapist was perhaps not what would be most helpful for my son or me (yes he actually mentioned me! ), which is rather what I thought too. So in short he's contacting camhs and going to talk to head. Feel good that my confidence has boosted a bit now and maybe sometimes I do actually know what I'm talking about after all . What with this and the OT being so understanding we're on a roll (hope we don't fall off eh? ) Luv Witsend.

Thank you all for giving me the courage of my convictions Have just rung the OT dept and actually got straight through to the right person and discussed the situation with her. She was really nice and understanding and agreed it was best for him not to miss swimming because he likes it and it's such good excercise she also said they will be running another group after xmas and he's welcome to join that one In the menatime she's going to send us lots more homework so we can practice those animal walks at home Thanks again to all of you - luv witsend.

Hi - we're in Lancashire and yes Mischief night has been alive and well since I was a little girl (ahem, quite a few years ago). When I was little it mainly involved putting the sugar in the salt cellar etc, but unfortunately nowadays it's a bit more sinister. Round here there is usually alot of trouble on some of the estates with 'kids' causing chaos and using it as an excuse to bascically terrorise and vandalise thier neighbourhoods. None of my freinds who are not form 'round here' have ever heard of it I thought it was a lancashire thing. Luv Witsend.

Hi - yes I agree with the others apply now. You do not need a diagnosis, in fact I was suprised at how little attetntion to this is given in the application forms. The emphasis is definately on showing that your child needs more care than another child their age. You will have to back up what you say with reports from people involved with your child but the DLA people will send for these. And you can put that AS dx is suspected and assessment is ongoing prob by the time DLA get back to you, you may have a firm dx anyway. Good luck - Witsend.

Thanks guys I'm glad you said that 'cos it is my gut feeling too. Don't think there's any chance of OT changing times/dates 'cos it's a group thing and they act like you should be grateful you've got an appt in the first place. Still you never know may just ring them and see what happens.... Luv Witsend.

Hi Bid - I suppose it depends a bit on how you define 'needing' DLA. I guess if you're just talking money then those who are well off do not really 'need' it as such but if you mean how many AS kids meet the criteria then I think it must be the vast majority in reality. It had never really crossed my mind to apply for DLA until I found this site and at first I was pretty sure we wouldn't get it I even felt a bit embarrassed about applying. But when I started to fill the forms in it made me realise just how much extra time and support my son needs compared to other kids his age. I often think we don't realise how much we support our kids in so many ways and actually getting DLA is like some kind of recognition of this if nothing else, plus the extra money does come in handy, I know my working hours are restricted becauseof my son. I do tend to think now that a diagnisis of AS should qualify automatically for DLA, then it should maybe just be the rate which is decided on individual circumstance/need. But I also think kids with AS should all have statements too! God I'm getting to be an old radical eh! Luv Witsend.

Hi everyone - did start writing this post about 3 hours ago but DS been so demanding tonight only just got back to it It's not a big deal really but in true AS fashion my son has is making it one and now my heads spinning. Basically son has just started today on a 6 week programme of 'strengthening' exercises via the OT dept. This means he has to attend each thursday from 9.15 'til 10.00 so therefore misses school for an hour or so. I was worried intitially that he's missing schoolwork (yr 6) but after talking to head about it and having waited so long for some OT input decided it was worthwhile. Anyway we realised yesterday that son would actually just (did I say just! ) be missing swimming at this time so I thought well that's OK son is OK at swimming and it's not the most important thing on the curiculum anyaway...However my son is now distraught . He says swimming is one of the only things he enjoys at school and he went on and on and on tonight about how awful it is he has to miss it and how cr*p OT is anyway etc etc. Now part of me thinks he is just trying to manipulate me and I am being soft for even considering cancelling the OT so he can go swimming and another part of me just feels sorry for him because he was so upset about it and I don't blame him for being sick of extra therapies etc which in the long run never seem to make much differance. Today at OT they had to do various animal walks!! and when he got back to school he had to wait for the rest of his class to get back from swimming hence making him the 'odd one out' again. He is at an age now where I think his own views do need to be taken into account and I did tell him I would not force him to do the OT if it made him miserable, but then of course he got all upset about that too! Apparently next week at swimming they are doing the diving in to save a doll bit which he was really looking forward to! And just to comound it all OT has sent home sheets of 'homework' (more animal walks ) he's supposed to practice in addition to regular homework, speech therapy homework and extra reading practice homework . God knows when I'm supposed to actually give 3 year old any quality time eh?? (scooby doo video again anyone?) So does anyone think? Animal walks vs swimming? Welcome to my world Luv Witsend.

Hi - not suprised you're ranting I would be too! Don't let them grind you down <'> to you and your daughter. Luv Witsend.

Hi all - don't worry am not about to put Ds up for adoption or anything (although there are times.... ) Was just wondring if anyone had any ideas about this. I have two sons eldest AS birth child and youngest NT adopted. I don't know if any of you have adopted but basically when you do you have to look through many childrens 'profiles' in the search for a child. I looked at lots of kids profiles (many ifnot all would break your heart ) and when I think back it is fairly remarkable how many of these children has ASD's. Now at the time of adopting I was unaware that my eldest son had AS (this was about 3 years ago) and I really was clueless about what ASD was. When I asked my social worker she seemed to know little more except to kind of warn me off these kids as they were 'autistic', and therfore very hard work and difficult to 'bond' with. With hindsight this makes me feel quite angry with SW, yes I now know "these kids" are 'hard work' but they are so much more than that and I feel quite guilty that i just accepted her words and didn't bother to find out more. It is of course ironic that my eldest son has since been dx with AS I suppose it makes me angry that a lot of these children in the care systen will be overloooked becasue of what ill informed SW's say to prospective adoptive parents! The other thing that I wonder about is why so many ASD children are in care?? then again maybe they're not, maybe (like many other children with 'disabilities') they are just more difficult to place than some other kids?? I don't know but would be interested to hear your views and/or experiences, luv Witsend.

Hi Reuby - I think most of us have felt how you're feeling now. I know i did even though by the time my son was diagnosed I was pretty much expecting it. If this has come right out of the blue for you it must be even harder <'> I remember when my sons SENCO suggested AS to me years ago now I first dismissed it out of hand, it wasn't even so much denial as I just thought she's got it wrong! When I look back knowing what I know now I realise this was actually just ignorance on my part, I did not know much about ASD's at all and what I did know was based on a few media misconceptions and opinions of (uninformed) others. The term autism just did not fit into my perception of my son and to be perfectly honest it frightend me a bit. However after doing a lot of research and talking to people who I could trust and who know their stuff (definately including people on this website) I realised that my son pretty obviously has AS and that he is still wonderful and intelligent and loving and funny and kind and annoying and a mystery and challenging! He is still all those things with AS just as he was before it. I hope that makes sense to you. I do not doubt my son has right diagnosis now (though it caused me a lot of angst at first) but I know now he he is still his individual self whatever label he has. Try not to worry too much about the long term future none of us can second guess it anyway. Give yourself time and keep posting here it really is a great place for support and information. Take care - luv Witsend.

Hi Lynne - sounds like you're a bit down at the mo <'> to you. Yes i know how you feel sometimes it feels like our whole lives are run around my son and his 'support networks'. I'm forever having to change my shifts at work or cancelling other events to ensure my son gets to all his appts etc. And you feel if you complain you're just ungrateful and selfish because your childs needs come before everything else! At the same time your aware if you don't tkae care of yourself you can't take care of your child properly either! It seems to me lots of well meaning professionals pay lip service to asking how you are and how you're coping etc, and we not wanting to be seen as not coping say we're ok because we know if we didn't no-one would do anything to help anyway! Sorry not much help but do empathise, do please sometimes put yourself totally first when and if you can, you do deserve it, and I'm sure you are brilliant with Logan and you more than anyone are the person getting it together for him and holding it together for him. Take care - luv Witsend. P.S Hope I'm right in presuming Logan is a 'him' and not a 'her'

<'> <'> <'> to you what a horrible day! Hope you're chilling out a bit now. your right it probably is a good thing your son exhibited some of his 'challenging' behaviour in front of the speech therapist, hopefully it will help people understand what you cope with constantly, although I know it must have been awful at the time. As for the Boots episode - been there - not pleasent - have some more of these <'> <'> <'> . Who knows tomorrow you may be again. Take care - luv Witsend.

Hi Puffin - I tend to agree with others I think I'd take my cue from your daughter and go at her pace, let it lie for a while and see if she brings it up, just because you got no response doesn't mean she didn't hear you. She may not feel the need to respond or she may take time to assimilate stuff. Perhaps just mention AS more casually from time to time so she gets used to hearing it and I'm sure if and when she needs to know more she will find a way to tell you. Good luck - luv Witsend.

Hi and thanks for your replies. Suze good luck with your secondary school choice and with camhs. Yes I'm the potty trainer (in more ways than one ). 3 year old now out of nappies during day (seemed to happen all at once) and we're now trying going without at night averaging about 2 out of 3 nights dry , how are you doing? Kathryn it is half term next week but I've got to work (son at kids club ) and have to go to court as ex trying to get half of house of me so a break from one thing but stress from another eh. Elanor nice to hear your sons play therapist is useful here's hoping ours will be too. Thanks again as usual when I post here it's great to hear from others who 'know how it is' Cheers Witsend.

Hi - had pretty awful past couple of weeks, not least because of sons attempted self-harm episode at school. Things are a bit better at the moment. Have just phoned camhs chasing school referral and they have told me a 'play therapist' is taking on the case and will be writing to us soon with an appointment Have also filled in and returned secondary school admissions form (another source of angst) so feel like I've got a breathing space again. Luv Witsend.

Thanks for all your replies - I've been going out of my mind with worry about this But head called me in again yesterday and she has phoned Camhs and stressed the urgency of the situation and I' meeting with her later today to complete a report/letter for them which she will send asap and follow up, she is hopeful this will get my son near top of waiting list and as you said Zemanski he will then only have to wait weeks instead of months I'm so glad school are helping me out with this one but I still feel desolate that my son is doing this and feeling so bad about himself I've started to feel scared all the time now my nerves are on edge at what he may do next. I've tried to talk to him about what's making him feel so bad but most of the time he clams up, although last might he did talk a lot about my mum who died suddenly a couple of years ago - he is convinced it was his fault . It is just the worst feeling when you feel you can't help your own child. Can anyone give me an idea of what camhs will do and how they can help? My son now thinks he is "mental" because of this referral and thinks they will medicate him, I could do with some more info so I can give him some reassurance. Thanks for listening - Witsend.

Hi all - posted not too long ago about my concerns re my son threatning to self harm, mulled over all the replies and decided to see GP re getting referral to CAMHS, however delayed this 'cos (typically) things seemed to improve since last post and I convinced myself I was making mountains out of molehills again But today when I went to collect son from school SA came out to ask me to go to office for a chat because there had been an 'incident' today with my son trying to cut his wrists!! , I had to wait for son to come out to join me and when he did he was obviously stressed and refused to go anywhere near office. I was v worried he would do a runner so went in to tell headmistress she then went out ot get son to come in (all nochalant!) despite me saying son was on edge of meltdown! Anyway then the circus began! Son did his best to evade capture and managed to outrun 4 teachers in the playground watched by gleeful muffia, at one point they lost him altogether and were getting a bit panicked (so was I!!). Eventually SA found him and calmed him down. In the meantime head was telling me how a 'minor' upset had led to my son trying to stab himself and cut his wrists at lunchtime and that the school are now very worried about him. Son eventually joined us and the head and SA were actually very nice to him, the outcome basically being we have all agreed referral to CAMHS is necessary. Now feeling bit mixed up. Glad school have for first time seen a meltdown fro themselves and that they have confirmed what i was feeling was the right course of action, also disappointed in myself that I've postponed the GP appt and apparently CAMHS have long waiting list Desperately worried son will next time actually do some (self) harm, this time it was with school knife which is not v sharp! Also know that rest of school mothers (excluded me a long time ago) will be having a field day once they get wind of it. Tried to talk to son about it after school but he wasn't prepared to go there Am gonna make GP appt asap wether son will come or not but don't know what to do whilst waiting Son actually quite cheery tonight and can't understand why I'm not!! Just wanted to get it off my chest, Luv Witsned.

Thanks Kathryn - so sorry you lost your mum so early on. I always spoke to mine more than my Dad too and it's so hard to accept the parent that'a left doesn't 'get it'. My Dad has not commented yet on the stuff i gave him to read but I'm gonna be brave and ask him about it soon Here's to a happy Xmas whatever/whoever's present eh? Luv Witsend.

Good luck with it Tez.

In case the SENCO who kept 'mentioning' aspergers even though I was not ready to listen and who subsequently fought for the statement with me, and even more so the guy from parent partnership who explained AS to me in such a way that I began to realise it fully and therefore accept it and who actually acknowleged that it was a 'big deal' and gave me space to rant on and then has since attended all school meetings with me and has basically been fabulous! Shame he's already married eh?

Yes - I know how you feel too anxiousmum - I went through all those feelings prior to diagnosis and I think it is the worst time of all (so far), on the one hand you want and need the dx to proove your not imagining it all and to get the right help in place and on the other your worried your landing them with a label for life that might turn out to be wrong . All I can say is that since my son was dx just over 3 months ago the main feeling which has continued is one of relief. Now even on the 'good days' I am sure his dx is the right one and several things have happened recently which have just confirmed it more so. The dx is not a magic key but it does help with getting more help definately. Busylizzie I know what you mean about willing him to have something wrong and yet dreading the 'verdict' my son does manage to hide his AS very well at school and I think that's partly why it took so long to get dx but if you do your research and have the courage of your convictions then I do think you can help a lot with the process of dx. Good Luck - hang in there - luv Witsend.