witsend

Hi Shaz, I posted a few days ago about this topic but haven't had any replies - started to think I'd made it up . I attended a talk on the ALERT prog by my sons OT a couple of weeks ago, I'm stilll not totally sure about what it all means myself (hence earlier posting) but will share with you what I know so far. The ALERT prog was developed by American researchers and is intended for use by kids with sensory issues (not just ASD kids). I had to fill in a long questionairre about my sons sensory perceptions and from this they determine whether your child has high/low levels of arousal/alertness. (Apparently they changed the name from Arousal to Alertness because a lot of their work was done with teenage boys! ) It's a bit tricky 'cos I would have presumed my son is often in a high state of sensory arousal but the fact that he seeks out activities such as spinning and rocking actually mean he is needing those activities because his brain needs the stimulation, hence he may be more low in arousal levels They look at the problems the child may present with and if it is a sensory issue rather than a behavioural one link the it to the appropriate sense (eg a child who constantly chews clothing would have an oral issue) and try to help the situation by providing ideas for an appropriate sensory response. The example the OT gave was of a child who is in meltdown but refuses to be touched she suggested they have a quiet low lit place to lay in and to cover them with weighted pillows! The pillows are a substitute for a tight hug and by their heaviness are meant to calm the child who has become sensorily overloaded. Does that make sense? Like I say I haven't really got to grips with it myself yet. My son hasn't been given a programme to follow but this was a group talk and we will be seeing the OT again later this month individually so maybe more will be said on the subject then. I have got some handouts but haven't had time to read them properly yet. Will let you know if I find out anything else useful. Take care - luv witsend.

Hi hev holidays just aren't holidays for 'us lot' really are they?

Hi Matti and welcome to the forum. I have a son recenlty diagnosed with AS and his father was (? still is) an alcoholic. His Dad left when son was 6 months we split up because of his drink problem and because he had violent outbursts when drunk. When he wasn't drunk he was the funniest loveliest person, but these times became very few and far between and ultimately I did fear for my safety. Looking back now with hindsight I am convinced he had AS and it just makes me sad to think I didn't know about it at the time because maybe I could have done something more to help him, am certain he did not know anything about ASD's. I have wondered myself if there is a link between alcoholism and ASD and now having read these posts it seems obvious there is. Also when I think it through it does seem to make sense why someone withh all the difficulties associated with ASD woud use alcohol for many reasons. Anyway to you for recognsing and dealing with your problems I wish you so much luck. Take care - luv witsend.

Hi all - I attended atalk by sons OT a few days ago on the 'ALERT' programme to be honest I wasn't sure what it was all about and don't know now wether I'm too much wiser1 The talk was fairly brief and there was just me and 3 other parents present. unfortunately one of the parents seemed to have their own agenda going on which meant they kept interupting the OT and talking about their own childs specific problems which kind of meant we got sidetracked quite a bit. I know the ALERT programme is to do with sensory issues and finding the right response to them (well I think it is ) but don't really know what to do with it! do have some handouts to read but thought I'd post here too in case anyone has experiance of this and could share some thoughts on it. Thanks - Witsend.

Hi Tylersmum - my son has always done this kind of thing it can be embarrassing when I'm out with him and just bl****y irritating at home. The noises and sounds have varied over the years, but have to admit nothing has ever really stopped him nor can I identify any particular triggers (except it gets worse the more excited and or bored he gets). Now I've become reasonably immune to it in public (I'm sure the public haven't ) still get irritated at home but find the more I say 'don't so that; the longer it continues! Sorry haven't got much advice I really beleive he canott stop himself most of the time and I don't think he is actually aware of it much either. My main problem these days is that it does tend to upset/frighten his younger brother but then again he can be pretty loud when he wants! Earmuffs anyone??

hi Jill - just wanted to say I'm pretty sure you're gonna get it right 'cos you obviously care! Wish you were teaching my son in Sept. Good luck - Witsend.

Hey Baddad - do seem to remember you mounting that horse during a previous discussion we had Did just want to say that this time I agree with you Luv Witsend.

Hope you have a good one Suze

Oh ksanic how bl***y awful for you! Just want to send you this <'> and agree with suze and carole , of course you need a second opionion/investigate the whole thing further. Maybe get in touch with NAS and see about seeing their specialists - sorry if that's not aproppriate all I can think of to maybe help. yes your right the systen stinks I'm sure everyone on this website would agree with that at times. take care - luv witsend.

Hi again Surrey - well first I can identify with the new girlfiend thing because this is exactly why my ex stopped seeing my kids 3 months ago (how shallow is that?) he hasn't even bothered to go to court re contact etc so in one way that's a relief for me but in another way it's very hurtful for the kids to know how not bothered he is, I agree with you amongst all the emotions I just feel mostly it's very sad my eldest son is desperate for a father or perhaps that should be male role model although he now won't admit it, it really tugs at my heart strings watching him acting tough when I know how hurt he is inside. Secondly yes I am convinced about it being genetic, BUT my ex is not the biological father of my son so work that one out if you can? When I look back I am sure that my sons biological dad has AS my son is soo like him and he has not seen him since he was 6 months old (definately nature over nurture there). I must admit I find it easier now to understand/forgive the failings of biological dad with the benefit of hindsight but I can't offer any excuses for my ex and that's worse! The saddest thing of course is that my son has 'lost' 2 fathers now and although none of it was my doing I bear the brunt of guilt for that Anyway hark at me blathering on - at the end of the day at least our kids have got someone totally on their side that's got to count for something hasn't it? Luv Witsend. P.S have just read my post back and realised got nothing much to do with school dilemma anymore - apologies now for misleading title!

Hi Smileymab - my son is 10 now but I think he has always felt/known he is 'differant', once I grasped that he may be ASD I wondered and worried about how I would or should tell him. I started talking about the subject of ASD just prior to diagnosis when I was sure in my own mind about things, he didn't say too much at first but then he asked a lot of questions (and I mean a lot). One reason I felt I had to tell him was 'cos Iknew the cons would openly discuss AS in front of him and not really stop to talk to him about it and I didn't think that was fair. Also I knew he should have the information becuase it is him it concerns (if that makes sense). I was glad I'd done my own reaearch before I talked to him it made all the questions a bit easier to handle and when the cons diagnosed him recently my son was quite matter of fact about it all and actually pleased and relieved to have AS confirmed. My son and I know there are problems to be faced having AS but I must admit I've been very positive about it all to him and I think he's actually proud of it now which I don't think is a bad thing Sorry I'm waffling a bit here your question was more 'how to tell' rather than 'wether to tell' I don't honestly know how I would of told my son about it if he was as young as yours it must be difficult to get it age approparite but I think I would definately have told him something about it and perhaps taken my cues from him. Once you open a subject with your child they often set the pace for what follows and it sounds like your son is pretty intuitive and has insight into his own 'problems', so maybe broach the subject and then take your lead from him, but again I would stress the positive things whilst acknowledging the more negative. Good luck I'm sure you'll handle it right because you know your son better than anyone else. Take care -luv witsend.

Hi Surrey - just read your post and have to admit am having a litttle giggle here! Just 'cos it sounds like we're in the same boat. Don't know what my (ex) husband would think as he left us for someone else a year ago and hasn't seen the kids now for 3 months! So yeah I know how you feel about making all the descisions on your own. I comfort myself with the thought that hard as it is now it would probably be worse if he was still around 'cos he couldn't/woudn't make any descisions anyway and just stuck his head in the sand, that made me feel so resentful. At least now I make the desicions and take blame or credit where it's due without having to go through the whole charade of 'what do you think' routine. Out of interest does your ex still see your kids? Sorry if that's too nosey don't feel you have to answer. And yeas thank God for playstations (sometimes) Luv Witsend.

Hi lil me - my son is 10 and has dyspraxia, dyslexia and AS, he does not dress himself (can't and won't!) he can't do buttons, zips, laces,or socks. I f he does dress himself it takes forever causes untold stress and results in everything inside out and wrong way round. I encourage him to dress himself at weekend when there is more time and always make sure everything layed out for him on school mornings, so that he can now do polo shirt/trousers himseld with supervision. PE and swimming have been my bug bear with school for years now. When my son was in reception class on PE days his teacher used to come out into the playground at the end of the day and in front of everyone hang various items of clothing on the rails shouting out names of kids who hadn't managed to put them back on! My sons vest etc was always there and he would emerge with few clothes actually on inside out and wrong way round much to everyones (except mine) amusement, I still writhe with the anger and humiliation this caused us Since then I have spoken to school numerous times about help with getting changed finally at last statement review meeting I insisted it be part of his statement he get help with changing (extra time, someone to help) it is not acceptable that your child misses activities because of his disability. My son had previously ben chastised for being 'too slow' at changing and even threatned with missing school trips because he 'took so long'! This made me so angry so this subject still really pushes my buttons. I'm sorry I can't quote relevant research and law right now about this but I'm sure the school are not right to exclude your child from activities due to this as it would be discriminatory (I believe dyspraxia is now included 'officially' as a 'disability'). Please do not think you are making a fuss about nothing here or that the onus is on you to sort it out - the school have a responsibility to do so. Hope you make progress with this - luv Witsend.

Hi Surrey - Yeah I've thought about the whole local freinds thing and it is part of what puts me off the rural school also in the last annual review meeting the LEA person present gave me the impression I would not get help with taxi/bus fares, but don't actually know that for sure. Sometimes I do think well at least if he hasn't got 'friends' locally then I can keep a better eye on what he's doing ( I hate it when he 'plays out' - my nerves are on edge something will happen) but I know that's really my problem and pretty selfish I just always want to keep him safe but I know I have to let go a bit and let him take risks and that as he gets older he may be better at handling friendships and then it would be better for him to have more local friends. I am still I think leaning towards the local school more, but will decide once I've seen schools had next review meeting and discussed it with a few other relevant people. I hope ultimately as you say I will get a feel for what is right - will no doubt keep you posted! Luv Witsend.

Thank you so much for your replies I've finally got the gist. Madde me realise what hard work the 'normal' everday things are for son (and me). I used shopping, walking the dog and swimming fro the out and about examples and playing with brother, homework and having friend for tea for the home ones. Don't know how well I've done it but I'vve done it Just have to wait and hope now Thanks again I (obviously) couldn't have done it without you Luv Witsend.

Sorry Lorraine too knackerd myself to say anything constructive but from one knackerd mum (carer, vigalante, counsellor, form filler etc) to another <'> . Luv Witsend.idn't mean to put that thumbs up icon in at start, don't know what happened there

Hi again, just thought I'd have a good old rant whilst I'm online and actually have a bit of peace and quiet in which to do so! Son was horrible to me tonight and I'm still feeling p***** off about it! Here's the scenario: picked youngest son up from nursery after work to be regaled with tales of severe naughtiness from knackered nursery nurse youngest son has lead them a merry dance all day and have to say there were a few worryingly familiar 'symptoms' in the tale told, I'm trying to be sympathetic to nursery nurse whilst trying to keep a straight face at naughty young son (who is delighted with all the attention his behaviours warranted) and keeeping a weather eye on older son who is (again) causing glorious mayhem amongst assorted toddlers at nursery (young children adore him God knows why!) whilst half seething inside 'cos Id recently tried to make appt with nursery to talk about younger sons behaviour and had got nowhere. Anyway got home fed dog, fed self and kids tried to watch BBLB (I know sad) before they commandeer TV for Simpsons and storymakers but couldn't hear a word due to them either laughing hysterically or fighting horribly! Went to wash up to be interrupted by shouts and screams - younger son spilt milk and throwing it at older son, older son hitting younger son over head and shouting 'stupid boy' at top of voice - sooo - picked younger son up and put him on settee whilst telling him off about to tell off older son when he turned on me ! Started on a right rant about how horrible I am to little son and shouting loud enough for neighbours to call social services 'you shoudn't be so horrible to him you could kill him doing that!!' (Thank God neighbours in Egypt! ) Anyway not as funny as it may sound cos then older son went into massive meltdown acting as if I'm attila the hun - I'm usually really nice to them both honest! Don't know where it all came from but it did really upset me Eventually calmed it all down and now both sons peacefully sleeping whilst I'm stressing and filling out imposible DLA forms Oh well tomorrows another day!!

Hi everyone - sorry another b***dy DLA question. Did get a couple of ideas from traceys post on DLA but am still at a bit of a loss with this one! Have made gargantuan effort tonight to finish off green forms and have done all except pages 22, 23, these are the ones that ask about help the child needs when they go out in day or evening (not that mine does much!). It asks 'what they do or would do if they had the help they need'?!! I don't get it. Does it mean where would they go what would they do if they had help? And what sort of help does it mean anyway I can't envisage any service/help that would be able to support my son say in a scout group or swimming class. In fact he has stopped all activities such as these over the years one by one because his behaviour has always landed him in trouble and the he has not wanted to go back! I'm tempted not to fill this bit in but obvioiusly am worried if I don't then that may go against us. Sorry I'm sure most of you have been there and done that and don't want to be reminded of it anymore But if anyone can face it then I'd really appreciate a bit of advice. Thanks - luv Witsend.

Thanks for that Suze it's taken the pressure off a bit knowing that. Luv Witsend.

Hev HI - been thinking about you and wondering how you're getting on with the problem? Just read Amandas post and I know what you mean my son loves being rude and gets his bits out often (the last notable time was on our coffee table just in front of the big bay window just as a brownie pack of 7 year old girls was going past!! It was very funny on one level but not really on another ( I wondered how I'd of felt if one of the brownies was mine!) The trouble is as they get older it becomes less funny and if others are commenting on it seriously I do think it's very worrying. Still haven't had any bright ideas about what you can do to stop it but hope your not letting it get you too down 'cos at the end of the day it is all part of his 'condition' and it's not your fault. Hope that doesn't sound too 'hokey'. Just hope it's getting better not worse for you - take care - witsend.

Hi frances-mary sorry I don't really feel wise enough to give you advice as such did want to send you <'> I suppose all teenagers vent their spleen in similar ways at times but kids with ADHD I guess don't have enough control to know when to stop. It must be awful when they are physically so much bigger and older, it's bad enough when they're little but at least you feel you have some control (even if it's akin to restraint). Just hope someone does come along with some constrcutive advice for you. Take care - Witsend.

Hi I' in a similar position - just got around to filling forms in after putting them away for 2 months ! I thought at first it had to be a professional who filled that bit in but now I've studied it it does say anyone who knows the child well. I am going to ask my sister to do it 'cos I feel she knows my son better than anyone else. I'm really stuck with the pages (22) which ask about 'what they would do if they had help' etc. Can't nuderstand what it means. But not wanting to hijack your post - will prob post about it seperately when I get chance Luv Witsend.

Hi carolinew - yeah I'm inclined to agree with lil me why should you have to stew about this all summer when they have chosen to tell you now! Like you say they haven't thought about the self esteem emotional aspect to this at all. Our kids often feel failures even when they're not and to be given what they see as 'confirmation' of this is potentially devastating for them and it's you that has to pick up the pieces and convince them (yet again) of their own worth. Sorry to rant but it makes me so cross I think they should have spoken to you and your daughter prior to making such a desiscion and I know it's hassle you don't need but I'd have to go into school and make that point before I could rest. Good luck - stay strong - Witsend.

Thanks for that Zemanski - I didn't realise such a service existed. My LEA have been worse than useless at times, don't even currently know who named officer is - they do seem to keep changing. But will follow this up now I know about it. Luv Witsend.

Hi Suze - sounds like we're in a similar position right enough. At least our choices all have some positives if you know what I mean, but it feels so hard to make the right decision doesn't it? Can't make this post too long (kids demanding attention constantly) but yeah will contact parent partnership and maybe local ASD support group and ask advice about what to ask etc. The HS thing was discussed briefly at year 5 review but because diagnosis was sort of imminent but pending a full discussion never really got underway, we were supposed to have another (early) review a couple of months ago to update statement and talk again re secondary schools but (as usual) this has got put back until Sept now, hence the probs with choosing a school 'on time'! Sorry if this isn't making sense, 3 year old keeps coming to show me his poo in the potty (toilet training) and can hear older son shouting in background at something which will need attention shortly! Have to go now, have to say the 2nd school you mentioned sounds good (apart from taxi ride ) but for Gods sake don't take my advice re anything I'm slowly cracking up anyway! Take care luv Witsend.