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DISCO Assessment
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School's been going well. He's back to loving sports because he's got the sports teacher he particularly likes from Year 7. Had some physio on is ankle last week and so if we can keep that up, hopefully he'll find an improvement there - it's merely that the muscles have become week through his fear of using the ankle.
NLP not going so well. She's taken a tough approach with him and so he hates her. End of - he's refusing to see her. He says if she calls him a 'fat pig' once more, he's going to call her a 'fat whore'. My feeling is that she isn't really getting the aspergers thing. She wants to address his weight on the basis that he'll then be happier and all his problems will go away. When will anyone listen to me? The problems were there first and as they became more apparent and made him stand out as he got older (not helped by the broken ankle) on came the weight. I strongly believe that if we can address his emotional and social difficulties, he will be happier, participate more and consequently lose weight. I'm so bloody tired of 'experts' demanding that its the other way round (bearing in mind I was seeking help before he gained weight). I know my own son and I'm not stupid. I thinking I'm throwing good money after bad here and when I see her again on Thursday (alone cos there's no way LM will come).
Hi Mints
not been on this thread but read some bits. I am with you regarding "experts" -it aint an exact science as they give the impression. The NLP peop seems abbusive to me- counter developmental if you ask me. I feel that the emotional stuff and asspociated world view needs to be addressed.first -weight control can come out of stronger little mint.
both take care
x
I will share this Minty
a small angry boy, very needy, pretty ugly who got uprooted from freinds he struggled to meet, found himself self and other harming. At school he was in C stream and left for factory, dole or prison as experts maintained. On anti-psychotics, then anti ds-from experts. He was heading for a life of being prodded, pilled up and dependent. No one got to the core only the behaviour. Of course he did not feel better or improve. After a moment of "madness", he threw the tablets and went looking for something he sensed. What he sensed was himself -an inner self, unique and nothing like what he was told he was. Found a place where noody was judging and assessing him and recognised what was right not what was up with him. The seeds were sewn and some good non-assesing therapy and some self awareness and acceptance later he moved on and is successful in his own terms, has a good relationship with those who matter and is happy. He still gets judged and ostracised by some but doesnt go seeking everybody's approval because he accepts it is impossible. He sits comfortably in his own skin. Wonder where he would be in the hands of so called experts?
Minty
glad to hear that things are going better in school........I think you should go with your insticts with the weight loss etc. and glad he's loving sport again.........its definitely a way forward....
take care
Thank you both. I was in some trepidation when I came back to this page just now because I half expect everyone to turn the tables on me ... why won't I listen to the 'experts' .... if all the experts say this is what needs to happen then I should listen etc. After all I do have a history of disagreeing with the experts which you only need to read this thread in its entirety to pick up on.
But you're right SN - I trust my gut instinct more than I trust anything or anyone - it doesn't tend to let me down (except when I'm paranoid and then I'm usually being stupid in thinking things are about me when they're not, altough I'm still always right that 'something's up' with someone or other - I just need to learn that I'm not always responsible LOL).
I really do appreciate your supportive comments. I'm not going to tell NLP lady that she's wrong, just talk through exactly what I expect to be paying for. I think we've just lost sight of why I'm willing to hand over the money. If she's worth her salt, she'll take my comments on board. If not, I'm going to do something really nice at half term with the money I'll be saving
mint -your instincts are not just for decoration. They are yours and related to all your experiences. You are more of an expert on yourself little mint anyway. . I can understand your anxiety over "listening to experts". We are socialised often to depend on them "clever people" as opposed to someone not so clever like ourselves -then often insticts take a back seat. You are right and very wise to challenge things. Do YOU believe in NLP? How do you view the brain? as some sort of fleshy computer that can be programmed or are things not quite as simple as that? It isnt the only world view.
good luck babe
x
hope it stays on track Minty
lLittle mint is a lucky kid to have such a good mother behind him.
take care
x
i know i haven't been here for ages
but today is a special day
boy1 just got his black belt in karate
having aspergers can be an advantage in stuff like this
he is single minded and works hard at what he enjoys
just a case of finding it i guess minty
Thanks Hoose.
And fantastically well done to boy1 - is boy1 your 12 year old lurks?
Completely agree Lurks - Little Mint's talent lies with his music. However, he only works hard when challenged (as with everything). We had a clash with rugby and orchestra which kept him away from orchestra and meant he wasn't too motivated to play. However, he's now in school concert band and within three weeks has got himself 1st trumpet - not bad going. This means he's rehearsing again so I'm not so tempted to cancel the lessons.
He's found something else he loves too - chemistry. I suspect the bunsen burners play a large part in the attraction but he's also managed to learn the periodic table very well - something I never managed to do.
I tend to use this thread in a very negative way (I'm afraid it's an awful tendency I have) but Lurks is right - there are loads of advantages and aspects of aspergers and I do love LM to bits and am extremely proud of him. I think this is why I get so upset by the minutiae
LOL Minty
I did read this and thought you do choose what you want to listen to BUT then I thought probably most people would (and do). Life with LM has to be in the present and a correct choice made today may not be a correct choice tomorrow. You can only do what you think is right on that basis. I've said it before I think he'll have a rough passage through school and all you can do is manage that. As long as you look back and can say you tried then you've done the right thing and I'm sure you will.
SLAW x
It's true SLAW - I do choose what and who to listen to but I guess that's my prerogative esp. when paying £50 per hour.
We had a fantastic cycling day yesterday. LM has been so demotivated about any activity since breaking his ankle but we spent the whole day out on our bikes and afterwards he said that he felt he could do anything. We're now busy planning some challenging bike rides. We've decided to take his bike in on the bike carrier some days and then he can cycle to school from my work place - helping me to be at work earlier and him to get some extra exercise - everyone's a winner. Sadly we live too far away to cycle in all the way - that would be a good reason for us to move a bit closer - then we could both cycle.
NLP counsellor got me talking about when LM was a baby - premature, not looking at me, not smiling, crying all the time. I recalled how anxious I felt (and often still do) and it helped me to see how my anxiety transfers to LM so she did some work with me to help that and I've got to say, I don't feel as anxious now - long may it last. She's also offered to do some work with our running - I was telling her how difficult I find it but she said it's all to do with my breathing. I haven't been running for a couple of years now but would like to start again and do it better than before. LM used to come with me but we both struggle with breathing and end up coughing for hours afterwards - I can live with the coughing if I could just get the breathing right when I'm running.
Better get off - I should have left for work 30 mins ago and I'm sitting here with wet hair! I can get away with it in half term. Have a good day everyone.
well done to the little lurker!!!!
someone has suggested karate for mini tweety but i just haven't got round to it.
finally got a reply from CAMHS at the end of last week. mini has been waiting for DISCO since last August and I hadn't heard anything. consultant called me to tell me she was on waiting list and hadn't been forgotten about but that the waiting list was very long. doesn't really help me because mini's teachers want her to have a classroom assistant next year, which they are going to need funding for. i know the school are going to find it very difficult to get funding for individual attention for a child who doesn't have a formal diagnosis. that's all i want and it is taking flippin ages! bizarrely, i got a letter from consultant's PA today asking us to attend an appointment. when i called and asked what for, she said it's because the waiting list is so long, they wanted to review her again because she has been waiting for so long. sounds like they are trying to get the waiting list down if you ask me. or perhaps im just too cynical
Evening folks, sorry not been around for such a long time, partly computer problems, partly home issues and also, don't know why, have had major probs with my RW account - lost this thread and couldn't get back into it.
Anyhow, have been having very quick read through everything.
CAMHS - we are very lucky in that they are brilliant. That said, when No 1 Child first diagnosed told me 2 - 3 yr waiting list for ADOS/3Di. I got him assessed after 8 months by writing to head of local NHS with diary of his actions for previous 2 wks and asked them how they could justify leaving him like that for the next 2 - 3 yrs before helping him. He was into serious self-harm, so when they saw what he was doing (coupled with 999 calls) they were worried about litigation! Either way, got him seen much more quickly. As ever, you just have to keep pushing.
NLP - bit sceptical myself, will re-read what you've said Mint, but be careful you're not so desperate for help that you'll take anything (not being unsympathetic, have been there.............)
Consultant who did ADOS, at end, said her approach (which was mine) was to accommodate Aspie, thus build up his/her confidence, reduce anxiety etc, then, when Aspie "stable" start to help him/her adapt to "neurotypical" world.
Tweety, does sound a bit like reducing the waiting list by moving from one to another
but may also be that as Mini gets older, they can assess her a bit more/better than when she was younger, so can decide where to put her on ADOS/DISCO waiting list. Diagnosis is good to have, but (trying not to be too negative here) don't think that it's the magic answer, we have diagnosis, but it hasn't given us enough support. That said, primary schools are totally different, so get as much as you can while you can.
Struggling with school work - same old same old - not looking forward to next two years, No 1 Child will be doing GCSE's and No 2 Child will start at same secondary school..............................
Greetings Hoose, didn't know you'd found your way over here!
No trolls, (well apart from the odd one!) and generally, better class of posts!
Thanks for your comments too.
Mint, I've re-read your posts, particularly re NLP, I've no exp so may be talking out of my backside, but one thing that concerned me was that she seems to be dealing with a lot of issues at the same time, it might confuse LM if she's trying to cover that much.
What I've found with my two is that consistency and simple rules work. That way, they know what to expect and don't have to cope with too much.
Maybe, LM is being confused with all the different strategies that people are using to try and help him (even if he can't say so - I know when mine are bad as they start doing certain things - that's when it's time to rein back and remove the stuff causing anxiety). I think that may have happened to us shortly after No 1 Child's diagnosis, he was in such a bad way and I was trying to learn/understand and resolve it all simultaneously that it was totally confusing. I was aware of that, but couldn't see a way out of it.
Then, having read countless books on AS, I felt one answer might be to look at No 1 Child's problems, identify the ones that caused him/us most problems and concentrate one just one or two - elephant task approach. That worked and we now have a single strategy that we apply to every incident - so it becomes automatic - they're the ones that I pm'd you. I was also able to talk it over with him when he was in his calm moments, so the ideas we came up with are largely his, as that's the only way they'll work.
When he loses it, he knows that the way of thinking in our house is "It's OK to get cross, it just depends on how you handle it" and that applies to any other sort of "anti-social" behaviour, ie it's OK to be upset by people/events, but it's how you deal with it that matters.
Could you do this with LM?
From National Autistic Society
This arrived in my messages this morning, if anyone is interested. Might be useful for you Mint........ although probably not for some time........!!!
Hope all having quiet weekend.
Sorry not been around. Been having a hectic time of it with work, studying, life etc.
NLP and, more particularly, TFT (Thought Field Therapy) are going down a treat - don't ask me how TFT works but it really does and despite the obvious difficulties we were always going to have in getting LM to participate, now that he is, he also rates it. So far he's feeling less anxious already. First two or three sessions were just money down the drain and then we had the slight blip where he hated the therapist. Last week's session was traumatic but ground breaking as he finally submitted and he was amazed by the results to the point that he now just wants to get going with it. Hooray! Therapist feels so strongly that she can help that she's doing some of the sessions free of charge because I can't afford to go every week.
I did visit your link CJBA - despite not posting - good news don't you think?
LM's back on crutches having suffered some soft tissue damage to his knee although it should only be short term. Unfortunately having crutches seems to change the dynamics for him and he ends up falling out with people more than he would if not on crutches. I felt like crying when the hospital gave him the crutches because I realised this would happen - his head of house said his heart sank when he heard too. One head teacher's detention later and things have settled again ... <sigh>. Never dare to relax with that boy!
Reading back, I didn't mean to sound rude SLAW when speaking about my prerogatives - I completely agreed with you and was laughing as I responded but it doesn't come over very well on here - so apologies, I hope you didn't think I'd taken offence.
Oh, nearly forgot, went for 3Di assessment last week. Three hours!!! The positive thing was that the paediatrician said that even if the outcome is that he doesn't have aspergers (won't know yet - still more info gathering to do), there's no doubt that the traits are there and the consequent social and communication difficulties. He's already planning recommendations for school and relevant intervention for LM which really pleased me - I've only been asking for this for the last 10 years!!!!
Right, that's me for now. Just waiting for short wash cycle to end so that I can get it into tumble dryer and get to bed.
Hope everyone okay.
x
Put LM down for skiing trip. Had message today to say that they don't think he should go .... but no reasons given as to why.
This should be interesting. Bring it on.
Good luck Minty.
mini just recovering from chicken pox. bit of a nightmare but much better now.
Mini starts swimming lessons on 4th April - I am so excited!!! She can go into classes with other children and the co-ordinator has booked her with an instructor who has experience teaching children with learning difficulties.
Poor mini - miserable time.
I bet she'll love swimming and it's fantastic that she'll have an understanding teacher. They're few and far between.
LM once had a teacher who completely re-arranged sports day activities so as to remain inclusive. Nobody knew any different but he told me what he'd done and why, and I thought it was really thoughtful of them and showed the true meaning of inclusivity and diversity. It can be done.
I've now had an email from the school with reasons as to why they don't think LM will be a success at skiing. Remember I work in education and I'd be disciplined if I were to do what this head of house has done. My colleagues think I should report him to the local authority. Others think drag headteacher into meeting tomorrow. I'm not going to do that. I'm taking our NLP counsellor with me (she's also worked in education and is also appalled) and we're going to try and make the head of house see reason. If not I'll have to reconsider my options.
Really need to get to bed now but hope mini soon feels better.
Telephoned school in advance of meeting and asked them to let me have copies of their inclusion and diversity policy. That was all it took (perhaps it reminded them to have a read of the policies) and they did a complete about face. Suddenly they're delighted LM is coming skiing and really looking forward to taking him.
Now that's more like it.
NLP really rocks. I keep bracing myself for him going into meltdown and it doesn't happen! He just confronted me because I hadn't put butter on the toast for beans on toast (we've run out and I hoped he wouldn't notice as I never put much on anyway). He just said 'you haven't buttered the toast have you?' and I thought 'here we go' - this would usually lead to some sort of explosion because it's different and not what he's used to. I explained that we'd run out and he just smiled and carried on eating.
That's progress - anyone else with an ASD child will understand that.
The TFT seems to be the thing that's really helping and rather than sitting tapping himself he just does it in his head - nobody would ever know.
No offence taken whatsoever!
Things sound good at the moment!
I can see why he should be taken and equally I can see why they don't want to take him.
They have difficulties managing his difficulties and suppose to them he presents a H&S risk!
As a parent are you happy with them and their track record taking him?
I'd definitely ask to see their risk assessment LOL
Thanks SLAW - it's so easy for posts to be taken the wrong way without using emoticons and when I read back I thought you may have read a tone that wasn't really there. Phew!
Good point re risk assessment.
Never thought to ask about track record. Might do that nearer the time. By then paediatrician should have intervened regarding helping LM to integrate more in social terms. I don't think he presents that big a risk. The biggest risk is that he might have a falling out with his mates (not such a big deal if someone can step in and stop it becoming all out war) and in any event I think the NLP will have had a huge impact in that regard by then. Even now she's helping him not to be so wound up by people who evidently try to wind him up on purpose because they know they can get a reaction.
I too understand why they might not want to take him (although that makes me sad - I'm his Mum after all) but at the end of the day they have to find the ways of managing - the same as I do with my more vulnerable students. I can't say 'sorry X can't join us because they'll just be too hard to manage'. Instead, I have to plan ahead and, if necessary, bring additional staff to help me manage. After all, it's about the experience for the students, not the experience for the staff. The impression I got was that he might spoil that staff members' skiing holiday - I sincerely hope he doesn't, but if he happens to, it's tough really.
He's getting better all the time and I can understand any reticence to believe that (it's early days yet) but hopefully by then, he'll have proved it and they'll feel a lot more comfortable about taking him.
Awwwww, congratulations!
You must feel very proud - a very special little girl. Bless.
Still bliddy waiting - after 11 years - my last appointment was 3 weeks ago! Grrrrr