LoubyLou
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Posts posted by LoubyLou
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Update: Things are quite stable now & are working well - ds has reactolite lenses for his main glasses which are expensive (cheaper make is no longer available, grr!), for everyday use. He also has 2 pairs (Specsavers! ) of sunglasses for use indoors where the lighting is unbearably bright (school & shops). This is more expensive than clip-on sunglasses which we got direct from China on Ebay to keep the cost down, but I feel I'm doing a better job sending him out into the (difficult) world in his teens wearing shades rather than clip-ons. Maybe one day someone will invent lenses which can be switched at will, until then we have to make do with 2 different types of specs, but that means we can go anywhere, as long as we have the dark glasses to hand.
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Thanks that's really helpful. Off to get some Iridium lenses for myself!...
I'm sorry I got it wrong, it's changed by a -1 as he's shortsighted, oops. The current optician specialises in diabetes - with vascular changes etc (ok that's my old training coming out of the box!, not in opthalmics though) being something in particular to look out for in the retina in diabetes I'd imagine they may well have the picture technology where we are now (they are extremely high-tech!), so I can always ask on our next visit (which will very soon come round again), thanks. That's really interesting about the astigmatism - definitely something to watch out for, & thank you so much for putting it so clearly too!
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Thanks for the detailed reply darkshine, so helpful! I completely forgot to ask about polarised lenses, however the optician did suggest going for cheaper transition-type ones (I didn't realise that Transitions was the brand-name & we were paying a lot extra for that). So the ones he has now just cost £20 & although they seem slower to change shade/adapt he's very happy with them.
The prescription this time changed by a +1 in the 3 months but only in one eye; within a few weeks of getting the last pair he was struggling to read signs that we could see clearly. However I think it's just due to rapid growth? He's almost 13 & getting through clothes at a healthy rate of knots so I thought it was simply due to being a teenager. It's still a fairly low prescription though so I'm not worried about it. It hadn't even occurred to me whether it could be due to anything else. The opticians do seem a bit suprised about the rate of change. Could it be due to anything else?
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Thanks for the replies everyone, sorry I only just found them!! I haven't found out any more about help with the cost - for the transitions lenses we pay £50 each time at our opticians, then the rest is free on child prescription. I'll ask the optician about polarizing lenses; these is different to anti-glare? So many different types of lenses!
Really he should also have a pair of tinted ones for reading as these also really help, but we just can't afford these on top every 3 months at the moment (last time they were £250). Personally I do have separate sunglasses for the summer months but organising these for my son would be a nightmare (as he doesn't have a handbag!), I think they'd just end up being lost every 5 mins, & not having them when we needed them etc. With the transitions at least they change automatically so he doesn't have to think about changing/losing.
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My son is also similar & age 12. He gets some support through CAMHS (though this is a massive fight, but at the moment we have a very understanding dr & that alone helps lesson the isolation!). Also he's at a small school with a very good SENCO & support in class. Generally small class sizes & good support (even if shared with other pupils) make a massive difference to being able to cope with school. I'm hoping that over time being able to drop less-favoured subjects will also help! Some schools offer reduced homework-load for ASD pupils (I declined this because I didn't want him to fall behind or feel that he'd missed out on topics covered eg in class/tests, but not sure if this was the right thing; he's ahead in the mathsy subjects anyway & really it's health that comes first!!) Also helpful is providing an 'exit' from situations at school that are just too much, easing the pressure to be able to cope with the rest of the school week, for us this has been PE (for a while) & sports day; I've known pupils just miss subjects taught by the odd teacher they can't cope with too!
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Does anyone know if we can get any help with funding transitions lenses for a 12-year-old with high-functioning autism? He's had a sensory evaluation & definitely has problems with light, there are certain shops he just won't enter due to lighting & the transitions lenses really help dramatically, also with coping with sunlight coming through windows at school, going out etc. However his eyesight is rapidly changing & at the moment he's needing new specs every 3 months, for which we have to fund the transitions lenses each time. I've tried asking the optician, but I wondered if anyone else knows if there's any way we can get the funding for these covered as it's definitely a medical need. The other alterntive of course would be prescription sunglasses, however he loses things a lot (pre-glasses I just bought lots of cheap pairs of sunglasses & kept them in key places!), & again these would need changing each time as his eyesight is changing quite dramatically & rapidly at the moment (within weeks after his new glasses arrive signs etc are already looking blurred!). Has anyone successfully secured funding for transitions lenses due to to light hypersensitivity?
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Oooh thanks Ora Nurse, that looks brilliant!!!! Wish it was available in shops as with p&p it does get a bit costly. We've tried asking lots of different dentists & the NAS, got through goodness knows how many different brands & are still on "Milk Teeth" at age 12, finally really sympathetic dentist has agreed that this is ok (previous dentists kept saying it wasn't even though we'd tried everything else!). Anyway, off to buy some, definitely worth a try & will report back to dentist too!
We did have some success with very gradually adding tiny amounts of a "bearable" brand, but along with all the other plates to keep spinning this one slipped off at some point!
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There's this book on anxiety by Tony Attwood, but we got stuck when it came to breathing exercises:-
Exploring Feelings: Anxiety: Cognitive Behaviour Therapy to Manage Anxiety
My DS cries, 'though this has definitely lessened with age. In our house we eventually discovered that the reason Dad just doesn't handle this well is that he finds the noise of crying too loud to bear; we find it best if he just exits if at all possible (so minimizing shouting & double-meltdown!). Obviously I don't know if this is the reason in your case but I do empathise! I wonder if your son has simply worked out that he feels better after a good cry, so if he's able to cry he'll feel better afterwards? I hope you do get to the bottom of it.
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Hello,
11-year-old DS who has AS has been prescribed cipramil (citalopram) for anxiety & phobias. We eventually got the drop (2mg) down him today following 3 days of creative attempts! He's gone from very cautious to a bit hyper (over-active mind, but concentrating) & which caused a few difficulties at grandparents (broken items). He's a LOT more confident but has been up v.late with far too much energy (despite melatonin). It's having such a dramatic effect that I started looking it up again - apparently it's not licensed for use with children. The previous dr had been going to prescribe sertraline instead. Of course the accompanying blurb states that one can't suddently stop it but with one drop & such dramatic effects we're really concerned about giving it tomorrow (and school). The dr said she's found it really effective with phobias, & these have been getting extreme recently; I said that he needed practical help with his thinking etc not just medication, the dr has agreed to refer but says it will be a long wait (not sure how long). He needs something but we really do not like the SSRI family!!!!!
Does anyone else have experience of children taking cipramil? (good or bad, it would just be great to hear as it feels pretty lonely!)
Are there any alternatives which are lisenced instead?
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Update: Just to say a big thank-you.
We did compromise on the clothes - comfy smart-ish trousers with shirt just for the ceremony, allowed DS to 'dress down' after that. All the advice we'd been given was exactly right: we used "now & next" (ie now wedding, next explore hotel; now meal, next shower - ie something difficult followed by something child finds fun/relaxing & can look forward to); we were able to arrange with the caterer food that he'd actually eat then pop out for chocolate for pud (helped stretch out the time for him a bit); took varied novel activities (£) & favourite drinks & comfort toys; sat near exit. We looked at the venues via the internet in detail as both were too far away to pre-visit. I pre-thought about which bit was most important to me & concentrated just on getting through that, so everything else was a bonus. Only the one big meltdown but that was due to 2 unexpected changes to the ceremony which were completely beyond anyone's control: we coped by making a dash for the hotel afterwards which personally was very difficult (it meant I watched old friends as if through a window and didn't get to say hello), but the main thing was that we did make it through. I was exhausted by the time we arrived
& consequently spoke quite a lot of gibberish but so very glad that we went and all-in-all a really lovely day 
It was difficult repeatedly plucking up courage to explain/ask for the needs in advance but very definitely worth it. PHEW!!! And huge thanks again to all of you who very kindly replied and me encouraged that it was indeed possible!
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Thank you all so much for you help, tips and advice!!! I think he may well end up going in cap, t-shirt & joggers like Cat's dear son, 'though I will try the favourite-colour-shirt idea just in case it's in any way achieveable
; I will relax much more about it knowing we're not the only ones. I did speak to the NAS who advised using a 'now & next' approach - ie now we're doing this, next we'll visit our hotel, or next I can play a computer game etc. Also asking to sit near the periphery of the room so that DS can be nipped in & out without causing too much embarrassment (not to me, I'm pretty much past that). I may suggest a chat with the caters & be prepared to nip out for hot snack if necessary (chicken with raw carrot would be perfect!). We'll definitely look at photos of both venues if we can find them online & if not try to arrive slightly earlier. We don't have any respite 
& our days do tend to end up more like Sesley's but hey at least if we make it there & get through the day somehow that will be a success (relative to not going)!!Thank you again so very much for all your advice & thoughts!
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We're going to a wedding soon, (note positive attitude!), I've booked accommodation as it's a long drive from home. There are 3 of us - (1)me, pretty burnt-out at the moment with the battling etc (2)DS, 10, who has AS with lots of anxiety problems, generally doesn't want to go (ok so this is 'normal' for boy of his age!), doesn't 'like' any of the very grown-up food in the lovely menu (- ie won't be able to cope with any of the courses, but we're very priviledged to be invited), won't be able to do the 'waiting around' & doesn't want to wear anything other than comfy trousers & a t-shirt (3)OH, lovely, finds social occaisions very difficult indeed, especially if DS becomes anxious/noisy. I know weddings can be stressful for anyone, not least the happy couple! We can't leave DS with anyone else & I can't go alone, so I'd be very grateful if anyone has any tips on what's worked for them, or any ideas on how to cope with the day?
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Do you have a copy of the SEN Code of Practice? If not you can download one from this site.I'm not sure of the truth of what you have been told. If a child has a Special Educational Need it should be met. If the school/LEA does not have that provision that is not an excuse.
What stage of SEN is your child at eg. School Action, or School Action Plus?
I would advise that you speak with IPSEA about this to see what you can do. Waiting until secondary school is no solution. All professionals agree that the younger the child begins any therapy the better the outcome. If your son is struggling now it will only get worse as demands on speech/communication/social interaction increase as they get older.
The only SEN document that is legally binding is a Statement. By that I mean that on school action plus, if the SALT is off sick for a year then your son may not see any SALT for that length of time. If he has SALT input specified in a Statement eg. weekly therapy, then that has to be fulfilled. If the SALT becomes sick another SALT has to be brought in to deliver the SALT programme.
It maybe that you need to request an assessment towards a Statement. That would require all the LEA to ask professionals to assess your son and produce reports that should identify all his needs and make recommendations on how those should be met in school. Many times LEA/NHS reports do not make specific recommendations. That is contrary to the Code of Practice which states that all input should be quantified in terms of hours of support and staffing arrangements ie. which members of staff and/or professionals do what, how often, and for how long.
We had to go to tribunal for my son, but the outcome is that he gets weekly 1:1 therapy from a speech therapist experienced in both speech disorders and autism. That programme is then practised daily in school.
Hello, thank you very much, yes My DS received his statement a few weeks before the Easter hols, so quite recent. It was a big fight for it, and in my opinion it is vague, hence we're (ok that's just me!) appealing it, though we're very happy with the school he's going to. Yes it certainly should be quantified, and it isn't - the number of hours required has never been even mentioned, at present it is a block of money ('though where that's going...), anyway yes you're right I think this isn't legal. The main reason we're appealing is over speech therapy, we'll have to get a private assessment that actually makes recommendations (rather than the long list of language needs at the moment). He does need it now, I've got a Cerebra voucher which we can use for Johansen therapy 'though as yet I haven't found anyone nearby who can see him for 'ordinary' autism-type speech therapy, despite looking hard... Anyway it sounds like you and your son are doing extremely!!, What a battle!! What a relief that he has the speech therapy.
Very Best Wishes,
GreenTed
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Staff/professionals have to go right back to the beginning and not assume he has any skills unless they have been consistently demonstrated to different people in different environments. My son had to be taught to use the 'help' card by it being put in his hand and a TA taking him to the person he had to give the card to and placing my sons hand + card into the other persons hand whilst saying 'help'. The person given the card had to reply "XXX, you want help", and would go with my son to find out what he needed help with. My son can talk, not brilliantly, but he is not non-verbal. But he never even thought about asking for help. It never entered his mind, and he definately would not have known how to ask for help. What he did use to do was sit on the floor and say "I need a little help here". But he was not saying it to anyone in particular and so was ignored. He had to be shown that the 'help' has to be requested from a particular person, and because he often does not address anyone when he talks he needed to 'give the card' to get the attention of the other person. It did not take very long for him to pick this up. But it needed to be taught, it was not happening naturally.My son's camping was successful. He did need an adult with him most of the time, but he had a go at everything.
There is no point forcing the issue if you are sure your son will not want to do something or will not cope. But try something simplier and similar at home and see where the process is breaking down.
For the keyring and symbol thing in school he needs to be taught one symbol at a time. He needs to be taught how to use it by one person and taught one person to use it with. When he has mastered that then you teach him to use it with another person etc and slowly expand the skill until he can use the symbol in any environment (classroom, playground, dinnerhall etc) and with any adult (teacher, TA, dinnerlady, school office etc). Then replace the symbol with the word 'help'. But the child may need to learn 'how to get an adults attention'. My son had to learn to say 'Excuse me', because he never remembers anyones name and it was inappropriate to walk up to an adult and say 'help'. So he learnt to go up to an adult and say "excluse me, I need help".
It is very small steps, and they must not move onto the next stage until they are definate that he has mastered the first stage.
Has your son been seen by a speech therapist and have they assessed his speech and communication and social interaction skills? If not, then that is the professional you need to ask school to come and see him. And you can request the SALT department to send someone experienced in speech disorders and autism.
Hi Kilimunjaro,
Thank you so much - it's really good to hear a breakdown of how this has actually worked, and I think you are absolutely right to say that staff should assume no skill in that area until they're consistently demonstrated in different settings. I think because DS is quite but "bright" (whatever that one means
) staff do assume that he's far more able than he is. His social language skills do seem to be behind other AS children his age that we've met. He's had two SALT assessments each giving lists of needs, so he has a long list of needs, but they don't make recommendations here because there isn't the provision. He has to wait to secondary school to have SaLT access, which I'm very sad about (though delighted and thankful that he will have it there!). I've bought the 'Socially Speaking' book & will try to go through that with him myself (when we've finished the Tony Attwood anxiety book!) - I know it would come much better from a trained professional and would just like the chance to be 'mum', and support at home what other professionals are doing, oh well. We're not getting any speech & language support at the mo even though we've asked at least 3 times & it's erm in his statement...but if I start talking about that hot potato I may just explode so had better not.It's now the residential trip that's causing the problem as school have changed their minds on the room-sharing. All I can think is that an adult had been harassed (he's had a lot of problems with bullying, but it's not so bad at the moment) by other adults the last thing they'd want to do would be to share a small room with them behind closed doors, unable to cope with this or ask for help. It's potty to me when I think about it this way for anyone even to try to persuade him in this. Also the whole someone to look after him idea has been dropped by school, we've made other suggestions which are refused. I know it's probably discrimination but am in despair about what we can do about it.
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I wonder if there's anything in your area similar to what we have here. There's a local charity (ReCOM) that refurbishes old computers, mostly from companies who've upgraded, and resells them for very low cost. You have to apply to them saying why it's needed, but I'm sure when you explain, a scheme like that will be happy to provide (this is what we did a few years ago - we paid £80 & it was a really good one, for base unit with monitor, keyboard, mouse etc). Your local library, council or CAB should know whether there's anything similar in your area. Freecycle?
I'm sorry I don't believe in credit cards (having once worked in a credit company & seeing the rip-off/con it was) except in an absolute emergency, as it means paying so much more in the long-run & adds to the stress, but then I was brought up with beautiful second-hand furniture & I think we have a bargain-hunting gene!
I really hope you get one sorted out soon - anyway it's good for the children to be able to learn ICT, do their homework, research etc. I quite understand about not wanting to share it, I have a resident firewall/security expert-IT chappie here but still find that even with separate accounts, child on parent's PC can unwittingly cause havoc (until child becomes similarly expert, Aspeger's being v.useful in this respect!....which is another reason for the children to have one....!).
Wishing you All the Very Best with solving the computer issue.
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DS (10) also has problems with fear of germs, does squat with feet on toilet seat but only at home (won't sit on seat, even with foot-stool), so has accidents at school due to 'holding on'. Also we're often late for school because the urge to go comes just as we're about to leave the house. I'm quite worried about how this is going to work out at secondary school.
He also insists on using the moist toilet tissue, which is much easier than when he got through enormous quantities of the 'dry stuff', but both of these do make it really difficult if we're out & about.
GP wouldn't address the issue & sent him to the school nurse, who we have to call & ask for repeat appointments so have only seen twice over the years. Using movicol. Eating reasonably healthily.
It's been a problem ever since infant school did a 'germs' video lesson, a friend was also really frightened by it, but once they've seen it they can't un-see it! I've bought travel-soft-wipes & paper seat-covers but even if these could be used at school it would be yet more stuff for him to carry around - really would like someone to specifically work with him on it, will have to keep pushing along with all the other stuff (yawn!)
I know there are adults who still have problems but wouldn't it be wonderful if we could 'fix' this one for them! -
Hi Sally,
The thing that I really admire is that you tried!!! Even a day is better than not going at all - perhaps it will help your son for future trips? What did he do in school for the rest of the week - did he cope with this being different? It's so GREAT that he wants to go camping with the cubs! Mine is in Boys Brigade & has refused to even try any of the camps or sleep-overs, though to be fair he doesn't know any of the other boys apart from going there as it's out of our area - the leaders have been amazing with him though. The summmer camp is in a beautiful area right next to where we go on holiday too!
The visual signs do sound great. I managed to get agreement for some to be used in school, put them on favourite colour keyring.....& they sit on the bottom of his bag, he's never used them. But you're right he's never really been 'taught' how to use them in situ. Perhaps we should try them around the house first. We're trying hard to get some language/communication therapy - I'm sure this would REALLY help, especially if they could be persuaded to see him in school. I think that's a really good description of how it is when mine are stressed re communication!, thank you.
Very Best Wishes,
LoubyLou
Is there time before the day trip for your son to be taught how to use some visual signs that can be clipped onto his trousers? These could include 'help' sign, 'toilet' sign etc. He should be taught how to use them in school. My son used them for a while and it helped. My son is verbal, but like most he tends to lose the ability to communicate verbally when he is anxious or stressed. When he was taught explicitly how to use the sign and who to give it to he did use it. Now he can say when he is upset about something.My son did not go on a residential trip when he was 2. He stayed the day and I collected him in the evening. We also visited beforehand so he knew what it was like. TBH he threw a mightly tantrum when I took him home because he wanted to sleep over like the rest of the children. But at that stage the school were not confident they could meet his needs and I didn't know which way it would go. It could have been a success, or a failure. And my son has remembered the fact that he could not stay overnight and still gets upset when he thinks about it. However he is now in cubs and I have promised him that he can camp out with them in May.
That's probably not helped alot! Could your son try sleeping over at another house to see how he copes eg. with grandparents or aunt/uncle??
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I think it really comes down to how confidant you are that the staff who go on the trip with your son will take care of his needs. From our own experience, the staff at the school all know and understand my son to varying degrees, what I have done in the past is highlight any thing that I think may be a problem on school trips etc and the school have always been happy to listen.I know that we are lucky to have this relationship with the school.
Ah, thank you both so much,
We don't have the relationships that we'd like at the moment with the school, however we'll keep on trying... the teacher who's arranging this trip has been absolutely brilliant, has really sorted out some bullying after years of it 'plodding on' & has been really kind & supportive to DS. I'm not sure how much training/background he has but am impressed so far. He did advise that we visit the place, so maybe we'll be able to do that (quite a long journey though) - the people who run it sound very clued up, so I'm not worried about that. Just more worried about other children - ie that he'd need some close supervision. I think 2 teachers will be going, probably the main class teacher. Not sure what they'll do if they don't go, perhaps go with the younger children (2 years below) which I think would also be a difficult change....
LOL,
LoubyLou
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Hi,
DS's school have 2 trips coming up - one residential (hehe) and one day-out. Particularly worried about the day trip, as it's a city visit & a very long day. He doesn't have a particular friend & isn't good at voicing difficulties so we're really worried about how he'll cope. He's been on plenty of trips before but has been very unwell with severe anxiety this year & has new 'out&about' phobias, & may run off if he comes across any of these. Neither of us can go along with them. We've paid the deposit to give us thinking time but are seriously thinking about taking time off work to take him somewhere else.
I don't think he'll go on the residential but we'll try - the place seems very good with AS/ASD. Really helpful teacher has said he can have his own room, though bullying has been a real issue. We may try to visit first & see, also try a night at grandparents, even he just goes for a short time it would still be good.
Any thoughts?! Or experiences??
Thank you!!
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Hello Lizzie,
I don't have any quick-solution ideas, wish I did. Just feel for you. I have an illegible 10-year-old, Dad & me couldn't write properly but both have nice writing now, it seemed to come with the hormones (later for him though - he has exceptionally beautiful writing now), here's hoping anyway! You did well to get school to allow the laptop. Would he communicate well with the scribe? Has he tried this before? This is being suggested to us as something that was supposed to start in September, then after Christmas....(just for the SATS though), but I'm hoping it will be a laptop as having the confidence to communicate clearly with a scribe sounds a big 'ask' to me. I completely agree, handwriting practise, over & over, is very demoralising, and doesn't cure the pyramid of problems (I've got a nice book with a picture in...) from the brain downwards. It's such a pity Senco's aren't always very clued up. Also the OT definitely should visit school, and should see him working - I would keep knocking loudly on their door & anyone else, it does get exhausting I know. I suppose there might be a privately-funded one but you shouldn't have to go down that route - he has a disability for goodness sake! The only other thought I have which I'm sure you've gone down is ringing the dyspraxia foundation - someone did tell me once that there are courses you can take your child to & would be interested to hear if anyone's tried these.
Will continue to read thread in the hope that there are some helpful answers.
I know what you mean about invisibility. Is he quiet and otherwise well-behaved?! Not that it's a slur on those who aren't, it just seems to compound the problem with trying to get the message across. It is VERY disheartening when you put your hard-earned time and thought into a long letter and it feels as though it's just been 'filed'. Can't they keep pushing the LA for more funding??! (am not 100% sure of how this works but I thought the school was supposed to address the need & ASK hard on his behalf?!). Now I'm getting angry too!
Lizzie
Education & exclusion help please
in Education
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My son's head is saying that he can't go in to school tomorrow because he had a meltdown today. He didn't misbehave or do anything wrong, he didn't disrupt any lessons, just wanted to be on his own. He was feeling very down & spoke negatively about himself when repeatedly questioned by a staff member, so school didn't want him there. Can they do this?