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About jlp

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    Mt Blanc

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  1. Could anyone point me in the direct of any information about helping children who have autism and specific phobias? I've made a list of all the worries and fears, we've ordered them according to how anxious they make the them feel and my plan was to start one by one working on the fears, for example fire drills. This fear encompasses the alarms, the lights, being in the building. I've wrote some social stories on every aspect of this such as why the alarm is loud, why we have lights, why we have fire drills, what to do when the alarm goes off etc. We might take photos together and eventually will have a book all about fire drills! Then we'll start on things that beep. I just wondered if there are any websites out there on dealing with phobias etc that are specific to people with autism? I did think about fire safety websites but the problem is that the fire safety information given previously has been taken on board almost too well. We now need reassurance that really we're very safe in school, but obviously we can't say that there will never be a fire. School alarms are quite sensitive too and go off with science experiments etc quite a lot!
  2. Exactly! We always say that if ds2 was drowning and offered a hand in help he'd refuse it! He genuinely will miss out on things he wants. He spots rewards, psychology and reverse psychology a mile off too! PDA was mentioned with ds1 when he was first diagnosed and I didn't believe that this described him so declined to have it investigated further - he can be very awkward but in a straightforward autism way, ie when something isn't 'right' or doesn't happen the way he thinks it should, ds2 is a seriously different personality and the diagnosis, particularly the 'pathological' bit, fits him perfectly. It's so hard to describe the difference between 'awkward' or 'controlling' and PDA but I'm satisfied that both boys have the correct diagnosis.
  3. I have a 7 year old with a PDA diagnosis who is still not toilet trained. We see a consultant at the hospital about his bowels and he is currently on senna tablets as he refused the movicol and could taste it in anything we tried to sneak it in. When things get bad we do need to do cleanouts with movicol which is unpleasant. I have come to the conclusion that he has genuine bowel problems but that things have got very complicated with the autism and PDA - he is worried about germs which means he doesn't like sitting on the toilet, he doesn't like the cold toilet seat, he doesn't like the control aspect of being told to have a try. I don't know now if his psychological problems with toileting caused the medical problems or the other way around. He has always had problems, we used to laugh when he was a toddler as he could never stand anything on his tummy, even pjs were pushed down to underneath it - now he older we realise this was because his tummy can be very tender. We've tried rewards, we've lost our tempers - especially when it used to be smeared everywhere. Now I do rewards occasionally, they don't really make much difference neither does punishement. Ds has been in tears about his 'problem'. I'm not really comfortable punishing because I'm not totally sure it's 100% behaviour, I think there is a degree of medical problem there too. What if I'm shouting at him about something he really has no control over? If your daughter has been in hospital due to her bowel problems then I'd say even if the problem started as a behavioural issue then there is possibly genuine medical problems now. Bowel problems are very common with children with autism and PDA is a form of autism. We manage now by staying calm, cleaning him up without making an issue and trying to encourage him to at least try a sit on the toilet. For a while I had a reward chart that was a grid of numbers to 50, on random numbers I had pictures of things that were his current interest (sonic etc). He got one star for sitting on the toilet regardless of if he did anything, and another one for managing a poo on the toilet. If this meant he landed on a grid with a picture he got something from the 'lucky box' (little things - sweets, stickers) which kept his interest. When he got to the end he got a prearranged reward. It worked really well for a while but then he started wanting to control what he got and insisting he'd had three poos at school so I stopped it - but for a few months he at least tried. My problem isn't really the soiling, it's trying to get him to go along with the problem's treatment and consequences - he'll refuse to take his medication or to shower or to just try to sit on the toilet. We insist but there's a huge fuss everytime! I haven't been on this forum for a while so am pleased to see there is now a PDA forum.
  4. Hi Manda He wasn't given the full ASD diagnosis because the 'late onset' of the condition - we were in an unusual position because my older son was being assessed and seen regularly after his diagnosis so our consultant saw ds#2 develop from a 3 month old baby. As he was a very smiley baby / toddler with good eye contact, none of us thought he would go on to develop autism. I suspect this was because at home with another child with autism, his needs were pretty much met - if he wanted the blue plate he got the blue plate so he didn't get as frustrated. But when he started nursery he became violent and distressed. The report also says how he displayed good eye referencing - when he was being observed he made sure the consultant was watching before he did 'naughty' things like turning on the taps, pulling the stuffing out of a toy. Ds#1 has straightforward AS and is pretty straightforward to deal with. He responds to typical 'ASD' management. He's really moral and honest, sometimes a little odd, - unlikely to lie, wouldn't steal, stopped speaking to a boy who made a racist comment about another child. I can explain things to him and as long as they seem fair to him he will accept it. He strugles socially though and gets upset easily when things don't go how he thinks they should. Ds#2 is a different personality altogether, he doesn't really respond to ASD strategies, can lie convincingly, has no apparent morals! His behaviour is much more of a challenge. However on the surface he is much more social, has lots of friends and can have a good two way conversation with people that isn't just based on his special interests. He still displays ASD tendancies such as when I stripped the wall paper on the stairs last week he freaked out and tried to glue it back on but if you met him briefly you probably wouldn't think AS.
  5. I'd forgotten about this old post! Just to update, a few months later ds2 was diagnosed with a-typical autism and PDA. He spent a year in an autism unit which couldn't cope with him, then was moved last September to an EBD school which I was horrified about. To my shock however he has thrived there, now loves school and isn't sent home for the rest of the week every Monday and has made amazing academic progress - 5 sublevels in maths in one year, he has trumpet and singing lessons as part of the curriculum lessons (child who would scream at music) and is apparently very talented at swimming and trampolining Home life can still be very difficult but his school life is transformed.
  6. I like the idea of industrial carpets - I might seriously look into whether that might be possible! I asked about the disabled facilities grant (we are council tenants) at Christmas when the floor boards were black and rotten due to a problem with the shower running off the end of the bath due to a shelf and ds2 splashing but they said after many phone calls that we weren't eligable as the problem arose from our child's 'behavioural problems'. My Dh and my Dad put some new floor boards in the end. We could really do with a wet room floor (and the shower moved and some re-tiling) but we wouldn't be able to afford it in the near future. With his PDA if he suspected I was trying to steer him towards something he wouldn't want to know - he does things that he thinks will cause damage and upset so it's different from steering him to more appropriate but similar things (ds1, pure AS, however also had a bedroom of lampshades and fans ) Thanks for the ideas and any others are welcome. I do try to 'let go' but then I worry that professionals etc will think they are sad neglected children and even people in the know like my parents will have a go sometimes if the house is a total tip.
  7. I have two boys with autism, the youngest ds2 is 7 and also has a diagnosis of PDA. He is extremely challenging right now. I'm getting to the end of my tether with regard to picking up and tidying up everything he trashs / throws / empties out or breaks! Carpets are stained, walls are mucky and the house is such a mess. He's also incontinent bowel wise, will smear and at the minute is wetting himself a lot too and it all seems like a huge exhausting cycle of picking things up, washing and scrubbing whilst it still looks like a tip. His targets are unpredicatible - he's been fine with the bathroom stuff for ages so I've left it in the bathroom (used to remove it) but last week he emptied all the bottles into the bath. Today the TV cabinet was emptied and thrown all over which was a first. His brother's room is his main target. His brother is 11 and has AS and I really feel for him having his stuff broken and messed up so often - I did consider a lock but he tried to hurt himself a few years ago and the thought of him being able to lock his door makes me feel worried, particularly as he's so stressed right now with ds2's behaviour. Ds1 also has anxiety issues and won't be alone in a room. So apart from decluttering without mercy has anyone found any other tips or techniques for trying to stay in control? I'd like to get rid of the carpets altogether but noise wise for us and the neighbours it would be intolerable.
  8. I went to Appeal with my claim for higher rae for mobility with my Aspergers son and won. Whilst having above cognative abilities, he lacks 'useful intelligence' such 'a car won't hurt me because I'm made of metal' and other examples.
  9. It's not simple is it? Actually a lot more confusing than I thought. I'm actually about to begin a position as a TA in an ASD provision so will be aware of how much I cost! I think I'll keep looking at schools and not worry too much about the financial side till we find the right one
  10. I'm currently thinking about secondary education for my son (ds1) who's 10 and about to go into Y6. He attends an ASD unit attached to mainstream (which he doesn't access). It's difficult to see where he'll be best as he has apparently got mainstream academic ability (I don't agree - he doesn't know his 2x times table, how to tie a shoe lace or tell the time, however he is very advanced reading wise and retains a lot of facts that way). He wouldn't cope in mainstream however, I do know that and I'm not prepared to accept a unit at secondary as it's been quite isolating for him (due to his own worries about being different). So whilst looking I came across a special school that costs approx £18,000 a year and this got me wondering - how much will he be costing the LA to be in an ASD unit with a statement? Does the fact that a child has a statement bring in a specific amount of extra income for a school regardless of which school? Or does it depend on the provision? Or does it depend on the actual statement itself? For example he was in mainstream with full time one to one previously, would this bring more money into the school than now where he is in a unit? Ds2 is in a special school of only 30 children - is his statement at great financial cost? All very confusing and I wondered if there was a standard formula?
  11. Ds2 is 6 and currently in an asd unit. His diagnosis is PDA and a-typical autism. Yesterday his teacher wanted a word to say that things are not going well at all - he's been sent home twice this week and on a separate day has badly bruised another child - she asked us to think about a specific special school with caters for children with emotional and behavioural difficulties. I'm so shocked that things are so bad that even with fulltime one to one and an autism unit, that they're not coping. He is exceptionally difficult! Has anyone any experience of behavioural schools? My instinct says no but he's so different from his older brother who has asd and is doing well in the unit. With ds2, the PDA is the prominent problem.
  12. jlp

    Me again

    I can totally emphasise with your joy! I have a son who's 6in a few weeks who won't sit on a toilet seat (I think this is a sensory issue as he doesn't like anything that feels cold to him at all). We have major soiling / smearing issues with him. Can I ask what do you think has made the difference with your son with this particular toilet seat - did he have a fear of falling or do you think he had sensory problems? I'm quite disappointed with the lack of support we have had with our son's soiling issues, we've just been turned down by a nursing team as he doesn't have learning difficulties.
  13. jlp

    Running away

    Thanks all, I will speak to the Head when we go back on Tuesday and ask if there's any way the gates could be made harder to open to slow him down, they have slidey bits that should slide into a slot but these are padlocked so they don't move - even if they were slid into position, that would slow him down. Also visitors often leave the gate open. Luckily the uniform has bright yellow tops so he is easily seen if he has his jumper off. Ds1 was also a runner and had safe places to run to so it might be worth thinking about, ds1 only left the grounds once however, he tended to head for the field. Ds2 is a very different and his PDA is very obvious within his personality, he tends to do the opposite of what he thinks people want. School did buy a tent for ds2 to withdraw to in the classroom but he realised this is what people wanted him to do so refused to have anything to do with it, sigh! Suze, you're right about the bum smacking. I personally never smack. DP and I differ quite a lot on how to deal with the boys, I'm probably a bit soft and he's a bit too strict - we're continuing to try and aim for a middle ground and usually manage to but sometimes it all goes out of the window. I'm not upset with you mentioning it, I was upset myself at the time. Baddad, that's an interesting way to think about it - the second time he ran from school, I would say it was a definate fight or flight thing, pure panic and needing to be with me. I wouldn't rule the possibility out though as he is quite capable of trying to create a reaction, if he's doing something at school and is ignored (as they've been advised) then he'll do something worse until it's something they can't ignore. Must go as he's having a tantrum.. Any thoughts on suitable sanctions...right now he's being kept in from playing out and not allowed on the PC, DS, PS2 etc while grounded, at first it was for a week but I thought this might be over the top. Dp's thoughts are that it should be a week.
  14. jlp

    Running away

    Ds32 has discovered running away! In the last 10 days or so he's managed to get out of the school grounds twice and ran away from me last night He's 5 1/2 and diagnosed with atypical autism and Pathological Demand Avoidance. I had a terrible day with him yesterday, he bit his best friend at school (luckily the best friend's mum is my best friend so was understanding) and ran away from me after school - he didn't want to go to Grandma's for tea. He usually loves it there but sometimes gets into really contrary moods. He crossed some roads, one busy, without even looking and I lost him altogether at one point and had to ask a man if he'd seen a small boy in a yellow top. Anyway, got him back and he was punished by not being allowed out to play when we got home (he adores playing in the street with his brother and friends), when dp found out he'd crossed roads he smacked his bum too. This morning he woke up in a much better mood, ate his breakfast and got dressed without the usual fuss. We were actually early for school for once and he was running round with ds1 and the boys from his class (ds1 attends an asd unit attatched to ds2's mainstream school) As soon as the bell went his mood changed and he decided he wasn't going to school, I got ds1 in then eventually managed to get ds2 in by walking away and he followed me in (he likes to sneak behind you and thinks no-one can see him). Handed him over to his support worker - he wasn't happy and went running off down the corridor with her in pursuit so I left (making sure the security door and the gates were closed behind me) as if I stay he doesn't settle down. Walking back to the car I heard some almighty screaming and then ds2 appeared running out of the gates, followed a minute or so later by half the school staff. He'd ran straight down the corridor, through the school and out of the back door which should have been locked. It took ages to leave him again, part of me wanted to bring him home there and then but if I did that he'd think you run away and you get to go home. So fed up, he was hysterical and really upset saying he just wanted to stay with me. I'm not sure what to do next, I think I might email and see how his statement is progressing. He's not had a good spell since going back after Easter. I'm sure there will be a review of the school security as there was last time so for it to happen again isn't good - his support worker is nice but she's not young and has asthma and joint problems so not great with a child with a tendancy to run. Last week he ran away too - Yesterday when dp went to collect him he was called in for a word. Ds2 had apparently made a model out of some blocks. At tidy up time another child had tidied his model away and ds2 went beserk - pulling the work off the walls, chucking things, lashing out. He was taken out by the TA but continued running round the school causing mayhem so was taken out into the yard (often happens so he can run some energy off and cool down). Apparently he announced he was going home and off he went. Apparently he got quite a way from school, almost to the main road They were all very shook up and school had to have an emergency meeting last night to discuss what happened. The school gates can't be locked due to fire and health and safety so for now the dinner ladies are posted at the gates for lunchtime.
  15. My son is 5 and in Reception and was recently the only child in the whole class not invited to a party which I found very hurtful. I can understand that sometimes only half a class are invited for reasons of cost or room and that's fair enough, but not to invite one child...
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