Bat

Big hugs Hev and Steviegirl <'> <'> <'> Bat

That's brilliant! We have 'Betty's' I have no idea why Pipstrelle came up with that one, but that's when they have the choice of going to the hairdressers to get their fringe cut, or going to 'Betty's', which is sitting on the workshop in our kitchen and having me trim their fringes. Who knows, but it works for us! Bat

Mumble, that's brilliant, thank you! That would make sense about the shoes, though I think summertime has a good point too, she could be using this to overcome other sensory input, I know CAMHS have referred to it as 'grounding'. The sticker thing, we think it might be linked to lots of medical tests and treatment she had when she was smaller (much, much smaller) - every time they took bloods they gave her a sticker, and when she needed op's they used stickers with cream to numb the veins. Now when they give her a sticker in school, she'll tolerate it until she reaches me, and then she sort of shrinks away from it until I pull it off her clothes (and wash my hands and then we're ok as long as she can't see it any more. The really big breakthrough was on Thursday, I actually got her into a shop (we don't do shops, so I could see where you were coming from earlier), and she adores green banana's, but they had stickers on, so I was 'allowed' to move the sticker to the back of the bunch so the cashier could deal with them, but she won't eat the one that's had the sticker on. Some other stuff she has been able to explain, and it makes perfect sense, maybe we'll just have to wait for this one Bat Back to the shoes again...I've learnt to check we have shoes, at least a pair in my bag, before we get in the car now as she's done that one!

Hi Hev, It's the 'diagnosis' we've been given, when they assessed her, they said she was 90% on the spectrum, but that her social interactions didn't fit, in that she wants to be friendly with others (she can't manage it, she doesn't understand social conventions or play but they missed that), so they couldn't diagnose her as typically asd, but she has enough traits and beahviours to describes her as atypical - she doesn't fit the usual pattern, but her overall behaviour is autistic (confused yet? We are!!!). The Comm Paed reckons they'll dx her around 9, she was assessed at 4-5yrs. She's an utterly gorgeous, hellishly complicated little bunny! Bat

Now I've mentioned this in other posts and it's got me wondering.... How does walking in barefeet help Pipsqueak cope, and why exactly can't she cope with stickers? If she's had a rough day, or we're in a new environment (so she's stressed), or she's excited, Pipsqueak immediatly takes off her shoes and socks and walks barefoot. It calms her right down, and she says it feels good - even on sharp gravel . We've managed to get around some places I never thought she would manage, as long as she is barefoot, and she coped brialliantly at the theatre yesterday because she was barefoot and could bang her feet. At other times, holding her very tightly has a similar effect . And then there's labels and stickers . We don't do labels, in fact we don't do anything with writing on because she can smell the writing on a label or a sticker, they smell of old things and make her sick. Hence the breakdown over the new towels this morning, they had been stacked in the bathroom, and some of them still had labels on and one of them had a sticker on. Dad mentioned the sticker word and all hell broke lose, she was in a dreadful state by the time I got up the stairs, she was in a cold sweat, sobbing and hiccuping for breath, we threw the towels out of the bathroom, and asked Dad to leave too, calmed her down and reassured her she was ok. But if I had touched the sticker, I would have had to have washed my hands, because I am not allowed to touch her if I have touched a sticker first, she can't explain why. Most of her things I can work out, and even these don't cause me any angst, I just deal with it for her, but I',m just wondering if anyone can shed any light to help me understand her a little better! Thank you! Bat

This has caused so many problems in our family. I don't make Pipsqueak conform if she's using a coping mechanism, I'm usually just pleased she's found a way to cope in a situation that she's finding difficult, but I will help her reduce the coping mechanism so she doesn't draw as much attention to herself (chewing gum, shoes and socks off etc). Grandma (and school) do force Pipsqueak to conform and that usually means that I get the benefit of the tantrum or the really violent fall out, because she won't relax until she's with Dad and I. It's a really difficult one. Bat

Hi Mumble, I'm glad you got something to eat, but I'm sorry you're not able to talk to your Mum, but I think it's good that you can speak to your supervisor and tutor. I'm just off to sort those towels out for pisqueak now.... Bat

I'm really glad you've been able to sort things out. Our girls go to Brownies, Pipistrelle has finished now and Pisqueak not long started, and i stay each week to support them. It's given them both a lot more confidence and they really do enjoy it. Bat

Oh Mumble, What a rough day you are having, I hope you've managed to get something to eat, and I think you've done so well to list all the things that are bothering you. Both Pipstrelle and Pipsqueak can't handle changes at all and their scare-ability goes right up, and very quickly. Pipsqueak struggles with lots of the same things that you do, and when she is she is unsure of things around her, her tolerance levels go right down. So because it's a Saturday and she usually goes swimming on a Saturday, she's been very upset this morning because her routine has changed and Dad has made a picnic so they can go out this afternoon. Then she discovered the towels (new ones) still had labels on them, and some of them had stickers on, and she can't manage being near stickers, and dad mentioned the word, so she sat and screamed and sobbed until I got up the stairs to her and we had to ask Dad to leave the room. She's gone off quite happily now, but at first she wasn't convinced that she could manage being out with dad and big sister beacuse of the sticker thing. I know you and lots of others on here understand that, but to anyone else, it's huh????? Do you have anyone you can talk to about how worried you feel? Can you talk to your Mum or sister about helping you find the right person to contact? Can they find out if this person has an e-mail address so that you can e-mail them things if you're not sure how to approach them or what to say? Pipsqueak can't ask her friends to play, I have to ask them and then explain the game to her, so I do understand how hard it can be to go up to people. I can't tell our girls which bits are broken, but I tell them that their brains work in brilliant ways that mine doesn't and they've taught me completely different ways of looking at things, so, as a mum, I'm hoping if you can e-mail your Mum and sister the worries that you have, they might be able to help you sort them out or find you the right person to help. Your Mum might be happy to chat to you about her operation and reassure you about the risks and how you feel; maybe you can even work out a plan together of who can help if things don't work out the way they should. The Uni might be able to send you a picture of your room (we do this with our girls before holidays etc so they know what to expect). Someone at Uni will be able to help with regards to teh exams and what to expect, and also what will happen after the 2 years. I hope today starts getting better for you soon. Bat <'> <'> <'>

We've had this one with Pipsqueak, and we've gone down the route of peoples bodies are like machines and sometimes they get to sick, too old or too broken to fix. We've explained that their spirit leaves their body and goes to heaven (I didn't want to scare her with any other ideas), but that the bodies stay here with us, and we need to do something with them, as we can't keep them around, so we have a funeral to let us say bye, and then either bury them in the ground or cremate them, that way, we know where they are and they are safe adn there is somewhere to visit to help us remember people we have loved. She's taken this really well (she loves logical things), but can't get used to the idea of using the word funerals or buried, and will insist on asking 'if dead people have been graved yet? ' I've also told her she won't be getting rid of dad or I for a good while yet, that I intend living forever to keep an eye on them . Bat x

I'm just wondering how the computer would grade the 14 pieces of additional information we had to send for our eldest daughter's last claim...scary! Bat

Both of our girls have been bullied, one so badly we ended up threatening school with police and legal action; htey dealt with it then. Other little one is regularly bullied, she's moved schools once and she still has problems in her new school because she doesn't understand the social side of things at all. We've also found that friends children will goad her to snapping point, she gives a good floor show once she's melted down and then they all stand back with angelic faces to watch. Needless to say she carefully and discreetly 'policed' by us at social gatherings now, and things have improved. Bat

oooh it's deeply nasty stuff and has been banned in our house for a long time, causes poor Pipsqueak no end of problems (as does gluten and cows milk). We tend to buy lots of organic stuff, both girls have lots of water and pure juice to drink, and we bake lots of gf cakes rather than buying them. It's a nightmare at parties though, watching out for it when it's not labelled, fortunately, Pipsqueak now prefers to carry her own bottle of water, and at least I know what she's drinking! Bat

Thanks Krystaltps, We've been away for a few days, and will start to factor in breaks for her from next weekend, that said, she refused her milk (which had it in) last night, and settled well, so she's sort of had a break of her own volition! We'll just do organised ones from now on though. She did manage to fight it while we were away, and only slept for 3 hours the first night which wasn't idel, even after I'd doubled her dose to 4mg. Just living and learning with it at the moment, but her beahviour is still noticeably calmer, and we're only a week in. Bat

We have had an absolute nightmare with school, they still don't get it. We've moved schools once when they told me that it was my parenting skills that were the problem (they couldn't explain why eldest who was in the same school was parented appropraitely), and we are now doing part time. Pipsqueak can't cope with a full day, she stops eating, sleeping and drinking, but because she 'appears' to be ok in school, there is no issue. I've tried handing in information for school, and was accused by the ed psych of 'disabling' her and of providing 'quasi-medical' information for school (it was a list of her traits and how we deal with them). We're actually looking to homeschool from the end of this year, she should move into juniors, but I think that will be a leap too far, and school are unsupportive of the part time aspect, even though it's working really well for us, and her achievement levels in school have actually gone up. I really do hope you have success in getting them to understand your situation. Bat x

Pipsqueek was walking at 10 months (climbing at 11 months), didn't speak with any clarity until she was nearly 3, but any language assessments had to be done bi-lingually as she signs too, in sign, her vocab was way ahead. Bat

Our 7 year old has just started on melatonin this week, and for the first time ever, she's settling to sleep within half an hour, which is great. The only thing we have noticed is that it seems to have surpressed her appetite noticeably, has anyone else had this issue? Other than that, she is calmer and more settled, not as 'tantrummy' and seems more able to cope generally - I even got her into a shop yesterday (we don't do shops). Has anyone any advice on meltaonin breaks though? I don't want to swamp her. Thanks! Bat

I wonder if anyone can help? We have a 7 year old daughter who has been going through assessment for an ASD for the last 3 years, we are still no nearer to a completed diagnosis, at the moment she has a tentative diagnosis fo traits of various things, the big sticking point being that when they went to visit her in school, she appeared to be sociable. She is, she can't maintain friendships or understand the games they are playing, but she is desperate to be one of the group. She is struggling badly with the sensory side of school, only able to attend part time, holds everything in and meltsdown at home each afternoon, to the extent that we are prepared to pull her out and HE her from September. But I wonder, as part of the assessment for diagnosing an asd is visiting her in school, should they decide to reassess her in light of worsening trait, how would they do that part of the assessment? Thanks, Bat

I wonder if anyone has any ideass for coping with this one? Our youngest is not very good at knowing what her body is trying to tell her; she can't always tell us when she is hungry, thirsty, hot, cold or needs to go to the loo or is in pain. We can check and remind her, but that doesn't work she's adamant that she knows how she feels, so we have meals and snacks at regular intervals; and drinks are offered regularly, we remind her to go to the loo, but she can go for up to 12 hours without going, and telling us she is fine, she doesn't need to go, then all of a sudden she does or she is wet. She has regular meltdowns, and we work through a checklist (hungry, thirsty, toilet, pain, too loud, too bright etc) and usually find the solution, but does anyone else have this, or have any ideas for getting her to recognise the things her body is telling her? Thank you! A Demented Bat

Both our girls are under CAMHS, and they periodically try and close the files, and we insist on them keeping them open; it is so hard to get a referral here, and the waiting lists are so long, I need to know that we can just pick up the phone and get an appointment when we need one, not 12 to 18 months down the line. Bat x

Yes, we get it every day, at home, at achool and out and about. It makes me feel very cross to be honest and very alone; we've had it all afternoon today when we were with family, but they weren't here to see the big meltdown before bed, or know how much prep went into her being able to enjoy herself this afternoon with other family members, or the panic attacks she had before we got there. School don't see the meltdown every afternoon when she gets home, when she's screaming and shouting about the noise, how it's too busy etc, hitting, kicking and biting me because they had assembly on a different day and nobody told her. We had a very difficult day yesterday, lots of meltdowns, and it's exhausting, it's also so exhausting when you feel like nobody really 'gets it', and it reinforces to me that no one really understands how she must be feeling. But I suppose, she is perfectly normal to me - in an atypical asd/adhd/ocd/anxiety disordered sort of way Just wish the rest of them understood! HC x

Wow, I thought we were the only ones who played this game! Our daughter (7) will only eat a few very specific (and mainly yellow) foods (but she won't eat from green plates or drink fro green beakers), she won't eat in other peoples houses, and struggles when we are out and about (other people may have touched her food, she also has OCD). She is very tall for her age, and she has truncal obesity too, so she looks very toddler, but I'm beginning to think that there may be an intolerance there, she is already wheat intolerant. She will eat really strong flavoured foods - goats cheese, olives etc, she will also eat eggs, gluten free toast, cheese omelette, roast potatoes, gluten free pizza, potato wedges (but only from one shop), baked beans, bananas, wheat free spaghetti and yellow rice, as long as I take all the 'bits' out of it, and that's about it. She drinks water or milk, and the big breakthrough has been apple juice. We make cakes that she will eat (only when warm), and she'll also two flavours of crisps, and chocolate (very, very dark chocolate), but the problem we have is that she is anaemic, and I can't get the iron supplement into her, so I end up buying fortified lolly ices etc to try and get something into her! She also prefers to eat with her fingers, and struggles to co-ordinate a knife and fork. We've really eased off worrying about it, and that has really helped, we also follow meal patterns to try and give her some variety and reflect what the rest of us are eating; we're really used to it now, but the family do find it odd if we go to dinner and I turn up with her roast potatoes in a foil container, ready to be cooked - if she knows I cooked them, then she'll eat them, but otherwise nope, she'd be happy to starve. It'll make me feel so much better tomorrow when we are out with family, knowing others have the same issues at mealtimes ! Bat

Hello, I'm Bat, Mum to two gorgeous girls, eldest 12 yrs old, and youngest 7 years old; both girls have special needs, but youngest has a tentative diagnosis of atypical autism with traits of ADHD, OCD and a generalised anxiety disorder; currently doing battle with school (and the medical profession, we'd like a proper diagnosis), and probably looking to home school her from September. Bat x