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why does it feel fake??
  • mrscoco
    Posts: 190
    Ok so my daughter has been pretty relaxed all weekend because there have been NO demands placed on her and she has pretty much just sat about in her pjs playing video games. I let her stay off school today too as it was sports day and really did not see any point in putting her through that.. Any how tonight at 6.30 I told her to get off the video games as she wanted to wash her hair (even though she been off all day she would never have done it in the day as not her routine) I got a little angry as she was stressing about all the things she had to do, like go to the toilet, wash her hair and arrange her room before she could relax and then go to bed (shes been off for 3 days!!!) and she just said she couldnt do any of it not even go to the toilet and proceeded to meltdown but it seems like she is faking it to get me to sit with her and make it all ok. Shes been going for 20 mins upstairs crying - Is this just demands kicking in an making her have tantrums?? why does it feel like she is faking it to get my undivided attention - ??? Prob know the answers myself but i like to get others takes on it.
  • Holly59
    Posts: 2,586
    I know exactly how you feel. I tried for several weeks for the youngest to sort out the family room with all his music equipment . It got to the stage where , " I will do it shortly " was wearing extremely thin. I tried al the suggested methods . I know how much he hates other folks touching his things.
    Was so past the point this Saturday braved the elements, opened the patios doors very wide , ironed the crumpled music sheets, there was enough dust on the TV stand to write your name, he had cleaned his computer keyboard and just left the muck everywhere. Dead flies, spiders, you could not sit on the settee for junk. Amazon packaging just opened and dumped. Found missing socks, well you get the drift. When he came down about 2 pm said Absolutly nothing, no meltdown, then had the bloody cheek to tell his older brother he had tidied it up. The music will lie in neat little piles for the next 25 years no doubt. Last time he lost a music book and had a meltdown it was my fault as per norm.

    As for shaving think we are up to week 5 or 6 now lost count. He has been showered.

    Learnt yesterday from PlanetAutism about Role Play and avoidance. This was the one thing I was unsure about in the youngest. Since its been explained to me my youngest has a Masters Degree and a Docterate in Role Play Avoidance. Could write a Thesis myself on the subject.

    The thoughts of your daughter returning back to school after three days is a big challenge. Add on all the demands .They say choose your battles carefully.

    I have a secret supply of dark chocolate bounties and tablet for these moments of despair. For those wondering what tablet is ,not the medicine kind, it's an appaling unhealthy sugar and condensed milk combination boiled till its caramelised and pure sugar. Like caramelised fudge.

    Doesn't solve anything but it gives me the energy to carry on.

    I have tried every avenue I can think of for this music, have suggested, asked his opinion, him being the expert, nothing has worked so far. Even the neutradol air fresher was struggling!!!

    Stick in there. Think positive you have had three really good days. The hardest thing is to stay calm. You understand what's got to be done , but unfortunately all these demands together . It's so unbelievably frustrating for you as well.

    Don't worry it's not you, the joys of PDA.

  • mrscoco
    Posts: 190
    Thanks Holly59 - yes the frustration omg!!!! I find it really insightful to see how others function, I think im just nosey!!!!!! Well it only took 1.5 hours for everything to be ok enough for my daugher to proceed with her evening routine.... ive realised because she is so complex there are many different stages we need to go through she gets herself in a rut so the first stage is blaming me BUT only when she is ready to start, so she was doing a fake cry and then nothing I do is good enough until SHE is ready - she got mad at me and told me that it was All my fault because I am supposed to write out a plan for her so she can get started, then I have to tell her its all my fault and sound like I mean it, then she gets mad because she says its actually not all my fault but if its not all my fault and its def not her fault whos fault its it .....the answer 'its nobodys fault' after that we have to do a few other things like watch something funny on you tube like funny cats and then once she is feeling better things start to get back to normal.....tonight she opened up and told me that her room was stressing her out, because she never wants to admit that she does have ocd, she told me tonight that because of all the things she has to touch in her room and when she turns on her lamp she has to stare at the switch otherwise it does not seem perfect to her, so we talked about that and I tried to give her some tips about what to do, all the while being extremely careful not to say the wrong thing (because that could lead going back to square one) I did feel for her a lot though, and didnt actually realise just how much her bedroom is stressing her out...then after that she started panicking that she wouldnt have enough time to do everything before bed, so i had to tell her she didnt have to worry she could take her time and it would all still be ok (got to pick my battles, I might want her in bed by 10pm but the reality is its prob going to be much later) she already told me that her concept of time means that she thinks everything in her mind feels like it will take much longer than it actually does....and then we have a cuddle but I have to be careful there too because sometimes she feels like she has missed part of the hug or if i hug her in the wrong way it might set off her sensory issues........I used to be able to hug her and not think about it or worry about it.
  • Holly59
    Posts: 2,586
    Aww that's lovely.
    I know mine because of the Asbergers have problems with prediction. They can't work out if they don't do things within a certain time frame what the outcome will be. Added on the demand part of PDA. Still waiting for diagnosis, and the youngest has ADD well it's really hard.
    As I said in a post yesterday if you can understand why they do something it make the behaviour more understandable . No less frustrating and demanding for us.
    PlanetAutism explained that parents of AS children have stress levels the same as front line troops.Too true. Unless you live with someone with issues such as our children people don't understand what goes on behind closed doors.
    You have done fantastic tonight. I always think of the positive out of a situation, what I have learnt from the experience. It used to drag me down to despair when I thought of everything that went wrong, there was no light at the end of the tunnel.
    Hope it's not too late of a night. Mine went to bed at 2.15 last night. About average for them.
    Think of all the positive parts and the achievements you both have made. Well done .
  • mrscoco
    Posts: 190
    Aww thanks holly59 your words mean a lot that's why it's great to share what we go through on here....people that really get it ...because to others who haven't experience of it it's just not the same....yes she was in bed by about 10.50 after I had gone round and got rid of about 5 months and 2 spiders gahhhh need to look for some moth repellant on amazon prime least of my worries I suppose ...we gave chatted about the morning and no meltdowns great in theory will see how it pans out...she wants to be up at 6.30 I'd better go and get my zzzzzzzzzzzzzzs. Hope you and yours have a good calm eve x
  • berniehenry
    Posts: 224
    BerniehenryJuly13 Hi mrs coco and Holly59 Ithink it is very helpful for us parents to share it kind of lowers your stress levels !You really feel that you are going round all the time with an ignited bomb in your hands You don't know when it's going to go off or what's going to make it explode but expode it will Ithink some days are more explosive than others you just have to keeptellingyourself tomorrow is another day but living with our very complex children does take its toll I don't know who I am any more dealing with my son has sucked the life out of me I love him dearly but I hate what autism/PDA has done to him His gone tosleep now after pacing round his room for over an hour He was very difficult today hard a serious meltdown in a bookshop. Don't know why.Do you find it hard to do the regular things in life when they are around like doing your shopping ironing or any basic household tasks Ithink it would be easier to look after ten two year olds than to look after my son he is such a full time job Take care and thanks for sharing.Its good to know I am not alone
  • PDA_ASD_Parent
    Posts: 4,188

    Do you find it hard to do the regular things in life when they are around like doing your shopping ironing or any basic household tasks

    @berniehenry I find it impossible to focus on anything when either of them are in the house! I was trying to work out why, if it's because of my own autism being responsible for some reason (making me unfunctional) or just the being a parent of autistic children, meaning without even realising it myself I am subconsciously on tenterhooks awaiting the next complaint/demand/rant/meltdown which renders me useless anyway!
  • Holly59
    Posts: 2,586
    I totally agree I detest the Autism but especially the PDA part and how it's affected by boys. It breaks my heart yet listening to other parents situations which are far worse than mine humbles me.

    Thought I was back to square one when I found the youngest still up at 04.00 am playing computer games, but he did go to bed when I asked him, another positive , he did get up yesterday just after lunch and eat . That's a wow.

    It's the trying to work out as you say berniehenry when your son had a meltdown and you can't work out why , which is the difficult part. It's also dealing with this in a public place .Its not just the meltdown it's the effect it has on you for hours , days, afterwards , you feel churned up inside and in shock. Walking on egg shells and trying to remain calm. It's also the effect it has on your son, there was an interesting article on PlanetAutisms Facebook page about that the other day. You can see the issues from both sides.Still so difficult to deal with.

    This new research questionairre has given me HOPE . Hope for us parents and especially hope for our children , a better understanding of PDA so we can provide the care they need. The one thing I dearly hope they can find is a test early on for both Autism and PDA, as we all know early intervention is the key.

    Although I detest what this illness has done to my children it's made me a better person . You do appreciate things which everyone takes for granted , like my eldest son leaving the house to go into town. It brings a huge smile and I am so so proud because I know what he had gone through to achieve this.

    We all become Psychiatrists and Psychologists in our own right. I might not understand their big words and elaborate explanations but I know what I see and hear. I only wish others would understand and listen to our situations. We have hands on expereience 24/7 each day. There are a few brilliant folks who have listened I really appreciate being treat with dignity and respect .it makes an enormous difference.

    Thanks ladies for sharing your experiences xxxxxxxxxxxxxxxx

    Just seen PlanetAutisms post, OMG you're brilliant, dealing with your two girls, a family, a brilliant Facebook page, blogs, you're Input this site. You have answered questions for me that no other proffesional has. You are a Superwoman, an amazing lady. On top of that you are in poor health yourself. You are an absolute STAR.

    It's just as well we have a sense of humour and have an outlet to offload our feelings and experiences. As PlanetAutism said the stress levels are on par with being front line troops.

    My youngest has an obsession with Napolonic Wars and if he went into this shop might never get him out. I was thinking from my point of view full combat gear for meltdowns. Glad I still have some sense of humour , it's living with Asbergers, it puts a different slant on your sence of humour.

  • mrscoco
    Posts: 190
    oh my goodness yes, - i feel like i cant hardly function at times and being somewhere on the spectrum or add my focus goes off track and i find it very hard to do lots of things at once its hard to get anything done at all, i just go round in circles my daugher needs constant micromanagment even when she is in a good mood and happy - she needs to bounce off me constatly and every interaction we have she would need a kiss and a hug to "seal it off" then there are the confession times which thank god have got heaps better since the began last summer, and usually occur when my husband has told her to do something or she has talked to someone on minecraft or the games she plays on her ipad or anything really!! Then there are all the spiders and moths that need to be captured.. i could go on! however if she is in a happy mood then i am happy and dont care about the workload too much!!
  • berniehenry
    Posts: 224
    Bernie Henry July 15 Hi all planet autism it's not because of your asd please don't put that guilt on yourself you are one of the most inspiring people I have never met.You must not beat yourself up. You are a TRUELY INSPIRING person

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