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PDA and controlling what fabrics the family touch!? Anyone had similar!???
  • mrscoco
    Posts: 190
    Hello, Just wanting to find out if anyone has experienced anything similar to this. My daughter is 13 and has diagnoses of HFA/Aspergers, she has many PDA behaviours and also ADHD and OCD type behaviours, not to mention sensory issues. Just one question....over the last 6 months to a year she is so controlling of what myself my husband or my son touch, it used to be just my sons feet touching our suede type material sofa and all we hear all day long is "feet" "feet" because bless him he is only 8 and his feet dont reach the floor like ours .... but now its my bare feet on the carpet just walking, or our hands or feet on the bed covers etc or me brushing something off my jeans.. she will almost go into meltdown, saying that the "feeling" wont go away and it feels like a pain in her head and even after the event has happened she cannot think about anything else or move on easily as its like an inprint of the "feeling" has been left. I do take this seriously and often it means that I will just have the kids separated in different parts of the house. What I dont get is is how that she can have her feet on the sofa or on the bed covers, it does not seem to be a problem for her, even though she says it can be. I would be interested in hearing anyones advice on what they think this is!!
    Thanks :)
  • webbwebb
    Posts: 2,543
    We have a very similar problem with our son and have done since we can remember. He is now 22 but has been like this since approx. age 4.
    He has severe sensory processing disorder, particularly touch, smell and sound.
    I am not allowed to touch certain things in the house or he goes into meltdown until I have washed my hands!
    When we are out shopping and I touch toys, fabrics or ornaments he goes crazy and I have to rub my hand on my clothes or he can't cope with the feeling in his head?
    We have to be careful which fabrics we buy for our home as our son would hate certain textures next to his skin!

    Some days our sons Sensory difficulties will be very severe and cause his many problems but there will be other days were we notice that he copes better with touching fabrics or tolerating smells.

    The best thing to do is to make as many allowances as possible as sensory overload is an awful experience.

    The only other thing is to get a Paediatrician to refer your child to a Sensory Integration Trained OT. They will do an assessment of her sensory difficulties and advice on a sensory program/diet to help her.
  • berniehenry
    Posts: 224
    Bernie Henry Hello mrscoco My son has autism odd and adhd and Iam totally certain from being on this site he alsohasPDA I think children on the spectrum all have sensory difficulties that present in different waysMy son can't bear the smell of anything spicy He says his hair gives him an headache , I came in one day a while ago to find he had chopped his hair with the kitchen scissors and it wasn't a Vidal Sasoon stylish cut it looked awful When I asked him why he did it he said his hair was giving him an headache He will only wear track suit bottoms and they can't be grey He really likes to wear shorts and I mean very short shorts not suitable for the middle of winter He has certain rules for what we can wear also it's all about control!Your child is presenting with sensory overload in his own wayIts very hard to deal with my son moves the goalposts all the time what troubles him today maybe something completely different tomorrowIts so hard but we have to keep going for the sake of our beloved children who really have been given a hard burden to carry through life kind regards bernie henry
  • mrscoco
    Posts: 190
    Hi thanks both of you! It's so great to speak to others and see the similarities. ...my daughters pda traits really only became aparant a year ago after what I can only describe as a mini breakdown and what emerged after that was an extreme need to have to tell me any thought in her head that gave her anxiety. ...all day long she would be having to "talk" to me and really it just mother into all these obsessive sayings and mantras to "cover off" her constant made up guilt.... everything became about control and whilst she has been at school this whole time and doing pretty great there, getting her into school gas been another matter...it got so hard because she had to say all these things to me in the car and she got so paranoid about the other kids seeing her in the car that I was moving the car up and down the as street etc and only when she felt it was ok could she go in. Things are a whole lot better now but now she is allowed to miss her tutor group and go into school later to avoid the morning rush of kids going in....only way I could keep totally calm and collected a lot of the time was ro have a Bluetooth headphone in one ear with the radio on. It's a long and winding road and I think it's all about acceptance really....she has always had her phobias and things but it was all masked until she left primary school...
  • berniehenry
    Posts: 224
    Berniehenry my son became much more challenging after he left primary school also Ithink as puberty kicks in it brings their problems onto a completely different level I also have to keep saying things to reassure my son He keeps saying to me are you sure today isn't the12 of May He says this all day every day It seems he had a very bad day on that date He has an incredible memory for dates and he is still haunted by it This is what he tells me by way of explanation these children are SO complex and my heart goes out to them all when you consider the anxiety they have to draw with24/7
  • mrscoco
    Posts: 190
    Another day another sit outside school gates until she feels ok enough and has said enough of her ocd phrases to feel good to go in......im sat here now!
  • mrscoco
    Posts: 190
    Thanks for your reply berniehenry....yes my daughter also too needs reassurance all day long ....I know it's important not to feed it with ocd but I think that's different if it's ocd without autism!! When she asks the reassurance questions unless she is in total meltdown I tend to just say "you know the answers " but have to mske sure my tone is light and has humour in it. She also needs constant hugs like you say all day long. So much if it is just habit now and she has even said herself she doesn't know she doing it half the time. Your right these kids are sooooooooo very complex and for outsiders they just don't know the half of it and neve could!
  • berniehenry
    Posts: 224
    Bernie Henry hi mrs coco you are. So RIGHT Mrs coco outsiders don't hve a clue and most of them judge us from their smug little worlds with their perfect children.One of the positives I've got from parenting my son is that I don't care what. People think anymore and as I've said on another post that is very empowering I'm sure you feel the sameIWillDefend my son when IGNORANT people judge him.Our children did not ask to be inflicted with this terrible neurological tsunami any more than a child asks to get cancer.The child who has cancer which is something I would not wish on any parent or child is treated with more understanding and compassion than the way our children with their very different but equally serios conditions are treatedWe have no family support whatsoever Pauls aunt even reported us to social services for bad parenting due to his extreme behaviour this aunt is a TEACHER in a primary school .Can you imagine your special needs child being taught by her!!The only people who really understand what we are going through are the people posting on this site Take care and sending best wishes to your beloved daughter
  • PDA_ASD_Parent
    Posts: 4,188
    berniehenry, you can understand the saying "you can choose your friends but you can't choose your family", sorry you have such a bad relative to do such a thing.
  • berniehenry
    Posts: 224
    Bernie Henry thanks planet autism but guess what I don't care about her or her clones anymore .Parenting an autism / PDA child is so hard I am looking for support in other areas This site has been a lifesaver for me. Nobody judges me and just tries to help me with really practical advice.I bet if we all got together for a night out we would have one hell of a hooley.It takes a village to raise a child That cliche makes me want to throw -up In my experience family don't want to know about your difficulties.Thats my experience anyway. Doesn't mean to say all other families are the same Would you have good family Support?
  • PDA_ASD_Parent
    Posts: 4,188

    berniehenry said:

    I bet if we all got together for a night out we would have one hell of a hooley.



    It'd be a craic alright!

    :D

    Like you I don't have family support. But I think even where people do have family support, there is little to no understanding because it takes walking in another man's shoes to know how they fit. And I think family members can be the most judgmental because they feel they have the right to offer "helpful" advice.
  • mrscoco
    Posts: 190
    Yes no one gets it even though they try to be sympathetic because they DON'T Live it! So very easy to watch from the sidelines and pass judgement! !
  • berniehenry
    Posts: 224
    Bernie Henry So well said Mrs coco!! I think that what we go through as parents makes us also accepting of difference and I think that is a wonderful trait to have in this judgemental world.My daughter is traing to be a nurse and she really loves her career choice and is really doing well at it Even though her brother drives her mad at times I think she would not gone for such a caring profession if she had not had him in her life.Sometimes there is a positive side to Autism /PDA
  • mrscoco
    Posts: 190
    Hi, yes I def agree berniehenry what we go through makes a lot of other stuff seem totally irrelevent. I do find it hard to relate to people though that are not going through the same sort of thing!! Well today wasnt too bad apart from the morning before school bit with my daughers, you see I was going on a corporate day out with work, but she still wanted ME to take her to school, as I do every day rather than my husband, all was going fine and I was dressed up ready but then.....my husband rubbed his hands on his t shirt as he was saying goodbye to her and all hell let loose, its times like this when its really hard for me to be sympathetic to her, as sometimes I feel like she "puts on" the meltdown as a way of controlling me....she just lay there on the sofa with her head in her hands and wouldnt get up, despite me telling her calmly that I really needed to get her to school because I needed to be somewhere she was just screaming at me why did I not come to her straight away instead of going to say goodbye to my husband and son, and then made me promise that I would only go to her next time if something like that happened, I managed to get her to school and off to my event, but only by treading VERY carefully and remaining calm calm calm!! Oh yes another thing, my daugher after a day at school or anytime really can get really lethargic and silly and when she is in that mood can also really start to wind up her brother and then turn really silly and hyper and I wondered if this is also a type of sensory thing/demand avoidance thing?! Oh the complexity of it all!!!!!!!!!!!!!!!
  • berniehenry
    Posts: 224
    Bernie Henry June 30 Oh Mrs coco my heart goes out to you I'm sure you went to you r event but you were emotionally and physically drained!! I know how you feel and don't you think it's hard to remain calm all the time ?We are after all only human and it's hard to be on high alert all the time and it is so so STRESSFULL. With my son things could be going fine and then you say a word that is banned like he doesn't want you to use the word Dublin he wants you to say D .If you forget this rule we get a situation like you had with your daughter today.Your daughter has her touching fabric rule and my son has a correct word use rule same thing CONTROL manifesting itself in different rules and all to do with their deep rooted anxiety issues.With my son it's like living with every dictator in the history of the world and yet he can't help it I also think that whatever way the neurons are wired in these childrens brain they are actually able to read our minds they can sense when we are stressed so there is no respite they can even infiltrate our brains!!!Well done to you for remaining so calm Sometimes I don't have the patience I should have with my son but you did great got your daughter to school and got to your eventI I think we as parents are dealing with one of the most complex conditions that there is and we should be proud of ourselves.Nobody has a clue about the EXTREME difficulties we have to go through but it really does take a toll on you your relationship with your partner and on the siblings .You survived today so you are very strong and powerful and may tomorrow be a better day All the very best to you and your family you are doing a GREAT JOB and are a very caring kind person I know this from reading your posts
  • mrscoco
    Posts: 190
    Hi Berniehenry, I hope you had a good day and not too much going on.. Its been quite calm here, but my daughter has an inset day tommorrow so I think she is happy its a long weekend for her! Yesterday morning yes its just so hard when they do those controlling meltdowns, and the hardest thing is staying CALM, believe me this past year ive been through every single emotion, and shouted etc its so so hard to remain calm when they are telling you what to do and it goes against everything in your body! I have practiced a bit of mind control with my eyes shut and thinking that I am on a tropical island, of course not always easy if they are screaming at you and demand you do something else etc but I do this when my daughter goes into her making me listen to her phrases and confession stuff that she does, I also use my bluetooth for school runs which helps so much just to hear my favorite radio station in my ear, its very comforting and calming. Its also good to know she is not the only child with rules about stuff but I really do feel for you too with what you are going through, you are doing an amazing job too :) You are so spot on about them being able to read our minds, oh my goodness this is my daughter too!! Often she will tell me that I am saying stuff in the wrong voice, like if she is in that meltdown controlling mode and is after reassurance and will expecting me say i love you after she has said it, if my tone is not right she will say that was not a proper one!! She can tell if I have any anger in my voice despite my best efforts to disguise it, oh and she will also tell me if I am lying or I am guilty!! haha I swear she can read my brain! Funny because when i collected her from school this afternoon, she saw I had an empty Costa coffee cup in the car (she likes drinks from there) and straight away demanded that we go to Starbucks, when I told her no she tried to put up a small fight but then I told her I would make her a similar one at home in my smoothie maker and she then insisted it had to be exactly the same, so I said I would try and she said, no it will be the same, as she had to have the last word!! The funny thing is once home she had forgotten all about it and didnt mention it again, so for me that just shows the extreme need to control and it does not matter what it is, its just about in the minute when her anxiety is so high. I am finding she is able to explain to me more and more how things make her feel and tonight when I accidentally rubbed my hand on the bed that she was already lying she momentarily changed into the control monster and then quickly changed back to herself and said im so sorry it just changes me when that happens...I guess that is a bit of progress...small steps. :)
  • berniehenry
    Posts: 224
    Berniehenry July22 2016 hello mrs coco Not too bad of a day with me either but still dealing with terrible stress My son has no friends whatsoever so how do you entertain a 16 yo ?Yesteday we went trampoline bouncing with his sister and her friend .Then we we into town on a bus and had some really nice food Today I brought him to Dublin again and had the same food and got him the latest Now CD and ice cream in a really good. Italian ice cream parlour after.Its like filling a bottomless pit no matter what you do for him he is never happy and he can suddenly turn into meltdown mode without any warning These children are so smart in there own way your daughter spotted your coffee cup and feit an immediate need to CONTROL you had done something pleasant without her The hardest part for me to handle is that there is NO APPRECIATION and as you say they have no memory of the chaos they have unleashed You must stay calm all the time if you don't their behaviour just goes onto another level but it's very hard to stay ÇALM in the face of such stresss I can totally relate to your experience when putting her to bed When I bought my son his CDs today he kissed me and said thanks you a very good mum I felt as if I'd won the Lotto. We just have to live one day at a time but I've found my social circle is gone because I'm so exhausted and nobody understand or CARES anyway I'm on my own dealing with this LIFE SENTANCE. Stay strong easier said than done I know Best wishes to you and all your family and a special BIG HUG to your beloved daughter Kind regards Bernie henry
  • KazK
    Posts: 255
    Mrscoco, it was so nice to read your comment -

    she momentarily changed into the control monster and then quickly changed back to herself and said im so sorry it just changes me when that happens...I guess that is a bit of progress...small steps.

    - beautiful smells steps which you have helped her find. Well done! don't loose heart.
  • mrscoco
    Posts: 190
    great to hear you had a better day bernie henry and had that nice moment when you actually felt appreciated. My daugher does have terrible guilt over her actions because she is CONSTANTLY apologising obsessivly. Kazk - yes m working on her and and trying to give her a good understanding of how and why she feels the way she does, I have to because she does not want to go back to a phycologist again so I am doing that job too....not always easy and last year she did not want to acknowledge it at all but now if i take the right tone in my voice at the right time she will respond by agreeing with me and listening...tonight after I touched the towel that I was putting on the towel rail for her the WRONG way she started shouting NOO why did you do that you did it on purpose....however I started brushing her arms (meant to help with spd and just started doing it the last few days) and gave her some lavendar oil to smell and she calmed right down and then when I was giving her a cuddle on my lap I said calmly and nicely " you know whenever I touch something in a way you dont like, I am NOT doing that on purpose and neither is daddy" and she said I know that now but sometimes it just feels like that at the time..... Is this progress...maybe, maybe not....only time will tell :)
  • berniehenry
    Posts: 224
    Bernie Henry Hi mrscoco and KazK It really does light up your life when they do or say something that shows how much they love us I think you have to wait for the correct window of opportunity to try and discuss their behaviour with them and these windows can be very rare.My son sometimes expresses guilt about his extreme behaviour and says things like I'm a terrible person amnt. I or I've ruined the day haven't I So on top of the terrible anxiety they live with they are also carrying round a lorry load of guilt as well. Such a lot of suffering these complex children have to live with along with being totally misunderstood by so many people
  • mrscoco
    Posts: 190
    omg berniehenry - that "ruined the day" phrase has been with my daugher since she was about 6 years old...wow!!! Well my husband is watching the football and I am here with my daughter having snacks and watching keeping up with the kardashians....she already had about 3 fabric meltdowns this evening ahhhhhhhhhhh it seems its moving onto more fabrics now, the carpet, towels, my tops, literally so much stuff......she felt terrible though but I think she is extra tired and hormonal too today... shes happy and relaxed at least for now :) and breathe..........
  • Holly59
    Posts: 2,586

    berniehenry said:

    Bernie Henry Hi mrscoco and KazK It really does light up your life when they do or say something that shows how much they love us I think you have to wait for the correct window of opportunity to try and discuss their behaviour with them and these windows can be very rare.My son sometimes expresses guilt about his extreme behaviour and says things like I'm a terrible person amnt. I or I've ruined the day haven't I So on top of the terrible anxiety they live with they are also carrying round a lorry load of guilt as well. Such a lot of suffering these complex children have to live with along with being totally misunderstood by so many people



  • Holly59
    Posts: 2,586
    I can emphasise with the comments , not just yours all of them. After I read the reason I jump and read that this young man did have feelings but could not express them and he did feel the hurt he caused him his mum it was for me the start of the understanding of Asbergers. After reading PDA My daughter is not naughty I then understood PDA from that point. Learning new things every day.
    There was an incident a few weeks back where I tripped up four times in the kitchen, my dyspraxia, was near to tears dropping things and spilt a cup of coffee, the youngest who was sitting in the kitchen at the time stood up led me by the hand, told me to sit down he would help as I was not having a very good day.
    It does not happen very often, sadly we see the other side, it's those wee glimmers that keeps me going.
    Luckily for the fabric point of view mine prefer soft materials. The eldest I bought this fantastic parka in Fatface sale which is really heavy, he really likes that coat, bought the youngest one one year and he loves his. Wonder if it's a weight thing, they are really heavy but fantastically warm. The eldest has no temperature control , uses a 4.5 tog quilt all year , complains his room is too warm and has the window open in all conditions.

    Believe this over under sensitivity is part of the issue the Asbergers issues .May be it becomes an obsession, then a routine, add on the controlling factor of PDA.

    Years ago when my baby daughter was in hospital I met one of the nicest Consultants I have ever met in my life. He said to me by the end of this journey you will know more than I , you are my mini consultants, I so respect what you do go home with none of the High Dependancy Unit equipment support. Amazing mums. His first question was " How's mum" when he met you. Outstanding doctor as well.

    Well I am up to Junior Doctor have a long way to go yet. Shame a lot of the so called Doctors we meetdon't take this approach instead of the arrogant We are right and take no damm notice and talk a whole load of tosh.

    Hope you all have a good day.

    Guess what , have DPD delivering another PDA book . Mine are all out on loan and need another for next week for College. If it helps get the word out about PDA that's great.



  • berniehenry
    Posts: 224
    Berniehenry July3 2016. I'm sure this lovely incident with you son brought tears to your eyes and melted your heart.Beneath all the erratic,controlling and sometimes violent behaviour there is LOVE there also all their complex problems make it more difficult for them to express it.I would think it is a sensory thing with the lovely parka coats you bought they like weighted items on their bodies.I think the temperature thing is very common also My son doesn't feel the cold he insists on wearing shorts in the middle of winter and his behaviour escalates when it gets warm We are lucky we live in Ireland!!I. In fact he would go around naked if he could!, When at home he goes around in a very tattered dressing gown but who cares if he is happy.One thing parenting these children give you is a lack of interest in what other people think and I find that very Empowering.Holly you should be SO PROUD of yourself Traing to be a doctor is not easy for anyone but doing this while parenting your beloved children is deserving of all our respect WELL DONE I am totally in awe of you Holly59
  • Holly59
    Posts: 2,586

    berniehenry said:

    Berniehenry July3 2016. I'm sure this lovely incident with you son brought tears to your eyes and melted your heart.Beneath all the erratic,controlling and sometimes violent behaviour there is LOVE there also all their complex problems make it more difficult for them to express it.I would think it is a sensory thing with the lovely parka coats you bought they like weighted items on their bodies.I think the temperature thing is very common also My son doesn't feel the cold he insists on wearing shorts in the middle of winter and his behaviour escalates when it gets warm We are lucky we live in Ireland!!I. In fact he would go around naked if he could!, When at home he goes around in a very tattered dressing gown but who cares if he is happy.One thing parenting these children give you is a lack of interest in what other people think and I find that very Empowering.Holly you should be SO PROUD of yourself Traing to be a doctor is not easy for anyone but doing this while parenting your beloved children is deserving of all our respect WELL DONE I am totally in awe of you Holly59



  • Holly59
    Posts: 2,586
    Oh dear I should have explained that better, silly me. I meant the Consultant respected us parents as equal in knowledge to his .

    I did my nurse training years ago , it has come in very useful over the years I can tell you. After what I have witnessed in hospitals over the past years , it goes from Outstanding, Western General and Sick Kids to some shocking incidents locally , eg nurses tutting and walking away from non epileptic seizures, my son being left in soaking wet pyjamas because of severe sweating after masses of seizures while nurses dissapeared to fill in paperwork, nurses who sat on their backsides and never came to switch off heart monitors during the night, I did it. Depended who was on duty as to whether I felt happy to leave him.. I would never go back to nursing now. It's not the projffesion I was proud of. Far too much paperwork and not enough time doing what I call proper patient care.
    If the NHS went back to talking to the patients I am convinced they would be able to diagnose the patients a lot earlier than they do.

  • Rachelace
    Posts: 61
    This is an older thread but I wanted to leave a comment that my daughter identifies with most of what you've been comparing, the whole lot except some of it was on a smaller scale and some more extreme. It's very interesting seeing such commonality. One of the last points about temperature control interests me. I've enquired several time to medical professionals about her not feeling the cold and the heat is a trigger. It's been dismissed. I was right in believing it's part of the SPD profile. I'm shocked at the degree of commonality too. Like yours mrscoco she has changed so much since breakdown and that it's a catch up game forum us in learning about her and the reasons. She's gone through some of the behaviours you all describe in a transient way for 12 months now, like an onward journey it's forever moving on and changing. Must be the link to anxiety levels and demands, plus recuperation after being pushed so far to have a breakdown. Over the last 2 weeks She's more stable now with everything on her terms. We've had an immediate and highly positive reaction to her being on medication (psychosomatic & her strong will to make to it work - the same strong will won't engage with any professional or accept help). We're praying her response to the antidepressants continues to be beneficial, it's early days (day 5 but if I told you our daughter has transformed - completely - I'm not joking - it's been amazing to see - this includes going out, felling happy, chatting (like in the old days)). She is signed off school on medical grounds of acute anxiety and depression. She's lived in her bedroom Oct to Feb. Mrscoco mentioned the need for self-acceptance. I think my daughter may fight till death in resisting that. She wants to be perfect. That word alone "perfect" has caused her and our family so much angst. Agree with mind reading, it's like she has a power! Fantastic detection of a person's true meaning in some ways, a good judge of character but ironically this is so her downfall - she is also totally off-kilter and misinterprets people's true meanings from their choice of words, facial expressions and tone of voice - I think that happens when anxiety levels are acute and it evidences how anxiety overrides intuition. This misinterpretation links in with low self esteem, feeling different and feeling inferior.

    Another feature she described recently. She gave an example: If she sees a t-shirt on a hanger in her wardrobe she thinks several things about that t-shirt - where she bought it, who she was with, which shop, what was next to it in the shop, if there was a person close by, the choice of colours, the price, the display, the shop lighting etc. She said her brain does this about everything and doesn't switch off. Her brain activity has caused her a lot of concern over the past 12 months and she got lost in it. She uses technology and music to drown it out. Tunisian the same as hearing voices (initially we thought it was). She also has visual thinking patterns that she finds particularly hard to deal with and they manifest into her fears e.g. her blood phobia affected everything at one point and as an example if I suggested "would you like to go trampolining?" her though process kicked in a visual way = linking past operation to hypothetical event ending in a gory outcome and she responded "I can't". I think this is also referred to as catastrophic "what ifs".
  • mrscoco
    Posts: 190
    Hi Rachelace - my daughter has the exact same type of thinking. Also sensory issues or spd very very common in autism - also if you are in a constant state of high anxiety then anything will be a 100 times worse- my daughter still cant bear me to touch the fabric on the sofa or rub my hand on my t shirt ( im well trained as is my husband!!) The thing is she stays upstairs now so she doesnt get triggered. daughter also wants to be perfect but we have discussed this in therapy and the word is 'good enough' !!
  • Rachelace
    Posts: 61
    I've had the perfect word for years and it isn't going away.... It's a big thing for her and seems to cover most things. She cried the other day saying "I wish I could be a perfect daughter for you and do the things I should but I can't and I can't drain why." We had to send away the home.tutor hi s first visit and she felt.bad... I.didn't feel bad at all, I expected it and all.she'd been.rd.is.he's.popping by to see if you'd like to meet him and if you do come.down.otherwise he'll go, there's no.problem."

    The guilt they suffer leads to show self.esteem. awful.

    After reading your posts about your daughter who has cod, I do wonder if my daughter does. We already have a very long list of diagnoses. It makes me.nervous! CAMHS did mention it as a possibility once but it wasn't amongst other things.... it seems to have calmed Downey (her thoughts and rituals like keeping fabrics apart). xx
  • mrscoco
    Posts: 190
    do you know what Rachelace, ive come to realise it really doesnt matter about the labels, its just how they present with their difficulties thats all, i think a lot of them are part and parcel of off the scale anxiety and breakdown, it the minds maladaptive way of giving them back some sort of control. my daughter same with the perfection issue.. when she was 7 we used to go out for the day as a family and she would suddenly have these panics that she had somehow 'ruined the day' constantly she would be scanning or faces to make sure she hadnt upset us - its stemmed from this but just got bigger!
  • Rachelace
    Posts: 61

    mrscoco said:

    do you know what Rachelace, ive come to realise it really doesnt matter about the labels, its just how they present with their difficulties thats all, i think a lot of them are part and parcel of off the scale anxiety and breakdown, it the minds maladaptive way of giving them back some sort of control. my daughter same with the perfection issue.. when she was 7 we used to go out for the day as a family and she would suddenly have these panics that she had somehow 'ruined the day' constantly she would be scanning or faces to make sure she hadnt upset us - its stemmed from this but just got bigger!



    Hi, that's is very good advice.

    "i think a lot of them are part and parcel of off the scale anxiety and breakdown, it the minds maladaptive way of giving them back some sort of control"

    I was coming at it from a treatment plan and right medication, but if the anxiety is got on top of then the other symptoms will improve too. She already feels different after 8 doses. Apparently it isn't supposed to work so fast. She has noticed emotional changes and things have quietness down internally. Unfortunately she can't sleep at night and as suspected her appetite is reduced. She has more headspace for thinking and that allows her to say she might like to do something -new and improved = progress. She literally was stuck in bed for months unable to say these words because actually leaving her bed was too complicated because of sensory issues.... She is fixated on baking a cake today so her dad can take it in to work and share, this is despite having been awake since 5pm last night. She needs to eat before doing it to give energy, she had a bit of cereal at 8pm last night, wouldn't have anything to eat in the night (I offered as usual), so she last ate a light meal at 11pm on Friday evening. It's not too bad, but I'm monitoring. Before medication she could go a few days without a meal. I don't like the idea of that with taking medication. She's got fixed ideas on food so having healthy snacks instead of meals isn't an option. I bought complan protein drinks last week and that saved her on 2 days.

    I'm unable to help her with the fabrics situation. It's more about friction - different types of materials rubbing against each other. E.g.. when she found sitting on the car seat difficult, we couldn't put something over it to make it easier for her to sit on because 2 fabrics would rub together. Like you say, it's a manifestation of her anxiety levels.

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