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About CarolJ

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    Ben Nevis
  1. Canopus I believe a mixture of both I can see the frustration of adults which I often see reflected in my children when they try to make sense of things. But I think thats not exclusive to those with ASDs. One of the positive things is seeing the suggestions and advice offered and the way in which those with AS respond to those situations. I want to know as much about AS as possible and that includes the negatives or the dark side. I personally found that adopting an attitude of ambvilance towards the needs of my childrens autism was not helpful and was harmful in my experience. Ignoring something doesnt make it go away or make it any easier for an individual to accept and to be expected to live with it can cause someone great emotional and psychological conflict - my views as an NT - for me, part of accepting all aspects of the spectrum means taking the good with the bad and seeing how individuals overcome and deal with things. One example of this for me is that "the powers that be" tried to tell me that my non-verbal son was not aware or able to experience or express emotions and I knew they were very very wrong, I could see his pain and confusion in his expressions, body language. Luckily my clever son himself proved that he did indeed have very complex emotions and needs - he was able to demonstrate this in person and thereby showed them that being non verbal didnt mean he was dumb. Had I remained ambivilant, ignored my instincts, and listened to what the "experts" were telling me I would have bought into the idea that my son didnt have awareness and I dread to think what the long term effects of that would have been to him. I dont know if you go on youtube but I found a video on a young boy with autism and the words to the song are just brilliant (its country and western not my usual thing) but it kinda said it all in relation to any disability not just autism, its speaking of our differences as people. Its called "dont laugh at me" . Jorden (youtube)
  2. Hi Jadensmum, yes I do remember you, I am glad you were able to identify and I think unless someone has a child like scott they wouldnt fully understand what I am talking about. It never truly goes away and you will find that different things will trigger it, normally seeing others of your sons age or someone saying how their child achieved something remarkable serves as a powerful reminder. I know people dont mean it but sometimes it feels like a slap in the face - its a continual process of acceptance. One that I do everyday. You will never stop grieving but it gets easier to live with. I know it hurts when people stare and it seems that everyone elses kid even when they are are on the spectrum is making more progress. The right schooling and support really can make a difference - Scott is much happier these days - sure hes still non verbal but hes a character alright as I am sure Jaden is too. Its their total innocence that always gets to me how vulnerable they are how trusting. I will pm you with my email address if you want to chat more.
  3. I was told by a professional that some of the parents of these kids had indeed stopped contact and I was told that in relationship with a decision I was making about my famly. It was used as an example to give an opinion on what I was proposing to do. I know as well as anyone the reasons why any parent can be pushed into making decisions to put a child into care. What part of "my" experiences equates to this is about anyone other than me?
  4. Okay This post was never about judging others or expressing opinions on others - it was about "my" "experiences" and the way what I did affected my kids and I have seen this first hand in others not on this forum. Obviously I failed to make it clear that this was about my personal experienes because everyone seems to taking it as an is an attack on other parents? Once more I would like to say I was attempting to tell people about what "I" went through and it did have an affect on my kids. Yes bid I did put down about parents posting about how they felt, perhaps the way it was worded didnt come across right it certainly wasnt an attack on other parents - I was attempting highlight examples of how we act as parents and that it has a direct impact on our kids - using it as an example someone saying I am having a tough time with blah blah blah and then saying finding it difficult to cope with my kids. I put down about my own experiences and myself and others say I dont agree I take issue with.... ? Correct me if i am wrong but how can someone not agree with you about your personal expriences? I was never asking for you to agree or disagree I was merely sharing my experiences and these were certainly not opinons about other parents. Its like saying to someone I dont agree with the thoughts and feelings you had because I didnt experience things the way you did? If someone would care to explain exactly where I say this is about others then please feel free to point it out?
  5. Lucas thank you I noticed that my behaviours did indeed impact on my kids and I was honest enough with myself to admit this and do something about it. I was just attempting to share my experiences with others. I have observed parents of both NT and ASD kids going about their business and oblivious that what they do directly affects how their kids feel about the world and themselves as people. There are some who dont like to take responsibility for the impact their actions have on those they are supposed to care about and love. I would never say i am perfect parent in fact I am far from it but I try to look at things from the point of my sprogs not just throw my hands up in the air and say its not my fault! As a parent my duty is to protect my children as much as possible from the stresses of every day life and yes there are certain things you cannot protect your kids from. I admit at times I resented my kids for the demands they placed upon me which were sometimes made worse by their having ASDs and unable to cope because of them being unable to make sense of what was going on. I think the one who suffered the most was my non-verbal son. At least if you have language you can express how you feel to a certain extent. I couldnt imagine how hard it must have been or is for him not even being able to share his thoughts or feelings with anyone else. How alone and scared he must feel sometimes. I repeatedly see parents posting about how unhappy they are and how DS or DD is making things worse. I hardly ever see anyone put down how their kids must feel? I am just saying look at it from a childs point of view NT or ASD = families can only exist as a unit and we accept that we need to consider each other. In my sons school (autistic school) there are alot of kids in the care system because their parents gave up! Its heartbreaking. There but for the grace of god could be my DS it came so close to happening its scarey. Lucas I am sorry that your mum seems to deny that her actions past and present have any bearing on you because that denial can be more hurtful than the actions she did or failed to do. Perhaps she thinks shes doing the right thing? I dont know I dont know her like you do. I found one of the biggest barriers to understnding my kids was the communication problems. But its possible to overcome this. Even with a non-verbal child. Its not about beating yourself with parental guilt its about being strong enough to be objective and realise that as a parent just about everything we do affects our kids = well in my experience it certainly appeared to I hope you will be able to communicate with your mum somehow. Sometimes even if you live in the same house you dont really know the person you live with and there can be a lot of resentmennt and anger - this applies to all relationships not just parents and kids. I just found out its better to be open about how you feel as the resentment simmering away can build and lead to an explosion caused by something stupid which is normally out of all proportion. now i deal with things as I go along.
  6. Maybe I should be clearer about what I am saying in future. I am attempting to share my experiences. I agree on days when you feel down or have a headache its more difficult to cope with "normal" behaviours. But in "my" experience how I behave reflects directly on how my kids behave? This isnt about blaming the parents. Its about how our behaviour can affect others. In my experience meltdowns more often than not have triggers. I am saying that sometimes when life gets me down it "can" trigger behaviours in my kids. I am not just speaking of myself I have seen this in other parents where they are so busy worrying about their problems they can forget that their kids have feelings and can be affected too - especially in family breakups/divorces/splits. This is why its important to let the kids know that its not because of them or their autism but because XYZ has happened. I am not the perfect parent ye gods! But I have learned from mistakes I made in the past. I now try to look at the bigger picture and my family as a unit. We all get good days and bad days we are human. I am certainly not trying to tell people how to parent their kids. We get enough of that from plenty of professional bods (blame the parent mentality) and yes I too have been accused of causing my sons behaviours and had to fight to show that in fact it wasnt my rubbish parenting that it was part of how he dealt with situations in fact things got so bad SS were threatening me with a care order for him and I had to turn the whole situation around or risk losing him. I nieavely put my trust and faith into a system that then used my vulnerability against me saying I wasnt strong enough to parent my son because of his autism. I know of parents who are blamed for their childrens behavours some who have had their kids taken away from them. It wasnt a step by step plan on how to be the perfect parent it was my experience of when things got really tough and we had a lot of uncertainty in our lives that my kids behaviours got worse because I was struggling to hold it together and deal with everything that came along. I was just trying to share my experiences of how its easy to get caught in a cycle of feeling negative and how it can impact on our kids. I was trying to share my experiences in order to help others? I know I can get a bit mouthy sometimes and I do have a dark sense of humour. Perhaps I am too blunt or negative sometimes but I speak from experience. I have looked at the way some seemed to cope so admirably well with what happens to their famlies and although I know people just want to give support, it did kinda reinforce the fact that I felt like a sub-standard parent thinking why cant I cope with things like others? I guess by originally posting this topic I was trying to say look its okay we all make mistakes as long as we learn from them. Perhaps I just need to soften things up a bit? or I should add a disclaimer to my signature errr that was a joke
  7. BD parents are the adults - therefore I know as a parent that my ability to cope and moods directly affect my kids. I am letting people know this. What I am trying to do is to ask people to think objectively about why their kids seem to act up when they are having a bad day. Step back from the situation and think about how the kids must feel? Look at the bigger picture? As adults we are are supposed to be grown up and take responsibility for our actions. Trust me I can knock spots off my kids when it comes to having a tantrum! My kids are not "little angels" I was being facetious. Yes All kids are effected by how their parents are able to cope. But since its a well known fact that ASD kids in particular need routine in order to thrive I can safely assume that a parent going off the rails about something thats outside the childs influence can be even more upsetting to a child on the spectrum? BD I am not blaming parents or giving them more guilt complexes, surely you can see the same sentiments repeated over and over again on this forum from parents - You can see the struggle that many have and I have spoken about this before. My post is actually designed to help parents give them encouragement not criticise them? It seems you have taken this as a criticism and yes as parents of ASD kids we do actally have more to deal with on a day to day basis as I said in my post originally ie fighting for approriate school placements. BD for my DS especially the "differences" are acute so yes they are big. If you are in fact intimating that I cant give my personal experiences and by saying that I have struggled as an NT to understand my kids autism because it has made a big difference in our lives. Because if my son was like any other kid he would have a few good friends and a lot more freedom than he currently has. He would be able to talk for starters. So are you are saying its okay for me to post as long as I dont try to make out that any of the extra things I have had to deal with are due to having kids with ASDs and actually making it sound as if I am blaming my kids for everything that goes wrong? Since i have returned to this board you seem be taking issue with a lot of what I say? Is it that you think I lack enough understanding of ASD? Perhaps I should just shut up in the future? Take care BD (I do respect your views but I dont think you respect mine, even though they based on honesty) Hugs to Ben <'>
  8. well done Karen- peace will be restored methinks. What I would do in your case is to sit both boys down and let J hear first hand that you hold Ben just as responsible for last night as you do J - this will help J realise that mum is fair and just because Ben needs more help you still think about J and how he is feeling. I think you should apply for a job as a United Nations Peacekeeper! If J is NT just goes to show that he still gets pushed to the point where he struggles express himself and if he often thinks his brother gets more attention or gets away with stuff because of his SENs it can lead to resentment. You need to treat both fairly and equally allowing for their abilities of course. Good luck for tonight! <'> :notworthy:
  9. One of the things I see repeated on this message board is ?I am having a bad day? ? ?I cant take any more? ? ?what I am doing wrong? ? I would just like to give people my experince of how my moods and ability to cope have a direct impact on my childrens behaviours. When I am having a bad day PMT, worrying about something non-ASD related, I can guarantee my little Angels especially my DS will give me a hard time. I have noticed over the years that if I am feeling helpless unable to deal with things - life is too much - I just want to give up - his behavior worsens and it in turn makes me feel worse ? it?s a cycle which is hard to break it can sometimes escalate to the point where I start to blame his being autistic for all my problems and almost hating him and then hating myself for feeling like that towards my own child. Its easy to take my frustrations out on him and his sister because I resent their demands on me. Hey folks I am not a bad mother I love my kids but I am being honest here. It took me a long time to see that my moods triggered behaviors in my kids. I think about it from their point of view. Autistic kids need stability and routine to thrive. If I am upset about something I tend to change what I do in order to deal with whatever it is needs my attention. This means that things change and I start to feel stressed and angry and tired because other things I needed to do have been left. I feel as if there isn?t enough of me to go round. It all gets too much. I can start to show emotion cry and this has a very negative effect on my kids. They see you are struggling to cope and you are weak they in turn become frightened and insecure especially when I voice things like ?I cant take this no more?, children need a stable homelife in order to thrive. When you are showing your child you are struggling to cope or are upset you are scaring them. They become insecure and then try to do things (sometimes bad behaviour) to get your attention all kids hate being ignored. Its almost like they are saying to you ?Hey mum what about me?? ?you are scaring me?? I am not saying its not okay to show emotion in front of your kids but if I am upset or angry I explain to my kids that its nothing to do this them that mummy has her weepy time or that something else has upset me and that I still love them and its not their fault I am upset. My non verbal son I just give him hugs and try to take as much notice as possible to reassure him. When we are down in the dumps it?s difficult to think about anything except how we feel. But please if your kids react the same way as mine do, try to stop and think about how your behaviour as a parent can affect their behaviour. Noone is perfect ? kids don?t come with instructional manuals, and kids with ASDs are a law unto themselves. Nothing will have prepared you to deal with that, and all the extra things that parents like ourselves have to deal with can overwhelm us. The system has a lot of answer for in my view!! The amount of fighting and energy it takes to get even the basic services ie a suitable school place ? can leave parents drained and takes away the energy we need to deal with our kids. I often stop and think to myself ?How would I react if that (insert who or what is causing the problem) came into my home and upset my child?? I would be very angry. By allowing yourself to get upset about outside influences your child WILL BE UPSET! So effectively it has done just that. I get angry and think YOU WILL NOT UPSET MY CHILD! This helps me target my anger and energy where it should be and I certainly don?t turn it around and blame myself? Sorry if I sound like I am stating the obvious here but this is how things have happened for me? everyone is different. The key to making an child happy is "confidence" and know that they are loved. Even when DS has been doing his finger painting over the curtains! <'> Take care all
  10. Another idea is a "safe word" one that can be used when someone has gone too far. ie if you are wound up to a point that you feel you are going to lose control say that word usually something that is not used in every day conversation I say to my daughter "Zanzibar" and she knows enough and she uses it too. It immediately difuses the tension as its a word she can say without thinking and she knows its communicating time to stop! Its just an idea if you havent got anything that can be punched
  11. Hi Karen it sounds as if J hit his brother out of frustration my DS does this all the time. Sometimes when they struggle to express themselves verbally they hit out. Its not done out of malice its done because my son just cant help himself he lashes out. Problem is it hurts I am working on a no hitting plan with my son hes non-verbal and reacting to him "you gave him a telling off" actually reinforces hitting as an acceptabe form of behaviour. But as your son is higher functioning I really do think it was done because he had no other way of expressing his frustration and he hit his brother because he was nagging him to finish the book. I have felt like slapping someone sometimes when you are not able to get your point across or they wont listen. It sounds as if Ben was winding his brother up. My daughter does this with my son and I have to tell her to back off and leave DS alone. If you stop and think about how the situation arose. If that was me i would have stepped in earlier to stop Ben nagging his brother. I would calmly explain to Ben that J would finish the book in his own time. My daughter doesnt like to be pushed or harrassed it makes her "stressed". I think next time try to intervene earlier and explain to Ben to leave J alone or to say to J, "Ben cant wait for you to finish that book so I can read it - hes really looking forward to it " - its difficlt when they are both on spectrum but hitting is not an acceptble form. I have punching cushions that i punch sometimes and my daughter does the same. Some people use punchbag - say to J when he feels like this again to go punch the punchbag that way he will communicate to his brother he has gone too far. Of course it may not work but dont try to blame J totally. It sounds to me a case of six of one half a dozen of the other. Dont feel bad your a parent and sometimes you feel as if you have to choose between your kids. Its hard but if I was you I would try to talk about what happened and say to J Many NT people do things like kick and slam doors (I am terrible for this slamming doors and stomping feet and I am able to express myself with language!) its time fora bit of anger management methinks? good luck and dont feel guilty your sons sound as if they really do love each other, but boys will be boys. Dont continue to be angry at J - speak to him and let him know that hitting is not acceptable under any circumstances. Also say to Ben if you hadnt have nagged your brother he wouldn thave hit you. Let the boys see that you are fair and you are dissapointed at both of them. If J thinks you are defending Ben it could cause resentment.
  12. Well done Cat you came across really well. :notworthy:
  13. Both my two have a wicked sense of humour. It is visual based, my DS does a great charlie chaplin Act, he wacks himself on the head and falls flat on his back laughing looking for my response too. He really does intterract. My daughter can do verbal humour but simple jokes. I have to sometimes explain to her the punchline of a joke. My fella has a strange sense of humour but he laughs at my sarcasm. Yesterday I was taking the p*ss out of everyone in the house (except my DS). My fella always says the same thing when the children have left in the mornign for school "DS or DD have left the building" every day without fail - I pointed this out to him yesterday and said cant you say something else? but he still said the same thing again today guess its a habit I just cringed! My DD has a phobia about babywipes - my boy still wears nappies so wipes are something we have in every room. If she sees a wipe out of the packet or poking out or in the bin or dropped on the floor she goes crackers. She screams and refuses to look at it closing her eyes saying "get rid of it, Idont want to see it!" and starts to flap her hands and stim. At first I thought she was just attention seeking but she really doesnt like the physical feel of a wipe, esepcially if its dry and now the sight of a wipe is enough to send her into a meltdown. She also has a lock on her bedroom door to stop DS from gettign in there she likes her space and he tends to wreck her room. Its a yale lock so it needs a key and if you open the door using the key from the outside she shouts at you to remove the key all you hear is "The KEY!!!" "TAKE OUT THE KEY" it drives me nuts Yesterday she was getting ready for school and I left the key in the lock and as I closed the door behind me all i coudl hear is "THE KEEEYY" - I started laughing and said she reminded me of the hunchback of notre darm "the Bells" "the Bells" or "the wipes" "the wipes". I said to her I am going to do a scarey movie with the killer wipes do a timed screen shot of a wipe moving towards her bratz dolls, and a psycho shower scene with the wipes creeping up to the victim withthe high pitched music in the background... I told her was going to make a movie and put it on youtube and when she was naughty I would make her sit and watch it!! I think i may have gonea bit too far with the wipes but she was laughing but upset too. Do you think I should do it and let her see she can laugh at it or do you think I am a cruel mother who doesnt respect the feelings of my DD? what does anyone else think? I think it would be hilarious
  14. My DS only reacts to pain when he sees blood. He panicks. I know when hes not well because of his body language and he rubs his head when he has a headache. But he gets grumpy when he has constipation I have developed a sort of unspoken communication with him I know instinctively what he wants. I remember when he was younger he trod on a wasp in the grass in the back garden he was playing in the pool. He screamed in shock and I knew immediately what had happened I cant explain it but my son and I communicate on a different level I feel rather than see or am told what he needs? He has had blisters on his feet before from new shoes, which SS pulled me up on saying I was neglectful thing is i never knew until I pulled his socks off how the shoes had rubbed and I felt terrible but he didnt appear to feel the pain. I am sure that he feels pain differently from me and I know that sometimes because he cant express that pain especially the pain in his gut that he becomes aggressive and hits out because he is suffering. My DD is a wimp, a runny nose and shes dying she suffers from man-flu. She likes fuss and attention when unwell, and everyone knows! My fella is definitely a whimp. I hate it when hes not well he cant do anything for himself and does the dying swan act. This video will give you a good idea of what its like? You may recognise this in your own partner? Youtube mancold
  15. Mumble sweetheart I come across people like this all the time in the "support" services. Look at it this way you "love" what you do and "want" to do well all you need is support which is what this person is there to do but perhaps to her this is a "job" a means of paying her bills, rather than a "vocation". Some put 100 per cent. into what they do others, do the least possible in order to get by and you can clearly see the difference in their atttiude. My son who is non verbal can pick out a "do be" a mile off he knows when someone is truly interested in him. He is a brilliant judge of character. Mumble dont allow this womans laziness to upset you. Go to her superiors and tell them how she is treating you and if you need to quote Disability Discrimination Act - that always seems to prompt a reaction. Ask if its possible to change your support worker? What she is doing to you is trying to make you feel like a burden. As a parent I have come across this attitude numerous times. Its the standard "you are asking for too much" quoting words like "Budgets" "figures" "financial targets" approach making you feel like a drain and a burden which is wrong. Basically making you feel as if you are asking for far too much and are greedy!! If it werent for people like you Mumble this woman wouldnt have a job so really she ought to be more appreciative of the fact that you are using her services. You need her support as a means to an end in order to qualify and go on to have a rewarding career you are asking for help in order to give something back. It really makes me angry when I come across "do bes" like this, if you were not so determined her attitude and others like her would probably influence you to give up and think "whats the point?". I admire you for having the guts to keep on despite this "do be". And I can picture Bid saying "thats my girl " and will do all she can to support you. We are all behind you on this one. People like this dont realise the effect they can have on a young person be they neurotypical or autistic. Attitudes like this can kill a young persons ambition. It happened to me too when I was younger. I wanted to work for NASA as a rocket sicentist but the careers adviser told me to take a secretarial course instead seriously though I didnt end up what I wanted to do do and lived to regret not sticking to my guns so I admire your spirit Mumble. You go Girlfriend p.s. dont you dare curl up in a ball and die or I shall ask bid to kick you!!! How many others have given up because of this "do be's" attitude? Dont allow people like her to make you feel less of a person because you have asked for the help you were assessed as needing. Grrrrr! You are worth 10 of this "do be" dont allow this woman to use your AS against you. I am going to stop now becaue what I want to really say would get me banned. So dont you dare go giving up or thinking like that. You will come across people like this throughout your life you are your own person dont ever stop fighting for what you want.....any volunteers for an "angry mob?" ability to set buildings alight and to shake fist a must - i will supply pitchforks and torches? puts in addy of "do be" into SatNav....
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