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Minxygal

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About Minxygal

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    Ben Nevis
  • Birthday 10/12/1968

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    http://www.parentssidebyside.com
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  1. I know I grieved when they were diagnosed, but I think in the back of my mind I had planted this dream of them breaking out of their chrysalisis and becoming completely different adults, perhaps almost leaving the autistic behaviours behind. I suppose it's dawned on me that this is never going to happen and I know I've really felt this lack of freedom or the ability to do the things I want when I want to do them. I think the grieving process does re occur and Im not sure I'm neccessarily grieving for them, more for myself and the things I am still unable to do, despite the age of my young people, because of their disabilities. I think another reason we are unable to have closure is the fact that every doctors or specialist appointment has us raking up those raw emotions as soon as they start asking us to once again tell the story of our children from conception to present day. How can you deal with something when you are constantly having to dig through it at the request of every doctor etc that you have to see.
  2. Thats wrong information that the CAB have given you. A friend of mine has just been successful in applying for and being awarded DLA for his Aspergers. I think the people you need to be talking to are welfare rights, they have a team of people trained for appeals and they should be able to support you. Good luck.
  3. I just wanted to thank everyone who shared experiences for this campaign. The campaign was named Smile Dont Tut our slogan said an understanding smile is so much better than a tut and was aimed at getting people to realise how much harder it was to get through some of the experiences we have while out shopping when people are making judgements about our children and our parenting. I used many of the experiences you shared on a display board and I promise you some people were shocked by some of them mean things that were said. We also had information about the difference between a tantrum and a meltdown as well as info about why supermarkets are sensory nightmares for some children. We went to the local carnival to kick things off and we all wore Tshirts that said Smile don't Tut and we got members of the public filling out questionaires which at the end asked them to pledge to smile rather than tut if they saw a child kicking off in a supermarket in the future. 83 people at the carnival filled out a questionaire. I can tell you that 3% of the people we spoke to didnt know that children on the autistic spectrum look the same as other children. 83% of them had heard of the organisation we run, which was great as obviously all the awareness we are doing in our community is having an effect. But best of all a massive 95% pledged to think differently and said that in the future they would try to smile and not tut if they saw a child. Its a small start, but it is a start and we are now talking to some of the big supermarket chains in our area about taking it into them. I just wanted to thank everyone who helped out by sharing their experiences. Much appreciated.
  4. It seems common for children with PDA to sleep on the floor too. Of course there is a need for control and sleep is something that cannot be controlled, however, where they sleep can. M has a habit of changing his room around a lot in an effort to control some aspect of sleep. When we talked to aprents this was one thing that was often the same.
  5. This used to happen to my youngerst all of the time. Difference is that I now know that this is discrimination and they aren't allowed to do it. I've come across many schools who have , in their opionions, found ways around the discrimination claims by doing things like saying there were only certain places and so names had to be pulled from a hat, lo and behold my sons name never got pulled out. Another way was to look out for a petty reason where my sons behaviour warranted his exclusion. It is exactly that though, exclusion and its not legal. What makes me so cross is that our children are forced to conform to so many things they find difficult, in the name of inclusion, and yet when schools have the opportunity to fully include our young people in ways that would really make them feel included, they make excuses and dont do it.
  6. I think thats exactly it, and can I just say how refreshing this whole thread has felt for me, it's a difficult subject, especially on a site with both NT and AS peeps and the debate for me has been a welcome one. Mandy
  7. Absolutely , and as I have already stated I'm not sure anyone else could put up with me. Yeah, you're right people are drawn to each other for different reasons and if I didn't have two boys on the spectrum who needed a lot of time and energy it wouldnt be as much of an issue as I would no doubt have more time and energy to cope. I don't though and I suppose that is a major factor. There is a lot of good in my husband and he has a lot of unique abilities that I love that I think are present because of his ASD, things like the way he can follow instructions to the letter and the way he is able to carry on when the world sees to be falling arounds about us. All relationships are hard work and the hardest thing for me has been understanding what he is unable to change and learning to accept that and satisfying my need to be listen to and understood with my friends. It's also helped for me to put the energies I used shouting at him into explaining to him and helping him understand.
  8. Hi Bid, I didn't mean that this thread had become I fight I was just trying to get across that in the past these sorts of threads do end up locked and angry. I for one welcome your opinion, its something I have craved from my husband over the years. As for my wooing comment, believe me I'm not saying these things without having spoken to many couples where one of them is on the spectrum and in fact what many of them say (Including my husband) is that wooing is often really easy as its an easy role play character to get into, its often the most practical side of the whole experience and part of the 'process' when it comes to finding a partner. I suppose I should also mention that while I have been trying to explain how difficult it is as the wife to stay in a relationship with an Aspie, many Aspies have told me that if their wives were to deny them 'carnal privilages' (Trying really hard not to out this in a way some of the youngsters might not get ..lol) they wouldn't stay in the relationship either cos there wouldn't be any point. It's not the dropping of standards, in fact many have described it as the dropping of an act, a means to an end, if you know what I mean. It for me, is understanding that many of the negative things about my husband are because of his autism that keeps us together. Believe me, if I thought my husband purposely laughed when I cried or ignored me when I am obviously hurting I would leave him tommorrow. My husband shows his love in other ways. He has me on a pedistal. I can do no wrong to him. If we have dinner and he is dishing up the biggest portion goes to me, not the kids which is my natural instinct or to him. If my house were on fire I have no doubt that he would save me first not the kids as it is me who meets his needs. While this is lovely it also increases the burden of responsibility on me and my anxieties about the boys who I naturally give priority to.
  9. I understand, my husband is an Aspie and although I love him with all my heart I do feel there are things that I am unable to get from him, emotional support being the most noticable. It's not enough to say why did you marry him. I work with a lot of families where dad is also on the spectrum. I have a lot of aspies as friends and lots of their wives too and one of the things that many of them have said is that their partners were very good at 'wooing' and were very attentive when they first met. Theres a lot of literature out there about how to woo and lots of info on the TV and I hear stories of dozens of roses, romantic meals, all those lovely thing s that would convince a woman that she were in heaven. My husband was the same. Yes there were lots of quirky little things about him that I thought were a bit unusual but amongst all the flowers and the attention I thought I could live with them. When we got married however he'd done what he needed to do to 'win' me and basically stopped trying because he didnt see the point. We've been married for 19 years this year and I have two, now adult, sons on the spectrum. As I said I love him dearly but when it finally dawned on us that he was on the spectrum I grieved in the same way I did for the boys, but it also reassured me that many of the selfish acts, many of the times when I felt he was ignoring me because he chose to, many of the times I had argued with him (my hubby shuts down at the raising of a voice) begging for change he wasn't purposely not listening he wasnt purposely ignoring, he just didnt understand or see the point or infact hadnt heard me because in the same way the boys shut down so had he. My husband is an amazing man, he's a breath of fresh air in a stuffy room. He can make people laugh and is not afraid to make conversation with anyone. However, when my boys are in meltdown, when I need help to manage a situation my husband is still the class clown, is still messing around and if the situation is loud enough and stressful enough he can go into meltdown too and I have to take control of the whole situation on my own. At these times I feel like a single parent, at these times I feel sometimes like I have another child and I feel very lonely. As I have said, I love my husband and he brings a lot to our marriage, I sometimes think only an Aspie would choose to be married to me lol, but it doesn't stop me feeling lonely and missing being able to talk things through, being able to open my heart to someone who really understands. I can't do that with my husband, and believe me it's not through lack of trying. For me the key has been to find a good support network and I use my friends for that. I have explained to my husband that there are things I need that he is unable to give me. I need someone to tell me they understand when I'm hurt or tired or feeling that the world has it in for me. Sometimes I need someone to be able to look at me and know Im close to tears or Ive had enough, my husband doesnt have the ability to do that. I need someone to give me a hug when I need it and not after I've asked for it, if that makes sense. I get that from my friends now and my husband accepts that, as I think do some of their husbands who are similar. Please don't say I shouldn't have married him if thats the case, we have a good life together and I love him loads, but he is also exasperating and hard to live with, especially when I am stressed and want to escape the confines of autism for a time or two. The definition of 'normal' is said to be the majority, in that case in my house its normal to be on the spectrum and for me it can be a really lonely place and yes, I hear you saying that I must be hard work at times too, too right but then Ive already said how special my hubby is haven't I, doesnt mean that somethings cant be wrong or missing in a relationship. Discussions like this are important. Unless these things are talked through marriages break down and that affects everyone It helps to realise that other families are similar and that other people feel the same.For many of us who have ASD partners we can;t talk to our partners about this osrt of thing, they go on the defensive, as many do on here, or they block it out or are unable to understand, sometimes the way to get that understnading, to realise that you are not alone is to talk to other wives, other people who live in similar relationships. Yes having an ASD is socially excluding and confusing and hard work, so is living with it in my opinion. Would I have a quieter life if I were a single parent..yes I think so. Would I manage the boys better.. Yes I think so too. Would I miss my husband, god yes and thats why we are still here. I do feel there is a tendancy on this site for it to become them and us and for every thread like this to become a fight. I can assure you that I have read every word I have written here to my husband and he is in agreement and doesnt mind me sharing this with you. This is a site for support, for everyone living with ASD as far as I was aware and this is a subject that many of us need support with.
  10. Thank you all so much, keep them coming. I'm hoping that we can educate a few members of the public over the next weekend and will be filling out questionaires with people when they have viewed the displays. I will of course share the results when we have them Thanks again Mandx
  11. Thanks hun, that's exactly the sort of thing Im looking for.
  12. Im running a campaign at our local carnival called Stop Think and its aimed the community and explaining why supermarkets are scary tough places for our kids and how difficult it is when people make comments about behaviours. I have a whole side of a board I want to fill with some of the horrid things that people have said to us and our kids in the past. Does anyone have any experiences they'd be happy to share? Also any insight the kids might have shared about them would be good. Mandx
  13. I forgot to mention that the shakes my son had were actually prescribed by the dietician so making an appointment would be good as they can prescribe ones with the right vitamins and minerals for your child
  14. When my youngest was little he had weight issues too due to having chronic asthma. The shakes he had came in little cartons just like kiddie drinks and they made a difference to his weight. He saw them as a treat so didnt have a problem with them. They came in 3 flavours chocolate banana and strawberry. He only needed them for a year and they gave him the extra energy he needed to fight through the asthma attacks.
  15. Minxygal

    PDA Conference

    Hi Hev hun, No they aren't the same PDA stands for pathpologocal demand avoidance. My son has PDA. He is a very anxious young man and builds a worst case scenario out of many of the situations that most would see as normal and these anxieties are what convince him he cannot, or should not participate in activities. PDA is a very complex condition and one which there is little awareness about. As for PSBS I'll send you the link Hev Mandy
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