pookie170 Report post Posted August 7, 2008 I was wondering if any of you, whether parents of someone on the spectrum, or on the spectrum yourself, have experienced what's going on with my eldest at the moment. He's 10 at the moment, and we've been honest with him about the fact that he has AS and ADHD, and tried to explain things to him as best we can. But at the moment, he becomes absolutely adamant that he does not have either of them and there's nothing wrong with him. He gets very wound up about it.... I've tried to explain that there's nothing 'wrong' with him as such, that he's just a little different and that everyone else is too... (god knows I am, most of my year at high school thought I was bonkers!) but he's having none of it. And if I do feel that we've made a little progress with this, as acceptance makes a hesitant appearance, then the next time he gets cross, it's right back to square one..... Is there anything you tried/ experienced, depending on your POV, that was useful in coming to terms with this? I fear in our case, he may have a genetic leaning towards denial, as when my Dad became ill, I went through a turbulent and prolonged period of it myself.....but I can't think how to help my lad with this. I know he hates having to take meds for the ADHD (equasym).... I usually mange, when he rages about this, to get him to think back to his behaviour before meds, and how much unhappier he was with that particular state of affairs, how it helps him to gain control better, and this in turn allows him to access different things. Again, this is an almost daily conversation, but I think we can deal with that one..... I just hate to think of him disliking what is a part of himself.... Any ideas? Esther Quote Share this post Link to post Share on other sites
Flora Report post Posted August 7, 2008 Hi Esther <'> A couple of things spring to mind; the first one is that 'denial' is part of the greiving process. It would be natural that despite his dx and young age, your lad is going through a stage of greiving in relation to his dx. My son never went through this, he leapt straight to acceptance when I told him (this was when he was about the same age as your son). Another thing is from my own perspective... I spent most of my life desperately trying to be normal and fit in; when I was a lot younger if anyone had told me I had AS I would have been none too pleased and denied it outright. Does your son work hard to fit in? If he does then maybe there's your answer; he's aware he's different, doesn't want to be, and is angry and in denial that there is a name and reason for his difference and it isn't going to go away. It could be a combination of the two. Flo' <'> Quote Share this post Link to post Share on other sites
KateBall Report post Posted August 7, 2008 Yes we are experiencing just the same with our 10 year old ds. We have just got a dx but before then he heard talk about autism/aspergers and interestingly just keeps shouting he wants to be normal (ie not he is normal) so he knows he is something. It all started when he saw a programme on the tv about a downs syndrome child and asked if he was downs syndrome. I said of course not but he then asked well why did I go to that school - his special play group where there was also a child with downs syndrome and he therefore thought he must have it if he went there too. So that is when we tried to explain about autism but he simply won't accept it just as yours won't. Anyway the solution may be coming now we have the formal dx of ASD in that the specialist speech therapist is going to talk to him to explain it - she says she often does this and has some success where parents don't. Have you got a professional like that involved who might be able to help? Someone independent. Also she is going to recommend books to me - and I know you can get them from the NAS - all about ASD for the child to read or to be read to. Good luck Quote Share this post Link to post Share on other sites
pookie170 Report post Posted August 8, 2008 All of what you guys have said makes sense-and I hadn't actually thought of contacting the NAS, silly me!! Which I will do (cheers Kate!), as well as contacting our psychologist.....Though Cal tends to become terribly silly during his visits to CAMHS, so I don't know if he'll cooperate well enough to make use of her services, but will give it a go.... He does try hard to fit in, Flo, with varying degrees of success....it's heartbreaking to watch when it all too often goes wrong, but at least he has an ally in his godmother's son and a couple of other friends' kids. They seem to accept a lot of his behaviours, so we're fortunate in that. I truly hope that in time, he'll come to accept things as there's so much about him that's just fantastic. I'm particularly anxious about this as we're considering residential schooling after primary, and don't ever want him to think he's being sent away because he's different..... Will also have a word with his current school (only next week to go, then they're back!! Where did the holidays go??? ) and see if they can get the key workers involved in boosting his self esteem..... This is just so wretched, you want to protect your kids from all these manky feelings, but they barge in regardless.... Thanks for your advice, chaps! Esther x Quote Share this post Link to post Share on other sites
KateBall Report post Posted August 8, 2008 I'm particularly anxious about this as we're considering residential schooling after primary, and don't ever want him to think he's being sent away because he's different..... Will also have a word with his current school (only next week to go, then they're back!! Where did the holidays go??? ) and see if they can get the key workers involved in boosting his self esteem..... Esther x Thats interesting as I have applied for residential schooling for my ds. He has another year to go at Primary. All teachers and professionals involved with him think its a good idea but will have to see if he is suitable for boarding (its not a special school just a state boarding school). I heard something interesting from a specialist SALT this week and that was that I should go for a statement for my ds and try and have the boarding school listed so that way I won't have to pay the boarding fees. What arrangements are you hoping to do? Are you talking about a special school? Also I keep banging on at my ds primary about his low self esteem and they keep saying that his self esteem is fine in school. I can't get them to realise he is hiding his feelings there and coming home and showing his real self. Hope you get on better than me there. We are having the SALT come in to school next term and explain a bit more about his ASD. Quote Share this post Link to post Share on other sites
pookie170 Report post Posted August 9, 2008 It's rather different in Scotland, I'm afraid- I'm assuming you're in England as we don't have statements here. The equivalent is EXTREMELY difficult to obtain, and very few kids get it..... Not sure why, but there's not a lot parents can do about it. Basically, if we think the resi school's the best option, we have to put our case forward to the LEA and go from there. Some of it I still don't quite get, so I'll keep you posted. Cal's school nearly recoiled when I mentioned the resi school as a possibility though. Simply because it is a residential school- 'You do realise he'll have to stay there??' was the reaction. Again, not ideal, but I still think he'd be happier there than the other option, which is a unit in a mainstream school. I just don't think he'll cope with it, even in small bursts.....ach, we'll see I suppose. I hope I can get school on board with the self-esteem issue too. They've been excellent so far, so hopefully the status quo will be maintained!! Hope it goes well for you and your son too....it's a blimmin' minefield!!! Esther x Quote Share this post Link to post Share on other sites
SarahSH Report post Posted August 10, 2008 It's tough isn't it - v painful to see them go through such pain about who they are. I'm sure you've probably done this but we coped with it by talking about AS as a way of thinking, definitely not an illness. I know some people including Ros Blackburn talk in terms of "incurable" etc, but that's just not how we've ever thought about or experienced AS in our house. It seems to me (and I'm not a medic but this is how I've talked to my son about it) to be about being very very sensitive to what's going on around you, and needing lots of gaps in contact and stimulation because of this. It also means you're going to get pretty anxious, with all that stuff - sights, sounds, smells, feelings - washing around you and in and out of you all the time, with no sure way of keeping it all out. It can make you want to try quite hard to control your world in case it gets overwhelming - which it often does. And that kind of level of awareness means it's hard to see the wood for the trees, because there's so much information coming in, so it's hard to pick up on social rules and begin to tell what people might say or do. That's got to be pretty confusing and add a whole other level of difficulty. To us this makes it seem pretty understandable to protect yourself by separating off sometimes, or getting in a panic/state in response to overload, or trying to control your environment as far as you can. I'm not saying my son is never sad about it, he is sometimes. But we do use the term aspergerish quite often as a compliment meaning likeable, sensitive and sort of one of us! Don't know if that's any use, take care <'> love Sarah Quote Share this post Link to post Share on other sites
