jax Report post Posted April 2, 2006 Hi all, First time I've been to this site and first post so feeling a bit nervous. 7yr old son is currently being assessed for HFA. As most people have mentioned here, I've always known he was a bit different, a bit tricky and quirky. But the hardest thing at the moment is that I wish I'd known years ago that he couldn't help some of his behaviours then I wouldn't have been so damn hard on him at times. Even now that he is being assessed I find it really difficult to know what is his AS and what is just sheer naughtiness, I find myself saying the most horrible things like 'Just try to be normal' and 'Stop doing the touching' (he likes to touch things in a repeated manner). As he seems to be quite able and coping well I sometimes can't help but think that if he just tried a bit harder he would be alright. I know I sound like a right cow, and this rant is a result of my guilt at being a cr*p mum at times, but I just wondered if there was anyone else who has a beautiful son who sometimes copes brilliantly and at others times they don't get at all. Thanks Quote Share this post Link to post Share on other sites
annie Report post Posted April 2, 2006 Hi Jax, Welcome to the forum You're not a cr*p mum . I think most of us here have the same feelings as you. My son is 16 now. He wasn't diagnosed until he was 11, so we spent years not understanding him at all, though not because of a lack of trying . Now that you've found us, you'll see that the forum is a great place for support. We understand how you feel and that it is perfectly normal, even if it probably doesn't seem like it at the moment. Annie <'> Quote Share this post Link to post Share on other sites
Brook Report post Posted April 2, 2006 (edited) Hi Jax, Welcome to the forum. <'> There are alot of understanding people on here. Hope you'll stay with us and have some laughs, tears, support and advice. Brook Edited April 2, 2006 by Brook Quote Share this post Link to post Share on other sites
Guest hallyscomet Report post Posted April 2, 2006 Hi, Welcome to the forum. You are a caring person just trying to do the right things by your child. A lot of parents will agree that sometimes they cope so perfectly, then all comes crashing down, reminding them that their child does in fact have difficulties. The fact that your child has been diagnosed later is an indication that he is more high function autism than lower on the scale. Even though your child is HFA and not low functioning, doesn't mean that his difficulties will be any easier. It is very difficult for them, however, there is a lot of support and your child will be entitled to a lot of support in class that will help them cope. There are lots of books in the resources section but also by reading posts here, you will be finding answers and making comparisons and seeing how similar things are across the spectrum. You haven't done anything wrong, in the fact that your child hasn't been diagnosed until now, you must be feeling awful but don't......must mums find it can take years to get a proper diagnosis, thats just the way it is. A lot of parents go through a bit of a grieving process when they first find out, talking to a counsellor helps alot preferrably with someone that knows about Autism Spectrum Disorders. Be gentle with yourself. Hailey <'> Quote Share this post Link to post Share on other sites
asereht Report post Posted April 2, 2006 (edited) Hi jax , my son was diagnosed at 13 he is now 15 and believe me I made a lot of mistakes in the past I always knew something was wrong but stupidly listened to the higher powers that said he was fine,until he was 12 and I demanded an assessment.Before that I used to tell him things like grow up,act your age etc.I didn't know any better then and I still wish I could turn the clock back.You are not a cr*p mum.You shouldn't feel guilty ,but that fact that you do proves you are a good mum. Take care and welcome to the site ,hope you'll stay. Theresa Edited April 2, 2006 by asereht Quote Share this post Link to post Share on other sites
Kathryn Report post Posted April 3, 2006 Hi jax, Welcome to the forum, and as you can see you're not alone in what you feel. I can add my name to those who feel they've made mistakes - I had 15 years of making them with my daughter before she finally got a dx and sometimes I'd like to go back and start again now that I know the reasons for everything she did in the earlier years. I feel I was very critical and demanding in a desperate attempt to make her conform to what other children were doing. I could probably write a "How not to bring up an AS child" based on some of my past blunders.. I can identify with what you say about your son's changing behaviour - sometimes coping well, other times not. Even now that I understand my daughter better, I have unguarded moments where I get frustrated and wish she would make more of an effort. It's a tough parenting job - I like to think I get it right more often than I get it wrong. As I'm sure do you - try not to blame yourself for the past. When I'm tempted to do this, I find these wise words from Mike Stanton: Learning to live with High Functioning Autism very comforting: "You have to forgive yourself. You did the best you knew, and when you learned better, you did better. Nobody can expect more than that." K x Quote Share this post Link to post Share on other sites
Malika Report post Posted April 3, 2006 Hi Jax <'> <'> <'> Welcome to the forum, do not think too much about what happened in the past except to understand your son better you cannot change what happened, now the best way is to inform yourself and try to understand his condition, this will imply lot of reading and digesting informations, on an other hand you must take things gently and give yourself time if not it will become too much. Have a look at this link (sorry as I have posted it already) there is so much to read there. http://www.autism.org/contents.html#temple As for myself I realised that my son was ASD after seeing a poster from the NAS he was already 5 1/2 even if I knew something was different with him he was finaly DX at 7 and it took me 2 years to understand him a bit better the worst was when he was 3/4 because I thought he was doing things out of naughtiness. Now the most important is that you have the key to find out some answers, you will find lot of support here keep posting this forum is a great help to all of us. All the best. Malika. Quote Share this post Link to post Share on other sites
Flora Report post Posted April 3, 2006 Hi Jax, welcome to the forum. You're not alone in feeling like this. The predominant emotion I felt when my sons were diagnosed was guilt. Guilt for the times I'd come down hard on them (especially AS son) for behaviours they clearly could not help. Guilt for all the help I could have given them if only I'd had more understanding or awareness. I felt guilty for sending them to nursery (they both had a miserable time at nursery and got nothing out of it). I still feel guilty now (3 years after dx) but I will say to you what others of have said to me, 'You are a good mother (or you wouldn't have found this forum), you don't need to feel guilty, and I totally understand and sympathise with how you feel'. It doesn't stop you feeling guilty, but it gives you an awareness on some level that you really don't need to. I'm pleased for you that you have found this forum. You will get support through every stage of diagnosis process and with anything and everything (even things not ASD related). Lauren x Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted April 3, 2006 Welcome.I can't better the advice given.Guilt is a common reaction and I felt that,too.Just let yourself off the hook and realise that we all do the best that we can.xx Quote Share this post Link to post Share on other sites
Jill Report post Posted April 3, 2006 Jax <'> don't beat yourself up. It's a complex issue, you've done the best you could and will continue to do so. None of us can do any more than that. Quote Share this post Link to post Share on other sites
2pink2blue Report post Posted April 3, 2006 Firstly don't be nervous the people here are fantastic! My almost 7yr old (turns 7 on Friday!) is just starting the assessment process too. Like you we knew she was a bit different and, for us, harder to figure out than the other 3 kids. We have days where she seems to cope fine and some where everything seems a struggle. You are certainly not alone and I'm sure that I've said/done things that weren't in her best interests too. We all do the best we can and the fact that you care shows you're not a cr*p mum! Take care of yourself too. Quote Share this post Link to post Share on other sites
LKS Report post Posted April 3, 2006 Hi jax and welcome. I have worn the guilt hat many times too. As I had 2 older NT children before my AS son I thought he was just being difficult or that I had lost my touch as a mum, if that makes sense When I think how I used to shout and get upset with him in the past, well I don't even want to go there anymore. Like Lauren the guilt I still feel regarding his early school days and how I allowed the 'professionals' to treat him still bothers me. This forum is the best and the people never judge. You can guarantee that there is probably nothing others have not already been through. And there will be days when you still lose it, cos even though your child might have a dx you are only human <'> Quote Share this post Link to post Share on other sites
jax Report post Posted April 3, 2006 Thanks so much for all the replies, I only found this website last night and I think I will become a regular user now. It's such a relief to be able to talk to you and read about all the various experiences you have had. Mind seem quite minor compared to some heart breaking threads I've read. At the end of the day, my son will always be my son, whatever the specialists, cahms, teachers say and he will always be unique - like all of us really. At the moment I don't think he realises he is any differnt from his friends (he is lucky enough to have a good group of firends who just see him as a bit naughty in class and quite cool because of it). I think the next year will be crunch time as their social skills develop and his maybe won't (I mean, lots of 6 and 7yr old boys make weird nosies, speak in funny voices and meaow a lot anyway). When do you talk to a child about their differences? do you wait until they broach the subject? I'm not sure how to tackle this one and also none of his friends parents know that he may be aspie. Do you think a 'need to know basis' is ok? oh joy! Jax Quote Share this post Link to post Share on other sites
Jill Report post Posted April 3, 2006 (edited) When do you talk to a child about their differences? do you wait until they broach the subject? I'm not sure how to tackle this one and also none of his friends parents know that he may be aspie. Do you think a 'need to know basis' is ok? oh joy! Jax I think that what works best for you is ok. You know yourself the circle of friends that he has, plus the parents of those friends to a certain degree. We've always been really open about the dx. It helps (us) that other people at The Boy's nursery know about him & so don't judge if he does something that initially appears odd (or throws a wobbly in the morning & won't go thru the door because someone has said "hello" when they opened the door, rather than "morning" ). You know what's best for you and your family tho & that's the thing to do - sod everyone else! As for when to tell your lad, that I don't know. I guess play it by ear again. We've not reached that stage yet. I know some children react really well & feel relieved at having an explanation, others refuse to accept it. You know your lad best. Tell him when you think it's right. Not much help am I? Edited April 3, 2006 by Jill Quote Share this post Link to post Share on other sites
baddad Report post Posted April 3, 2006 Hi jax - two 'quickies'... First thing, don't upset yourself because you're not a 'perfect parent'... If there are any stone throwers around here I'll guarantee they're lying!! It's not only our kids who feel the social pressure to be 'normal', and from time to time we all find it hard coping with that... Secondly: when to tell... I firmly believe that children should be able to 'evolve' with the understanding of their diagnosis from as early as possible... I'll quote Luke Jackson here: Hands up those of you reading this who have been called a freak or a geek or a boffin or a nerd?... Do any of you actually feel freaky on the inside? Here i will raise my hand and sing out a resounding 'Ay'... Doctors, therapists and professionals in general, this is how we feel when we do know what the reason is. When we didn't know and didn't have a diagnosis (or weren't told about it) it was a million times worse than you can ever imagine... Don't think I'll quote LJ VERY often, but i think that one sentence is an absolute blinder! L&P BD Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted April 3, 2006 Hi Jax, Welcome to the forum <'> <'> Lots of great advice on here Quote Share this post Link to post Share on other sites
