SueB

Hi Bid you may be right...he's certainly improved with age and I've certainly never thought of Tom as having special needs. He is definitely more articulate now, he was very pedantic in his speech when younger. He is getting a bit better at stopping and saying nothing, rather than just blurting out loud the first thing that comes into his head. He is getting more independant now and is taking himself off to college. He certainly isn't hyperactive now...infact the opposite, he could stop in bed all day if I let him lol. I just wish he was better at forming relationships/friendships. The fact that I had a difficult birth and Tom was starved of oxygen was always thought to have contributed to something?? I think that's why his nursery and health visitor made issues out of his development, and to be honest there were issues. He was a bit late at walking and talking - he started crawling at about 18 months and walking by 2. But then he seemed to zoom ahead, caught up and then overtook lol. But to be honest...all that became less important to me as he became older, we just got used to it I think. In addition, we had fantastic help and support from his school, which took pressure off me. But hey...what will be will be. Cheers Sue xx

When my son was starting college, he worried himself sick about catching a bus. We had to have a few trial runs before the big day, and on the big day I took the morning off work and followed the bus in my car. He's brill now though (although he has got lost a few times ). Good luck. Sue xx

I watched it. Did anyone else notice near the beginning, the tale where the mum tried to kill herself and the twins by putting all their heads in the gas oven. When the police finally arrived, they gave her a good telling off and told her not to do it again Sue xx

Hi LicklePaulie I have already made my mind up and will not be seeking a diagnosis, however, to be honest, I made that decision years ago when Tom was a lot younger.I think I have been looking for proof that I have made the right decision but looking at Tom now, I know I have. We have worked hard with his social skills and have got him to a level where he can work part time, catch a bus and do well in college....and hopefully their will be much more to come for our Tom. I work with families whose children don't have Aspergers/Autism, and I see their children struggle to achieve what Tom has, for a variety of reasons. I also see the school do their utmost best and still have an uphill struggle to keep them engaged. Maybe it is because of this that sometimes I am a bit tougher with Tom and on occasions I have a '...just get on with it and consider yourself lucky' attitude with him. It's really good to hear how people who grew up in the days of pre-Aspergers and who have predominantly managed to achieve. Neil your post made perfect sense to me and brought me a lot of reassurance. I think Tom will be like you a be a coper (or at least I hope he will be) Sue xx

I think I have a way to go yet then. If I skip the housework, family taxi runs and take my laptop with me wherever I go...do you think I can catch you up?? Sue xx

Hi Cat if I could change just one thing then it would be child poverty!! Brill to see campaigns like this...although ideally they shouldn't be needed should they. Joseph Rowntree publishes some really good studies of child poverty...although they can be hard to read Here's to a successful campaign. Sue xx

Hi Bid Please don't take this the wrong way, but to be honest...this does make me feel better - although I am deeply saddened for you. Your experience alone makes me realise that I may have spent yonks chasing an 'answer' to why Tom is like he is, but then what?? It's a bit like the Matrix film philosophy - do you take the red pill or the blue pill? I took the blue pill and stayed ignorant. You and Darky took the red pill for 'enlightenment and the truth'. Darky My guilt now is the opposite of yours, it is because I have pushed hard to get the support and recognition, but for a long time I saw it as an excuse and demanded people listened and done things my way for fear of them missing out. I think sometimes it's a case of damned if you do and damned if you don't...you did...I didn't...and we still feel bl**dy guilty. Thank you all so much for chatting with me...you have done me more good, than all the professionals could ever do to get my head sorted. Sue xx

It's a bl**dy nightmare When Tom was little (he's 17 now), I don't think very many had heard of Aspergers so he certainly couldn't have been diagnosed with that. I shudder to think what he would have been diagnosed with...it would definitely have been a horrible behavioural label of some sort. How bad would that have been! This has always been at the back of my mind. Tom's school was very laid back and even though they had no awareness of Aspergers (this is in the mid 90s) they were fab at coming up with plans. I didn't always agree with them for example when they use to keep Tom in at playtime for not finishing his work. He used to sit and stare out of the window and twiddle his hair - they insisted Tom pay full attention. I once asked them why they thought it soooo important if the proof was there that Tom was still learning and getting good grades? They stressed that Tom had to develop his attention span....and to be honest they were right. I think I would have cracked a long time ago if it had not been for his head teacher and the rest of the staff. I remember Tom leaving Junior school and I was devastated!! The head reassured me that he had passed everything on to his new high school...and he did!! Darky - I don't know what I'm trying to say to be honest...I've always had a lot of 'what if's' since I had the light bulb moment when a colleague and I were discussing the little boy with Aspergers. I think I'm trying to get rid of some of the guilt that is lurking in the back of my mind....and trying to convince myself that when I made the decision not to see any more proffessionals about Tom, that I made the right decision. Sue xx

You've hit the nail on the head....for me. You see Tom was mainy healthy, had a good pair of lungs on him and once he started to catch up to his peers, my worries lessoned. We've accepted his quirks and have managed to work with them. BUT when health professionals (and I must add they were working in Tom's best interest) were making different suggestions, it made me really anxious to want answers....and then I could feel myself getting caught up in it all. My one big lifeline was Tom's school...they sort of stopped the merry go round and let me get off. They helped me put things into prospective, focus more on the positives and less on the negatives and between us we worked out a plan of action and stuck to it. And the rest is history. Alan has made a good point for me to consider though. Admittedly discrimination is an issue, but these factors are why I'm in favour: - having had appraisals where I hadn't been disclosing my AS in the past and was told to "improve" at communication skills ( I don't know how to quote more than once lol) Tom wants to complete his Engineering degree and then go into the RAF. He is looking at Sponsorships already. However, as this job involves a massive amount of communication and has big implications should he be in active service, would he be able to do this??? Sue xx

Hi all and thank you for your fab replies. What origionally put me off seeking a diagnosis for Tom was professionals constantly changing what they thought about him?? First he had Cerebal Palsy, then he didn't. I then remember the health visitor labelling Tom Hyperactive and encouraging me to see a GP, which I did. The GP then tried labelling me a bit of an attention seeker lol!!! His nursery then said they thought he had epilepsy as he had blank moments?? I had never noticed that at home!!!...however he did used to switch off from you if he didnt want to join in?? EEG tests showed he doesn't have epilepsy. And so on and so ###### forth....!!! In he end (and to take some stress off me) OH and i decided to just carry one as we always had and every time anyone mentioned the possibility of something being wrong with Tom...we told them to %*&%^* off!!! This was when Tom was about 8 and from then on our lives improved 1000% Now on to Aspergers...one day at work a colleague and I were discussing a little boy who had been diagnosed with Aspergers. We got loads of info on Aspergers and while reading it, the information was describing my Tom...every quirk, every nuance, it was DEFINITELY our Tom. I know in my heart Tom has Aspergers. I think Darky is right...only time will tell. I would hate to think I had made Tom lose out on anything. On the other hand, I think by not seeking a diagnosis I have saved myself a boat load of stress. When I read some of the posts I don't know how some mothers (and other family members) have survived the fight and lived to tell the tale. Sue xx

Hi Flora Tom is a loner , though he isn't bothered by it...I think I get more bothered than him. He has never had friends really, he has always been a bit odd to keep them. His favourite pastime would be listing how many objects would burst a ball...or other obsecure topics of conversation?? Friends have always seemed to drift into his life and then back out again once they realise Tom will only speak about certain subjects. He doesn't do small talk...he thinks it is irrelevant. He doesn't see the connection that having good interpersonal skills equals making and keeping friends. However, it is not all doom and gloom for him as he is working part time and coping with life in general. He is a happy lad who doesn't want much out of life, he is a fab lad who happy with his lot really. We are teaching him about how to respond to different situations and I can see an improvement in him, for example, when he found out someone had lied to him he was very puzzled by it and didn't know how best to respond. He really is a joy to have. Sue xx

Hi Tally I have spoken to Tom regarding differences between him and his peers, however, he won't have none of it and calls everyone who is not like him a 'Chav!'...he has a lovely way with words. I have mentioned Aspergers to him in a round a bout way, but Tom will not acknowledge any of it. As Tom has got older, I think I now view a possible diagnosis of Aspergers as a 'poisoned chalice'. I know legally he is not allowed to be discriminated with a disability, but I also know that realistically he will be. I think I have thought that if I can keep a label away from Tom then he has a better chance of succeeding in life, I think I have an unrealistic phobia of labels. I'm not sure if I am doing the right thing or wrong thing...I only know that at some point in his future he has to fit in somewhere. Sue xx

Hi I'm curious really to know if we have missed out on anything by Tom not having a diagnosis. Tom was born with the umbilical cord around his neck and starved of oxygen for a while and it was thought later that he had cerebal palsy. Anyway he didn't...he was just very late in crawling and then walking and talking. Once he got going though he was like a steam train. He caught up to his peers academically and then left them all standing. Throughout all of this, I knew something was wrong but never felt I had anything concrete to take to the doctors. He became very rigid in his routine, developed a stammer (resulted in unsuccessful speach therapy), became obsessionally fixated on sciencey stuff, became disruptive in class - he was bored. His brilliant school allowed him to join other classes above him to keep him focussed on his education. There are many, many other traits I go on about - but you get the picture. Anyway, forward on to Tom who is now 17 and has given us all grey hairs and ulcers lol. We now have him catching the bus on his own to college and he has a part time job. Would a diagnosis have made a difference for him and for us? Would his life be easier do you think? Has he missed out on any chances that I wasn't aware of? Sue xx

Hi hate to say this but my son is 17 and still has not stayed away from home He would only go one school trips if I was one of the parents who volunteered to supervise some of the children. He nearly went to Hornsea once, Mon - Fri, then just after I had paid for the trip in full, he backed out. He'll be going to Uni next year, God knows how it will be if the local ones don't take him in and he has to go to one... say ...in Manchester/Liverpool/Nottingham. I aint even gonna think that far yet!!! Sue xx

Hi I'm a bit of a hypocrite really I do not believe in God and have raised my children without a religion, they haven't been christened. I have been married twice, both times in a registry office, though I am quite happy to sit through a church wedding. When my children have been growing up and have asked about God, I have always told them that some people believe in one God, some people believe in many Gods, however I don't believe in God. On the other hand, we always have pressie's at Christmas, eggs at Easter and as a kid I always had new clothes at Whitsuntide. Mind you, we also celebrated the Pagan festivities of dancing round the Maypole Son is too much into quantum physics to believe in God, I'm sure he would come up with a scientific theory to back his arguement. Daughter would believe in God if she thought she would get something out of it (financially) lol. I would rather leave the belief of God to the more spiritual people. My mother thinks I am a heathen and will be damned!! Sue xx