CarolJ Report post Posted August 8, 2004 Hi Ka00 Well you have probably come to the best place - there is a mine of info on this site - it will also give you a good insight into what family life is like for AS sufferers and their parents/carers. A word of warning, the Batcave is a form of therapy - not to be taken seriously, although if you were to read the postings there you would probably be thinking, I am not suprised their offspring have ASDs! Welcome to the mad house! Share this post Link to post Share on other sites
nellie Report post Posted August 8, 2004 Welcome to the forum Kathleen, I would recommend reading Asperger Syndrome A guide for Parents and Professionals by Tony Attwood. Probably the best book about AS. and Meeting the Needs of children with Autistic Spectrum Disorders by Rita Jordan and Glenys Jones. The book is an ideal companion for students in teacher-training, newly qualified teachers or for anyone teaching children with autistic spectrum disorders for the first time in a mainstream setting. I would recommend any book by Rita Jordan. and A real Person, Life on the outside by Gunilla Gerland. Gunilla is an adult with Asperger syndrome. She gives a very good account of what it is like to have AS. Her account of early childhood is particularly good. A good website - This website!! Seriously though, take your time to have a scout around. You will find a lot of feedback from parents and people on the spectrum. The resources section is very good for information. Good luck Nellie. Share this post Link to post Share on other sites
Kris Report post Posted August 8, 2004 Hi Kathleen, Welcome to the forum Kris Share this post Link to post Share on other sites
Kris Report post Posted August 8, 2004 A real Person, Life on the outside by Gunilla Gerland. Gunilla is an adult with Asperger syndrome. She gives a very good account of what it is like to have AS. Her account of early childhood is particularly good. Ive read this one, its very good and well reccomended! Much of it was a real eye opener for me! Kris Share this post Link to post Share on other sites
big mamma Report post Posted August 8, 2004 Hello, I have been an avid reader of this website since being told my daughter displays a lot of the 'symptons' of high functioning autism / aspergers syndrome. It has been a mine of information during what was initially a very frightening time. Junior is only 2 but it's fair to say there have been a lot of behaviours since birth which have seemed very different. We are currently waiting on an assessment at a local child centre and have been promised speech therapy sessions - not because she can't talk but because she finds it so hard to communicate. Will keep you posted and again thanks for all the advice. Share this post Link to post Share on other sites
nellie Report post Posted August 8, 2004 Hi Big Mamma, welcome to the forum I am so glad you have found the forum helpful. Good luck with the assessment, I hope you don't have to wait too long, it would be great if you could keep us posted. Like the name! Nellie. Share this post Link to post Share on other sites
pookie170 Report post Posted August 9, 2004 A big welcome to Kathleen and Big Mamma, hope you guys find this place as much of a boon as I have. Kathleen, I admire your wish to learn more, wish everybody in 'the system' was like you! (Although, most of the professionals I've come into contact with have been great, I must say!!) Esther x Share this post Link to post Share on other sites
Kris Report post Posted August 9, 2004 Hi Big mamma, A Big welcome to the forum Kris Share this post Link to post Share on other sites
Fel Report post Posted August 9, 2004 Hello. I am Mother to a 10 year old boy with Aspergers who is, according to the Paed'n, at the milder end of the spectrum. He attends mainstream school but has a number of difficulties. My reason for coming on here today is that although I am well used to my son's AS and have come to terms with it for the most part, I have for some time now had a suspicion that my husband also has it, albeit to a lesser degree. I'm not sure I can cope with them both. Share this post Link to post Share on other sites
nellie Report post Posted August 9, 2004 Welcome to the forum Fel. I have a son, 26, diagnosed with ASD and my husband was diagnosed with AS late last year. As well as parents of children with ASD, we have members with AS and members married to someone with AS. I think you should find lots of advice and support on here. Here is a list of books and websites which I found very helpful when my husband was diagnosed. Good luck Look forwared to 'chatting' with you Nellie. Aspergers in Love Couple Relationships and Family Affairs by Maxine Aston. The Other Half of Asperger Syndrome by Maxine Aston. An Asperger Marriage by Gisela & Christopher Slater- Walker Maxine Aston?s site. http://www.maxineaston.co.uk/ Gisela & Christopher Slater-Walker?s site. http://www.asperger-marriage.info/ Families of Adults Afflicted with Asperger?s Syndrome. http://www.faaas.org/ Asperger Syndrome Partners & Individuals Resources, Encouragement & Support. http://www.aspires-relationships.com/index.html Share this post Link to post Share on other sites
Fel Report post Posted August 9, 2004 Thank you Nellie. I look forward to talking to you and others. Share this post Link to post Share on other sites
baddad Report post Posted August 10, 2004 Hi Fel, Big mamma, Kaoo, info Junkie and anyone else new to the forum. Welcome. Hope you're all finding the site useful, can't begin to tell you how informative it's been to me over the past month or so. Would warn, though, it can get a bit addictive!! Also gets you thinking in all sorts of new directions, which can be very rewarding, but also quite exhausting! Best David Share this post Link to post Share on other sites
nel Report post Posted August 12, 2004 Hi i'm new to this site and thought i'd introduce me and my family. I'm helen (user name is nel as helen is already used here and many famuily call me nel) Carol told me about this site and it looks really good - loads and loads of info. I'm married to andy and mum to william who's 4 and oliver who was 3 in april. Oliver had a diagnosis of autism in Nov 03 and i am still trying to get my head around it. My initial reaction of shock then grief culminated in endless reading and research. This has resulted in ol being on gf/cf diet which has def. helped his chronic diarrhoea and i think it's helped in other ways too. He communicates through pecs and has about 60 single words and lots of echolalia! He has many problems with sensory issues such as visual undersensitivity and he also rocks constantly. He is going to a unit for children with sen in sept 9 til 3 mon to fri which i am dreading as i will miss him in the day but also think we have to try it as his local playgroup didnt understand him at all. Still i suppose he will be back each day and will have each eve and weekends with him. After all that reading i've found myself absolutely shattered by the whole thing as i think i'm finally coming to terms with the diagnosis for real. However there are also loads of good days as oliver is friendly (to familiar adults!) and very loving to his immediate family. I'm also a primary teacher 2 days a week when my husband looks after kids as he's a shift worker. Anyway im rambling! Hope to hear from some of you soon helen Share this post Link to post Share on other sites
Kris Report post Posted August 12, 2004 Hi Helen, Welcome to the forum Kris Share this post Link to post Share on other sites
CarolJ Report post Posted August 12, 2004 (edited) Hi Nel, and welome. You will find plenty of advice and support on this site. It sometimes helps just to know you are not on your own. Having a child with ASD can make you feel so isolated and alone sometimes, I have found I have lost touch with many friends because of my son. I think they feel that we dont have so much in common anymore. My opnion is they cannot have been true friends anyway, it seems easier for others to ignore my kids problems. We are all entitled to wallow in self pity every now and then - its healthy (well thats mytheory and I am sticking to it!) Interesting to note you are a teacher. Please do not take all the SENCO digs to heart, its a form of therapy and offloading - I refer to the Batcave in which noone can follow the thread(s), not even the posters - a rather confused lot in there! Oliver had a diagnosis of autism in Nov 03 and i am still trying to get my head around it. My initial reaction of shock then grief culminated in endless reading and research. We all go thrugh this pain barrier - it gets easier, you grieve the child you thought you had and learn to love the child you have, the goal posts have just been moved! I still have days where I just get so angry at the way things have turned out (usually when I have had no sleep - which is everyday!) Anyway must dash - welcome again to the twilight zone! Edited August 12, 2004 by CarolJ Share this post Link to post Share on other sites
nellie Report post Posted August 13, 2004 Welcome to the forum Nel, great name!! You should find lots of support and advice on here. Nellie. Share this post Link to post Share on other sites
pookie170 Report post Posted August 13, 2004 Nice to meet you, Nel, hope to chat often!! Esther x Share this post Link to post Share on other sites
anya1973 Report post Posted August 13, 2004 Hi, Everyone I'm new here so hope I get this right! My name is Helen and I have got a 4 year old son who has been diagnosed with Mild Asperger's Syndrome (some days I think he is not so mild mind you!!). He has always been a bit 'odd' in my opinion but I just thought it was him being him! Anyway his problems were picked up fairly rapidly by his pre-school who referred him to the Pre-School Support Worker who in turn referred him to our Community Paediatrician. We had a home visit from her and she diagnosed him then and there. All happened very quickly - for which I am very grateful. I hear so many people having to fight to get their children assessed. Since being diagnosed, his playgroup (which he has now left) got funding for him which allowed a one-to-one worker to help him. He has come on in leaps and bounds and now is so much better with coping with life than he was. Joe starts mainstream school in September and to be honest although he is much improved I think he will not get the support he needs when he goes there - will be one of 29 children with 1 teacher and 1 assistant. He needs in my opinion somebody by his side to motivate him and keep him on track. Unfortunately he doesn't have a statement as we were told he is not a severe enough case to even bother applying for one. We'll see how it goes but I have some doubts. Needless to say I will be straight down to the school if things aren't going to plan! I have a 2 year old daughter too but she is showing no signs of having AS and in fact I find her behaviour fascinating because I never saw 'normal behaviour' when Joe was little. We are struggling at the moment as Joe thrives very much on routine so I can't wait for him to start school and get back to some sort of routine. Sorry - seem to have waffled rather a lot. So glad to have found somewhere where I can compare notes with other parents. I laughed so much when I read the posts about eating/diets etc! That is the one thing that does my head in - I can cope with the rest of his behaviour! Helen Share this post Link to post Share on other sites
nellie Report post Posted August 13, 2004 Welcome to the forum Helen You should find lots of useful advice and support on here. nellie. Share this post Link to post Share on other sites
baddad Report post Posted August 13, 2004 Hi Helen, and welcome... (God, that sounds awful - like some old Bela Lagosi Movie!) Not waffling at all - nice to know some background history... My posts can go on for ages (yawn!), so yours is a tagline by comparison! Glad things have gone so smoothly for you with dx etc, but can fully understand your concerns re reception/mainstream. From a personal POV, I always think it's worth persuing a statement; No matter how our kids present this CAN be the tip of the iceberg, and the more able they are the better they CAN be at presenting what they think we want rather than what they really feel. Hopefully this is NOT the case for Joe, but in your position I'd feel more comfortable with that demonstrated rather than assumed... I'll leave my soapbox aside for now, but will offer that there is a political agenda to the reduction in statements, both Nationally and locally, that isn't necessarily concerned with the best interests of those being assessed... Sorry, all went a bit "grim" there! If you read some of my other posts you'll find I'm not always such a miserable old get, though I do have my moments... Anyway, again, welcome - and as far as waffling goes, i think I've made my point!! 'n' Share this post Link to post Share on other sites
anya1973 Report post Posted August 13, 2004 Hi, Thanks for that welcome! Don't feel so bad about waffling on like that. I think I am going to wait and see what happens with Joe starting school but I will be onto them if he doesn't get the help and support he needs. Great forum by the way - I've read loads of things that I'm sure will help make life easier for all of us! One thing that I have noticed is that I have a knack as does my mother of getting Joe to co-operate with doing certain things. My husband on the other hand seems to constantly put Joe's back up by the way he asks him to do things. Sorry - think that should be on a different section! Helen Share this post Link to post Share on other sites
pookie170 Report post Posted August 14, 2004 Hi Helen, It's nice to 'meet' you.....I can very much identify with you on the subject of watching younger 'NT' children growing up. My aspie son was so different to my younger son at the age of 1.5....it's truly fascinating!! And I'm a trained Nursery Nurse....you'd think I should be totally up on child development.....which I am, pretty much, until it comes to my own children!! I think it may be a case of 'I can't see the wood for the trees!' Ah, well......I'm also with you on looking forward to the return of routine, when schools restart. I expect my AS son (6) will get back to sleeping relatively well...I'm in shock as I just realised he's dropping off at 10.30-11.30 am and is waking at about 5 am!!! Had we only went on holidays this year I could have saved on luggage restrictions, and just packed lots in the bags under Caghal's an my own eye bags!!! Feel free to drop into the 'Batcave' for a hob nob and a cuppa, if you havea slightly wacky streak, you'll have fun! (Some members profess to be too sane to joinin properly, but it's all nonsense really-isn't that so, Nellie??) Hope you find support and companionship here...I think most of us have!! Esther x Share this post Link to post Share on other sites
supersec Report post Posted August 17, 2004 Hi my name is Caroline and I am married to Graham and have a son called Julian. Julian will be 3 in September. He was diagnosed as having Autisim on the 7th June 2004 and to cap it all off I am 7 months pregant with number 2! Talk about emotional. Julian is a happy healthy 3 year old who suffers mild to moderate autism but we are waiting for a further assessment in October to see if things have improved/regressed etc. Have been finding things very difficult to cope with over the last few months especially with Graham not being quite able to cope with the diagnosis and pretending that if he ignores it it will go away. Julian goes to a mainstream nursery and is being given one to one assistance for part of his time there and we are looking at getting him further assistance through Portage (no luck yet tho!), he also attends at the local hospital nursery which is specifically for children with his condition once a week for 2 hours which he enjoys. Julian's main problem is lack of speech and understanding of english although he loves to sing and can sing the tune to most records after having heard it just once - a musical genius perhaps! Don't know where he gets that from - not me! Well i heard about your forum through babyworld and have decided to have a look and see how things go, am looking for people who live in the Bournemouth/Christchurch/Poole region who are in similar positions to get together with and have coffee etc. The nearest NAS support group to me is Salisbury and being quite heavily pregant and suffereing from PSD means getting around is a bit of a problem. Love to hear from any one else who can help cheer me up! I know miserable ole moo I am. Caroline Share this post Link to post Share on other sites
nellie Report post Posted August 17, 2004 Welcome to the forum Caroline You have been sent to the right place, you will find lots of information and support here, with a splattering of humour to boot!! I see from another posting that you have already found someone from your area, good luck with that. Look forward to further 'chats'. Nellie. Share this post Link to post Share on other sites
pookie170 Report post Posted August 17, 2004 (edited) Hi Caroline, nice to 'meet' you! Poor you, if PSD is what I'm thinking of, then you must be soldiering along.... Hope your'e feeling okay, though!! By the way, I'm not quite as mad as I sound in my Batcave posts....almost, but not quite!!!! Yo could 'join up'....Supersec's quite a good supergirl moniker!!! Take care, Esther x Edited August 17, 2004 by pookie170 Share this post Link to post Share on other sites
big mamma Report post Posted August 17, 2004 Hi Caroline, I also had PSD whilst pregnant with Junior and was on crutches for 5 months. It must be really difficult for you trying to keep up with a toddler as well - at least I only had myself to look after! I'm sure you'll be back on your feet quite quickly once baba has arrived - not that you'll have much of an option!! Take care and put your feet up whenever you can. Share this post Link to post Share on other sites
supersec Report post Posted August 18, 2004 Thanks for your posts Am seriously considering becoming Supersec with the super fast fingers to join you in the bat cave - I could be the one who types all the fab letters that gets us parents what we need for our kids! Cool idea - thought of that as i was typing. Can I join please? Please? Can't do any super whoosing due to the PSD but can type like a demon (a nice one of course)! Refused the crutches but have the nice support brace that Hubby finds very attractive - not! Feet up? What is that.....as you will now with a toddler life can be very demanding and with Julian even more so! Not allowed to lift which includes lifting him which is a pain in the..... well leave that to your imagination! Will catch you later. Supersec (to the rescue!) Share this post Link to post Share on other sites
CarolJ Report post Posted August 18, 2004 Hiya Helen, Caroline and Lightening fingers Supersec (who no doubt has worn out many a keyboard - do the letters on your keyboard wear off? mine do - must have sweaty digits!) Welcome to the forum, there is a mine of info on here and the best thing about it is that everyone knows exactly what you go (are going) through - we are all here to support each other. I attend a local SPIN group for parents of disabled kids but I always find it hard work to hold a conversation when my kids are in the room! I think the beauty of an online forum is that you can access it and rant and rave whenever you have a spare moment. I always find it difficult when you have scheduled time to meet or talk to someone. Even having a phone conversation is impossible some times as my son then starts to wreck the house as soon as I pick the phone up or goes quiet, always a worry! Supersec, your minute taking skills would be most welcome in the Batcave. The ravings and rantings need to be documented -if only to prove to the world that we are after all a "little strange". I have noticed however that the inhabitants of the Batcave have recently branched out and spread their inane ramblings on many other threads. How often I go to a thread with a serious title thinking ahh, interesting info here, only to find out ramblings of diseased minds which are discussing topics totally unrelated to the title! Of course I do not include myself in this thread hijacker catagory . Everything I say has relevance to the subject in hand Ahem, time to go I think! Share this post Link to post Share on other sites
supersec Report post Posted August 19, 2004 Hi Nel i am new here too, joined on the 17th! Had so much fun since joining. You must have a peek in the batcave ! Everyone here is really friendly and I am slowly reading through all the info. My son was diagnosed in June this year and am pregnant with no2 and still coming around to the idea that Julian has these problems. like you he is very friendly and affectionate to people he knows (provided they don;t have facial hair! ). Here to chat if you want! Caroline Share this post Link to post Share on other sites
supersec Report post Posted August 19, 2004 Dear Nel Ignore my atrocious writing I think i might have missed a word out [like you he is very friendly ] should have read like your son! Dur and I supposed to be Supersec - literary genius to all us parents! (ref batcave!) Caroline! Having bad day with SPD today (not the political party!!!) in quite a bit of pain so may be going home shortly! Apologies. Share this post Link to post Share on other sites
Gordie Report post Posted August 19, 2004 supersec: Just a technical note ... (Yes - I'm a typical Aspie - always correcting people, and looking for perfection! ) If you look again at your posts and find something is wrong with them, you can click on an "Edit" button which is in the top-right-hand corner of all your own posts, and you can make your changes without need for any apologies! Welcome to the crazy gang. James Share this post Link to post Share on other sites
supersec Report post Posted August 20, 2004 Thanks Gordie, duly noted! Will try harder - can't be supersec if I can't get it right! Not much use in the bat cave if that is the case Share this post Link to post Share on other sites
pingu Report post Posted August 27, 2004 Hi everyone, We are new here, Our youngest son (Kieran aged 5) has just been diagnosed with Aspergers Syndrome, and i came across this site whilst scouring around for answers, advice etc. Kieran has a very big obbsession with washing machines, fans, bouncy castles (the fans at the back) water, drains, toilets, pipes, eyes (always tries to touch his own and other peoples) wow the list goes on and on. He is a superb little guy and we love him to bits, But we wanted to talk to others who understand this condition (because we don't) and see how we can understand him better, there is so much to do right now including him seeing a peaditrician (because he has a 'delve' on the top of his head, where the soft spot was). we are still in a bit of shock really, but we always knew he thought differently to our other 2 children, but could not put our finger on it until his school teacher pointed it out, until then it was like (head and brick wall). Any advice on what to expect now would be so gratefully recieved. Take care Shaz Share this post Link to post Share on other sites
bid Report post Posted August 27, 2004 (edited) Welcome to the forum, Shaz! You have certainly found the right place for advice, support and even a cyber-shoulder to cry on if necessary! I think we all remember that feeling of shock after dx, even those of us who had a pretty sure idea of what was wrong. You need to give yourselves time to come to terms with things. If you have a look around the forum, you should find most areas are covered...if not, just ask and someone will have an answer or know where to go for one. And if you like to live dangerously, there's always the BatCave (look in General Discussion) Keep posting! Bidx Edited August 27, 2004 by bid Share this post Link to post Share on other sites
nellie Report post Posted August 27, 2004 Welcome Shaz Bid has said everything I wanted to say. So 'ditto'. Take care in the Batcave they are all mad, that's correct, isn't it Bid? Nellie. Share this post Link to post Share on other sites
bid Report post Posted August 27, 2004 I don't know what you mean, Nellie!! Bid Share this post Link to post Share on other sites
mrs q Report post Posted August 28, 2004 Hi there Found this site, while looking through other sites and different links. Always wanted a forum to look at but could never find one with much activity in UK....all seem to American! Looks like I found a prefect forum here!!! I am Mrs Q, I live in North Cambs with my partner Mr Q and our three qqq, two sons and a daughter. The eldest son OE who is 7 has been diagnosed with AS finally last Decmeber after a really long battle, no one wanted to commit to the diagnois. He attends a mainstream school, this is his second as the first was terrible they were so unsupportive and so negative. The school he attrends now treats all students with extra care and attention not just the IEP ones. Our daugther RT is five between the boys, she is a typical little girl all pink and girly! The youngest TM has a mild form of autism, which we think will be AS too, he will be support through nursery, as we are really pushing for a statement before he goes too school so the school has the support worker for him! I am really pleased that we have three wonderful children who make us happy and tired....lol All the best to you all PS Anyone is the Cambs/Norfolk/Lincs borders area Share this post Link to post Share on other sites
pookie170 Report post Posted August 28, 2004 Hi Mrs Q, your kids sound lovely, glad OE has found a school that suits him. This site is brilliant, we have resident all-knowledgable folks like Nellie, Helen, Baddad...the list goes on! And everyone gives great support to each other. Hope you find this site useful and fun, hope to chat soon, Esther x Share this post Link to post Share on other sites
Jericho Report post Posted August 28, 2004 Welcome to the forum, Shaz! I have a 4yr-old with high-functioning autism and a 19-month old who is on the waiting list for a diagnosis. Never a dull moment in our house. Kieran's teacher sounds great. I hear so many stories of parents fighting to persuade the school that their children need help. It's lovely to hear about supportive schools. Does Kieran get any extra help at school? Have you had any advice about IEP's and statements? In the meantime, feel free to join us in the Bat-Cave section of the forum. Even if you don't feel like posting there you can be guaranteed to find something (or someone!) in there to make you giggle. Jericho xx Share this post Link to post Share on other sites
pookie170 Report post Posted August 28, 2004 Hi Shaz, great to meet you, welcome to the site! I have one AS boy, Caghal, aged 6.5 (he NOT 7 YET, so he keeps telling me!) and one NT son, Elijah, aged 1.5..... Kieran's obsession may prove very useful...you may have a future master plumber on your hands! Think of the bills you might save!!!! Hope you find this place useful and make some cyber friends, they're a supportive, informative lot! Esther x P.S.-Don't believe all you hear about the Batcave...we're all sane, honest! Share this post Link to post Share on other sites
