nellie Report post Posted October 13, 2004 Thanks folks I guess I will be forced to drink some of the nice wine I bought him!! Nellie. Share this post Link to post Share on other sites
Elefan Report post Posted October 13, 2004 To celebrate my Birthday next week, I'm going to BAN Kris!!!!!!!! Nels,....don't spill it this time!!!!!!! Elefan xx Share this post Link to post Share on other sites
Kris Report post Posted October 13, 2004 To celebrate my Birthday next week, I'm going to BAN Kris!!!!!!!! See, told you I was gonna be in trouble!!! Krisxx Share this post Link to post Share on other sites
keithsmum Report post Posted October 13, 2004 Hi, I'm Andrea, married to Cliff (who has Bipolar Disorder), mum to Sarah 13, Keith 10, and Erica 9. I'm fighting with the profs at the mo to try and get my son diagnosed with AS. Anyone give any sound advice? Thanks Andrea xxx Share this post Link to post Share on other sites
LKU Report post Posted October 13, 2004 Hi, I've been reading this forum for a few days and thought it was about time I Joined in! I'll tell you a bit about why I'm here.I have an 8yr old son who may be AS.We have an appointment in december with a consultant paedatrician at our local hospital.We have seen various specialists including psychologist,school doctor,speech therapist,community paedatrician.The comm paed thinks he is AS,but can't diagnose so has referred us to consultant.(Sorry if this is long winded).When he was 5 a comm paed diagnosed autistic tendencies,I actually have that in writing.But when we moved from down south to the midlands,this diagnoses actually didn't move with us!!!!We had to start the whole process again. I'm hoping we will get a diagnosis at this next appointment.Did anyone else get a dx from cosultant paed at the hospital? I don't really want the label but I do want the right help and support for my son so if a label is the only way so be it. I hope you are gonna let me rant and rave sometimes,as I feel the need often. Look forward to chatting with you all. LKU Share this post Link to post Share on other sites
nellie Report post Posted October 14, 2004 Hi LKU, welcome to the forum Sorry you have such a hard time getting a diagnoses, hopefully your appointment with the consultant paediatrician will give you some answers. Let us know how you get on. Just rant and rave whenever you feel the need, you will find the people on this site very understanding. Hopefully you will be able to have a laugh too. Take care, Nellie. x Share this post Link to post Share on other sites
keithsmum Report post Posted October 14, 2004 Hi everyone, I'm Andrea, married to Cliff, (who has Bipolar disorder), mum to Sarah 13, Keith 10 and Erica 9. I'm trying to read and learn as much as possible about AS, as I think my son may have AS. Any information or advice would be more than welcome. Andrea xxxx Share this post Link to post Share on other sites
Fel Report post Posted October 14, 2004 Hi LKU. My son was diagnosed at 8 by the consultant paediatrician. She also had to take into accounts reports from other therapists, like assessment of motor skills, language, etc., so the process wasn't quick. He was diagnosed eventually as being "on the milder end of the spectrum" and consequently attends mainstream school. Like you, I had my misgivings about the label attached to the diagnosis and wasn't sure what to do. Having the label has helped tremendously with the school situation and we are fortunate that he goes to a lovely school where the headmaster and teachers bend over backwards to give us the support we need. I know how lucky I am there by reading some of the other postings and the unbelievable difficulties other parents have with schools. He is able to use a laptop, is allowed not to do homework when he has a meltdown and a situation with bullying was stamped on so quickly by the headmaster that the children didn't know what hit them. The school has also given me a room to use every Tuesday morning in which I have sessions with my son on social skills, which is his biggest problem at the moment. As for leaving school, well that's where my worries are, particularly with talk of ID cards etc. Having Aspergers should not prevent my son from getting a job, but discrimination coming from ignorance of the disorder by prospective employers frightens me in terms of his long term prospects. Having the diagnosis has not helped in any other respect. There doesn't seem to be any provision in my area at least for helping them outside of the school situation. Anything I think he needs has to be initiated by me and researched by me. Hopefully your area will be different. I wish you lots of luck and hope things go well. Share this post Link to post Share on other sites
oracle Report post Posted October 14, 2004 Hi Andrea, I good way to begin to collect information about AS would be to read as many of the posts on differemt topics as possible. There is a wealth of information here and you can learn a great deal. welcome Carole Share this post Link to post Share on other sites
baileyj Report post Posted October 14, 2004 Hiya LKU I also live in the Midlands, but it seems different counties/cities all do diagnosis differently. We come under Worcestershire, my son Max is 4 and has a diagnosis of "treat and manage as if ASD" which we got after being referred to a Paiediatrician at our local Child Development Centre (CDC) in Redditch, and later Clinical Physchologist at the Communication and Social Behaviours Assessment Team (CASBAT), it was the paied that referred us there. Max had multi-team assessment over 3 months at CDC which involved 2 nursery sessions a week, with him being observed and written about by the nursery nurses, paeidiatrician, speach therapist, occupational therapist. Following on from that he was assessment further at playgroup by County Specialist Support, and Educational Physchologist. They won't give formal diagnosis of ASD until he is 7 or 8 as they say he too young to know what levels he's at. The diagnosis has been helpful for Max's nursery/school support, without it we would have got nothing, in that Max has been referred to the pre-school panel and provision made for 1:1 support in nursery. We are now about to embark on statementing ready for reception. Also it has helped for DLA, we get High Rate Care. Theres loads of help on this site, and everyone has help to give or a story to tell. I see you say you are in the Midlands, I live just outside Birmingham where are you? Cheers Jo Share this post Link to post Share on other sites
LKU Report post Posted October 14, 2004 HI Jo, I am in staffordshire,so I should have said WEST midlands really. Do you know where your son is likely to be on the spectum? I think my son would be mild AS.His main problems are at school,very intelligent but is on school action plus because of his behavioural problems. The clinical psychologist said his problems could be due to an ASD or because he has had an eventful life! So as you can imagine this information was about as useful as a chocolate teapot! p.s can any one explain what it means to be on school action plus as no one has bothered to tell me.He's only been on it 3 years!! Share this post Link to post Share on other sites
LKU Report post Posted October 14, 2004 thankyou to everyone who answered my post. I just realised that there was more than just Jo who answered,DOH!!!!! xxxxxxxxxxxxxxxxxxxxx Share this post Link to post Share on other sites
Helen Report post Posted October 15, 2004 (edited) can any one explain what it means to be on school action plus as no one has bothered to tell me.He's only been on it 3 years!! Hello LKU, School Action Plus: when the class or subject teacher and the SENCO are provided with advice or support from outside specialists, so that alternative interventions and additonal or different strategies to those provided for the pupil through School Action can be put in place. Outside specialists can be: a SALTherapist, an OT, an EP, an LEA advisory teacher (this is dependent on the resourses available within each LEA), physiotherapists, peripatetic teachers, etc. The Senco in your son's school really ought to have informed you of what this means - it shows poor communication on the school's part; an obvious disregard for the parent's involvement. Does your son have an IEP - an individual education plan? This is when the Senco writes up a plan to meet a child's specific needs. The plan would contain short term targets which would be reviewable every six months. It would also contain possible resources (e.g. certain worksheets/therapy games/computer programmes/role-play/a social skills programme etc) and strategies to help your son to hopefully achieve his targets. Some examples of targets being: *learn 5 times tables *check and re-draft written work *try to maintain eye contact *to follow multiple instructions in a 1-2-1 situation *to use social stories to enable child X to deal with situations that are difficult for him/her *to use subtle cues appropriately in a conversation e.g. facial expressions *to use some complex sentences in writen work *to use and explain a number of metaphors/similes/idioms, etc... The link below will take you to the IEP topic. You mention that you son has behavioural problems - if he exhibits behavioural problems in school then he ought to have an IEP for this issue. Helen http://www.asd-forum.org.uk/forum/index.php?showtopic=915 Edited October 15, 2004 by Helen Share this post Link to post Share on other sites
LKU Report post Posted October 15, 2004 Wow!! Thanks Helen. Your post was so informative,amazing,I now feel empowered. It's parents evening next week.I can now ask to see joe's IEP,didn't realise this was my right,until now. I have never been asked for my input regarding his IEP.In fact I have no idea what is in it,or even if he still has one.All this kind of information has been very vague and not really discussed as such.Words like IEP have just been mentioned in passing very hit and miss. maybe the staff at my school should get themselves an IEP for their appalling communication skills!! Now I know what school action plus means,I can also look into this further. Thanks again Share this post Link to post Share on other sites
Kris Report post Posted October 18, 2004 Welcome to Jay, our 500th user (sorry, no prizes but maybe when we hit 5000 heh heh heh) Kris Share this post Link to post Share on other sites
hollymg Report post Posted October 19, 2004 Hello, I am so glad I found this forum! I hope you don't mind an American joining in. I have a 5 year old boy with Aspergers, Andrew is an amazing, interesting and fun little boy but I know there will be challenges ahead including some recent developments I need to get more information on. I can see I have lots of reading to catch up on here! I'm at the beginning of the journey and have lots to learn from those who have been on the road a little longer, I hope I can provide useful information once in a while as well. --Holly Share this post Link to post Share on other sites
nellie Report post Posted October 19, 2004 Welcome Holly Nice to have someone from America join us. I hope you find the forum informative and supportive. Nellie. Share this post Link to post Share on other sites
bevalee Report post Posted October 19, 2004 Hi, My name is Beverley and i have a son Ryan who is 15 (yesterday). He was diagnosed with AS, ADHD, Dyspraxia & Dyslexia in Dec 03. For a diagnosis he has seen the GP, everyone at the local Camhs for 3 years. Of course i was a bad mother, and sent on parent craft courses while nearly having a nervous break down because of Ryan's bad behaviour. The school excluded him 4 times, then told me he was like this because i'm a single parent! We wen t back to another GP because Camhs just wouldn't listen. Apparently GP's don't treat mental cases! When we got the diagnosis, i was upset but happy i knew what was wrong at last. I thought i was mad and it was all my fault! Where do these proffessionals get there training? I'm so glad i found this site. Bev Share this post Link to post Share on other sites
Helen Report post Posted October 20, 2004 A warm welcome to all new members , Helen Share this post Link to post Share on other sites
Kris Report post Posted October 20, 2004 Hello all and welcome to the forum Kris Share this post Link to post Share on other sites
nellie Report post Posted October 20, 2004 Welcome to the forum Bevelee Many parents on here will be able to identify with what you have said. There's lots of information on here have a look at the postings and resources. Hope it helps. Nellie x Share this post Link to post Share on other sites
extrafairy Report post Posted October 22, 2004 Hi my name is Samantha (Sam) and I have 2 lovely kids, Kayleigh aged 15 and Isaac aged 7. Yesterday, as a result of multi-disciplinary assesments, Isaac was diagnosed as having OCD, Tic Disorder, Attention difficulties, motor learning disabilities and possible autistic spectrum difficulties!! Phew!! It's no great suprise really as I have always known he was different, but when the professionals spell it out in real terms, it's still a bit overwhelming. I know he is the same boy he was two days ago but still, it was quite an upset to hear it said. We are lucky because his school are extremely supportive and are already making plans for him!! Anyway, this is us!! I hope to contribute as often as I can and gain some uselfull info as I really do feel quite lost right now. Sam Share this post Link to post Share on other sites
nellie Report post Posted October 22, 2004 Welcome to the forum Sam Getting a diagnosis can be vry upsetting even when you have an idea there is something wrong. I hope we can be of some help. You will find lots of support and information on here. Many parents will understand what you are feeling. Nellie <'> Share this post Link to post Share on other sites
big mamma Report post Posted October 23, 2004 Welcome Sam - hope you find this forum as useful as I do Share this post Link to post Share on other sites
bevalee Report post Posted October 24, 2004 Yes, welcome Sam! I,m new here too and already found it really useful. Plus i don't feel quite as lonely when you know other's are in a similar posistion as you. Share this post Link to post Share on other sites
extrafairy Report post Posted October 24, 2004 Thanks everyone for the welcome. It's just nice to know I'm not on my own here. Share this post Link to post Share on other sites
Joe's gran Report post Posted October 27, 2004 Hello there, Our only grandchild was born 3 and a half years ago. He has proved to be an amazing little boy who keeps all of us grandparents and parents on our toes. My daughter works 30 hours and we all help with Joe's care when he is not at nursery. I have been voted spokesperson for the family for this site. Joe gives everyone wonderful eye contact and when in adult company is delightful. However language seemed a huge obstacle for him and when he started playgroup his socialisation skills with the others seemed nil. By the time he started nursery they had arranged a supported place for him and they have been wonderful. Joe has just attended the local developmental centre for a global assessment and he has problems in the three areas of play, socialisation and communication. The service here in NE Lancashire has been quick and efficient which has made it all a little easier to bear. They have not come up with a sure diagnosis (not even autistic spectrum) as it seems they were unsure how much of his problems were down to his language problems (receptive as well as expressive) and also because he doesn't fit anything very well. The ed psych said the sure diagnosis would not be made for a couple of years until his language improves but it may be an idea to read up on Asperger's syndrome.Which is how I found you all!!! Anyway we have been told that he will get a statement of SEN by the time he starts school next September. The choices are whether he ought to go to mainstream with lots of 1/1 support or a language unit. I suppose as a family we have two questions. 1 Is it usual to have to wait until 5+ for a diagnosis for Asp.Syn? 2 Has any one else been asked to consider between mainstream and language unit? I have been reading all the contributions for a few days so feel like I know some of you already. Sorry to rabbit on for ages but feel better for it already!! Joe's gran ps Do hope Ive done this properly after all this! Share this post Link to post Share on other sites
Helen Report post Posted October 27, 2004 Hello Joe's Gran and welcome My son was referred to a SALT when he was 2 1/2 years old - he had expressive/receptive language difficulties, but the therapy only lasted for approximately 6 months, when he was able to string three words together to make a sentence. The SALT then removed him from her case file. My son showed obvious AS signs when he was four years old - I wasn't aware of what these signs meant at the time, I presumed that because he was a boy (he is my second child, I have an older daughter), that boys presented much differently to girls. I was naive. The biggest mistake I made was when I didn't pursue what my gut feeling was telling me. My son was later diagnosed as having a language disorder at 8 years old and he was diagnosed as being AS at 11 years old - my son is 12 at the moment. From an educational point of view it's been difficult in getting his needs addressed. I can only suggest that you monitor your grandson and perhaps make a daily diary of his actions/ language/socialising/play, so that you can refer to this at a later date if need be. This may sound dramatic, but it could help in getting your grandson an accurate diagnosis. Good luck, Helen Share this post Link to post Share on other sites
baddad Report post Posted October 27, 2004 Hi Joes Gran (and all other newbies! - terrible I tend to forget the "important topics" threads until I happen to be looking at the main page when a new post comes in; sorry!) and welcome... There seems to be a bit more of this professionals 'hedging their bets' going on since my son was diagnosed; but if your comfortable they're doing it for the reasons they say it does make good sense... more and more similarities are starting to emerge between ASD's and other related disorders (dyspraxia etc - it might be worth a look in the "jargon buster" thread for more info), so waiting a while can't hurt so long as Joes needs are being met now... On the question of mainstream/special ed - it really has to be an individual decision, based on the child at the time of assessment. You state you've been told Joe will recieve a SEN as a matter of course... This is fairly unusual now, especially since there seems to be some confusion regarding diagnosis. In your position, I'd be seeking clarification on this and asking them to get the ball rolling. In terms of getting a statement, next September is a blink of the eye... Without knowing the underlying reasons for Joe's speech delay, or how profound the delay is, it's difficult to offer any sort of guess regarding what sort of provision might be beneficial. The one thing I can offer is that specialised placements are at a premium; so I'd be tempted to start the statement with this in mind, and switch over if things change dramatically in the interim. The LEA will be only to happy to accommodate the latter switch, but extremely reluctant to do it the other way around... Hope that's at least a little bit helpful, and hope to be 'chatting' again in the near... Baddad Share this post Link to post Share on other sites
nellie Report post Posted October 27, 2004 Hi Joe's Gran and welcome to the forum, Some professionals seem to be reluctant to rush the diagnoses now, especially in young children. I think Helen's idea of keeping a diary is an excellent one. I would also advise finding out as much information as you can about ASD's. I think Baddad has a point, if they are talking about statementing Joe, I can't see any reason for the delaying the procedure. This is a link to information on SEN. It gives information on Early Years education 3-5years and other relevant information. http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=303&a=3229 Sorry, I'm unable to answer your question about language units as I have no experience of them. Hope you find the forum helpful. Good luck Nellie. Share this post Link to post Share on other sites
Kris Report post Posted October 27, 2004 Hi Joe's Gran, Welcome to the forum Kris Share this post Link to post Share on other sites
Joe's gran Report post Posted October 27, 2004 Thanks very much Nellie, Helen, Baddad for the advice and Kris for the welcome. Perhaps I should have explained ..the statementing process began the day after Joe's last visit to the development centre but will probably not come through until May or thereabouts but certainly before he starts school. At the moment he has a supported place at nursery ( I think through something called early years action) which means he has 1/1 with a nominated nursery nurse for 10 of the 12 and half hours he is there. So it sounds like we are really fortunate although Joe's language problems are pretty severe and perhaps the amount of support suggests that. Yes we feel ok about having a diagnosis postponed until he is a little older which is much better than having to rethink everything when he is 6 or so as it does appear that he will get the help despite the uncertainty of diagnosis. I will certainly start keeping a diary and of course read up more. We have actually just started a video record so that nursery can see the Joe that we know which is very different to the quiet passive Joe of nursery! Better go anyway. Thanks once more. Good to know others are out there with lots of ideas and support. Joe's gran. Share this post Link to post Share on other sites
alijoy60 Report post Posted October 28, 2004 Hi, all I just found this forum the other day and posted a very emotional post about my eldest son. Have had lots of supportive advice from people here. A potted history: I'm a working nurse, single Mum of 3 to Rob, 21, Mike 20 and Alex 16. Their Dad left when Alex was 5 and we haven't seen him since! This has had an effect on my kids that I don't even think they can verbalise. The oldest 2 say they're not bothered, have no interest in him but Alex can't remember him and remains angry etc. My oldest, Rob has undiagnosed Aspergers. If anyone reads my first post you'll see what happened when he decided to go it alone. We always knew he was "different" but just accepted it as he was"just Rob" and he was just himself. His differences became clearer when he went to 6th form college and then Uni - he made not a single friend or aqquaintance and it didn't bother him. He still had his own circle of friends and socialised with them. It was only really when he left home and struggled, that we started reading in depth about AS and realised this was Rob, if only to a mild degree. He has great difficulty in voicing his feelings, realising what a friend is, has rigid routines etc. Lots of things from the past came flooding back and me and my 2 younger sons sat there saying "remember when". These were all incidents that we'd accepted as just Rob being Rob and were passed into family history kind of thing but on reading, realised they were all classic signs. My main concern for Rob now is that he has broken all communication with all his family and friends and is vulnerable to exploitation. I'm leaving him to it, so he doesn't feel pressured but sort of keeping a discreet eye on him as we live in a small town and people see him around and report back that he's in one piece. He refuses to accept that he has any problems at all, despite giving him reading stuff etc. He does read articles and say " that sounds like me" but doesn't seem able to translate that into life, if you know what I mean. School, primary and secondary, did point out on many occassions that he was " different" ie. very quiet, wouldn't contribute to discussions, rigid in routines but I think cos he acheived exceptionally well and caused no trouble to them it was never pursued further, and didn't really need to be at the time. He was assesed at 7 by the ed psych who thought his differences were due to his high intelligence - I'd asked for this as some of his teachers were being cruel to him and one even said to me " he acts as though he's brain damaged". Yes, I did make my anger felt to the Headmaster! He told me I was overprotective, so I told him to put his latest issue of Cosmo down, with it's pop psychology, and come and see him at home. I'd had 4 babies in 5 years, all involved lengthy stays in hospital so I couldn't see where the poor child had the chance to be over protected! In fact, he's always been very independent and self reliant, in many ways, beyond his years. Between the ages of 7 - 12 he was the local guru for all the kids regarding computer games - they'd come and get him to show them how to do it! I recall vividly when he was 5 he would not do any work at school or speak to the teacher and I would take stuff in he'd done at home and she must have thought i'd done it! When I asked him why, he said he didn't see the point in doing his work or telling the answers to his teacher as he knew it inside. I tried to explain that she couldn't see inside his head and so he had to show her he understood, and he would then write things down but never contributed verbally in class, even at Uni. His case is mild anyway, and has only become more apparent as he's trying to make his way in the world - he has no concept of being street wise. Hopefully, he'll learn a little on the way, without suffering too much. Gosh, that was a long intro, wasn't it! But it's nice to meet you all and this board was recomended to me by another Mum on another board I visit about unrelated issues. Thanks all love Ali x Share this post Link to post Share on other sites
bevalee Report post Posted October 29, 2004 (edited) Hi Ali Welcome to the forum. I'm quite new as well but i've found so much support here, it's wonderful! At least you know there are others out there with similar stories to tell and your not alone any more. Edited October 29, 2004 by bevalee Share this post Link to post Share on other sites
poppy Report post Posted October 30, 2004 I thought I would join as I have visited several times and might one day be brave enough to say something useful! My son is 10 and has Aspergers,which is how I found the site in my never ending quest to find any advice or ideas that might help us to help him.Its good ,especially as you often feel so alone against the rest of the"normal" world.Bye. Share this post Link to post Share on other sites
nellie Report post Posted October 30, 2004 Welcome to the forum poppy, Glad you could join us. I would be great if you could post some more. There's lots of information and support on here. Take care Nellie xx Share this post Link to post Share on other sites
Kris Report post Posted October 30, 2004 Hi Poppy, Welcome to the forum Kris Share this post Link to post Share on other sites
alijoy60 Report post Posted November 2, 2004 Hi all That's the great thing about this board - you read things and think, wow, I'm not the only one! I've read lots of traits/behaviours that made me see how complex it all is. And I have to say, it's the friendliest, funniest board I've come across - I've looked at a few and they frightened me sometimes! Catfights and bitchiness....On here, I feel people really understand and try their very best to give a constructive opinion, and it's also helped me to air mine and my son's story and get viewpoints that are "looking from the outside in". I kind of exploded on here the first time, there was so much I had churning inside, and everyone helped me, no one said go away and behave yourself! Hats off to all you parents and kids. <'> love Ali xx Share this post Link to post Share on other sites
lynx Report post Posted November 2, 2004 Hi Sam, glad you found us!!!! Dont worry about being gutted and grieving etc now you have it written down in black and white!!! It aint you going mad or being odd - its a normal reaction!!! Dont know where you live but I co-ordinate a support group for the Wokingham area for parents of kids with As etc please feel free to email etc if you need any help that isnt on the forum - probably very unlikely but sometimes a voice is nice!!! BTW you dont have to be mad to be here but it helps - try working out the batman and robin thread!!! lol Share this post Link to post Share on other sites
lynyona Report post Posted November 3, 2004 Hi ali welcome to the forum . lynn Share this post Link to post Share on other sites
