nellie Report post Posted May 16, 2005 Hi and welcome to all new members. Hope you find the forum useful. Nellie xx Share this post Link to post Share on other sites
purple pixie Report post Posted May 16, 2005 Hi Guys. I am mum to two children (7 and 5yrs). When my youngest was about 18mnths old I really got the feeling that things weren't quite right. (he was 10 weeks premature and so I had always been vigilant) The tantrums were a real force to be reckoned with and went beyond any realms of reasonable behaviour. A trigger time was when I had to collect my eldest from school, along with any incident which involved breaking with agenda. After many trips to the health visitor etc I finally broke down in the GP's office begging for help, whilst my youngest built a fantastic tower out of bricks. I was offered antidepressants. I declined the offer and was eventually pacified with a referral to a paediatrician. After an hour the paediatrician told us that our child has aspergers syndrome. The next two hours were spent doing an in depth assessment. We knew nothing about aspergers at that time, but as things were explained a few things started to make sense. I managed to get onto the Early bird programme and had fantastic support from the Educational Psychologist up until my boy started school. It has spiralled fantastically downhill ever since. I have spent the last two tears battling and getting nowhere. My son has a sensory stimulus problem which results in inappropriate behaviour. The school wouldn't acknowledge any problems to start with - my boy is very high function, and so dazzled staff with academic ability, which meant that they would not recognise his social problems. I was helping in school and could see the behaviours which I had worked so hard to address before he started school, ignored. The Senco at the school would not listen to me at all and dismissed my concerns. I tried to get a referral to clinical psychology. When the school doctor contacted the school to get some background info - the senco told them that my son had no problems whatsoever. Thus ended his first year at school. When he went into his second year, the change of routine coupled with no preparation to act as a damage limiter resulted in my boy's behaviour escalating. The school still would not accept that there was a problem. In desparation I had to ask parents of his favorite children (ones he was most fond of touching) to write letters of complaint into the school. That was probably the hardest thing I've had to do. The school reluctantly wrote an IEP which wasn't worth the paper it was written on. I eventually had to involve the school govenors to get the school to listen - which is ridiculous considering my son has a diagnosis. I met a very helpful ASD outreach worker at the school on my request. She was the first person in nearly two years who not only listened to me, but agreed that my son's behaviour although subtle - is a significant problem. She recommended desensitisation therapy via occupational therapy. My GP duly made the referral. I had a letter last week from the 'patch team' who have never met or assessed my son. They informed me that the Occupational therapists don't want to get invoved, and that they recommend he should be seen by clinical psychology as drug trherapy should be a consideration. Those of you who have made it this far through my ranting - I thank you for persevering. I am coming to the end of my tether now. I am exhausted with meeting brick wall after brick wall. My husband leaves the dealing with drs etc to me, but has just started to realise that I am getting burnt out. If anyone has any ideas they would be most gratefully received. Have just got the name of a clinical psychologist in london who specialises in ASD from the NAS. Just trying to fathom whether we can afford to go private. In the meantime I love my kids dearly. It would be nice to have some time to focus on the good bits for a change. The constant battle gets to my eldest sometimes - especially as she puts up with the comments at school from the other children. Apart from all that things are peachy Share this post Link to post Share on other sites
nellie Report post Posted May 17, 2005 Welcome to the forum Purple Pixie, You will find lots of support and understanding here, I'm sure many parents will be able to relate to your story. My eldest wasn't diagnosed until he was 19, I know what it's like to hit your head on brick walls. I'm sure you are doing everything possible. Stay strong, Nellie xx Share this post Link to post Share on other sites
Hectorshouse Report post Posted May 17, 2005 Hi to everyone here, I'm mum to T (11) who has Asperger's/Dyslexia/Dyspraxia and is generally extremely quirky/frustrating/lovely etc .. etc .. I stumbled across this site quite by accident and it is fab to see such a large forum for ASD and with such great information on here as well. I am a hardened LEA battler, and still battling but hey ho, isn't life fun, more can be read about me and mine on my blog http://www.asdfriendly.org/blogs/hectorshouse/ I hope to get to know people here as well as other forums a frequent, as this seems another really fab place to visit. Looking forward to chatting with everyone here. HHxx Share this post Link to post Share on other sites
Helen Report post Posted May 17, 2005 (edited) Welcome aboard Hectorshouse, hope you find the forum useful Edited May 17, 2005 by Helen Share this post Link to post Share on other sites
Genna Report post Posted May 18, 2005 Hi, I was not sure whether to post here or on the "general discussions" bit, so have done both! I have just joined-my youngest son, aged 6 , was diagnosed AS at the end of March. I live in London with my husband and 5 sons, who are aged 24, 22, 16, 11 and 6. My 16 year old was diagnosed dyspraxic when he was 9, but in the light of the diagnosis of the youngest am now wondering if he is AS too. It is heartening to read stories similar to our own and to know we are not as alone as we sometimes feel! Share this post Link to post Share on other sites
jomica Report post Posted May 21, 2005 Hello! I've just joined and would like to introduce myself. I'm mum to three boys, the youngest of whom is eight and has autism. He is in mainstream primary school with 4/5ths support. I look forward to taking part in discussions. Jomica Share this post Link to post Share on other sites
big mamma Report post Posted May 21, 2005 welcome to the forum all 'newbies'. Look forward to hearing more from you <'> Share this post Link to post Share on other sites
Kathryn Report post Posted May 21, 2005 Hi, Jomica, Welcome to the forum, I look forward to chatting with you, K Share this post Link to post Share on other sites
TinaP Report post Posted May 25, 2005 Hi there....I am not a parent of a child with AS but have a very dear friend who is stepmum to a 9 1/2 yr old boy...i have posted on one of the forums also..but was given advice to introduce myself here to....they are having probs getting a diagnosis so i am researching everything i can about AS...i have read numerous papers on it and like someone else onhere printed to show the boys dad and my friend...it his the little boy to a tee....they couldnt believe it...social services will also be getting a complaint about the way the family have been treated and totally ignored in all that was sed about him.....they labelled it parental emotional harm and took him into foster care for several months.....they sed him standing at a wall for hrs and hrs on end was my friend abusing him...she was the one who asked for there help as we new from the outset that he had some kind of problem..did social services listen to a word we sed...no of course they didnt....the school he attends told SS that his behaviour in school was fine...allbeit that he was always being taken home and continuasly behaveing badly in school....so SS just sed it was bad parenting......they sed she was starving him when infact he refused to eat......we are at the end of our tether with SS but now we hav read about AS we are trying to get him seen by someone to get things moving...unfortunatly my friend is hurt by all that has happened she only views him at the moment as a very naughty rude boy..i am trying to help her understand that he isnt doing intentionally....and hopefully she will see the bigger picture when she realises that he isnt out to drive her totally mad........well ive waffled anough...just thought by coming on here i might get a better understanding of it all so i can help her and the rest of the family........Tina x Share this post Link to post Share on other sites
MichelleW Report post Posted May 28, 2005 Hi, I am a single parent of two children: A 5 year old diagnosed with Asperger's and a 6 month old who (hopefully) is not autistic. I am not sure about the difference between Asperger's and High Functioning Autism - my son has had speech, language and communication difficulties since he was a year old (I thought he was deaf at first) But his obsession with spinning washing machines, and hand flapping soon had me thinking he was autistic. The first specialist I saw dismissed what I said instantly, but referred him to a centre where they "teach you how to play with your child properly". They were very patronising and I stopped taking him. Luckily he was refered to a special pre-school where he made drastic improvement, but it was only a few months ago that I finally had him diagnosed by a second specialist. He is now in mainstream infant school, where he is coping, but I want to get him into a special school. So now I face the battle of getting a statement of special needs. I have been offered an Early Bird Plus course, which I am hoping will help, as I'm struggling to cope most days. Michelle Share this post Link to post Share on other sites
mossgrove Report post Posted May 28, 2005 Michelle Welcome to the forum! You will find plenty of support and advice her from people who understand what you are going through. Simon Share this post Link to post Share on other sites
Caroline Report post Posted May 29, 2005 Hi, We may be moving to London this summer from abroad. I'm looking at school options for my son, AS (but not technically because of speech delay) and very capable, especially in science. Ideally I would like for him to attend a mainstream independent school, possibly for weekly boarding. I'd appreciate if any suggestions could be PM'd to me. Thanks. Share this post Link to post Share on other sites
mossgrove Report post Posted June 3, 2005 (edited) I am just bouncing this thread to the top as we have has a lot of new members recently. It would be wonderful if you could post a few lines about yourselves! Simon Edited June 3, 2005 by mossgrove Share this post Link to post Share on other sites
lil_me Report post Posted June 3, 2005 (edited) Hello Everyone, my name is Marsha and I'm from the good old North East of England. ( She types as it is pouring down) Found this forum whilst searching the internet for info on ASD and Aspergers I'm a Mum of 2 boys , oldest is 6 called Mikey and youngest is 4 called Shaun. My oldest is currently going through a full ASD assessment with a specialist so awaiting confirmation but this is being done as the school, ed psychologist and consultant believe he is on the spectrum. He was also diagnosed with ADHD and Dypsraxia before that so if it is all 3, complicated Since his diagnosis I haven't stopped reading about ASD, ADHD and Dyspraxia and personally I now have doubts about the Dyspraxia, hopefully will find out eventually. Edited June 5, 2005 by lil_me Share this post Link to post Share on other sites
call me jaded Report post Posted June 5, 2005 Well hellooo Yet another parent of four children, here. Really don't want to say more than that just now. Seasoned campaigner with the LEA/NHS. Found you quite by accident and looking forward to getting to know you all better. Jaded Share this post Link to post Share on other sites
nellie Report post Posted June 5, 2005 Welcome to the forum Jaded, love the name!! I'm sure you will find lots of information and support here, it's a great place. Look forward to 'chatting' with you. Nellie xx Share this post Link to post Share on other sites
Faz Report post Posted June 6, 2005 Hi I'm mum to Chris who is 11 and has asd, moderate learning difficulties, and at times very challenging behaviour. I love him more than anything, he's a brilliant kid and very I recognised a few names on the forum and decided to give it a go. Faz Share this post Link to post Share on other sites
Faz Report post Posted June 6, 2005 Oh yes, I forgot to mention that I chose this avator because Chris is really in to marine life and can name every species of shark, whale and dolphin Faz Share this post Link to post Share on other sites
CarerQuie Report post Posted June 6, 2005 Hello all, I'm new to this group but not to the world of autism.I'm Kris and I'm married with 6 children andmy youngest child(Rhodri)has autism.Looking forward to getting to know you all.xx Share this post Link to post Share on other sites
Hectorshouse Report post Posted June 6, 2005 Hiya Faz and Carequie ... welcome aboard, you already know me good to see you here as well. HHxx Share this post Link to post Share on other sites
lil_me Report post Posted June 6, 2005 Faz I have a little boy on the same 'wave' length , world revolves round sealife Share this post Link to post Share on other sites
Elouise Report post Posted June 6, 2005 Hi, My sister is highfunctioning ASD and still debating if she should have it made an 'official label' or not. She is also gifted to the point genius and insanity can seesaw mostly she copes but sometimes needs a hand. After ten years living on her own she now has a live in boyfriend who can cope with her 'little' ways. I am married and have been for 16 years to a longsuffering hubby who puts up with me (Aspie to the hilt but like my sister i wonder if a formal diaognosis on top of the 'we can give you the diaognosis if you would like' offer from the team that work with our lads) and my ways coupled with our odd four children. Nathan profoundly autistic and dyspraxic Joanne (Adhd and some ASD but did not want the official label preferring to dress goth and call herself one of the geeks) Sam aspergers ADHD finemotor dyspraxia, anaphylaxis and an intellect that scares even members of our family Annie Absolutely no ASD I can see though some beg to differ and a level of dyslexia that takes some getting used to as much as her imaginative games. I did try the local autistic society but found the constant 'are you STILL married' questions worrying. I think they found my 'I know where my kids get it from' worrying too...with hindsight. Our whole family on both sides has many strands of ASD running through one side and ADHD the other. having had a not fun three years in which Nathans school placement broke down and he ended up so anxious and depressed he needed hospitalisation after attempting and doing a good job of cutting his wrists with a school book I am only just now with a computer getting chance to read again. Hallo. Share this post Link to post Share on other sites
yameretzu Report post Posted June 6, 2005 Hey My name is Stephanie and I have aspergers syndrome and AD/HD. I live in Birmingham, England. I am in a long term relationship with my boyfriend and we plan to get married and have children within the next 10 years, he has autism. People say that because of autism/aspergers relationships can be hard and in some ways I agree, we can totally misunderstand each other and thus have very passionate rows, but we love each other so deeply we make up the same day (normally within the hour) I believe that people with aspergers/autism can have the most beautiful hearts and we speak on the phone everyday we aren't together. We both seem to have an obsession with each other, which suits us fine. Anyway, sorry to babble, hi to all. Best regards Stephanie x Share this post Link to post Share on other sites
DrinkTheElixir Report post Posted June 10, 2005 Hello, My name is Grace and I have a 7 year old son who has been diagnosed with Aspergers. I am not sure even where to start trying to explain his situation, he is a very complex little boy and typically doesn't present with many of the 'expected' symptoms. We are exploring new ways to help alleviate some of his behavioural issues and started with a gluten tolerance test which shows that he is highly sensitive to Gluten - we have successfully cut this out of his diet and have seen amazing improvements. I found this site by doing a search or cranial osteopathy - so here I am! I am a 35 year old Mum of two, I work in the Nursing profession and have been an RGN for toooo long - nursing from 1989 to present. I guess that as parents we have worry's, concerns and are always looking for ways to make our son's life easier. At times we have felt that the main barrier to this has been other peoples attitudes and ignorance as regards children with aspergers and indeed any child on the spectrum. I think that for a long time I have fooled myself that I can march along, cope, alwys find the answer. And today I happen accross this site and realised that I don't have to (my husband included) stumble along trying to figure things out. As my son has gotten older I think that I have a growing realisation that I need more support, somewhere that I can ask questions about other peoples kids. My son attends a mainstream school - I would be interested in chatting with other parents who have children in mainstream and the difficulties that they have encountered. Also, anybody who has experience with paediatric cranial osteopathy - and whether it has had an impact on their child - if so how. Actually, I have a thousand questions - I really don't know where to start and feel a little overwhelmed! Anyway, I suspect that I am jibbering a little, so I will close here Share this post Link to post Share on other sites
bazranz Report post Posted June 10, 2005 Hi, Our son has Aspergers and tourettes. He was not completely diagnosed until 2003, and has only received his statement recently. I shan't bore you with all the ins and outs, but I will have a look around. Share this post Link to post Share on other sites
nellie Report post Posted June 10, 2005 A warm welcome to all new members. You will find lots of support and information here from some great people. Nellie xx Share this post Link to post Share on other sites
Libbeth Report post Posted June 11, 2005 Hi all, didnt want to start a new topic as i've already intro'ed myself a little while back (well last year).. I'm Libby, and have been tangled in a mess of social services, council housing evictions, and incompetant so-called "experts" for a few years now. It seems to be one step forward and 4/5's of a step back.. Have 4 kids, 2 NT (well one is suspect, but due to fear of being labelled MP i'm kindof leaving that one to the school to figure out) 2, Keira, 11 and Brandon, 4 have their diagnoses of ASD, Brandons floating around on it non specifically as his speech is still poor, and Keira is Aspergers, with "add traits" and various behavioural problems, that I would relate to her lack of dx for years, and her confusion with being forced into a mainstream setting she cannot handle *sigh* Basically, apart from the diagnoses for both children, i'm being evicted from my home because my neighbour took an initial disliking to my childrens "boisterous" lifestyles, and am now being more or less emotionally blackmailed by SS to get everything spot on or they "don't have an obligation to house myself as well as my children" in a nutshell, they will accomodate my kids. That will be fun for the foster carer. I'm sure Brandons habit of dropping his dummy on the floor and screaming blue murder until he more or less passes out, until you pick up the dummy thats about 4 inches away from him LOL.. I'm laughing because if I don't i'll cry. Would LOVE to hear from people who have had probs with housing/landlords because of their asd offspring. Seems totally unreal this could happen, but i'm sure i'm not the only one who's been through it.. Anyway, hello again to all, sorry to have to be the bringer of personal bad tidings, i'm sure the futures less murky for you lot *She hopes* Libs Share this post Link to post Share on other sites
Kathryn Report post Posted June 11, 2005 (edited) Hi Libby and welcome , Sorry to hear you've had such a tough time especially with SS who should be supporting you. You'll find lots of support on here, as I have. I have two children, a 16 year old daughter with AS and an NT son who is 8 next week. I look forward to "talking" with you on here, K Edited June 11, 2005 by Kathryn Share this post Link to post Share on other sites
wobbly Report post Posted June 12, 2005 Hi all, My names Diane, married to Steve. Two children, Briony (8) and Matthew (6). Matt has a diagnosis of a severe language disorder - described by some professionals as semantic pragmatic disorder. No one as yet has labelled him as having an ASD, most want to appear to keep him seperate from ASD and focus more on the language. He is in mainstream school with a full statement and is learning good stuff every day. A few questions and issues are forefront. Managing challenging behaviour (the only thing challenging about it is that it isn't what people consider 'normal') and getting Matt to understand his boundaries. Managing our worries and concerns for his future which are quite raw. Balancing our support between our son and our entirely uber 'normal' daughter - Briony shows no signs of problems and in fact the two of them are incredibly close - sould we be watching out for problems? Q: Has any one used an ionkids gps at all to keep track of your little ones? http://www.ion-kids.com/ Q: What about this semantic pragmatic disorder business? I know the NAS doesn't use it but..... Blimey, just how do I fit our entire life into one post!! Diane Share this post Link to post Share on other sites
nellie Report post Posted June 12, 2005 Hi Diane, Welcome to the forum, you will find lots of information, support and understanding on here. I'm not sure what it is you want to know about semantic pragmatic disorder. You will find some information here. Diagnosis, OT's and Semantic Pragmatic Disorder., Any advice? http://www.asd-forum.org.uk/forum/index.ph...t=0entry24768 I have had a look at the ion-kids site. It's an american site, and as far as I can tell you can't purchase items from the UK. Have you had any experience of this product? I hope you find the forum useful. Nellie xx Share this post Link to post Share on other sites
bid Report post Posted June 12, 2005 Welcome to all the new members! Bid Share this post Link to post Share on other sites
sam5886 Report post Posted June 14, 2005 Hi everyone My name is Sam - married to Gordon. I have three kids Charlotte (5), George (4) dx Aspergers and Speech and Language Disorder and suggestions of Dyspraxia, Harry 1. George was diagnosed with Aspergers in Nov 2004 and with the support of pre-school SENCO I applied for a parental assessment in April. We were turned down (INITIALLY) and I had a bit of a shouting session at anyone who got in the way. The LEA have since agreed to assess and that is where I currently am - trying to get my head round the section that say parental input - where exactly do you start? Sam x Share this post Link to post Share on other sites
NikkiSmith Report post Posted June 14, 2005 I figured I should introduce myself rather than lurking around reading anything and everything! I am Nikki, 24, partner to Paul who's 35 and was diagnosed with Aspergers in May (finally! I really was beginning to think I was going mad!) and full time mum to 3 fantastic boys aged 4, almost 3 and 6 months. We are in Farnborough, Hampshire and I think I am going round the bend! We are just starting out on the road of chaos to get our middle son all the help he needs at playgroup - they didn't really believe me until he went for his first session and they began pulling their hair out He now has 1-to-1 help (he only started last month!) we have appointments for speech therapy this month (as he doesn't really speak, just the odd word) and a paediatrician next month. I've all ready met the Senco who is refering us to Portage too. The health visitor is referring us to Homestart for a volunteer. Everything is happening so fast that I am spinning! I am not sleeping as Iain, my middle son doesn't and is getting really good at waking the whole house, Paul is now in Bagdad until August (this is not really a bad thing at the mo!) and I am on prozac before I lose the plot (which is likely having just looked at the 51 pages of the DLA forms!!) WOW! That is probably way too much info for an intro, but given the time it's taken me to type it I have to post it and come out from hiding. Thanks for getting this far! Nikki. Oh and I am new to this kinda thing, so humour me if I do it all wrong! Share this post Link to post Share on other sites
big mamma Report post Posted June 14, 2005 Welcome Sam and Nicky - nice to have you aboard ! <'> Share this post Link to post Share on other sites
bevalee Report post Posted June 14, 2005 Welcome to all of the new members Share this post Link to post Share on other sites
stressed out mum Report post Posted June 15, 2005 Hi everyone, What a great site. My son was eventually diagnosed with Aspergers in year six and was prescribed a low dose of Ritalin, although his father and I were not sure about using medication we wanted to help our son. My experience with primary schools sounds the same as bluejean-genie, although we did eventually have to remove my son from his infant school because of the response from some of the teachers to his behaviour (no-one else was allowed to break the rules except him). My son has now started senior school and wow what a difference, he actually attends school without having to be coaxed from his bed in the morning. He now thinks before he acts and makes his own decisions well and will, at his request be reducing his medication, after all he says I have to learn to control myself sometime don't I mum. Maybe soon I can change my name to 'not so stressed mum'. Share this post Link to post Share on other sites
Gordie Report post Posted June 15, 2005 stressed out mum: Congratulations!! It looks like you are our 1,000th member!! Kris? Elefan? nellie? Does she get any special recognition for this? James Share this post Link to post Share on other sites
Hectorshouse Report post Posted June 15, 2005 A 1000 members well done krism, it just goes to show what a fab place this is, welcome to all the newbies from another fairly new newbie! HHxx Share this post Link to post Share on other sites
mossgrove Report post Posted June 15, 2005 A big to all the new members welcome from member #5! I blundered across this site in the very early days and it has been a real privilege to watch it grow to where it is now. Many thanks to Kris, Elefan, Nellie and everone else for making this place what it is. Simon Share this post Link to post Share on other sites
