Introductions!!

[Kathryn]

Welcome to everyone who's recently joined.

 

Kathryn.

[lizzie]

Hi all, Im new to this forum so please bear with me, I have an 11 yr old son with Aspergers and we are finding life very difficult at the moment, K was diagnosed AS in 2004 when he was in primary school, the school was great with him, having had many kids with asd in the school, K was very happy being at school, we had a brilliant network of support there and he loved it, he was very popular and had many friends, I knew 'big' school would be hard for him, but I didnt realise it would be like this! Since Sept last year not only has his school work suffered but he has been bullied and ostracised by other kids, who although are the same age as him seem so much more grown up than he is, he has had loads of time off school because he refuses to go, he has no friends and it came to light recently that he spends most break times and lunch times in the toilets, I was devastated at this and have allowed him to stay off school all week to give him a break from the stress, while I try to sort things out with the senco and the paed, I dont feel that I am getting any support, K's dad has nothing at all to do with us(his loss) and my Dad died suddenly, closely followed by my Mum even more suddenly K was affected very badly by this, he was with my Mum painting her a picture up until 20 mins before she died, my parents had always been my rock, since they passed away our lives have been so hard. There is a lot more to our situation than this but I dont want to appear to be feeling sorry for myself, Im not, I just need to talk about K's problems with other people who understand what we are going through, Im sorry to go on and on, this was meant to be an introduction with a brief outline of our situation, it turned into something else, I suppose Im just desperate to talk. sorry

[annie]

Welcome to all our new members

 

Lizzie - Please do not apologise . I really pleased that you've joined us. There is so much support here. Any questions, just ask.

 

Annie

<'>

[phasmid]

Hi Lizzie,

 

welcome to the forum. We are a friendly bunch on here and are always happy to listen and offer support whenever needed.

[lizzie]

Welcome to all our new members

 

Lizzie - Please do not apologise . I really pleased that you've joined us. There is so much support here. Any questions, just ask.

 

Annie

<'>

Thanks Annie. sorry for apologising oops.... Ive done it again!!!

[lizzie]

Hi Lizzie,

 

welcome to the forum. We are a friendly bunch on here and are always happy to listen and offer support whenever needed.

Thankyou I feel better already!

[phasmid]

I would suggest you have a good old nose about the place Lizzie, you'll see that the forum is nice and healthy with plenty of people posting on just about any subject you could think of (with a few obvious ones not included ). Join in, sit back and watch or kick off a new thread, whatever takes your fancy (except baddad...watch him he's beyond all help but we put up with him 'cos nowhere else will )

[Flora]

Hi lizzie, and welcome to the forum

 

Lauren

[Kathryn]

Welcome Lizzie, you can talk as much as you want here!

 

Sorry to hear you're going through a tough time - as others have said, this is a great place to come when you need information or support, or just a laugh.

 

I look forward to getting to know you,

 

Kathryn.

[lizzie]

Welcome Lizzie, you can talk as much as you want here!

 

Sorry to hear you're going through a tough time - as others have said, this is a great place to come when you need information or support, or just a laugh.

 

I look forward to getting to know you,

 

Kathryn.

Thanks for the welcome, its a relief to know that there are people I can talk to, who understand what we are going through, I look forward to getting to know you too, I wish I had done this a long time ago!!

[nellie]

Hi Lizzie,

 

Welcome aboard, this is a good place to be. I hope you find it useful.

 

Nellie xx

[Ben's Mum]

Hello, I am new to both this forum and to Asperger's Syndrome. My son, Ben, is 8 and was diagnosed with Aspergers syndrome a couple of months ago. We are still waiting for him to be assessed to see where he is on the "spectrum". We are still learning how to help Ben but at least we now have some idea as to why he has always been a little too different.

 

I have been reading this board for a little while and finally decided to register and get a bit more involved.

 

Thank you for your help and advice so far.

 

Ben's Mum

[annie]

Hi Ben's mum,

 

Welcome to the forum

 

We're a friendly bunch. If you have any questions, just ask.

 

Annie

xx

[Bagpuss]

Hi Ben's mum and Lizzie

 

Looking forward to reading your posts and welcome to the forum. I've also just recently registered and found it invaluable

 

Take care,

 

Debs

[NaneysMum]

Hi everyone.

 

I feel a bit of a fraud posting on this site. My daughter's problems seem mild compared with what some of you are struggling with. But its been a bad day - I've been unable to hold my own with school, my mum has told me she's just "at it" and the neighbours have had a field day watching Ainsley scream abuse at me and her little brother. Most days are better.

 

Ainsley is nine and is a very stressed and unhappy little girl. She has no friends and has progressed, over the past 18 months, for from saying "its so hard I would rather be dead" to writing notes about "why I should murder myself" yet her school think the main target on her IEP should be "come into school willingly on 3 out of 5 days". If I hear anyone say "attention seeking" once more they will see "challenging behaviour"!!!

 

She was first referred to EVERYONE when she was 5 - school were concerned about the difference in her performance across the ciriculum - she could count, read and talk (to teachers when she knew what was expected) like a 10 year old but couldn't write anything you could read - and her behaviour - e.g. tearing up other kids work, knocking over chairs etc. This was attention seeking - bad writting got her one-to-one - and as I'd just had another baby it was all down to that. Education psychology suggested, tentatively, that she had "communication difficulties - a wide vocabulary but copied adult speach patterns" and "significant but idiosyncratic learning difficulties" and possibly dyspraxia (to explain the handwritting) and referred her to everyone else.

 

By the time she actually got to see everyone else (she was 6/7) she was coping better. OT laughed dyspraxia out of the room - she'll never make a gymnast and prefers to eat with her fingers when she can get away with it but she could ride a bike, a scooter etc and she walked the line and drew the square for them. Speach therapy thought she probably had pragmatic difficulties but didn't require intervention. And clinical psychology thought that because she went to Brownies every week she was not disabled by her lack of social skills.

 

And she was coping better. And I was afraid of "labels". And I let it go.

 

And she struggled on. She cant cope with lots of thing most kids enjoy - groups, noise, surprises. She is now more aware of her differences especially her lack of friends (though I'm not sure she knows what a friend is). She is totally freaked by change - redecorating the house was a nightmare and changes of staff at school lead to the latest crisis.

 

School janitor, head and secretary all changed last term. Secretary was the biggest blow 'cos she organised rounders and that was Ainsley's only way of playing with the other kids. The Easter holiday was awful - she started worrying about going back to the last day of school and started hiding notes about murdering herself.

 

So back to clinical psychology who said she appears to have ASD NOS. Not Aspergers (which I've worried about since she was ~5) because she has some empathy and social interaction. I never thought I'd be glad to hear such a thing about my child but I was. She not bad or mad. She's a wonderful little girl having a hard time coping with the rest of us. And she's settled down a bit.

 

I though school would listen now and knew the new Head was reveiwing all IEPs so made an appointment to feed back. Target 1 - Ainsley will go willingly into class 3 ot of 5 days. Focussed on their problem with her behaviour not her problem of being unable to interact with other kids so clinging to me till the bell goes and I push her while a teacher pulls her. Tried to reassure me that she "looks normal" in class! I don't think I made them understand. I don't think they care.

 

I've rambled on. To anyone who's got this far - thank you. I've got another half bottle before another day. And it will probably be better. She is a sweet child and I wouldn't swap her or her issues - I just wish I could help her be happier.

[phasmid]

Hi NaneysMum and a big welcome to the forum. You'll find plenty of people on here willing to have their ears bent. So feel free to bend for all your worth! We all do it from time to time...I think its do that or go crackers!

 

Take some time to have a good look around (though it sounds lie you may have done already) and if you have any questions ask away.

[Bagpuss]

Hi Naneysmum,

 

Welcome to the forum I'm Debs and our youngest has DMD and Autism. So sorry to read your post <'> <'> <'>

 

I hope you find the forum as supportive and helpful as I have. I've not long been a member myself.

 

Your not alone, and you shouldn't feel your daughters difficulties are lesser than anyone elses, there not.

 

Take care <'> <'> <'>

 

Debs x

[mossgrove]

Hi Naneysmum

 

You have come to the right place, there are plenty of people here who understand.

 

My name is Simon, we have four children, the eldest two (6 and 8) are Autistic.

 

You are certainly not a fraud for coming here. Labels like high or low functioning tell us surprisingly little about the level of aupport a child needs or how unhappy day to day life can be.

 

I am sure there are a lot of thoughs going on in your head right now, but have you considered a special school/unit for your daughter? Our boys were profoundly unhappy in Mainstream school before they started at Special School last September and they haven't looked back since.

 

Does your daughter have a statement?

 

Simon

[gladysmay]

Hi i am new to this, never used a forum before (you can tell eh) this is a mini intro.

 

i have a son of 19 who was diagnosed last year with Aspergers Syndrome after years of misery in the education system and mental health service, i paid for this privately as i could not convince my GP or anyone else that this was the true nature of the difficulty. i am feeling pretty jaded by the failure of the system i had hoped would support me and my family. i have raised the kids as a lone parent for the last 18 years so i really could have done with the help but the fact that i was a lone parent seemed only to go against me in the eyes of the social services. we are beginning to come through the worst post diagnosis feelings and reach out to organisations for help but it is still a huge struggle especially trying to get local service providers and staff to understand, even when they say they do, i find they do not. i feel i have been walked over for so long when all i wanted was to be heard. i have three other kids, young adults now, all live at home with me. this isnt meant to be a moanfest but just part of the story of us.

Edited May 14, 2006 by gladysmay

[Brook]

Welcome to the forum gladysmay <'> <'>

 

You will find lots of support on here.

 

Brook

[bid]

Welcome to the forum, GM

 

Brook is right...this is a very supportive, tolerant , (slightly mad) site!!

 

Bid

[Kathryn]

Hi gladysmay, and welcome to the forum. You'll soon get used to the way it works, take your time and have a good look round.

 

I see you're the 1800th member - a good number to join on!

 

Kathryn.

[gladysmay]

Hi, thanks for your welcome, I have some questions about learning.

 

My son has been offered a place on a course that has some units that I feel a bit worried about, it is an IT course but more than 50% of the work seems to be about planning ahead, personal effectiveness, exploring yourself in realtion to the IT industry, so my worry is that this might be quite difficult for someone with AS? I could just be panicking because of past bad experiences and am I underestimating my sons potential, something I really dont want to be doing. Obviously everyone is unique and I am thinking about this in relation to my son recent difficulties but am concerned he might be set up to fail again?

[gladysmay]

Hi everyone.

 

I feel a bit of a fraud posting on this site. My daughter's problems seem mild compared with what some of you are struggling with. But its been a bad day - I've been unable to hold my own with school, my mum has told me she's just "at it" and the neighbours have had a field day watching Ainsley scream abuse at me and her little brother. Most days are better.

 

Ainsley is nine and is a very stressed and unhappy little girl. She has no friends and has progressed, over the past 18 months, for from saying "its so hard I would rather be dead" to writing notes about "why I should murder myself" yet her school think the main target on her IEP should be "come into school willingly on 3 out of 5 days". If I hear anyone say "attention seeking" once more they will see "challenging behaviour"!!!

 

She was first referred to EVERYONE when she was 5 - school were concerned about the difference in her performance across the ciriculum - she could count, read and talk (to teachers when she knew what was expected) like a 10 year old but couldn't write anything you could read - and her behaviour - e.g. tearing up other kids work, knocking over chairs etc. This was attention seeking - bad writting got her one-to-one - and as I'd just had another baby it was all down to that. Education psychology suggested, tentatively, that she had "communication difficulties - a wide vocabulary but copied adult speach patterns" and "significant but idiosyncratic learning difficulties" and possibly dyspraxia (to explain the handwritting) and referred her to everyone else.

 

By the time she actually got to see everyone else (she was 6/7) she was coping better. OT laughed dyspraxia out of the room - she'll never make a gymnast and prefers to eat with her fingers when she can get away with it but she could ride a bike, a scooter etc and she walked the line and drew the square for them. Speach therapy thought she probably had pragmatic difficulties but didn't require intervention. And clinical psychology thought that because she went to Brownies every week she was not disabled by her lack of social skills.

 

And she was coping better. And I was afraid of "labels". And I let it go.

 

And she struggled on. She cant cope with lots of thing most kids enjoy - groups, noise, surprises. She is now more aware of her differences especially her lack of friends (though I'm not sure she knows what a friend is). She is totally freaked by change - redecorating the house was a nightmare and changes of staff at school lead to the latest crisis.

 

School janitor, head and secretary all changed last term. Secretary was the biggest blow 'cos she organised rounders and that was Ainsley's only way of playing with the other kids. The Easter holiday was awful - she started worrying about going back to the last day of school and started hiding notes about murdering herself.

 

So back to clinical psychology who said she appears to have ASD NOS. Not Aspergers (which I've worried about since she was ~5) because she has some empathy and social interaction. I never thought I'd be glad to hear such a thing about my child but I was. She not bad or mad. She's a wonderful little girl having a hard time coping with the rest of us. And she's settled down a bit.

 

I though school would listen now and knew the new Head was reveiwing all IEPs so made an appointment to feed back. Target 1 - Ainsley will go willingly into class 3 ot of 5 days. Focussed on their problem with her behaviour not her problem of being unable to interact with other kids so clinging to me till the bell goes and I push her while a teacher pulls her. Tried to reassure me that she "looks normal" in class! I don't think I made them understand. I don't think they care.

 

I've rambled on. To anyone who's got this far - thank you. I've got another half bottle before another day. And it will probably be better. She is a sweet child and I wouldn't swap her or her issues - I just wish I could help her be happier.

[gladysmay]

Hello, naneysmum,

 

I am new to the forum so please bear with me and my typos! Your story sounds very similar to ours and I do hear you. My son was not diagnosed until the age of 18, with Aspergers Syndrome but his mainstream school life was a series of crises, all described as EBD, atttention-seeking, poor parenting (not openly said) but you get the picture. thank god I just followed my instincts when times were really bad and kept him at home, this of course provoked a reaction from education welfare but it was his sanity and mine at stake. He was tearing up books, throwing chairs, running out of school and laying in the road, this started around seven years. Looking back he was frustrated at the world he did not understand and became depressed as a teenager. I managed to get a Statement for him but this did not throw up any recognition of his autism and so was a useless piece of paper. The reality was that noone he came into contact with, the education psychologist, a psychotherapist at the local child and family clinic and the consultant paediatrician at the local hospital knew anything about autism. It was down to me to recognise it and pay for an assessment. I guess the main thing is that we were failed by the system and there was nothing I could do about it. It has been hugely frustrating and I havent completely let go of my anger toward the system but it was my relationship with my son that was the anchor. I found just stepping back from the fight a bit allowed me to breath and regroup. Despite all the bad times I still have hope for the future. We are still struggling with education and colleges etc but if you can just hang in there it will get better.

[gladysmay]

Welcome to the forum, GM

 

Brook is right...this is a very supportive, tolerant , (slightly mad) site!!

 

Bid

 

thank you, GM is easier, supportive, tolerant and mad is ok with me.

[gladysmay]

Welcome to the forum gladysmay <'> <'>

 

You will find lots of support on here.

 

Brook

 

Thank you Brook, hope to get to grips with the forum okay,

[NaneysMum]

Hi Naneysmum

 

You have come to the right place, there are plenty of people here who understand.

 

My name is Simon, we have four children, the eldest two (6 and 8) are Autistic.

 

You are certainly not a fraud for coming here. Labels like high or low functioning tell us surprisingly little about the level of aupport a child needs or how unhappy day to day life can be.

 

I am sure there are a lot of thoughs going on in your head right now, but have you considered a special school/unit for your daughter? Our boys were profoundly unhappy in Mainstream school before they started at Special School last September and they haven't looked back since.

 

Does your daughter have a statement?

 

Simon

 

 

Thanks Simon, and everyone else, for your welcome and support.

 

No I haven't really considered a special school/unit for A. Up till now I had found her school reasonably supportive, if unwilling to involve us. Its a small school, very close to home and is A's only link to the community she lives in. I still think its the best place for her at present and prehaps I just need to get stronger in dealing with them and educating them about her needs. I have high hopes for the new Head too. Part of my frustration is, I think, that now I have some confirmation of her having ASD and as I learn more about ASDs, I see the ways we are failing her. Now I just need them to see it!!

 

Secondary school might be different. The very idea terrifies me. She wont cope in a big school with lots of different teachers and class groups and moving between classes. I'm not sure she'll even be able to recognise her teachers as she tends to focus on one physical aspect of new people so if there are two red haired teachers in school she has no chance! Still, we have two years to get a handle on things - I wont burn that bridge till I come to it!

 

And no she doesn't have a statement - I'm not sure I know what it involves. One more thing on the list to research!

 

Thanks again - its great to know that somewhere someone is listening!

[billy peckam]

Hi there and welcome to the new forum.

 

If you have not already registered you will not be able to post replies or to start new topics so it is worth taking a few short moments to register by clicking on the link above (or from the login screen)

 

We would be grateful if you could take a little time to complete the above poll and post a reply to introduce yourself. Maybe you have a story to tell or would like to ask a question.

 

Go for it. This forum is for you and depends on your input, information and participation.

 

If you have any technical questions or problems using the forums then please feel free to email us at Kris@krism.org.uk or PM either myself or Elefan (forum co-host)

 

Regards,

 

Kris & Elefan

Forum Hosts

[billy peckam]

Hi everyone

 

I'm Billy and have just joined. I have two children - aged 5 and 2 and a great husband. Number 1 son was diagnosed with AS a year ago and is struggling at school. He is nearly at the end of Year 1 and still only attend school until 1.30 pm as they stay they cannot cope with him. We have managed to get a 15 hour per week statement which hopefully will help - but not today let's say. Does anyone have any idea about help me with a child who is very bright and articulate but must have everything his own way or he loses his temper big time (just one of the main problems we are having). Any help would be appreciated.

[mel]

Welcome Billy <'> , cant offer much help. dont have the same problems with my son but im sure someone will be able to offer some ideas.

[nuttynemo]

Hi All im nuttynemo

i dont know if im in the correct place but apart from starting the statement process

we are not having much joy with our sons school he is 12 and is constantly disruptive in class he is under a doctor who made the statment he has autistic brain growth but his inteligence is overcome most of his problems which leave us lost

 

he is acheiveing at school without doing anywork in class since last september but the school dont have a problem because he can pass any exam the put in front of him on a good day

 

but most of the time he is getting bullied due to the fact he cannot understand emotions

 

the doctors say there will be a name for what our son has one day

if forced to name it he would call is hyper sesitvity (where he takes things so personaly and cannot understand what his actions and verbal outbursts haveon other people)

 

having just started the stament what can we look forward to ????????????

[annie]

Hi Billy Peckham and Nuttynemo,

 

Welcome to the forum

 

It's great to have you aboard. You'll find lots of info and support here.

 

It may help if you copy and paste your posts into your own threads. I'm sure you'll both get lots of advice that way.

 

Annie

xx

[allure]

Hi, my name is melissa and I have a son who is 12 with AS,ADHD,OCD and Tourette's. I registered a few days ago but have just found the introduction link I look forward to sharing and learning here.

[Bagpuss]

Hi Melissa,

 

Welcome <'>

 

I've not long joined and found this forum so great for advice and support. Look forward to reading more of your posts

[board]

Hi all, Im new to this forum so please bear with me, I have an 11 yr old son with Aspergers and we are finding life very difficult at the moment, K was diagnosed AS in 2004 when he was in primary school, the school was great with him, having had many kids with asd in the school, K was very happy being at school, we had a brilliant network of support there and he loved it, he was very popular and had many friends, I knew 'big' school would be hard for him, but I didnt realise it would be like this! Since Sept last year not only has his school work suffered but he has been bullied and ostracised by other kids, who although are the same age as him seem so much more grown up than he is, he has had loads of time off school because he refuses to go, he has no friends and it came to light recently that he spends most break times and lunch times in the toilets, I was devastated at this and have allowed him to stay off school all week to give him a break from the stress, while I try to sort things out with the senco and the paed, I dont feel that I am getting any support, K's dad has nothing at all to do with us(his loss) and my Dad died suddenly, closely followed by my Mum even more suddenly K was affected very badly by this, he was with my Mum painting her a picture up until 20 mins before she died, my parents had always been my rock, since they passed away our lives have been so hard. There is a lot more to our situation than this but I dont want to appear to be feeling sorry for myself, Im not, I just need to talk about K's problems with other people who understand what we are going through, Im sorry to go on and on, this was meant to be an introduction with a brief outline of our situation, it turned into something else, I suppose Im just desperate to talk. sorry

i just want to say sorry you are haveing a bad time i lost my mother on the 26 4 06 it hurts so much when your chilren are hurt like this other chilren can be so cruel all the best to you and your son jill

[aro]

Hello. I had left a message on the morning site went down, so sorry if you've read this already

I'm Anna, mum to "i" aged 3 1/2, she has cerebral palsy, epilepsy and just being dx'd for ASD.

She has also gone back to trying to rip the scalp of her little cousin, something a few days ago I had said, thank goodness she doesn't do that any more!!! When will I learn

So any tips would be welcome

Anna x

[phasmid]

Hi aro, welcome to the forum (in case I have done this already, welcome again!). Tip's you'll find all over the forum. Have a good scout about and any questions ask away!

[Lila-Zen]

Hi all

 

Have been lurking and meaning to introduce myself.

 

I have a 6 yr old with severe autism (non verbal)

 

[Flora]

Hi lila-zen.

 

Welcome to the forum.

 

 

Lauren