Introductions!!

[Bagpuss]

Huge welcome to all new members......hope you find this forum as wonderful as I have

[caren]

hello and welcome to all new members

[di30]

Hi there to everybody.

 

I registered a few days back, and thought, oops It's about time I introduced myself, so here goes.

 

Anyhow, I am called Di, I am married to Dai, (people call us the 2 Di's) lol, and have 2 sons, Daniel 12 and Jamie 18.

 

I live in South Wales.

 

I am one of 8 children, so my mum had 6 daughters and 2 sons, which range from the ages 34 to 47.

(Wasted no time).

 

One of my brother's is severely Autistic, he is now 41 years old, he has no speech, and will make sounds for attention and points to what he wants, and spends the days painting pictures and rocking to music............he is so adorable and we wouldn't change him for the world.

 

Over the last year we have been going through assessments with specialists for my 12 year old son, and they have stated he definately has Aspergers Syndrome, he also has learning difficulties as well.

 

When he first started school at the age of 4 the teaching staff were then concerned in which they had organised the appointments and referrals to a Child Psychologist, as Daniel would always stand away from anyone else like in the corner covering his face and would never take off his coat.

He would refuse to learn and take part in anything in the classroom including physical activities. He was also put on the 'Special need register'.

 

He then seen the 'Child Psychologist' although he was only 4 she just said he was just very immature and he will grow out of it.

 

In the meantime we moved house and he started a different school as this was so local to our new home.

 

We had expressed the concerns the school had, about the 'special needs register' so they gave us IEP's in order for him to have some support.

Every parents evening we would ask how he was coping, and everyone would state the same, he is doing fine,yet he complained he was being bullied in which we mentioned this to the school, and they tried to say well it was partly his fault too.

We noticed a few times when passing the school at break/lunchtimes he would be alone, and at one time he was circled by other kids being pushed here and there and kicked.

 

I went straight to the school to inform them about this, and they said they would keep a closer eye on him.

Things did seem to improve for a bit, but he never came out of school when we were waiting by the gates hometime with any friends, like you would normally see this with others like I did with my older son when he was younger.

 

The school just kept saying, not to worry things will improve as he gets older.

 

By the time Daniel had got to the Junior school we thought, by now there should be some improvements at least................again we were fobbed off even by the school's Education Psych, who said he will soon grow up, so no help there.

This went on and on and we were unaware of help & support of whom we could of made contact with to sort this out, even our GP said we need to go through the school to sort out these issues but any problems, please do go back !

 

In time I met a mate, who's son has Aspergers, he is 2 yrs younger than Daniel, I was unaware of aspergers at the time. My mate explained about her suspicions with my son and gave me all the contact details I needed to get something done.

I had contacted the Schools community nurse, in which she assessed and made a few reports, then it all moved on from there, as she had quietly assessed him on the school yard etc to make her reports which should give enough evidence for a referral.

She had also asked the school for a weekly assessment, in which I don't think they liked this very much as myself and hubby had spoken to the Education Pychs who tried to talk us out of doing this and to stop labelling our son.

We thought he is our son and we need to do this in order for him to get the right support he should be receiving.

 

Anyway in June 2006, my son was finally referred to a Child Paediatrian, who had seen him a few times, and then he started a mainstream secondary school in Sept 2006 in which there they have been great and sent in assessments of Daniel.

The Specialist came to her conclusion and said it s definately aspergers syndrome, and now Daniel is referred to CAMHS (Child & Adolescence Mental Health Service) and was informed he is now 2nd on the waiting list.

 

I will keep you posted of Daniel's progress.

 

The way I see it this has been left long enough at approx 8 yrs, so its about time things are finally moving on.

 

(Sorry don't mean to bore you) !

 

By the way great forums, I will recommend and pass this website on.

 

Cheers

Di xx

[Clare63]

Hi Di and welcome (welcome too to anyone above I may haver missed)

Thanking for sharing your story, as you have already experienced this forum is great, looking forward to getting to know you better.

Clare x <'>

[Bagpuss]

Hi Di, big welcome

[di30]

Hi thank you for welcoming me, I am so grateful and looking forward to chatting to you all soon.

 

Thank you once again.

Di xx <'>

[annie]

Hi Di,

 

Welcome to the forum .

 

Thank you for sharing your experience. Look forward to chatting to you soon.

 

Annie

xx

[hobbityhole]

Hi there, I joined a few weeks back but until now haven't really had 5 mins to introduce myself:

 

I am 34 married with a son aged 4 who has after much battling on my part now started to get some support - got told to start with it was because he was a boy or the old favourite, our parenting but upon going on parenting course realised we'd been doing the same as the 'specially trained' staff! Son was diagnosed August 2007 (finally!) as having HFA, project worker also suspects he may have dyslexia thrown in but too soon to tell, it'll become more apparent at school I've no doubt! Son is now being helped at home and in pre-school setting by special local project and is doing much better than a year ago. We'd got to the point where we were anxious about taking him anywhere (Holidays are still the worst due to lack of routine etc.) in case of meltdowns or other children being hit or shoved etc. We know he'll get there in the end but it's a long tough road......

 

[annie]

Hi Hobbityhole,

 

Welcome to the forum .

 

Glad you found us.

 

Annie

xx

[Clare63]

Welcome Hobbityhole, hope we can all help you a little along that tough road and perhaps help make it it a little less bumpy.

Clare x

[di30]

Hi and Welcome.

 

Just to say I haven't long registered and these forums are absolutely great, everyone are so supportive, so anything you need to ask your sure to get some feedback from all these kind people on here.

Due to my son's claim being turned down for DLA everyone on here has given fantastic advice in how to get through this and now i feel more at ease and sure to get there in the end.

 

Thank you to everyone, before finding this site I didn't know what to do, so thankfully I found it, and realise we are not the only ones who are having problems, and I am now more relaxed by knowing I am guaranteed that whatever I need to know I will certainly get answers on this brill site !

 

Thank you all so much again.

Di xx

[Bagpuss]

Welcome to the forum Hobbityhole <'>

[lynda4]

Hi everyone

 

I've been lurking a couple of days and love the forum, it seems very natural and friendly, love your emoticons too!

 

I'm divorced with 4 'children' (3 are young adults) who are all touched by autism in some way but are all very different. I prefer not to put identifying things like names online so - ds1 is 24 has autistic traits but you wouldn't know it unless you knew ASDs well. He lives with his Dad but I see him a couple of times a week. DS2 has Aspergers and is the most affected in the family, he's 22 and I've had a heck of a journey with him, through diagnosis, support at school etc etc etc. When I was trying to get him diagnosed, almost no-one had heard of Aspergers, even the professionals. Those that had, knew very little and quite a lot of it has been proved wrong since. For example no-one knew there could be a genetic link then and in fact specifically said there wasn't. He was diagnosed aged 9, though I could see a problem from birth and was trying to get help. DS3 has AD/HD with some OCD and autistic traits, he's 20. After ds2 he seemed relatively easy, just spirited but as puberty started, about age 9, the ASD came out with bells on! DD is almost 14, she's also been diagnosed as on the autistic spectrum but seems to have a foot in a few camps, so doesn't have a clear diagnosis of Aspergers or whatever. All the disorders tend to overlap anyway and it comes out differently in girls. She's well supported in a good school and is doing well though, so it doesn't really matter.

 

I have wall to wall autism here and its taken over my life to a large degree, so have taken time out of support groups and things for a few years due to autism overkill! This forum looks good to me though, so I hope to stay around if you'll have me.

[Bagpuss]

Hi Lynda

[Clare63]

Hi Lynda,

Welcome to the forum, I hope you find it as useful and supportive as I do, I am sure you will, the people as you have seen are lovely and we are all like one big cyber family.

Clare x <'>

Edited April 21, 2007 by Clare63

[Bambi]

Hi and welcome to the forum

 

We all can relate in so many areas of our life and support is what we all need

 

Bambi x

[lynda4]

Thank you, I feel quite at home already

[annie]

Hi Lynda,

 

A big welcome to the forum .

 

I'm mum to Alex (17, AS & ADHD). I know what you mean when you say that almost no-one had heard of Aspergers. Alex wasn't diagnosed until he was 11. I've also given up with support groups, not enough hours in the day . There's always somebody here that can answer any questions and understand how you're feeling.

 

Annie

xx

Edited April 22, 2007 by annie

[shadow cat]

Hello everyone , I am Deb i am mum to two teenagers on the spectrum both very,very different !!, first theres my son Tom he was diagnosed at the age of 9 with semantic pragmatic language disorder he also had learning difficulties he is now 16 we never did manage to get much help for him apart from SALT which has now disappeared too ! his senior school has been most unhelpful ,he will be leaving there in June he will be going to college on a learning supported course ,i am hoping this will increase his confidence and help him to become more independant , he has a few anxietys too his main one is the weather,thunder and lightning is a big one but the one that has the most impact is his fear of the rain and clouds in general , he prefers moms and dads company ,but i would dearly love him to gain some friends that we and he can trust,but i am so very proud of him he has come on so much from a non verbal 3 year old with full on melt downs to a hansome well behaved (bit of a phobia about getting into trouble though) brave young man ,then there is my daughter Amy she is 13 now she was diagnosed at the age of 3 she has severe autism,severe learning difficulties ,challenging behaviour ,she is non verbal and she also has epilepsy , she needs 24 hr care and always will do ,she is only at school part time at the moment she goes to our local special school for SLD they cant cope with her challenging behaviour it has been like this since last November she goes till 1pm where i collect her every day , they bought in out reach help from another school which i am considering for her next school ,we are going through the re statementing process at the moment , Autism and PMS dont mix since puberty kicked in we have swung from one knightmare to another she has severe anxiety its like walking on egg shells constantly she has hyper sensetive hearing even wearing and refusing to take off her ear muffs in the bath , loud noises make her flip and become very aggressive to any one that happens to be standing near by , the tip of the ice berg came a few weeks ago in the easter hols where she had a tantrum over i took something off her that she shouldnt have had ,she flipped and threw a metal lump hammer at my head she split my ear from top to bottom it was bleeding every where and i needed hospital treatment , my next worry is we have to take her to hospital for a pre op she needs dental work done and obviously she wont stand to be done while shes awake ,i am worried she doesnt like waiting and she has severe anxiety attacks around hospitals or anywhere medical at all she is going to flip i am phoning the hospital Monday to explain but i am concerned for my safety and the staff also i have explained all this to this hospital before and it has fallen on deaf ears ,we have had two bad experiences in said hospital hence the phobia of hospitals , she is too old and way to big for me to restrain for a long period of time i dont know what to do i am getting in more and more of a panic over it,can any one offer any advice ,we get no help from ss we contacted them but they could only offer Amy playschemes which i honestly dont think they will cope with her or she cope with them , i asked for a carers assessment they said what for ,i said i would like a social worker for links to other services like OT she said it was a waste of my time all ss would offer me as a carer would be holistic services ! , but they sent me the forms to fill in but i have no help to fill them in and it seems to me that they should have helped me fill them in , i have heard nothing from them since and doubt if i ever will but hey they say im doing a great job and to keep up the good work and to use PECS !!!! ,i am so tired she doesnt sleep well ,i have no social life at all ,over the easter hols i didnt get to got out of the house once not once except for my trip to A&E which was wonderful and peaceful except for the extreme pain ! , nobody seems to want to help or care about us as a family unit we are all just clinging on by our finger nails i worry about everything my head hurts so much all the time with worry when i take her out its a worry ,we use a wheelchair sometimes with a crelling harness for her safety and others ! sometimes she is as good as gold others i can end up on the floor of woolworths with her trying to contain her well you can imagine the looks and comments ,her violence is mostly aimed at me at home i suppose im used to it by now the pinching the biting the scratching the screaming okay i guess ill leave it there for now dont get me wrong i know there are others far worse off than me its just sometimes i wish just sometimes some one would help us ,and yeah i suffer from depression ,i comes out in the form of comfort eating ,so i am a big fat hippo too but my sense of humor keeps me going for now well if you didnt laugh you would cry !

[annie]

Hi Deb,

 

Welcome to the forum .

 

Glad you found us. Look forward to 'chatting' to you soon.

 

Annie

xx

[Bagpuss]

Hi Deb, big warm welcome to the forum <'>

[lynda4]

Crikey Deb, you've got your hands full, sending big hugs to you <'> My kids aren't so severely affected as Amy but as there are a few of them and one or other is always having a crisis, its driven me to depression - with comfort eating like you. I've also had a breakdown a few years ago, so know how having a child with autism and little or no support can affect you. I haven't found social services very useful at all over the years. We don't qualify, as in their eyes none of them are bad enough and they won't consider them as a whole. Finally, just a couple of months ago I managed to get Direct Payments for a carer for ds2, a few hours a week. Social services wouldn't give us that help and we didn't qualify for the Mental Health team, as Aspergers without additional learning difficulties isn't considered a mental illness. In the end both ds2 and I did have mental health problems because we hadn't had the support! We were/are both stressed, depressed and finding it hard to cope and the Mental Health team took us on and we got the hours. Its the best thing that's happened to us in years, will make such a difference to ds2 as he'll be able to go to things like sports, which I couldn't take him to myself because of having to be at home for the others. Its also psychological, just knowing that someone is helping you. Even if it had been just 2 hrs a week, it makes me feel like someone appreciates how hard it all is and thinks I deserve some help.

 

Maybe you could try contacting the Mental Health team in your area and see if you qualify for Direct Payments for a carer for respite for you? I have to warn you it isn't at all easy to get respite care but you could try. The organisation I'm linking below might be just what you need.

 

http://www.parentpartnership.org.uk/Templates/whatare.htm

 

You say you'd like someone to help you through the processes of claiming things and I think they are the people to do it with you. Others on here might have experience of them and tell you how good they've found them. Personally I've only just started with them due to the Direct Payments we'll be getting, but so far have found them to be good. I know how hard it is to get your head round all the paperwork and stuff you need to do to get help, when your brain is already scrambled by having the kids. As you say, you should have someone to help you and if Parent Partnership can't do it, they should be able to put you in touch with another organisation who can. Knowledge is empowering, some of the big organisations can take advantage of you not knowing your rights and how to go about things but there are always people, like on here, who can tell you what's what by personal experience - its like gold!

 

Have you seen your doc re the sleeping problems? Don't know if he/she can prescribe or suggest something that would help. DS2 had Phenergan twice a week to help him sleep for a long time. He didn't sleep through the night til he was 11 and after that was never a good sleeper. Consequently he was always tired and being tired made him hyper, which stopped him sleeping and so it went on. By giving him Phenergan twice a week it broke that cycle and he slept a little better on the nights he didn't have it as well. Phenergan is an antihistamine which has a side effect of being good for travel sickness and making you drowsy, you can get it over the counter. Mums have used it for many years for their kids as an aid to sleep, so its relatively safe but is still medication when all's said and done. Having said that, sometimes you need it, as the alternative would be worse. The downside is that some people get nightmares with it (ds didn't) and it can take a while to wear off the next day, so isn't good if you have school the next morning.

 

Recently ds has changed to taking Melatonin for sleep as I've heard lots of good things about it working well with autism. Everyone's different obviously and it doesn't work for everyone but thank goodness it works for him. It wears off after a few hours so at first he was going to sleep ok, a very natural sort of sleep but woke up again at about 2am! So I found a slow release melatonin in the US, which is 2mg but can be cut into 2 x 1mg pieces, which we do with a pill-cutter we bought in Boots. DS2 has always reacted strongly to medications, when he was on Phenergan he only needed half a dose and so he's doing well on the lowest doses of melatonin, 1mg slow release. Some people need more. I believe you can get it from your docs, though not sure if that's slow release or not. I couldn't get a low dose slow release in the UK which is why I had to send to the US for it. It works like a dream, he sleeps around 7hrs a night now and doesn't have any side effects from it at all. If you can get the sleep issue sorted, it will make a massive difference to both you and your daughter.

 

Re the PMS, again try seeing your doc who might be able to prescribe something for Amy, some sort of hormone tablet that will make it easier for her and reduce her PMS symptoms maybe? My dd suffers each month with her periods so I can really sympathise with you on that. She isn't on any meds for it, just lives with it but it does seem to be affecting your Amy much more and she has enough to cope with already, without that as well.

 

I think you'll need to chase up social services, in a perfect world, they'd give us what help we want and need but it all comes down to money in the end and there isn't enough in the pot for the sort of service we should all be getting, so often the one that shouts loudest gets the help first. Contact a Family are also very good with info and advice, you might like to check out their website or give them a ring? Don't be put off with their reference to 'disabled children' they have info on a huge variety of disorders including simple things like dyslexia.

 

http://www.cafamily.org.uk/

Edited April 22, 2007 by lynda4

[carebear]

Hi everyone

Ive been lurking around for a few weeks and have posted already so thought i should introduce myself. I have three beautiful daughters aged 18, 12, and 8yrs who keep me extremely busy. My youngest little girl was dx with ADHD/ODD and with severe emotional behavioural difficulties a number of years ago is now undergoing an assessment for AS/ASD and i am fighting an uphill battle on this one as there is a difference of opinion between the proffessionals involved.

Have been reading a lot of the posts here and its great to see how supportive everyone, its a fantastic site, am so glad I found it.

Looking forward to chatting to you all soon.

[Bagpuss]

Hi Carebear, warm welcome

[shadow cat]

Hi Carebear welcome xx

[Gus]

Hi everyone ,I just joined and thought I'd introduce myself.

 

I live accross the water in Ireland and have a 16 yr old son diagnosed with Aspergers and Dyspraxia .

 

Looking forward to being part of the forum.

 

Mary

Edited April 26, 2007 by Gus

[bikergal]

Welcome Carebear and Gus

[Bat]

Hello, I'm Bat,

 

Mum to two gorgeous girls, eldest 12 yrs old, and youngest 7 years old; both girls have special needs, but youngest has a tentative diagnosis of atypical autism with traits of ADHD, OCD and a generalised anxiety disorder; currently doing battle with school (and the medical profession, we'd like a proper diagnosis), and probably looking to home school her from September.

 

Bat

x

[shadow cat]

Hi Bat and Welcome

[100%Ben]

Hi all!

 

My name is 100% Ben

Im 100% Cool

some know me some don't, but ive posted before using my dads log in...

BUT TODAY I HAVE MY OWN NOW!!! My avater is going to be a band!!!

WATCH THIS SPACE......

 

This is the lead guitarist - ME!

 

KARRANG!!!!

 

Gotta go - time for bed :( oh well!

[Bagpuss]

Big warm welcome to Mary, Bat and Ben

[bid]

Hi Ben

 

This is Bid here!

 

How cool is it that you're on the forum now!

 

Love the avvy...did you make it or dad?

 

Bidx <'>

[Guest Lya of the Nox]

hey ben

[keepingmesane]

Hello everyone, i have been on the boards a little while but dont post much, i thought i had best introduce myself and my family

 

im Deb and i think im 28, i say think as my brain and memory has pretty much given up in the last couple of years, well thats sleep depravation for you im married to rufus who is a dental student in his first year at manchester uni, a lovely bloke who is very clever but not so good at day to day living

we have 4 lovely children, Kieran and Jasmine who are 3 1/2, Isaac turned 2 this week and Lauren who is almost 10 months old. Kieran was dx High Functioning ASD last year and is a bright little cookie. Jasmine has mild right hemiplegia, SPD and also is thought to be ASD so is being assessed later this year, she is very strong willed and stubborn but such a sweetie. Isaac is NT as far as we can tell so far although does show a few oddities and baby lauren is one happy little lady. i love how indiviual all my children are and wouldnt change them for the world, though the odd night off for a rest would be nice

 

I have had M.E for 7 years or so now, when i am able i like to paint and draw, i paint and personalise childrens nameplates, height charts, clocks etc and it is my intention to set up a home based business making and painting childrens furniture and murals by mail (sections of mdf painted as a mural here and then posted on to the buyer to put on the wall) though free time is a rare thing as hubby does very little with the children and they keep me going morning to night. i used to do face painting at paignton zoo voluntarily and also have done a few murals for some dental surgeries

 

its been a long journey of one thing after another since my twins were born but i am staying positive and am very grateful for what i have. since finding out more about ASD it turns out that i am most likely on the spectrum, my mum had a very hard time from when i was born and i have always been different from everyone else. it has been very strange to find out that im not all on my own in how i feel and how i act, quite a bit of a relief really. This website has been great for getting information and support and i just wanted to say thanks to everyone who answers my posts

 

 

 

this is my website which has piccies of my family on it if you want to see them http://keepingmesane.moleville.co.uk/ just follow the photo albums link for pics

[rach04]

big welcome to all newbies <'> >< <'>

[JoolieDoolie]

Hi everyone,

 

I'm a Yorkshire mum with a 5 year old boy with ASD (high functioning). I also have a 3 yr old daughter (NT) and a 5 month old boy (too young!).

 

My life is v. v. v. busy

 

even now, gotta go as one of my boys is yelling for me ...... great forum this .........

[Frangipani]

Hello

 

I am new here, can I join this forum pleeeaaassseee!!!

 

[hev]

helo to all the new people <'> <'>

[Millymoo]

Hi I'm new here and new to Aspergers so can I join please?

 

My husband was dx'd last week with Aspergers, and quite honestly don't know where to go from here. We can't seem to find much info about asperger/non asperger relationships. Mind you, I guess I haven't been looking long. I feel awful for saying this but most of the time (before dx) I thought he was lazy, arrogant, uncaring and selfish. I now know differently. Can anyone give me some advice on how we can work together to make things easier and for me to understand how his mind works a bit more.

 

We have a 6mth baby and a toddler which are a great frustration for my husband as they are constantly noisy. Our toddler is showing some asperger traits but we're not sure whether we're reading too much into his behaviour at the moment. Can speech delay be a problem in ASD children? I've read conflicting advice so am confused. Our son is having speech & language therapy at the mo and communicates by sign language and various noises

 

My husband's brother also has Aspergers but seems to have alot of different traits. I would say he's about 'middle functioning' so to speak

 

Sorry for the waffling but I'm a bit all over the place at the moment. It's a relief to have the diagnosis so now we can start to work towards our future x

Edited May 14, 2007 by Millymoo

[Kathryn]

Hi Millymoo

 

Welcome to the forum

 

There's a lot of information here, so have a browse, and if you can't find the answer to a specific question, ask away. You'll find several discussions on AS and adult relationships in the Beyond Adolescence section.

 

Look forward to talking to you here,

 

Kathryn x