martyn
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Posts posted by martyn
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not in the same situation but i've been appealing against my DLA decision for 1 year and 2 months... and its not ending any time soon. i was advised (after going to tribunal) that it is best to file with a 'change of circumstance' and get them to look at the decision that way, but i'm not sure if thats true, just what i was told -
Hello every one, for the last seven years. Our DLA award as been high on the carers componet. And low on the Mobility componet.
Our new award came as a huge shock. Nothing as really changed, but yet they've dropped us down to the lowest level on both of them. I can't believe it, if theirs any one of you out their thats been in a similar situation. Could you please help me. With how to present a stroung appeal. T
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Sorry to go :off topic: but I have to say my friend's little girl uses a wheelchair and she has to fight for inclusion all the time.For ages, they refused to let her attend after-school club because it's in a portacabin, and although that has a slope up to it, the slope is too steep for them to push her up it (!). My friend fought , got the LA involved, who told school they had to accommodate her...and now her DD has after school club in the PE store room
.My friend has to accompany her DD on all the trips, even though there is a full time 1-1. She even had to go on the residential trip from school, and, when Brownies went camping, she had to spend her Saturday night sleeping on a pile of newspapers in a Scout hut! What fun!!! :roll eyes:
Our current battle is over the new playground equipment, which my friend, who is on the PTFA, has spent 3 years fund raising for. It was installed just before Easter and all the children were really excited. There is not ONE thing that is accessible, not even one of those static boards that you trace your finger round. Nothing. :wall bash: So, my friend has now begun fund raising for 'Phase 2', where they will include accessible things! I'm afraid I couldn't be so patient, seeing my daughter come home from school in tears of frustration, screaming that she wants to be able-bodied.
This little girl was also excluded from the other girl's parties, after-school teas, etc. My friend made friends with one or two mothers, and invited their girls, making it clear why she was doing it. This honest approach is paying off, although she still hasn't been asked to sleepover (only at my house with my 3 hyper boys!
.Back on topic, I attended a birthday party with G over Easter. He really didn't want to go, I made him, and stayed with him. He spent the whole time on my knee, hiding his face and whimpering. One boy came up to talk to him, but G wouldn't talk back. The rest just ignored him. A couple of the gossips, I mean Mums
, came to ask 'What's wrong with Gabriel? He's always like this isn't he? Has he got something wrong with him?'. I decided I had to be very honest with them, and try to appeal to their better nature (!), so I told them that he finds social situations very stressful, he has difficulties making friends and playing with other children, but that he wants to be able to, and that we have to give him lots of understanding and support from home. Last week, my mum was dropping him off at school and saw a little girl giving out invites. G didn't get one, and the little girl confidently informed everyone in earshot that 'I'm not inviting G, there's no point because he doesn't like parties anyway.'
And so it begins...
Its their loss, you've got such a special life in your care. There are upsets, stresses and strains in all our lives. But I count myself very lucky to have a wonderful daughter in my life. Shes enriched it beyond belief. SOD HUM. Thats my daily therapy. I fling the curtains open, and yell it at the big neuro typical world. Has your child grows up you'll realize that your child isn't missing out on much mixing with these types of people.
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I don't know if were aloud to do this, I live in the North West of England. I have lived with with Aspergers Syndrome for the all of my 53 years. The problem being, I'm undiagnosed. I would like a diagnosis please. Are there any of you out there, Who can come up with names and clinics in the North West that can provide this service. Many Thanks, Martyn
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I'm sorry for taking so long getting back to you all. I'm preoccupied these days, thank you so much for your constructive comments.I have this gut feeling about my daughters rage. I think its the early rumblings of a Aspies trying her hardest to live a neuro typical existence in a neurological world. My ultimate fear is, that my daughter in the next few years is going to sucome. To the realization that she will fail. God knows whats going to happen when that day comes.
Thompson's, Yes, she'll come back from the bus station in a perky mood. If he looks in her direction, smiles, or even just says hello or goodbye to her. She knows what he drinks, what type of motor bike he has. She even goes on the internet to a site that as information about the bus company he works for. Hoping to see if there are photographs of him.
The medication your on, do you use it in conjunction with what you've been talking about?. I know its very personal but did you willing want to take it. I'm just thinking, that if this was recommended to my daughter and she said no. I don't know where we'd go from there. I do hope I'm making sense. Thank you
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I'm not sure I have any advice, but I just wanted you to know that you're not alone.. I'm 18 years old - I also have an obsession with someone who was kind to me at one point.. I had thought that it was linked to my Obsessive Compulsive Disorder, but I'm not so sure now. I have some 'stalking' behaviours I guess, which I am getting help with amongst other things.. Like Cat said, I now understand that what I was doing is an invasion of a persons privacy and is not right. I'm not violent and I certainly would never hurt him. Do you think your daughter would be? I also used to hang around by his house waiting to see him and other stuff which I'm too embarrassed to write about
But I do see that I'm obsessive over it. I wonder if your daughter knows or if she's in denial?What is her main reason for waiting at the bus stop? Is it just to see him? For me, it was just that. Once I saw him or he acknowledged me, I was in a great mood for the rest of the day. I attributed it to the OCD as I don't like obsessing over him, it causes a great deal of upset, but I can't help it. Much like my routines and rituals from my OCD. I will also admit that sometimes I had to stop myself and remind myself that he is in fact a human being - I think I sometimes looked at him like a possession/something I'm saving up for almost
It's very odd. I'm on a fairly high dose of medication at the moment, which actually works pretty well with regards to this situation. I'm able to block him from my mind a lot more now and it's not a big deal really anymore, it's more like a crush I guess. I'm not sure about your daughters aggression.. I have a terrible temper. But it doesn't flare up very often at all now.
Good luck
I'm sorry for taking so long getting back to you all. I'm preoccupied these days, thank you so much for your constructive comments.
I have this gut feeling about my daughters rage. I think its the early rumblings of a Aspies trying her hardest to live a neuro typical existence in a neurological world. My ultimate fear is, that my daughter in the next few years is going to sucome. To the realization that she will fail. God knows whats going to happen when that day comes.
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Our Daughter at the moment is a real worry to my wife and I. shes coming up to 18. Yes shes at a age where we can't tell her any thing. If theres a slight incling. She bombards us with swear words, becomes physically abusive. And starts throwing objects around the room. I thought those days were coming to a end.
Shes never had a boyfriend,but a few months ago she so a new bus driver. And took a instant liking to him. From that moment every day since . My wife in particular spends on average 4 hours a day sitting in the bus station with her. The reason being she wants to catch a glimpse of him. RRR youmay say, how cute shes got a crush. But its beginning to drive us nut now. Theres no future between them. He hasn't egged her on, we've tried talking to her about her crush, trying to convince her theres no future. But to no aveil. Shes going down this road, of wanting to follow HIM around. We just don't know what to do, to break the cycle.
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Hello everyone, just popped in to say hello. And just say to those who are finding it hard. Stay stroung. Right i'm off, I just felt the need to get it off my chest
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Dr ******* at the Autistic centre at Hallam University in Sheffield. As the serious view that people in these age groups should be diagnosed. You will have to be persistent at trying to contact him. But in a period of time he will respond to you.well my daughter has just been dx with AS. we have had years of problems. my 2 other kids are fine in most respects but both display symptoms of OCD. i havent asked for any help with them yet though.The thing is my hubby is a little bit eccentric (to say the least) and now after my daughters diagnosis i feel almost certain that he has it too. he is 45 though and sees himself as very intelligent and is insulted that i imagine there could be any problem with his behaviour. do i tackle it? or carry on as i have for the last 15 years we have been together...just ignoring and coping with it?
he is a collector of certain things (model cars, film memorabillia etc)
he has a vast knowledge of cars... he has maybe 1000 vids/dvds and countless books he can recognise a car just by looking at a small peice of the body or a dial or something.
he seriously lacks social skills. my family find him rude and ignorant.
he says hurtful things to me sometimes- not insults, just lacking in tact.
when i point this out he will be very hurt and upset as he loves me so much.
he is obsessive about cleaning his car he will dust the dashboard with his special little duster even while he is driving
he has a degree in financial type stuff and is highly intelligent but works nights in a solitary job as he dislikes pressure, ambition and working with people.
he has never broken the law, does not drink, smoke, and has a very very developed sense of morals. he is honest to a fault.
he talks incessantly about the same subjects over and over again , especially monetary things , and doesnt stop even when he knows hes doing it.
even the kids ask him to shut up sometimes or say hes giving them a headache.
i love my man but living with him is very hard. everyone knows he is 'different' or 'eccentric' but he cannot see anything wrong.
his parents cannot either so it would be useless and pointless to run this by them.
im about to start tackling my daughters problems head on now we have a diagnosis but i feel it would be helpful for us all if he could see the same traits within himself.
what do i do?
there are many other things too- for example i believe he is dyslexic- but i feel bad enough writing all this down.......
Hopefully this coming february I will receive a diagnosis from him. I am aged 53
Name and contact details of professional removed by moderator in line with forum rules.
Sorry Martyn, can you send the details to Beccy via pm? - K
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I don't know what to do next really. My moods have been very low, tired all the time, attention span of 0 (even on my obsessions!), anxiety through the roof. GP didn't really have any helpful suggestions other than referring me to the website no more panic. I don't have the energy to deal with this and get everything done for uni. What should I do next?Are you a member to a local Autistic support group. If you are, I'd pick up the phone and have a natter to them. The weather also at this time of year can also make you feel down.
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Sorry the latter part of the message should have read. Cannot cope as a neuro typical.We have a 17 year old daughter who over the last year'. has been presenting with worrying behavior. She as told ourselves in volatile sexual narratives. That she wants no support, no help in any shape or form. From this period of time on wards. When things are at the worst she screams, smashes plates, mugs and cups. Chairs get thrown across the room. Whats the most worrying thing for me. Hannah will incorporate what I would call emotional blackmail in to this. For example she will threaten to thump walls if she doesn't get her own way. And yes she as carried those threats out on three or four occasions . Ending up with swollen and blackened knuckles. We have seen our GP and I can't repeat what he had to say.We have to go in to Hannah's college next week. Hannah has become fretful extremely upset, over the last couple months she skipped quite a few days off college. She says that her lecturer makes her feel like a vegetable and its becoming unbearable.
After gaining a insight into whats going on. For me the lecturers are doing nothing wrong. What appears to clouding Hannah's judgment is empathy. It didn't play a big part in her life this time last year. But now its causing all kinds of grief, why?.
One last thing, I think Hannah is a neuro typical - Asper. I sometimes worry myself sick thinking about whats going to happen to her when she realizes she can cope as a neuro typical.
Thank You
Martyn
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We have a 17 year old daughter who over the last year'. has been presenting with worrying behavior. She as told ourselves in volatile sexual narratives. That she wants no support, no help in any shape or form. From this period of time on wards. When things are at the worst she screams, smashes plates, mugs and cups. Chairs get thrown across the room. Whats the most worrying thing for me. Hannah will incorporate what I would call emotional blackmail in to this. For example she will threaten to thump walls if she doesn't get her own way. And yes she as carried those threats out on three or four occasions . Ending up with swollen and blackened knuckles. We have seen our GP and I can't repeat what he had to say.
We have to go in to Hannah's college next week. Hannah has become fretful extremely upset, over the last couple months she skipped quite a few days off college. She says that her lecturer makes her feel like a vegetable and its becoming unbearable.
After gaining a insight into whats going on. For me the lecturers are doing nothing wrong. What appears to clouding Hannah's judgment is empathy. It didn't play a big part in her life this time last year. But now its causing all kinds of grief, why?.
One last thing, I think Hannah is a neuro typical - Asper. I sometimes worry myself sick thinking about whats going to happen to her when she realizes she can cope as a neuro typical.
Thank You
Martyn
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Hi,All these comments have been very helpful and it?s really nice to know that there are strangers who are willing to give their time and knowledge. So thank you all very much.
It sounds like he has AS to me, and of course it has always been a problem, but we didn?t realise how much of a problem till recently. In general people think he?s just a bit odd. I doubt if a diagnosis would help because he is what he is and anyway I married him for better or worse. He?s got many, many good qualities and I?ve been tolerant of strange behaviour because of them. If I?d known about AS sooner, I would have done many things in a different way. My husband also feels that I patronise him, Diane, he says I treat him like a teacher, but I?m struggling to help. I?ve no idea what the best approach is. How do you give emotional support to a man who never talks about his feelings? Tally, you said that ?If you can understand more about AS, then you might find strategies which can help you communicate better with your husband.? Is there a book that might give me a better insight?
Thanks again for all the help!
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It's made me more aware about relationships, it's brought me closer to my daughter. After the after shock of diagnose . It brought me closer to my daughter. I love to spend time with her talking about girly things .The trouble is i'm a 52 year old bloke. But she shares everthing with me, her feelings about boys and so on. I totally love those moments.
She's a very special lass, God gifted me and my wife with her.
I'm sat her typing this down with tears in my eyes, thinking what sort of a future she as. How I hate the Autism though. How it's interferred in my daughters life. The social isolation she suffers through no fault of her own. The difficulties that have inpaired her enjoyment of life.
I wish I could lay my hands on her and draw the ###### Autism out of her. I feel rage, Deep upset, despair. anxiety. fatigue. disbelief. Sorry to to make it sound like a shopping list. But the things that keep me going are a deep love for my daughter. and drive and determination not to let the ###### system grind me into the ground.
How Do You Feel?
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I think you can only receive it if your child receives one higher componet with in DlA. If your husband is classed as the carer he meann't be able to claim it. They won't take your income into account
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Hello every one. I don't think any one will be able to remember me from my last message. Which was nearly two years ago. The content of the message briefly was. I mentioned I'd had anough of the treatment i'd received from my local primary care trust for my 14 year old daughter regarding life skills and inter personal skills. I said I was going to fight the good fight and start legal action against them. Well the legal as now been up and running for all most the same length of time.
The good news is i've won that part of my legal action against them with out going to court. My Primary Care Trust are now making home vists on a regular basis to get a accurate picture of my daughters needs.Hopefully strategies will start soon.
The biggest decision I have to make now, is do we go through with this help. The reason being my daughter is now 17. She has no clue about what may happen in the forth coming months regarding this help. We have kept everything from her.
Putting that to one side , she has made stroung rumblings that she doesn't want help in any shape or form in her personal life.
She has hardly any structure in doing chores around the house for example. We try to develope these skills on a slowly slowly basis but over the last 10 months. She doesn't want to listen to reason. God I just don't know what to do for the best.Please give me your views. Perhaps you've beeen in a similar situation.Sorry I failed to mention she as mild to moderate Aspergers
Thanks
Martyn
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Hello, please can you tell me more about melatonin. And does it work similar to 5htp
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Hello every one,
I haven't been on for sometime, the last time I left messages saying that I was going to contest the system. Regarding lack of support mainly with in the nhs.I 've been involved with a north west solicitor since the end of December, shes concluding in my case that yes there is discrimination and a lack of support. She feels that this case should face legal action. And the legal action should take place in the high courts. With in the next six months there should be a conclusiion.
Hopefully my case, meann't just open up doors to ASD people to the proper treatment they justly deserve.Just another word or two.
NEVER, EVER GIVE UP
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to change the farcical system we have now. Put pressure on local health trusts lea, The goverment we are talking about childrens futures here. I know it gets loosely banded about basic human rights are being abused. No one person will change attitudes in these circumstances.What pressure are you wanting to exert on whom?xxI'm going to have ago
How about You
Martyn
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Hi Every OneLike the vast majority of you, i've been down the rocky emotional road of ASD. We all cry and have sleepless nights. wakey, wakey lets do something together. Blow away the cob webs, lets form a pressure group. They always say that theres size in numbers. If theres any one out there to fight the long fight.
Please contact me.
Thanks
Martyn
DLA
in General Discussion
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I don't know, what your situation is. The NAS have a welfare rights officer, we are expecting a phone call from him this coming tuesday. I don't know if thats of any use to you.