szxmum

<'> >< <'> >< I can relate to the sense of loss - I feel it when I see friends' sons who I have known since they were babies taking driving lessons, going to concerts, hearing that they are having sex with their girlfriends. I feel it when I see my dd (14) overtaking her brother - organising and starting her first job, going to youth club, going on school trips and to school discos. I feel it when I look at my ds who is in emotional pain wondering why he is so different from his peers. My difficulty is knowing what to say when people ask what ds is currently doing. "Well he's at home on DLA because he has recently been diagnosed with Autism and has mental health problems" doesn't exactly trip off the tongue and tends to kill the conversation stone dead when I actually get up the confidence to tell someone Does anyone have any good oneliners that they use? Thinking of you Julieanne <'>

Hi Becky and welcome I can relate to the feeling of your life being taken over. My son was a late dx so I've never had to explain to other parents - having my own problems at the moment dealing with telling immediate family members . I am sure someone will be along soon to share their story or offer advice. Take care <'>

Sending both of you <'> <'> ><

Hiya Mo I know what you mean about being a lonely parent but I just come on here and rabbit on Welcome to the forum

Congratulations Smiley :clap: I can feel your excitement and I am so pleased for you <'>

Hi magenpie This subject is very close to my heart at the moment as we are also worried about enabling our son to become dependant upon us. I think what you need to ask yourself is this - are we enabling our son to become dependant or independant? I think as has been suggested above that structure is very important. Give him responsibilities and expect that they are complied with eg we have made my ds (17) responsible for contributing to the household budget. He pays for this out of his benefits and is happy to do so. He likes to feel that he is contributing to the running of the house and it is good for his self-esteem. During the week he gets up at 8 o'clock each morning - the rest of the family is up going to work, school, doing housework so it is expected that he gets up as well - no arguments. He makes his own breakfast and his own lunch. He is responsible for his own room (with A LOT of nagging ). He helps out with housework eg I wash the dishes and he dries them and vice versa. I like the idea of the laundry Bid, that's going on my list - ye Gods, the idea of letting my ds loose with an iron The important thing is that he is learning skills that will hopefully some day allow him to look after himself. I have at long last recognised that he needs to be physically taught and supported to enable him to learn - he is not the same as my daughter who watches, assimilates information and goes off, attempts it by herself and is successful 99% of the time. Connections that Sally mentioned - this is something that I am just beginning to learn about. Does your son know or understand the importance of being dirty and know how to prevent it. The first time this was said to me I was horrified, I said, of course he knows, he's 17. Now I am not so sure. I'll try with a recent example to explain - for years we only had a bath in our house so we taught ds that if he did not want to have a full bath, he could wash his hair in the sink. We taught him to look out for when his hair was greasy (it becomes greasy a lot - he's 17) he knew then to have a bath or to wash his hair in the sink. Early this year we had a bathroom refit, complete with shower - woohoo. During this time we had 3 days with only the loo plumbed in. I spotted that ds was not brushing his teeth or washing his hair. I asked him why not, he said he couldn't because we had no sink in the bathroom. I had to explain that he could use the sink in the kitchen just like the rest of the family. He did not associate the kitchen sink or the fact that the rest of the family were using it with himself. He could not independently transfer or apply the previously learnt skill - wierd eh??!! Anyway, I just wanted to let you know you are not alone. Good luck with everything <'>

I'm really pleased for you.

Thank you to everyone who has taken the time to reply to my post <'> Bid - I'd never have thought of this as a bereavement but it makes a lot of sense, thank you. Thank you Jaded, you will never know how much your post has helped me - I owe you one <'> I have never come across this before. My mother, my dh and me (to a lesser extent) were completely stuck in the medical model of disability. I can now say with complete confidence and belief that my son is disabled and the actions I am taking are enabling him and more importantly, I will work towards passing that advocacy over to him . Thank you, thank you, thank you

Here is one for all you lovely people out there on a very hot and muggy Thursday Do you label yourself or your child disabled? Do you accept that you or your child are disabled? I am having real problems with this. Most of you regulars will know by now that my ds received a late dx of AS. I took him out of sixth form, applied for DLA for him and Carer's Allowance for me. I take full responsibility for my actions. After lurching from crisis to crisis I felt we had reached a point where we could not continue in this fashion not when my son's mental health, physical well-being and life were at stake. The only "box" available in society for my son was incapacitated and disabled. The other "boxes" of job-seeker, student or worker were not and are not an option at this moment. If we had the money, I guess we could have just "dropped out" and been "dependant" on my husband. We haven't got the money. So, I and my son are "dependant" on the state and my son is "disabled" in the eyes of the state. I know in my head that I have taken the right course of action. However, my mother has a real problem with mine and my ds current "labels" and her negative views are bringing me down, making me doubt my actions, making me feel guilty and ashamed. She makes me feel that I have been a "naughty girl" and have "been bad" and have done the wrong thing. I want to get to the point where my feelings match my head - if that makes sense. I don't want to spend my days feeling guilty that my son and I are "dependants" and feeling that I need to defend my actions. I don't want to spend my life feeling guilty that I have labelled my son as disabled. I don't accept that he is disabled or the negative stereotypes that the word disabled can conjure up. I accept that he has Autism and that this has impacted on his ability to function in social environments. Help me out here, how do I get to the point where I don't care what people think? How do I get to the point where I don't care if people point out that "There's nothing wrong with your son. He's clever and he looks perfectly healthy"? How do I deal with my mother who says it is not right that we are claiming benefits - the implication being that we are "sponging" off other people? I want to get to the point where I can think "You think whatever the h*ll you like. You don't know our situation" and really, really feel it, inside

Phew - <'> <'> >< Choosing GCSE options seems to be a really tough time at secondary school these days. It's brilliant that the school are supporting Marcus He may just be picking up on the heightened anxiety that is all around him. My NT dd(14) had a major meltdown over choosing her options - it was just the stress, comments from the teachers such as "These choices will affect the rest of your life" didn't help matters. It won't help that the kids are probably becoming "demob happy" as they are getting towards the end of term. Parents eh!! maybe you need to have a quiet word with your Mum and explain that you need her to back you because at the moment you don't need conflict or to be undermined. If she cannot or will not back you, maybe you need to withdraw a little - just until you feel able to deal with her. My mother was also apalled when I claimed DLA for my ds. She has accused me of labelling him as disabled - well it wasn't exactly my ideal course of action but I felt I had run out of options and as it turns out, it has been the best decision I've made in a long time . However, with my mum it is snobbery and ignorance. I have just today made the decision not to look to her for support until I'm strong enough to cope with her worries and inability to cope. Anyway, just to let you know you are not on your own. Thinking of you <'>

Hi Graham and welcome to the boards

Welcome to the boards, there is a lot of information here and a lot of good people with lots of different points of views. I have found it a life-saver. The NAS has a lot of info on DLA on their site.

Oooh this post brought back memories of Nazi swimming teachers at ds's primary and secondary schools. These teachers did award the certificates and it was taken very, very seriously. I can remember ds's Year 4 teacher saying to me on the quiet "Is there any way you can take your son to swimming lessons? He is so upset that he is the only one who hasn't passed their certificate" Lord, it was a miracle if I could get ds to change into his swimming trunks, let alone get in the pool. School was at least having more success in this area than me. One of the problems was that they did not permit swimming goggles so I wrote a letter, the teacher supported me and they made an exception for ds. Result one passed certificate. Ds really could not tolerate water going in his eyes, once this was sorted he came on in leaps and bounds. Fast forward to Year 9 at secondary school. Like Nobby above, ds could not co-ordinate arms, legs, head in the water - he managed a very awkward front crawl at best. In this lesson, the kids were to do a sitting dive from the side of the pool. Ds was petrified of the dive but more scared of the teacher. He gave the dive a go The teacher shouts in front of everyone "Rubbish!!" That was the last swimming lesson ds ever attended at school and who can blame him. So, as above, if you haven't already tried it, try goggles. If not, maybe a quiet word with his teacher who can be prepared with a Good Effort certificate when swimming certificates are awarded.

Thanks ScienceGeek. Yes I have - none available in this area - we are very, very resource poor. There are some services for pre-school children but none for teens and adults .

I can remember the date, 11th May 2009 (I think it will be etched into my brain forever ) , I came home from work to find ds in a dreadful state. Dh was away on a business trip and dd was at a friends. After a year of similar crises, I can remember thinking things change now, today, because if they don't I'm going to come home from work one day top find my son has tried (or succeeded) to take his own life . Then came the madness of doctor's appointments, diagnosis, resignation, and applying for DLA and Carer's Allowance. That's all calmed down now, there's not much more to do in the way of officialdom. Things are looking up, ds is sooooo much happier and calmer So much so, that every time I look at him I know I've done the right thing The one concern I have left now is trying to encourage ds to adopt a constructive way of life. Left to his own devices, he is like any teenager and will spend his days watching dvds or playing on his laptop or Playstation. We have set down groundrules - he pays us board and lodging, he is responsible for paying for his own travel, hair cuts, clothes and entertainment (games, dvds, etc), he gets up & dressed at 8 o'clock, he is responsible (with lots of nagging ) for his bedroom. He is also a good soul and occasionally helps out with household chores, decorating and cooking. I never get teenage attitude or strops (get plenty of that from his sister ) and the anxiety, obsessions and depression are sooooo much less. However, the days are long - he will go out for a walk with me or by himself once a day. I am wracking my brains for things for him to do independently around the house (he is not ready yet to move far from the house) that preferably do not involve spending hours staring at a screen. Any ideas anyone?

Bid, thinking of you <'> >< <'>

I think he is in denial and shock and is frightened and the same as me, stunned at the speed with which our lives have changed. He feels guilty as well because he sees Autistic traits in himself and blames himself. I think he relates to what our son is going through and is probably a bit resentful that he never received any support from his parents. He is not a bad man just a very busy man with his head stuck in the sand - he'll get there, I'll drag him I'm going to go off and read that report - it may help me feel better. I have searched and searched for ASD specialists and have come up empty-handed. The one local parent's support group is on it's summer holidays and isn't starting again till September Thank God for this forum is all I can say. Featherways I'll let you know when we find that racetrack. I'm not giving up on my ds. I think he's bl**dy amazing to have got through this by hisself. I'm in awe and so very proud of him.

Families :wallbash: Just want to scream :wallbash: Any time I want to talk to dh about ds, I get what is becoming a stock answer "This is too big for us to sort by ourselves. We need professional help". It has mostly been me who has contacted school, our gp, CAMHS, AMHS, the NAS and I am running out of steam. So I am beginning to bat it back to him with "who else do you suggest I contact dear" or "you have a go, maybe you'll have better success than me" but it annoys the hell out of me - he immerses himself in his work and his attitude is let the professionals sort the "problem". Then my mother decides to get involved. Ds has improved dramatically since leaving sixth form and it is lovely to see. Instead of congratulating us, I get "When will you be getting him back into sixth form" or "What on earth is he going to do with his life" Errrr "I don't know Mum" and no, I'm not going to push him back into sixth form, college or work just to keep you happy - I've spent the last five years pushing him to go to secondary school and look where that got us. For dh, the professionals can "cure" ds and for my Mum, I can "fix" the problem by getting him back into school or work :wallbash: Just feel alone

But ds isn't 17 He's 17 physically; he's 17 intellectually but I don't know what age he is socially and emotionally - we can't see much progress from when he left primary school maybe 11 or 12 Is there any way to place an age on emotional and social development by the way? So ds still likes to go on holiday with us - just as long as we never go on a plane again and that's the point where friction is being caused in the family (that and the fact, there's no money this year - sigh )

I just wanted to say a huge thank you to everyone who has posted on this thread <'> I have enjoyed (seems the wrong word, maybe appreciated is better) reading all your experiences. Thanks, Szxmum

This is an area that I am also having to get my own head around. I have always used my holiday as my coping mechanism - I can cope with anything as long as I get my week away lying in the sun - with two full-time wages coming in, we have always been lucky enough to manage a yearly holiday. This year because I have given up work - it ain't going to happen and boy am I feeling it. Getting on holiday has always been very difficult - extreme anxiety, panic attacks and OCD when leaving home and travelling. Once on holiday, ds turns the hotel room into his safe place, always wanting to return there asap. This has never bothered me as I will happily spend hours on the balcony, on my sun lounger sipping my cocktail Ds has always enjoyed holidays, once there but they have always been very tame, based around the hotel. However, last year was a different story. We had saved enough to go on a holiday of a lifetime to Florida - remember at this time we still had no idea that ds had AS. Well he had the mother of all panic attacks in Manchester Airport - he was trying to run out the airport, dh was physically hanging onto him, dd was in tears, distraught because dh had said we had to cancel the holiday and she wanted to go to Disney. I remember thinking "this can't be happening, this can't be happening". Well thanks to a very lovely flight attendant we got onto the plane (last). Ds shutdown for the 9 hour flight and I spent the whole flight physically shaking and thinking, well we're going - how the h*ll are we going to get back. I had visions of us coming back on a cargo ship. We ended up going to a doctor in Florida who prescribed benzodiazapine (sp?) and on the day coming home I "drugged" ds. The minute his eyes cleared it was "take another one of these love". Still that's us now - he will not consider stepping on a plane - he won't even talk about flying. Because we don't have the money, a holiday isn't an issue at the moment but hopefully we will manage one next year. I feel very guilty even thinking about a holiday without ds but the benefit to dh, dd and myself is immense. I will be very sad to be on holiday without ds(17) and am scared that I am even contemplating leaving him at home on his own (with family looking in on him from time-to-time). Only time will tell if we ever do go on holiday without him but I do feel at the moment, he cannot control everyone just to make himself feel safe. Is that horrible?

Hi All I feel like I am starting to live on this forum - I've been here just over two months and there a lot of you out there who have been around for a lot, lot longer So..... I am interested to know what impact a diagnosis of Autism had on your day-to-day lives, as the impact on ours has been profound; it has changed our lives in a big way,very, very quickly. Prior to diagnosis: Dh and I both worked full-time, ds and dd attended mainstream secondary school Diagnosis: Ds's dx came about through him initially presenting with severe mental health problems. Further investigation led to a dx of Asperger's Syndrome Outcome: Ds dropped out of sixth form. He is currently receiving Incapacity in Youth Benefit and Disability Living Allowance (Middle rate care and Lower rate mobility). I have left full-time work and currently receive Carer's Allowance. All I can say is Wow!!! I am still reeling. Are there any more like us out there or are we an unusual case? How did your life change?

I've been thinking about this today. My DD (14, NT) went off today to do her Duke of Edinburgh Bronze camping trip. This was organised by herself with friends through school. She told us she was would like to do it, we agreed, took her there this morning and will collect her tomorrow afternoon. She goes to youth club every week - she instigated it, we take her there and pick her up. Same with her weekly guitar lesson and her Saturday job. The impetus comes from her with her friends - our role as parents is to say yes you can or no you can't, provide the money and the taxi service A perfectly "normal" teenager. I was trying to remember the last time I instigated a club or social activity for her and it must be 3 or 4 years ago. So yes, she is out, not quite 5 nights a week, but a lot - the important thing is (and I am sure it will be the same for that TAs daughter, if she had only stopped to think about it) is that it is organised BY HER. My ds on the other hand has never requested to go to a club or initiated any form of social activity. It was always organised by me or his Dad and the outcome was always a painful social experience with no friends. At 17, it is no surprise that although he wants friends he chooses to avoid those "painful" experiences.

<'> >< <'> to you too. Yep - I could have written this myself and as Kathryn said earlier up the thread - you can't force them. Eeeh somedays you just go round and round in circles

<'> >< <'> If only it were that easy. Lord if it were that easy we wouldn't be on here day after day seeking help and solutions It's Friday night - I hope your having a large glass of your favourite