Paula Report post Posted August 13, 2010 Last night my son came over and sat down next to me then he said mum i want a hug i hugged him and asked whats wrong. To cut a long storey short he basically found the words to say he hates being different,he doesnt like the limitations it puts on him,he says he feels lonely and sad that he sees other 16 year old boys with girlfreinds and doing things and he wants to be like them............. It was a lot more detailed than that and took him over an hour to try and explaine due to diffiuclty in speech and stuff......luckily it was dark and we were sitting without the lights on so he was unable to see me crying.......... He left school this june........unfortunalty the college place has fallen through due to lack of funding and support and were in a limbo land looking at other options.I think this has played a part and when we go to see folks to try and sort out a scheme ect they focus in on his disability and i think this has made him realise hes different even though he kinda knew but we never realy focused on it because to us hes just our son but now all the focus is on his disabilty and i think the reality of being in the big world and not the special school is setting in. I also stupidly thought i could get a pt job to try and help out financially but after only a week ive had to jack it in it just isnt worth it.........my son still needs and will need on going support for a long while yet........so now i feel guilty for time wasteing my employers. Sometimes the hand youre dealt in life is so bloomeing hard to play........... Sorry for moaning on.......diffiuclt few months just gone difficult time ahead im sure theres loads in the same situation. Quote Share this post Link to post Share on other sites
dana Report post Posted August 13, 2010 Hi Paula I really feel for you and your ds. <'> >< <'> Please, don't regret anything from the past. You have always been a good mother and tried your best. The fact that you were employed at some point doesn't mean that that made your son worse. Unfortunately, ASD is a lifelong condition and we as parents can only do what we think is best at a time. There is no such a thing as a perfect decision. I wish you both a very best with the transition. <'> It is adifficult time for both of you. Danaxxx Quote Share this post Link to post Share on other sites
Kathryn Report post Posted August 13, 2010 Paula <'> >< Have as much of a moan as you need. Hope things get better for you both soon. It's so frustrating that one has to fight for support all through the school years only to find there's nothing in the way of support afterwards. K x Quote Share this post Link to post Share on other sites
Paula Report post Posted August 13, 2010 Thankyou Ive never actually worked ie paid employment since my son was born............ I got a job in a cafe last week did three shifts it caused no end of upset on the home front i lost care allowance and basically id to earn seventy quid to cover lost benefits and bus fares to just break even.to make it worth me while id have to work full time.........thats a cant do.............and to just mess round doing pt hours isnt worth the hassell.......plus me son cant be left for long periods.......ive no one to step in.husband works daft all over the place houres............ I also feel so fed up its like im trapped in a situation.......were in a lot of debt due to riseing prices no rise in wages i feel i should get out there and earn a crust and yet the rality is i cant due to our sons care needs and emotionsl needs someone has to be there. hes been a bit brighter today ive treid to hide my worry treid to be on the up..not easy for me when i suffer from depression myself due to bi polar disorder.... I know there are folks a lot worse of than us with kids in more need but you sometimes think why us why our son why me........then you think.............why not us...... Quote Share this post Link to post Share on other sites
oxgirl Report post Posted August 13, 2010 I know what you mean about the work situation, Paula, I'm in the same position. I desperately want to start getting myself a bit of a life and I'd love to work, but it's just impossible to find a job that would still mean I'd be there when needed for my lad. Plus, the fact that I haven't worked for the best part of 14 years no-one will give me a second glance anyway. I'm stuck in the house waiting for my son all day basically. He's to start college in September and up until now I've always picked him up from school. Great, I thought, I'll have so much freedom next year, he'll get a taxi to and from college, leaving me free all day to find a nice little job. Turns out LEA are threatening to cancel ALL his transport from Christmas, meaning I'll be even more tied down and have even less freedom than I have had for the past four years. I'll basically be spending three and a half to four hours driving him in and back from college, with a window of a couple of hours at home to sit alone and do nothing and talik to no-one. So much for me getting a life. I can also empathise with the realization of your lad that he is different. My lad is very depressed at the moment too. He received a form last week with information about getting a concessionary bus pass, which he found most upsetting, as he said he didn't see himself as 'disabled' and he felt this was labelling him as such. He's refusing to apply for the bus pass and would rather pay for any journeys they do during college independence training sessions, but it did knock his confidence and he knows he is behind in so many ways. He's dreading getting his exam results. The day after, we're going down to see his cousins, one of whom is the same age and will probably get about 9 or 10 A*s and Jay will end up feeling second best and like he's a retard, compared to him. Everyone will probably be making a huge fuss of his cousin and going on about how brainy he is and Jay will end up feeling patronised and patted on the head, 'oh, you did well too, of course'. Dreading it. Soz for the rant in your thread. <'> ~ Mel ~ Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted August 13, 2010 i was lucky i had college three years i found it challenging hard going when MH probs played up so hard to remained determined focused ambitious ( self harm depression suicidal thoughts) but i did volunteering at work placement in nursery boss saw how hard i work and from there offered me bank staff position part time i do ( 2 hours each afternoon) 4-6pm sometimes get called in earlier if they need me i feel like i have purpose there i feel i have meaning i don't feel nothing and no one i feel worth it while there i feel i belong something i find very hard to grasp outside them walls i clinging to the feelings it gives me there ..... they so understanding and supportive of me having A.S they laugh and joke with me and when having an off day just be there but also step back too maybe something to look into with your son i was going to give up volunteering after few months but parents said a waged job may come out of this stick with it carry on but volunteering even without money gives so much more ... self esteem etc that comes with it gets out of house into community meeting new people and learning what world of work like out there .... just an idea .... ?? worked for me ....!! pleased and glad i like to my parents advice! gives you something ti wake up for ... to get out social isolation /frustration etc and work on skills you need building up slowly .... Quote Share this post Link to post Share on other sites
jollypig Report post Posted August 14, 2010 we went to a wedding last weekend and during a quiet moment my 13 yr old said "im never going to have this am i mum" it broke my heart but i told her there was no reason to think like that as regardless of her issues she is still a beautiful /caring /thoughtful person and somewhere there will be a MR RIGHT just hopefully a long way off yet !!! Quote Share this post Link to post Share on other sites
merlin1 Report post Posted August 14, 2010 It is very reassuring but at the same time very sad to be reading this and knowing others are in the same situation as myself and my family. The saddest thing my son has said was when he was not long diagnosed and said 'I wish I could go to sleep and wake up all better'. It does break your heart and make you feel so helpless. It is hard to stay on top when everything seems to be falling about you, but we just have to keep at it, though it is very wearing. Knowing I am not alone in this with the forum helps. Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted August 14, 2010 i know so hard to remian positive focused determined to battle on through and is tiring fight to try find right balance on which tips all time one end or the other ... my parents feel so helpless and useless at times as they can't take away my aspergers within me my MH probs or just endless pain and heartache tears etc that come living with it i think they blame themselves especially my mum she said she wishes she had magic wand to take it all away and she could have it instead if mean't i could get a break away from it following me all time! drives me mad crazy constantly! grrr.... i recognise with your son's comment of waking up and it being fine .... the acceptance of reality which tough going and has been done broken down into gentle steps .... XKX Quote Share this post Link to post Share on other sites
Paula Report post Posted August 15, 2010 Thanks everyone Nice to know im not alone........though i wish others werent in the same position. he has good days and bad days at the moment ....days when hes full of confidence and then hell get another knock back and spirits fall ...............very wareing trying to keep positive on my side to keep his spirits up. Im looking into voluntary stuff ect its just realy diffiuclt everywhere i go they ask how old is he i say 16 and then they say oh theyve to be 18. thats another thing i hadnt fully realised the lack of provision for these kids post 16,nothing kicks in untill they reach 18 youre just left in limbo.......... Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 15, 2010 There are opportunities for youth volunteering at V. Quote Share this post Link to post Share on other sites
Paula Report post Posted August 18, 2010 Well things are startting to happen.............been in touch with a social group for kids aged 13 to 19 with learning difficulties it meets every wednesday night for 3 hours and they do alsorts of activities.........this week is a special week and its meeting every day from 10 till 1 so im going to take him down today meet the folks and the youth workers and hopefully hell enjoy himself and will want to go............its a chance for him to make freinds and do something other than hanging round with boreing old mum. Then Mencap got back to me and he qualifies for the buddy scheme and theres also a number of projects one doing gardeing and stuff the other running a cafe all done by young people with a learning diffiucltie ect working alongside crb enhanced checked voluntears and mentors........ You see ive been told its going to be hard to find at the moment paide work so i just want something for him to do to enjoy where he can meet folks get out and do somehting he likes.....he enjoys doing stuff in the garden and helping his dad........Hopefully itll work out hell get some much needed confidence boost and make a few freinds in the process....... Quote Share this post Link to post Share on other sites
Sally44 Report post Posted August 18, 2010 And any of this kind of thing is brilliant on a CV. And if he goes and enjoys stuff his confidence will increase. And success breeds success. But make it a gradual build up and not too much at once or he may feel too much pressure and refuse. Quote Share this post Link to post Share on other sites
missmoocher Report post Posted August 30, 2010 On sunday, returned back from 3 nights at Eurodisney with my eldest Missy (10) who is diagnosed Aspergers/Dyspraxia/A.D.D , my partner and 4 year old daughter (who is also showing signs of asd). What a nightmare!!! (well some of it). Before we left I e-mailed Disneyland Paris to see if Missy could get a Disability pass or "Easy Access Card". They told me to bring a letter dated within the last three months off the peadiatrician, which, of course I haven't got cos she was diagnosed over a year ago. In any case, I took my DLA letter and a copy of the ADOS assessment which shows that she has indeed an asd. I went to City Hall, shown my documents and was given a "easy access" pass. This pass is no use whatsoever, in my opinion, when the park is at it's busiest. The card is NOT a Fast Pass, and can only be used for the person with the disability and one Carer. But, of course, being a family of 4, it would mean splitting up, which, would stress Missy out even more. We tried the pass out once, but, the easy access queue was temporarily closed due to wheelchair users and severely handicapped children (quite right too!) therefore, we joined the regular queue. After, nearly knocking a ladies eye out, standing on umpteen peoples feet, pulling down the queue rope, and several dirty looks later., we got on the ride, only for it to be too loud, didnt like the smell, and questions like "how long will it take, are we safe etc etc etc. The GOOD and SAD thing about going away was that Missy said to me the night prior. U know Mum, I can't wait to stay in the hotel, I wont have my bedroom to sort out, will I. I can be like all of U and just get in bed without a problem, I asked why she wouldnt have to "deal" with the bedroom there, (she takes 3Hrs a night). I don't know mum, but I know that I can't wait to get to sleep, so, that I can be rid of my Aspergers and relax... Missy has had her first appointment at CAMHS. My main question is Why, can she go to bed no problem in other rooms, but, it can take up to 3-4hrs to sort her bedroom? Melatonin seemed to work at first, but at the moment even that does'nt help. I think that some of it must be pyschological maybe? Does anyone else have this problem. Quote Share this post Link to post Share on other sites
sesley Report post Posted August 31, 2010 my 10 year old experienced something like that last week, he wanted to play with neighbours boy,who is about 2 years younger and neurotypical,so he jumped on his tramploine and was unwelcome so chatting to him later he said he felt alone,he tries so hard to be social and to want to interact with others,unfortunately he is mostly rejected and mis understood. I know it will be important over the coming years to find ways to boost his self esteam and self confidence. He is in the last year of primary and is just becoming self aware. His autism is something he says is when he looses his temper,so we now have to positively start to help him understand aobut himself with the emphasis on him being unique and exceptional. Quote Share this post Link to post Share on other sites
trekster Report post Posted September 28, 2010 At your sons age i kept apologising for being born, was frequently self harming, hated myself and kept pushing people away. i now realise that was a combination of my asperger's and a system that didn't want to know (and from what ive heard still doesn't). Now im in a supported living flat, have just got my driving licence and hope to finish my undergrad degree next July. That was after 1 breakdown, a college giving me a fair chance and finally discovering a course on autism that i grabbed with both hands. NAS support groups in your area http://www.autism.org.uk/our-services/get-help-in-your-area/get-help-in-england/branches-in-england/branches-in-yorkshire-and-the-humber.aspx NAS campaign is about child mental health "you need to know" (the authorities not the parents). http://www.autism.org.uk/news-and-events/news-from-the-nas/parliamentary-launch-of-you-need-to-know-campaign.aspx Colleges that take autistics " This is a selective list of colleges taken from a variety of sources. Some take students as young as 15 years but all take students over 19 years. Please contact the Information Centre if you know of any other colleges that make this provision. This list is of colleges of further education that run programmes designed for students with autism spectrum disorders. " Henshaws College Bogs Lane, Harrogate, North Yorkshire, HG1 4ED Tel: 01423 886451 Fax: 01423 885095 Email: college@hsbp.co.uk Website: www.henshaws.org.uk Visual impairment with Autism/Asperger syndrome Age range: 16+ Pennine Camphill Community Wood Lane, Chapelthorpe, Wakefield, West Yorkshire, WF4 3JL Tel: 01924 255281 Fax: 01924 240257 Email: enquiries@pennine.org.uk Website: www.pennine.org.uk Autism/Asperger syndrome Age range: 16-25 Good luck Quote Share this post Link to post Share on other sites