Sooze2 Report post Posted March 4, 2009 Not in a financial sence but by just being there. Me and DH are basically alone and Ive now convinced myself that I am in fact an orphan because its easier than mulling over what wev'e done wrong over the years! Quote Share this post Link to post Share on other sites
hedders Report post Posted March 4, 2009 No support from anyone not even hubby. Only support and advice is what i seeked on here. I sometimes take dd to an indoor/outdoor play centre for children with sen, but i find that parents always compare and speak to the children's parents who are worst affected or have sereve disabilities. As i often get told well there not that bad as my child can't walk or talk etc... Quote Share this post Link to post Share on other sites
aliwoo Report post Posted March 4, 2009 my OH's family are very good, supportive and understanding of kyle....yet they are step grandparents my family on the other hand are the opposite (although one brother bless him tries so i dont include him in that equation..he babysits if needed, although he still doesn't see why kyle is different..but then he is himself lol) sadly my OH's family live 100 miles away, but we are looking to move nearer to them soon. had a major fall out with my dad recently over my son, i printed out a grandparents leaflet for him, but he hasn't read it. so now i dont have anything to do with him Quote Share this post Link to post Share on other sites
bikemad Report post Posted March 4, 2009 Family support...didnt know what that meant so googled it lol...sorry....none of my family bar one sister who will have J once in a blue moon for an hour. My other halfs mum is great but old so limited in how much she can do but she will have J for a couple of hours every other Saturday.....other than that its just me n other half but he tends to leave it to me so its me me n me. Quote Share this post Link to post Share on other sites
Sooze2 Report post Posted March 4, 2009 Yep, I deal with the kids on my own too. I really didn't think it would be like this, every one I know has family support except me and some days it really gets to me! Told DH the other week that if he did the school runs for a couple of weeks he would realise how other people's families work and then he would understand why I get annoyed. On his birthday the other week he had no phone call from his mum and dad who were in New Zealand with his sister and their kids even though they said they would phone. My parents phoned me but I missed the call because I was doing homework with DS and they turned up 5 minutes later obviousely thinking we would be out, when I offered them a cup of tea they practically ran out of the door! Didn't even pop in DS's room to say hello! BUT its me they phone if they need help!!! Starting ranting, better stop now Quote Share this post Link to post Share on other sites
joanne1 Report post Posted March 4, 2009 My family listen to me when I tell them about going to camhs or ds is in trouble again. But that is about it. They offer no advice or don't even say that much back. I bet they just feel they have to listen. lol We are hoping to get our dx next week on the AS. If we do it won't make much difference to them i don't think. So i suppose its just us at home and of course this forum, which i have learnt so much from!!! Joanne Quote Share this post Link to post Share on other sites
Pippin Report post Posted March 4, 2009 Not much support here either. My folks were great when he was small, but are both now, sadly, dead. In laws are fine with him for a few hours but "couldnt possibly cope" for any longer and live quite a way away. We're lucky to have one good friend who he adores and will look after him if I'm taxiing the others around. I think my biggest need is for someone to yell and sob at occasionally, and my friend is always there for me then. Quote Share this post Link to post Share on other sites
sadie Report post Posted March 4, 2009 Support from family? No, but support to family, yes. Not that it's their fault : being an older parent both grandparents remaining have dementia....and I have my own health problems now. It's all a real worry. Thankfully Social Services are giving me some support now though I realise not everyone has that.... Quote Share this post Link to post Share on other sites
chris54 Report post Posted March 4, 2009 Don't really get any support from family. Both grandmothers (sons) are to old and frail to help even if they understood what was going on(Both granddads have past away). Aunts and uncles all live to far away to be any real help. But he does love it when his big sister comes to visit, which is not not often enough.She is not much help as such but plays at his level. Quote Share this post Link to post Share on other sites
NickyB Report post Posted March 4, 2009 My Mum and Dad are both very supportive and understanding - but Mum has bipolar disorder and is also physically disabled, and Dad is getting a bit frail now, so neither of them are able to help with babysitting etc. My brother has moved to Dorset, and seems to be distancing himself emotionally from the family in general (he has his own issues to deal with). He changes the subject very quickly when DS's autism is mentioned. DH has a huge family (5 siblings who have 22 children/grandchildren between them!), but sadly none of them live anywhere near us. They are brilliant, though - probably because there are a number of kids on his side who have problems (Downs, Dyslexia, Aspersgers, learning difficulties), so it's something they all talk about openly, which is great Overall, I think we are very, very lucky Quote Share this post Link to post Share on other sites
Diane Report post Posted March 4, 2009 Not sure what that is 'family support'. Just go it alone here. My support network is DS psychologist and his outreach worker and of course all of you guys. Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted March 4, 2009 my parents and family have been so understanding and supportive been the best done know what id done without them fighting my side helping me sort out stuff (independant living skills|) not pushing me just encouraging me gently i so grateful to have such a fantastic wonderful accepting family they great with me! so thanks everyone make me feel wanted and special (just because im aspergers and dyspraxia) you try best to get me even when you don't! know been hard difficult sorry unlike most kids! they know me better than me! lol X i can never repay my family enouigh all of them making me feel loved and just different but in good way!accepting thats me who i am and n ot taking offence by it! think you amazing bunch of people! love you loadz thanks sticking by me when got tough and heartbreaking i thank my lucky starsi have you im proud your mine! that you fought the battle long the way won't take NO for an answer when support and help was crushed you standed with me when scared .worried,afraid! thanks for making me go mainstream though too best decision you ever made of me! made me as indepndant as possible pushed me but not too far just enough to help me get by! Quote Share this post Link to post Share on other sites
sonj186 Report post Posted March 4, 2009 Not in a financial sence but by just being there. Me and DH are basically alone and Ive now convinced myself that I am in fact an orphan because its easier than mulling over what wev'e done wrong over the years! to be honest we are pretty much alone too, my folks and my husbands seem to think its something cam will grow out off! they constantly ask if he is better yet! i have a sister who lives about an hour and a half away and she will occasionaly have him only about 1 weekend a year though! other than thet theres no one that would have him and to be honest i dont think any off them or cam would cope! Quote Share this post Link to post Share on other sites
Sooze2 Report post Posted March 4, 2009 my parents and family have been so understanding and supportive been the best done know what id done without them fighting my side helping me sort out stuff (independant living skills|) not pushing me just encouraging me gently i so grateful to have such a fantastic wonderful accepting family they great with me! so thanks everyone make me feel wanted and special (just because im aspergers and dyspraxia) you try best to get me even when you don't! know been hard difficult sorry unlike most kids! they know me better than me! lol X i can never repay my family enouigh all of them making me feel loved and just different but in good way!accepting thats me who i am and n ot taking offence by it! think you amazing bunch of people! love you loadz thanks sticking by me when got tough and heartbreaking i thank my lucky starsi have you im proud your mine! that you fought the battle long the way won't take NO for an answer when support and help was crushed you standed with me when scared .worried,afraid! thanks for making me go mainstream though too best decision you ever made of me! made me as indepndant as possible pushed me but not too far just enough to help me get by! Oh my goodness, you sound like such a lovely person! Your family must be SO proud of you. Quote Share this post Link to post Share on other sites
MelowMeldrew Report post Posted March 5, 2009 I suspect very few of us get family support at all. Mine don't even live in this country now, grandparents are deceased, step siblings are completely unsupportive, and frankly more of a drain on us than our autistic son is. They seem to resent I spend so much of my time with him and not them. Perhaps if they showed some interest, I could but after 14 years I am not optomistic, and my son doesn't recognise them, either as siblings or family. Our children can be so time-consuming and attention intensive, but I love every second I spend with mine Quote Share this post Link to post Share on other sites
isme Report post Posted March 5, 2009 Family support? hmm.... Well mil said that there isn't an issue with ben, its all him "just being a boy" hmm.. Only had the girls when I had to take ben to hospital for his appointment, apart from that, not much at all.. My mum is still grieving the loss of my dad and I spent an hour on the phone listening to her tell me that she cant see any point in life and that she is going to end it all... so although she would if she could, she lives over 2 hours away and just isnt able to... Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted March 5, 2009 i hope my family are proud of me i try to do my best! it so hard and difficult when living an autistic life! Xx Quote Share this post Link to post Share on other sites
gavpedz Report post Posted March 5, 2009 I am lucky enough to have a supportive and understanding family which is great but unfortunately my wifes family are not so understanding and honestly think Josh will get better on day. It's not an illness we tell them! They hand us articles about people with ASPERGERS that have amazing skills or that run a relatively normal life and tell us maybe Josh will get better and have a hidden skill like this trying to explain to them that Josh is Autistic not Aspergers is a nightmare and drives us insane. Anyway thats that lol Quote Share this post Link to post Share on other sites
Paula Report post Posted March 5, 2009 My parents have tried over the years to get there heads round theire grandsons prblems.When he was younger they were of the thinking it was me who caused it all and that basically all he needed was a firm hand.....i was too soft.Aspergers was all aomething id made up. But give them tehre due has hes got older and theyve realised he isnt "normal" for better want of a word there there to listen to me whinge on,they will look after hi if we need them to..............in fact they had him for a full week in september so we could go on holiday alone as a couple we left our daughter on her own it was our first holiday as a couple in almost 20 years. I think its not easy for someone in this case granparents to fully undertand all the ins and outs of the condition and how it effects youre life in small ways when they dont live it 24/7 so they can be of the thinking whats all the fuss about there nowt wrong with them. Quote Share this post Link to post Share on other sites
Paula Report post Posted March 5, 2009 (edited) oops posted too many times Edited March 5, 2009 by Paula Quote Share this post Link to post Share on other sites
sassyj Report post Posted March 5, 2009 Hi, I have to say I have been very lucky, My mum and sister are very supportive and if things all get too much they will take over things like the washing to help me out, Mum comes to all appointments with me and my DS. I dont know what I would have done without them sometimes, They dont actually understand Mitchells Autism but try to be as supportive, the same with My MIL, she doesnt understand, but accepts it and listens. As for my brother he doesnt really believe it and says DS is just DS and we shouldnt be labeling him and we should be harder on him to make him conform and become less rude and intolerant! I am glad I have found this site tho because it is such a relief to talk to people who are actually experiencing the same things so we can all help each other <'> Sarah Quote Share this post Link to post Share on other sites
lorryw Report post Posted March 5, 2009 We have been very lucky. Mum and Dad (on my side) dont understand my sons problems but love him anyway. My son has had a huge effect on my sisters family. My nephew and nieces have grown into wonderful, caring adults because they have brought up to involve my lad as much as possible. They have all helped out as carers at some time or other (my son has severe learning difficulties and is non verbal). On the other hand my husbands family havent seen my son for almost 15 years. Quote Share this post Link to post Share on other sites
MelowMeldrew Report post Posted March 5, 2009 We have been very lucky. Mum and Dad (on my side) dont understand my sons problems but love him anyway. My son has had a huge effect on my sisters family. My nephew and nieces have grown into wonderful, caring adults because they have brought up to involve my lad as much as possible. They have all helped out as carers at some time or other (my son has severe learning difficulties and is non verbal). On the other hand my husbands family havent seen my son for almost 15 years. What annoys me is one relative, who keeps saying "Never mind he will grow out of it..." Quote Share this post Link to post Share on other sites
smiley1590 Report post Posted March 5, 2009 i can't fault my parents they been there unlike serices and systems they advised me and been brillaint with me don't what id do without them beside me they my everything live for my family! simply the best! my rock through it all they make all struggling worth it! Quote Share this post Link to post Share on other sites
Cariad Report post Posted March 7, 2009 My DH is a godsend, we face everything head on together. If he wasn't around I'd be in a loony bin by now. My MIL can be great too, she lives 25 miles away though so not close. She had T for three nights while we went to London, so we had one night of full sleep extra it was wonderful. My mum is good too but works a lot but helps out when she can and she is only 12 miles away. Quote Share this post Link to post Share on other sites
Teresa Report post Posted March 8, 2009 i have not had any support since my daughter was born and that's 18 years ago, no living parents, x partner was not supportive at all, and has lived in Japan for the last 7 yrs, so t has not seen her dad for 7 yrs. I think you just have to keep picking yourself up and dusting yourself off, try and stay positive and get some time for you, some how Hope things improve for you. Teresa x Quote Share this post Link to post Share on other sites
AmandaB Report post Posted March 8, 2009 Luckily my Mum is fantastic, as she works as a Teaching Assistant with ASD children. My Step-MIL is great, as she has alot of medical knowledge and knows alot about the system. My MIL on the other hand is a pain, she wont accept F and acts like there is nothing wrong with him, just constantly speaks to him like hes a foriegner - Slow and loud! She thinks F's problems are all in my head - because I dont talk to him etc etc Quote Share this post Link to post Share on other sites
pookie170 Report post Posted March 9, 2009 My ex's parents don't have anything to do with my lads, due to a breakdown in their relationship with their son, but I feel they would have tried their best to understand/ support us. I'm just annoyed I can't fix the situation as both they and my sons are missing out.....but what can you do? I'm secure in my belief that my folks would have been fabulous, had fate been rather kinder but as things stand, I feel blessed that me and my boys have been welcomed into my partners' family- I don't know where we'd be without them. They certainly didn't have to accept us, let alone go so out of their way to be accommodating and supportive. They actually enjoy looking after the boys, when it can, at times, be rather a big ask, depending on how Cal is feeling....... They were recently asked by my sons if they could call them Grandma and Grandpa, and I was so terribly touched by their reaction- they didn't just agree, they embraced the idea joyfully and feel honoured to be grandparents. The whole shebang- cards, proud photo displays- they introduce the kids as their grandsons. It means so much to us, I don't think they know..... They have made such an effort to accommodate Cal's needs and to understand his condition(s!!) it just blows me away. I think I'm so emotional about the whole thing because it's so darn close to what the boys would have had from my own parents....I'm just full of thanks, respect and will forever be in awe of their acceptance and welcome.......I hasten to add that my SIL is also marvellous and has also become an Auntie of 2 nephews-a title she cherishes. I wish it was like that for all of us, because I recall only too vividly being completely alone with a new baby son and an undiagnosed,inexplicable and often inexcusable typhoon of a 5 year old son, having to trudge onwards alone through thick, thin and plain gargantuanly awful periods (what springs to mind here was a particularly vicious bout of flu, combined with foul weather,a baby with an ear infection and a child in constant meltdown because Daddy had disappeared.....I recall, and feel ill, drained and dreadful just replaying it.) At least we've all got this site, because even now, there's nothing like confiding in people who can reply with ' I know , I understand'....... Quote Share this post Link to post Share on other sites
