hi

hi Shell - yes, he's always been that way.    Understood a number of words and short phrases when he was little.  Learnt numbers and writing before he could speak.   Once he started, said a 6 word phrase, then he went from strength to strenth with a good speech therapist.  But emotionally he's much younger and I don't think that's changed much over the years.  He has certainly developed in many ways and understands more than he did as he builds his knowledge.  He's managed to put more pieces together if you know what I mean, but I don't think he sees the full picture very often.   He has trouble with sequencing.  He would spend ages watching a video, pausing second by second, until he could build up the whole sequence.   But when it comes to emotions - his and other people's - then that's a slower development.  That's the autism, I suppose.  

My son makes me proud - I just wish he could have more self esteem and feel that pride in himself. Crystal, what you said about your son being at different stages in different ways really resounds with me. Jack is very intelligent and perceptive and sometimes almost seems middle aged, but emotionally he is very immature and still like cuddles with mummy :)

hi - thanks for the post.  About relationships - I think that those with aspergers maybe stand a better chance of having a relationship with someone than those who are ASD but not aspergers.  But as you say, you never know, as time moves on. My son's younger than his years, altho his body's adult.  He reminds you of a little brother you may have had.  In other respects he's more advanced.  So his development in different areas is at different stages.  When he was 18 I was telling his new sw about him and she said "you must be very proud".  I don't know about you, but nobody had ever said those actual words to me before.  Many things have been a struggle, sometimes prolonged, but she was right and she put it into words and yes, I was proud of what he and I had achieved.  

crystal12 said:

hi - yes the benefits office doesn't seem to make much distinction at these "medicals".  Lots of people getting anxious and depressed.  The power these people have over the lives of others is incredible and pretty frightening.  Everyone's lumped in the same boat.  I think everyone who gets knocked back should appeal.  It can take ages now to get it heard but it's backdated to when you put the appeal in.  Our children and ourselves have enough to deal with without getting treated like this.

 I don't think my son's developed to a point where he would be able to have a mutually satisfying relationship with a partner.  In the years to come maybe I'll be proved wrong - I hope so.  He has people he likes, people he doesn't like and everything in between, just like the rest of us.  He is young for his years in many ways.  He has a good team of carers, so as long as that remains the case I feel more confident about his future.  We all worry what will happen when we go.

most do, and a good lot get their benefits reinstated, as they were unfairly taken away in the first place,

as i said in another thread about this issue, they (the "interviewrs") get paid for actually taking people off, its how their system works, so obviously they will do that, a lot, not fair but thats what the business is, and sadly it is a business now

my partner never saw himself having a relationship never mind one thats lasted 12 years, it happens, actually lots of autistics have relationships, its true tho a lot dont work out, but then, thats the same with non autistic relationships isnt it, so its not something to worry too much about yet 

hi - yes the benefits office doesn't seem to make much distinction at these "medicals".  Lots of people getting anxious and depressed.  The power these people have over the lives of others is incredible and pretty frightening.  Everyone's lumped in the same boat.  I think everyone who gets knocked back should appeal.  It can take ages now to get it heard but it's backdated to when you put the appeal in.  Our children and ourselves have enough to deal with without getting treated like this.

 I don't think my son's developed to a point where he would be able to have a mutually satisfying relationship with a partner.  In the years to come maybe I'll be proved wrong - I hope so.  He has people he likes, people he doesn't like and everything in between, just like the rest of us.  He is young for his years in many ways.  He has a good team of carers, so as long as that remains the case I feel more confident about his future.  We all worry what will happen when we go.

Shell4429 said:

I do kind of know it isn't my fault that he has autism but I guess I just feel responsible when he's really down and miserable, because I feel that life has been more of a burden to him than a blessing. He's been taking anti depressants and they are going to try putting up the dose again. At the moment he's in a good phase because he's playing an X  Box game online with a girl he met through the internet but when she gets bored with it he'll go on a massive downer. I'm just bracing myself for that at the moment!

I know what you mean about doing the right thing - I decided to give up work in 2008 to support him more on a daily basis but now his DLA has been cut and I've lost the carers allowance and we may have to move - so I thought I was doing the right thing but now I feel I've let him down again - maybe I should have filled out the forms better, and now we're in this position and his peace of mind has been dented as a result. Hey ho. I know there are people with worse problems.

Why do you think your son wouldn't get a girlfriend/partner, I worry that Jack won't be I'm still hopeful that someone will 'get' him one day.

you cant do anything about him having downers if things in life change, its part of autism, all you an do is try to let him do whatever he needs to do when that does happen, as you sound like your alreading doing that as best as you can

you cant do anything else , your doing everything as it is

i can say for certian it wasnt you filling out forms that got the dla cut,

they have cut everyones, and when i say that , i mean it,

literally people who have been on long term disablity and incapacity, for serious issues like osteoarthritis or long term mental illness,

this isnt your fault, thats the way that system is working right now, hopfully they will sort that mess they are making out 

they are changing the benefits system, but in the process a lot of people are being let down, the change is needed, but how they are going about it is sickening (if you forgive my pun )

I do kind of know it isn't my fault that he has autism but I guess I just feel responsible when he's really down and miserable, because I feel that life has been more of a burden to him than a blessing. He's been taking anti depressants and they are going to try putting up the dose again. At the moment he's in a good phase because he's playing an X  Box game online with a girl he met through the internet but when she gets bored with it he'll go on a massive downer. I'm just bracing myself for that at the moment!

I know what you mean about doing the right thing - I decided to give up work in 2008 to support him more on a daily basis but now his DLA has been cut and I've lost the carers allowance and we may have to move - so I thought I was doing the right thing but now I feel I've let him down again - maybe I should have filled out the forms better, and now we're in this position and his peace of mind has been dented as a result. Hey ho. I know there are people with worse problems.

Why do you think your son wouldn't get a girlfriend/partner, I worry that Jack won't be I'm still hopeful that someone will 'get' him one day.

hi Shelley + Scorpion0x17 - no it isn't anyone's fault.  The days of mothers getting the blame are well behind us and have been totally discredited.  Maybe one day they'll know how it happens.  Most people don't understand about autism so don't appreciate how we have to do some things differently.  Some people can be hurtful.  I can't see my son meeting someone and being their partner.  I do wish he could experience a relationship like that.  I've always said that as long as he's content and/or happy, then so am I.  I've spent a lot of time over the years trying to get the best for him - school, benefits, carers etc.  At times when he's been unhappy I've felt I have ultimate responsibility for that because I'm his mother and have blamed myself, saying I should have known better.  Hindsight is wonderful, isn't it.  You think you're on top of everything and find out you're not.  Others can let you down, sometimes early on, sometimes later.  Then I've intervened on his behalf because he can't put it right himself.  We never stop learning about autism.

Thankyou Scorpion :) Helps a lot.

Shell,

Get one thing straight, right now - how a person with an ASD gets on in life has very little to do with how good their parents are at parenting!

You're probably a great parent.

Stop punishing yourself for something that isn't your fault!

(It isn't anyone's fault!)

I got a bit worried there for a time, reading that your good parenting had resulted in your son being independent, because my son is far from it. However I read further and saw this wasn't the case. So I'm not a poor parent! :( I don't think so anyway. But I've always had to battle with people who think I am too soft, that I mollycoddle him. It annoys me because they don't see enough of him to realise that he can't help being unable to organise himself, the fatigue, the lack of motivation. Even my own family, including his father (who also has mild ASD) accuse me of this. Sometimes perhaps I could be firmer, get angry with him, but his life is already so challenging I don't feel that it is appropriate. It's also not how I feel like dealing with him. Crystal I wonder if you share my feelings of guilt, that I gave birth to him and he won't ever be able to lead a normal life. I know it's ridiculous, that I am not responsible, yet I can't help feeling guilty all the same. I've even stayed single for the last five years, because I don't feel it's fair for me to have a relationship if it's something he won't have. It's not out of the question that he will find someone but until he does I can't envision myself becoming involved with anyone. At the same time I think that possibly if I had someone it might make our lives easier!

crystal12 said:

hi again some one - no he isn't independent, altho he can do a number of things for himself.   As an example it wdn't be safe for him to go out by himself, altho he wdn't get lost.   He has a communication style which you need to get used to.  He also has some sensory issues.  He knows he needs some help.  He needs 24 hr support + at long last he's got an autism-specific care provider + has moved from where he 1st lived.   I've always tried to be a good parent, sometimes you can just get so tired + feel you've fallen short.  I've learnt to be a very patient person...something I never was!

Ah yes, i know that well, tho my partner isnt severely autsitic, having high functioning autism/ aspergers, I did have to learn a lot of patience for his 'unique' way of doing things, some things I still have to 'learn patience' for

I feel confident in saying you didnt "fall short", you do what you can and it does make you tired, but that doesn't mean you didn't do everything you could do

hi again some one - no he isn't independent, altho he can do a number of things for himself.   As an example it wdn't be safe for him to go out by himself, altho he wdn't get lost.   He has a communication style which you need to get used to.  He also has some sensory issues.  He knows he needs some help.  He needs 24 hr support + at long last he's got an autism-specific care provider + has moved from where he 1st lived.   I've always tried to be a good parent, sometimes you can just get so tired + feel you've fallen short.  I've learnt to be a very patient person...something I never was!

crystal12 said:

hi some one - when he was about 15/16 he asked what wd happen when he left school.  He must have been giving it some thought because he tends to stick to repetetive conversations generally.  Saying that, he has asked about the bigger issues such as how are babies conceived, how do they get out + death.  At the time, our neck of the woods was gearing up to create supported living houses.  Things can take ages to come to fruition.  I sd to him he cd either come home or if he wanted he cd live with some others in a different house.  The house wd be theirs with staff to help.   I think he wanted a bit more independence.  He was at an autism specific boarding school, altho he came home frequently + regularly, so he was used to not always being at home.  I checked with him a few more times over the months as he can change his mind, just to make sure.  Then when he was older we went ahead......and that is a Whole Different Story!  

Sounds like he is very independant, a reflection on good parenting :-) 

hi some one - when he was about 15/16 he asked what wd happen when he left school.  He must have been giving it some thought because he tends to stick to repetetive conversations generally.  Saying that, he has asked about the bigger issues such as how are babies conceived, how do they get out + death.  At the time, our neck of the woods was gearing up to create supported living houses.  Things can take ages to come to fruition.  I sd to him he cd either come home or if he wanted he cd live with some others in a different house.  The house wd be theirs with staff to help.   I think he wanted a bit more independence.  He was at an autism specific boarding school, altho he came home frequently + regularly, so he was used to not always being at home.  I checked with him a few more times over the months as he can change his mind, just to make sure.  Then when he was older we went ahead......and that is a Whole Different Story!  

crystal12 said:

hi Shelley + Some one - nice to be welcomed.  

Shelley - any help or info I'm happy to give.  My son moved into supported living when he was 19 because he wanted to.  I'm a mine of info about that subject!  

Some - one -  exactly - had tooo much of people who don't get it

crystal12

oh tell me about it, they either nod and smile, with the 'i dont really understand what all the fuss is about, your partner seems normal enough' look, or they just sit not saying a word, like they dont believe anything you have said and just want to ignore it

It would be nice if someone would sit down with us and say, ok, so i dont get it, what does it all mean for you, what is your life like, and take it in 

I suppose that's asking too much eh!!

your son did that of his choice? wow, what led him to do that?

hi Shelley + Some one - nice to be welcomed.  

Shelley - any help or info I'm happy to give.  My son moved into supported living when he was 19 because he wanted to.  I'm a mine of info about that subject!  

Some - one -  exactly - had tooo much of people who don't get it

crystal12

hi crystal, nice to meet you, aye it was cool to be able to come on here and talk with people who get it

Hi Crystal I'm Shelley, mum to a 21 year old young man with ASD. He still lives with me, we haven't even considered him living alone with assistance because of the issues with depression and motivation. Nice to meet someone in similar circumstances, I have to say :) Maybe we can share experiences.