Need help with my daughter

[peaches]

My daughter is 23 and was diagnosed with Asperger's a couple of years ago. She doesnt receive any help or support. Following a diagnosis a someone who described herself as a social worker from the adult mental health team came to see her a few times, but she didnt engage with her. I was hoping that she would help my daughter with life skills but she didnt, she attempted to get her rehoused, put all her energy into that, and it failed. Then she left her job and my daughter wasnt passed on to anyone else until I complained. Then she was passed on to an occupational therapist who she has seen a few times, but she fails to engage with her.

 

My daughter has made a lot of bad decisions in her life. She is a poor judge of personality. Her first relationship ended just over a year ago and she had 4 unplanned pregnancies which she concealed from everyone. I am bringing up the children. Her ex partner could be described at best as a leech. He has serious problems, and we dont have anything to do with him and she has a restraining order against him. She is now in another relationship, a man who she met through her first relationship. I cant say he is much of an improvement, because he is putting her into a difficult situation with money etc. He works part time, his wages go on his debts and basically he lives off her as far as I can see. My daughter has resisted all attempts for me to enter her flat and talk to her boyfriend. She hides her head in the sand when it comes to practical matters and problems.

 

Next week I am having a meeting with this occupational therapist as I said I wanted my daughter to have specialist help. All they can offer is counselling and we are meeting to discuss that. The last time Laurel was offered counselling she didnt engage, and the therapist says they are reluctant to commit the budget to pay for this if she doesnt really want it and is just agreeing to it because its what we want to hear. I think the counselling is from the Asperger's Support Service in Sheffield but Im not sure, I will be clarifying this next week.

 

Im not sure if its counselling she needs. I think she needs someone to teach her how to live her life day to day and how to watch out for men who just want to use her. She takes absolutely no notice of anything I say so its pointless me intervening and trying to point these things out, I have tried and tried. I have my hands full with her 4 children anyway. She wants to live independently of us, but she also seems to want a boyfriend to lean on too and chooses unsuitable people: or they choose her. She made a friend through her boyfriend who she says also has asperger's, but this friend lives some distance away and lives with her parents, Ive never met her. My daughter has never been capable of work, and spends all her day on her computer. Unless I fetch her, she doesnt come and see her children as she isnt able to negotiate the journey alone. She doesnt see the need to send me mothers day cards or birthday cards, and didnt send her kids easter eggs or anything. I have left her alone for a few weeks because when I asked for her help with the children following recent surgery, she gave it grudgingly, made it clear it was highly inconvenient, and couldnt wait to get away, so I took her home early despite being ill and needing the help.

 

I have absolutely no idea what to do. I wouldnt normally put this much info on a forum but I have absolutely no idea who to ask.

 

I know she has difficulties and I have painted a very negative picture, but to be honest there's no point in dressing it up and pretending the problems arent there. I would be interested to hear from other parents of Asperger's adults and also Adults with Asperger's with views on what to do, if anything.

[justine1]

Hi Peaches

I am sorry for what you going through and I dont have much advice but my story is similar to your daughters.I cant explain my behaviour as I think there was more than one trigger.Basically my parents got divorced when I was 12,this was good as they argued alot,but then my mother started dating almost immediatley and met someone and we had to relocate away from family(incl my dad)and friends,she remarried just two years after the divorce!!

At 14 I started drinking and living dangerousley,going out till 5am,walking alone in the dark etc.I was not with boys in that way just had friends.Then I met my husband at 16 and got preganant 4mths after meeting him,I had a miscarriage but got pregnant again age 17 and had my son.I stayed with my husband until two years ago,we are just two very different people,we have four boys together and I love them dearly but I was not ready to be a mum and sometimes feel like such a failure.

 

Even though I have cared for my kids from day one it is because my mother didnt give me that choice,I was made to work part time and go to school when I was having my eldest.I finished school and had to work up until I left my husband.Now I am due to go to Uni in Sept.I am grateful she was so tough and didnt understand why,she wouldnt even babysit as I was to learn my lesson,but I realised four years ago that she did try help and I didnt listen and I wouldnt have my kids and be a strong person if she took over.

 

I am not blaming you for your situation it just seems if she has not been given the chance to take responsibility for her children she never will and she is likely to go on having more kids.I think SS should be taking more action.At the end of the day if you were not caring for those kids they would be in foster care and if she chose not to see them they would likely be adopted.I think SS are taking advantage because you are there and willing to do this but I think if you get sick then what? I am sure if you put more pressure on them they will help,once she has sorted out her life then she can maybe start caring for her kids.In my experience I feel that because I have no choice but to care for my kids I take thata responsibilty and in turn I take better care of myself because my kids need me.Maybe she feels she has failed,and this may also be why she doesnt always make more effort to see them.

 

I think it will help for her to talk to someone,there may be other issues aside from the AS.Many NT make mistake of chosing the wrong partner and there is often a underlying problem which has not been adressed.I hope one day she will realise what she is missing out on and show you how she appreciates what you have done.

Sorry again I cant help and sorry for carrying on about my story,I do relaise your situation is very different but my mother has also felt at a loss with my behaviour but I am finally on the right track.

[Kathryn]

Hi Peaches,

 

I remember you posting about your daughter before. It's a tough situation and I have a lot of sympathy and admiration for you. My daughter was 21 and I don't know how I would cope in that kind of situation. Having said that I identify with your feeling of not knowing what to do and your comments about being ignored by your daughter. I find it really hard being the parent of a young adult - it's so hard to stand by and watch them make mistakes or just not take steps they should be taking, and to feel powerless to do anything about it. As a parent you reach the point where the adult services stop talking to you (I think you're lucky to have the OT still prepared to discuss your daughter with you!) and speaking from experience,even if you do manage to pave the way to some kind of official help, if the young person won't accept or engage with it, there's not much you can do, is there.

 

From what you say, it does sound as though your daughter could benefit from some help with life skills, managing money, etc. If she won't take your advice, is there another relative or family friend who might be able to gain her trust? Often the parent is the last person the child wants to take advice from - all part of cutting looose and being independent.

 

I think the single most useful thing anyone could do is to persuade her to embark on long term contraception - that at least will help to ensure that her future mistakes don't have such an impact on other people. Otherwise I'm not sure there's much you can do to prevent her from living her life as she chooses to live it.

 

Sorry, I wish I could be more help. Maybe you should embrace the counselling offered - for yourself - because so much responsibility and worry is falling on your shoulders and you need to look after yourself and get support too. <'>

 

K x

[peaches]

Hi Peaches

I am sorry for what you going through and I dont have much advice but my story is similar to your daughters.I cant explain my behaviour as I think there was more than one trigger.Basically my parents got divorced when I was 12,this was good as they argued alot,but then my mother started dating almost immediatley and met someone and we had to relocate away from family(incl my dad)and friends,she remarried just two years after the divorce!!

At 14 I started drinking and living dangerousley,going out till 5am,walking alone in the dark etc.I was not with boys in that way just had friends.Then I met my husband at 16 and got preganant 4mths after meeting him,I had a miscarriage but got pregnant again age 17 and had my son.I stayed with my husband until two years ago,we are just two very different people,we have four boys together and I love them dearly but I was not ready to be a mum and sometimes feel like such a failure.

 

Even though I have cared for my kids from day one it is because my mother didnt give me that choice,I was made to work part time and go to school when I was having my eldest.I finished school and had to work up until I left my husband.Now I am due to go to Uni in Sept.I am grateful she was so tough and didnt understand why,she wouldnt even babysit as I was to learn my lesson,but I realised four years ago that she did try help and I didnt listen and I wouldnt have my kids and be a strong person if she took over.

 

I am not blaming you for your situation it just seems if she has not been given the chance to take responsibility for her children she never will and she is likely to go on having more kids.I think SS should be taking more action.At the end of the day if you were not caring for those kids they would be in foster care and if she chose not to see them they would likely be adopted.I think SS are taking advantage because you are there and willing to do this but I think if you get sick then what? I am sure if you put more pressure on them they will help,once she has sorted out her life then she can maybe start caring for her kids.In my experience I feel that because I have no choice but to care for my kids I take thata responsibilty and in turn I take better care of myself because my kids need me.Maybe she feels she has failed,and this may also be why she doesnt always make more effort to see them.

 

I think it will help for her to talk to someone,there may be other issues aside from the AS.Many NT make mistake of chosing the wrong partner and there is often a underlying problem which has not been adressed.I hope one day she will realise what she is missing out on and show you how she appreciates what you have done.

Sorry again I cant help and sorry for carrying on about my story,I do relaise your situation is very different but my mother has also felt at a loss with my behaviour but I am finally on the right track.

 

I didnt take over BTW, the kids were taken from her, SS wanted to have them adopted, I wanted them to stay in the family, she didnt have a choice. The kids are with me on special guardianship orders until their majority. She also doesnt seem to be bothered about not seeing them and doesnt make any effort to get in touch.

 

Aside from that, thanks, your reply was interesting. I should have been stricter with her, but I wasnt. I wonder if now is the time for tough love then? How do you think she would feel if I just backed off and left her to it and waited for her to get in touch, i.e. didnt check on her chase her up etc.

Edited April 17, 2010 by peaches

[peaches]

Hi Peaches,

 

I remember you posting about your daughter before. It's a tough situation and I have a lot of sympathy and admiration for you. My daughter was 21 and I don't know how I would cope in that kind of situation. Having said that I identify with your feeling of not knowing what to do and your comments about being ignored by your daughter. I find it really hard being the parent of a young adult - it's so hard to stand by and watch them make mistakes or just not take steps they should be taking, and to feel powerless to do anything about it. As a parent you reach the point where the adult services stop talking to you (I think you're lucky to have the OT still prepared to discuss your daughter with you!) and speaking from experience,even if you do manage to pave the way to some kind of official help, if the young person won't accept or engage with it, there's not much you can do, is there.

 

From what you say, it does sound as though your daughter could benefit from some help with life skills, managing money, etc. If she won't take your advice, is there another relative or family friend who might be able to gain her trust? Often the parent is the last person the child wants to take advice from - all part of cutting looose and being independent.

 

I think the single most useful thing anyone could do is to persuade her to embark on long term contraception - that at least will help to ensure that her future mistakes don't have such an impact on other people. Otherwise I'm not sure there's much you can do to prevent her from living her life as she chooses to live it.

 

Sorry, I wish I could be more help. Maybe you should embrace the counselling offered - for yourself - because so much responsibility and worry is falling on your shoulders and you need to look after yourself and get support too. <'>

 

K x

The contraception is covered. I saw the hospital consultant when she was in with #4 and insisted she had the implant. I wouldnt mind the counselling, but its not being offered to me!

 

I will just have to reiterate my demands for her to be taught life skills. Thanks

[peaches]

Has anyone had a positive experience of being on the receiving end of help for Asperger's adults? If so, where and how do you get it???????

[justine1]

I didnt take over BTW, the kids were taken from her, SS wanted to have them adopted, I wanted them to stay in the family, she didnt have a choice. She also doesnt seem to be bothered about not seeing them and doesnt make any effort to get in touch.

 

Aside from that, thanks, your reply was interesting. I should have been stricter with her, but I wasnt. I wonder if now is the time for tough love then? How do you think she would feel if I just backed off and left her to it and waited for her to get in touch, i.e. didnt check on her chase her up etc.

Hi

Yes, I gathered that SS did remove them and that is why I said you are clearly not to blame,I just think that SS should have done more to help her get her life on track so that she can eventually get her children back.My only observation was based on the fact she isnt making much effort to see her children.I do sympathise in that she has AS and this may make it difficult but I wonder if you did not take the kids to her etc would she even bother?

 

At the end of the day she is your daughter and I can see you are doing everything you can for her,but let me ask you if it was someone else in your shoes what advice would you give them?I think there is only so much you can do as a parent.AS or not I dont think its right to bring children into the world if she cant look after them,Kathryn is right the GP's should be offering some sort of long term birth control.

 

As I said with my story it has taken me a long time to grow up,I can say I only truelly accepted responsibilty when I left my husband two years ago at the age of 25.I didnt know how to budget,I hardly ever brought groceries because my mother did that for me until I was 16 then my husband did so thereafter.Even though I worked hard and took good care of my kids I didnt feel like an adult,now I do.Prehaps your daughter will change,but I agree she needs more support unfortunatley I dont know where that will come from,but there must be somewhere where you can turn.

 

I really admire you there arent many parents who are so supportive <'>

[justine1]

I also wanted to add,is it possible she could be suffering from depression or even PND? I think she may be more likely to get this because of her AS,I have heard of people with PND suffering for 10years without help.I do think whatever the problem is counselling is a good step forward and at least worth a shot,it may be possible to get furthur help after her counselling.

[trekster]

Is she using any contraception to prevent her from having any unplanned pregnancies again? i found the depot injection

works for me and is needed once every 12 weeks. My periods are occasional and im highly unlikely to get pregnant.

 

The rebellious behaviour in me only improved after i went gluten and dairy free. i also took out benzoates which for me caused

more problems than the gluten and milk put together.

 

There are some books on "aspergers and girls" and "aspergers and adolescence" personally i feel puberty lasts longer than in NTs

which could also be a factor.

 

Good luck.

[trekster]

I didnt take over BTW, the kids were taken from her, SS wanted to have them adopted, I wanted them to stay in the family, she didn't have a choice. The kids are with me on special guardianship orders until their majority. She also doesn't seem to be bothered about not seeing them and doesn't make any effort to get in touch.

 

Aside from that, thanks, your reply was interesting. I should have been stricter with her, but I wasn't. I wonder if now is the time for tough love then? How do you think she would feel if I just backed off and left her to it and waited for her to get in touch, i.e. didn't check on her chase her up etc.

 

i don't think not enough discipline was anything to do with it since i reacted the same way to lots of discipline. Backing off and allowing her to make her own mistakes might be the answer. Also getting support for yourself as a parent/carer of autistics.

[trekster]

Has anyone had a positive experience of being on the receiving end of help for Asperger's adults? If so, where and how do you get it???????

 

My gran being an elderly carer got a carers assessment that enabled her to have home help for me.

[peaches]

I also wanted to add,is it possible she could be suffering from depression or even PND? I think she may be more likely to get this because of her AS,I have heard of people with PND suffering for 10years without help.I do think whatever the problem is counselling is a good step forward and at least worth a shot,it may be possible to get furthur help after her counselling.

 

This is what a lot of people have suggested and she is very emphatic that she is not depressed. Also two psychologists and a psychiatrist both failed to find any evidence of depression. I have suffered depression myself including PND and she doesnt strike me as being depressed, but I know it can take many forms I realise. One psychologist did think she may have a bit of social phobia brought about by her difficulty relating to others, but this wasnt the consultant who diagnosed her asperger's, it was one that assessed her for a psychological report for court.

 

I think I am going to say in front of the occupational therapist and my daughter next week that I feel I have done all I can for her, tell them how much under pressure I feel just caring for the kids and dont feel I can do any more. Point out it doesnt mean she isnt welcome or that I dont love her, I just physically dont have the resources to help her. I would never turn her away in an emergency, but I think I need to let her get on with things herself and realise that she does need help. She needs to come to this conclusion herself. What she basically wants is to live independently in her own flats, on benefits etc but if anything needs sorting out, like DLA, ESA or housing benefit, she wants ME to do it for her not an outside agency. I have to let her realise that its not a rejection: I just simply cant do it any more.

[justine1]

This is what a lot of people have suggested and she is very emphatic that she is not depressed. Also two psychologists and a psychiatrist both failed to find any evidence of depression. I have suffered depression myself including PND and she doesnt strike me as being depressed, but I know it can take many forms I realise. One psychologist did think she may have a bit of social phobia brought about by her difficulty relating to others, but this wasnt the consultant who diagnosed her asperger's, it was one that assessed her for a psychological report for court.

 

I think I am going to say in front of the occupational therapist and my daughter next week that I feel I have done all I can for her, tell them how much under pressure I feel just caring for the kids and dont feel I can do any more. Point out it doesnt mean she isnt welcome or that I dont love her, I just physically dont have the resources to help her. I would never turn her away in an emergency, but I think I need to let her get on with things herself and realise that she does need help. She needs to come to this conclusion herself. What she basically wants is to live independently in her own flats, on benefits etc but if anything needs sorting out, like DLA, ESA or housing benefit, she wants ME to do it for her not an outside agency. I have to let her realise that its not a rejection: I just simply cant do it any more.

I think this is a good idea Peaches.It will be hard but I think that is the best thing you can do.I think that because you have taken on her children your focus and priority has to be on them and not her-I know it seems harsh but it is down to her at the end of it.

 

If she decides not to see those children any more,they will know you did everything in your power to help the situation and they wont blame you.In my opinion its best not to have a parent then to have one that isnt making an effort.My ex is exactly the same,I give him money to come see his own children because he says he cant afford to and blames me cause I moved to another county.I do feel responsible and cant deny the kids their dad but again there is only so much I can do,if he doesnt come there is nothing furthur I can do.

 

I do hope she gets help and I hope you can also get some help,it is such a strain on you <'>

[cmuir]

Hi Peaches

 

It's a very tough situation you're in and whilst my son is still a child, I empathise with facing everyday dilemas of knowing how much to try and educate and how much to stand back and let him learn from life basically. No one could say with sincerity that you haven't been there for your daughter as you're looking after her children as well as everything else. This may sound really harsh, but it might just be that your daughter has to deal with things and the only way to do that is for her to know that you're not there everytime to pick up the pieces (obviously, there are certain situations where you have to intervene). In life we all make mistakes (and some whoppers too!) – often it's a while afterwards that you can look back and chalk it down to experience. I know things can be very different with someone with an ASD as often extreme anxiety, poor social skills/communication, etc comes into it. It just might be the rocket that healthcare and SS professionals need too as you have to stay strong. Staying strong simply isn't sustainable for any length of time whilst facing immense pressure on a daily basis over a prolonged period of time. It's not just your daughter that you're looking after but your grandchildren too. Very best of luck with the appointment.

 

Caroline.

[peaches]

Thank you again. I am hoping this will work.

[peaches]

Well we did the meeting today and it went differently to what I expected, she surprised me.

 

In the car on the way there I am pleased to say that she admitted she was getting fed up of B/F but not sure what to do. She has seen him for what he is and admits that he treats her like a cross betweeen his mum and a cash machine. This being the case, I didnt launch into my speech.

 

At the meeting she disclosed to the therapist about her dissatisfaction with B/F, was happy to go ahead with counselling, and actually said she would attend an asperger's group. She also agreed to explore courses/employment by going to see Remploy with the therapist.

 

So it all went very well. Thank goodness. I am starting to think that ignoring her for the past few weeks has actually helped. When she has been here for a couple of days though she will get fed up of being around me, her dad and the kids and suddenly the B/F will seem attractive again.

[trekster]

Well we did the meeting today and it went differently to what I expected, she surprised me.

 

In the car on the way there I am pleased to say that she admitted she was getting fed up of B/F but not sure what to do. She has seen him for what he is and admits that he treats her like a cross between his mum and a cash machine. This being the case, I didnt launch into my speech.

 

At the meeting she disclosed to the therapist about her dissatisfaction with B/F, was happy to go ahead with counselling, and actually said she would attend an asperger's group. She also agreed to explore courses/employment by going to see Remploy with the therapist.

 

So it all went very well. Thank goodness. I am starting to think that ignoring her for the past few weeks has actually helped. When she has been here for a couple of days though she will get fed up of being around me, her dad and the kids and suddenly the B/F will seem attractive again.

 

Thats great news and good luck. i enjoyed my asperger social groups and met lots of better friends than i had at school/college (one exception being my 1st asperger mate who i met at my local college).