Aspergers, EDs, friendships, people, and I'm lost

Allegra

CHRISSYG wrote: »

my 13 yr old is about to be diagnosed with aspergers/asd and food was a huge daily problem but we have decided not to make it a battle we allow her to eat when she wants and within reason what she wants [not malteesers all day !!] and although its taken over a year she is comming around to eat foods that she previously would reject.
get her to make a list of the foods she will eat and for a while let her have them, once the battle is taken away the results are amazing.

This will probably not sound quite as ringing an endorsement as it would have done without knowing the eating etc. issues that my DD is facing atm, but that is exactly what we used to do, Chrissy, and it worked for years Also, continuosly offering the previously rejected foods - small amounts, no pressure to eat them, often on a separate plate so they would not pollute the rest of the food - all helped. So for what it's worth, and despite of where we are at now, I do think that you are doing absolutely the right thing

Lara44

Allegra wrote: »

And thanks for confirming that not taking the laptop away is not a disastrous course of action. She will not let me install parental controls on it, which is why I am continuing to concentrate on a) trying to convince her that staying off PrettyThin would be a good thing for her, and b) keeping her busy and away from the laptop as much as I possibly can.

I really sympathise with you OP, it sounds like a very difficult situation. But I do think you should be blocking the pro-ana sites. Even if installing parental controls is a difficult issue it sounds to me like a battle worth fighting. As you rightly observe she is feeling the social benefit of the support on these sites, and it is a good strategy to find something to replace this with first. Perhaps this change could be slowly managed over time as you try to shift her online habits first rather than just cutting off access to the pro-ana sites. But I think ultimately this material is harming her and should be removed from your lives permanently in as sensitive a way as possible.

Allegra

Lara44 wrote: »

I really sympathise with you OP, it sounds like a very difficult situation. But I do think you should be blocking the pro-ana sites. Even if installing parental controls is a difficult issue it sounds to me like a battle worth fighting. As you rightly observe she is feeling the social benefit of the support on these sites, and it is a good strategy to find something to replace this with first. Perhaps this change could be slowly managed over time as you try to shift her online habits first rather than just cutting off access to the pro-ana sites. But I think ultimately this material is harming her and should be removed from your lives permanently in as sensitive a way as possible.

I think you are right. It's trying to do it without making the situation worse in the short run that I struggle with Obviously, the longer I leave it the worse things will get. The situation, to my mind, has clear parallels with say, heroin addiction. In the first instance, once it becomes apparent that someone is a user, you will try rehab - and psychological reprogramming that makes them WANT to stop. If they do not cooperate, then going cold turkey might be the only option.

I really would like to avoid the cold turkey approach, simply because I am not at all sure that I can deal with the short-term consequences. Besides, we all know that banning a teen from something just makes it all that more glamorous and appealing.... But if I have no other choice left, I will have to go for it and pray that I am stronger than I think I am.

So far, we have managed three days is a row where she has had no unsupervised internet access - this through combination of just sitting and chatting to her, getting her to re-read Harry Potter books (after having taken her to the cinema to see the seventh film), a bit of half-hearted helping out with the chores, and just sitting with her surfing emo clothing websites together, looking for nice clothes to save up for together

Keep your fingers crossed for a fourth day today for me, will you ?

weezl74

Allegra wrote: »

Incidentally, Weezlie, I meant to ask - this claim that DD's best friend's mum phoned a counselor about the email that DD sent and was told that this sounds all made up and was probably culled from a website where you just fill in the blanks - does that sound to you like something that could ever happen ? This email was an 8 page word document containg extracts from DD's diary over the few weeks preceding the email, and commentary in between the extracts. I read it, and have never doubted for a moment that it was anything but DD's own work. And I just can't envisage a situation where someone could even read out this lengthy tome over the phone, and even if they did, that a responsible counselor would, based on that, say that this child is just attention seeking and to ignore it.

Because, what DD needs now more than anything, I think, is to hear that no mental health professional had read her deepest darkest thoughts and branded her a fake. I think even the friendship issue takes a back seat to that. And I can not really phone this woman and ask outright, because if this was something that was made up by either her daughter or mine... Well, let's just say that I am not doing it, and leave it at that !

Sadly there are good and bad counsellors out there, and so while I can say hand on heart that no counsellor SHOULD have responded in that way, we infuriatingly can't say that one did not .

The only sense I can make of this troubling interchange is that the counsellor was being very 'blank canvass' and simply reflecting back what feeling she heard, but not commenting on the facts. She may have said 'you feel it sounds fake' and been heard as saying 'I agree it is fake'. In working as a counsellor, we very often find this happening, we simply reflect back what the client is saying they feel or want to do, and they hear us saying it as if this is our view. At best it is a way of a client finding the strength to act on something they have needed to for a long time: 'you know last week you said I should write that letter to my mum...' at worst it can sound like we colluded with something with which to bash one's nearest and dearest: 'I think you are a lousy husband, and my counsellor agrees!'

What I'm trying to say is a good counsellor doesn't put their judgement or opinion on the situation, and even if (God forbid) a letter was read out to them, I would be extremely surprised to think of anyone attempting to give any kind of diagnosis or judgement based on that.

Further, a counsellor (unless they are dually trained as a psychiatrist/doctor) is not the person who would be diagnosing an eating disorder anyway. We would usually see ourselves as attempting to help once a GP had categorised the problem in that way.

I am very struck by the part in bold. I wish I could say certainly that this didn't happen. As I do see you are saying this is what DD needs. Would it help her if a different professional took her seriously? Would it help her to know that it is never ideal for a health professional to make a judgement 3rd hand without meeting and interracting with the individual?

xx

System

op is there a family member she trusts 100% because from my own experience im labelled as a nagging mum even before ive opened my mouth but her cousin a year younger is the font of all wisdom and a great little alllie !

Hippeechiq

Allegra Firstly - you are doing a superb job, so please, don't be so hard on yourself.

Cut yourself some slack about feeling unable to cope with the fall-out of going "cold turkey" with regard to your daughters computer access because you are the one that's holding it all together, and if you go under, your DDs situation would become a lot worse.

I know exactly what you mean. I constantly have similar situations with my own DD, but - and please bear this in mind when a GP or AS "expert" gives you advice - what "should" be done according the the courses they've studied, and what the text books tell them - is not always doable/achievable in the "real world" when coping with the demands of a mental illness 24/7

The "experts" don't live with it day in, day out, and with the greatest respect, cannot possibly understand what you and your DD go through on a daily basis. We do the best we can, and that's all any of us can do

If you don't feel you can cope with the fallout (and you know how you feel) then I think you just have to approach the problem from the next best angle, which you are doing.

I hold my hands up and admit that I have no knowledge of AS but I have a daughter who suffers from the mental illness Borderline Personality Disorder (BPD), which is little known, and even less understood.

The illness has completely consumed her in the last 2 years. She is no longer capable of work, and much, much worse (from her point of view) has lost all her friends.

The knock-on effect of that has been devastating, and she went through several months of self harming, so I would agree with your instinct to phone your DDs friends Mother offering thanks and support, but at the same time mentioning that your DD has AS. The result may well be that the Mother has a chat with your DDs friend, or maybe you could even ask her to have a word, explaining how distraught your daughter is about losing her daughter's friendship?

Personally, I don't, and never have thought, that age has anything to do with how important or devastating an event is in someone's life. It's all relevant at the time, and is no less important because you're 13.

One of the hardest things from my daughters point of view, has always been peoples lack of understanding, and feeling "like a freak" (her words). Earlier this year she discovered a forum called BPD World, set up by a BPD sufferer, and I cannot tell you the difference this has made to her.

A group of people who she doesn't have to explain herself too, who know, that having something happen in her day which might seem totally insignificant to other people, is enough to make her wish she were dead, or self harm. A group of people who are always there to share whatever the days experience has been.

We have now had a run of around 4-5 months without a self harming incident, and although some of that is due to her meds and the therapy she attends, I don't underestimate how important this forum is to her well being.

With this in mind, I think an AS forum would be greatly beneficial to your daughter. You could ask your GP if he knows of any.

I had a quick look on the net, and found a couple of AS sufferers recommending THIS SITE No doubt you'll want to check the site out to see if it's suitable for a 13 year old, but I'm sure there must be something on the net for her if it isn't.

Finally, on the food front. My daughter has major food issues, and would also go days without eating if I didn't push her, and what is working for us at the moment is Slimfast.

I know it's far from ideal, but she has 2 shakes a day and then sometimes, but not always, she will have a baked potato or pasta for tea. Again not ideal, but it's important that her body doesn't forget how to chew and digest food, and it's an improvement on a few months back where she just wouldn't eat at all, apart from the odd banana or biscuit.

The shakes are supposed to have the nutrional value of 2 meals, and I'm at least managing to get a pint of milk a day into her too. She has Rich Chocolate Flavour, which, if the suggestion is an option for you, may appeal to your daughter too. Just a thought

Sorry for the long post by the way

I hope, at the very least, your DDs friendship is soon back on track, and that you get some useful support from your GP. If you don't, shout and make a fuss until you do, as sadly, it's only he who shouts loudest who is heard x

Loopy_Girl

Allegra wrote: »

She will not let me install parental controls on it,

EH?! AS or not, surely you are the parent?

What is coming across loud and clear to me (granted I don't have a child with AS although I am a parent) is that you tip toe round her walking on egg shells and whatever she wants, she gets - all for a quiet life?

I understand re the keeping of laptop but she will not let you install software which could save her life - who is doing the control in the house?

Edit - I read further about your worry about the 'fallout' and I do get that...but all parents have to go through that whether their children have a condition or not. These sites can kill - you putting controls on is possibly the one thing that will save her. You cannot be round her 24/7 and if she is determined, she will find a way

Loopy_Girl

Hippeechiq wrote: »

Finally, on the food front. My daughter has major food issues, and would also go days without eating if I didn't push her, and what is working for us at the moment is Slimfast.

Just a suggestion buit would Complan not be a better option than Slimfast if she will swap? As it's full of calories and likely to build her up rather than Slimfast which will obviously make her lose weight and I am guessing this would just add to the problems.

Re the BPD...there are several people on here who have it. Maybe if you start your own thread you may get people answering even if it's just by PM...support for you maybe? and possible her?

Savvy_Sue

Plans_all_plans wrote: »

It doesn't mean you're a cr*p parent Allegra! You are doing your best in a difficult situation.

agree wholeheartedly: say after me: I am doing a good job ... because your are! it's a nightmare, you're getting through it as best you can.

Allegra wrote: »

Personally, I think that teen age should be banned Nothing in life should be so ruddy traumatic, ever. A bad design fault, if you ask me.....

:rotfl: so true ...

artybear

Hi allegra,

It's a really hard situation and I think you are handling it amazingly. I have no experience of someone with AS or eating disorders but can remember being a teenage girl. Its a rubbishy time and I feel for your DD.

Maybe you could have some house rules which you both agree on? In return for her not visiting those sites and you trusting her not to, she could receive something she wants. It is bribery pure and simple but maybe you could present it to her as two adults making an agreement so you are on an equal footing?

But like I said I don't really know much about this so ignore me if you think it wouldnt work.

Have some hugs tooxxxxx