dont' even know what to title this

[Jena]

marg

ok so tell me how difficult child sees me controlling it when we have zero contact and she hasnt' seen me in 3 4 days now? i dont'remember the numbers but it's been a bit now. she knows from nothing.

also how is her swallowing problem solved when it takes her still 3 to 5 hours to complete? she has never sat in that rm and downed her food like the moron said even when he dangles visiting hours infront of her?

i thikn their clueless and grasping at straws right now. they have left an eleven year old with no coping skills right now besides her mind and a pad and a pen. which she has stopped writing since she got there. ipod's gone, easy child is gone, visiting hours are gone, pyschotherapy groups aren't happening for her they won't allow her till she eats, and no parents to see.

to me totally harsh and their totally lost with-her.

 

[Marguerite]

I just re-read what I wrote, and I realise it was confusing. I meant IF the swallowing problem was resolved now, how could you (or anyone) be sure, because of the other stuff that seems to be in there now? It's like, IF she was wearing a bright red dress, how would you ever know, if the room is in pitch darkness?

As for difficult child perceiving you to be in control, (I should have said 'perceiving' and not 'seeing') it's very much a matter of her perception, which from all you have said, seems to be very much what she WANTS to see (or perceive). She's been calling you (maybe not in the last few days - you haven't said - bet definitely before) and then you come in an sort out the problems. Don't get me wrong, I would have done what you have done too, especially given some of the stuff that was happening, with her anxiety and other issues apparently being totally ignored by staff especially in the early stages. You charged in one night in your pyjamas, didn't you? Your aim was to make it clear to staff, that you are on the job. Trouble is, difficult child also knew you were on the job (which shouldn't have been a problem, you would think - but if the doctor is right, then it looks like BIG problem). OK, she's a kid, you want her to know you haven't abandoned her. But there's a lot going on in that little head, and I don't think even the doctors have worked it out yet. And I'm thinking, it's almost a Catch 22 situation you've found yourself in.

I feel I need to keep reinforcing - I am not critical of anything you have done. I would have done the same, I am sure of it. And as for your posting all the time at the moment - again, you need to, things are tough at the moment and I am glad you're keeping us up to date, I'm worried about you all. Go ahead, you are not wearing out your friendships here.

As for whether they are being overly harsh with her - I'm at a loss there myself. It does sound harsh, but do they get results that you can confirm? What feedback have you had from other parents? True, your difficult child's problems are subtly different. Or so they have seemed. I'm sorry, I can't advise you to pull her out, and I just don't know enough to say, leave her there. Not for certain. It's just caution at the moment, I guess, that has me siding with "leave it a while longer". That, and lack of real alternatives.

You're the one on the spot. But husband has also been on the spot, and he seems to have been telling you to give them more time. Or is he not on the spot enough, do you think, to have a good enough idea? If you think he doesn't get it, then bear in mind - he gets it better than I can, he knows difficult child personally a lot better than I do, and he has at least been up there and seen it for himself.

The other thing you have to consider, is what else can you do right now? What choices do you have? Again, you may have some ideas up your sleeve that I might not know about, especially given the way your mind has undoubtedly been running on overdrive with your concerns; it does tend to produce ideas out of nowhere sometimes, when you are desperate for any options to materialise.

Something I've suggested before - write a list of pros and cons, of the various choices. Include the ridiculous choices (such as getting back with exH - give yourself a laugh). It does help give you some perspective! But putting it in writing can actually help you really examine everything, and stop those wheels spinning.

When the doctor suggested family therapy with exH and you then said, "You mean, with the guy who tried to beat me up wile I had baby difficult child in my arms?" did the doctor keep insisting that family therapy with exH was still a good idea? Or did he seem to back down, even a bit? If he kept insisting just as hard, then I think the doctor has some idea in mind that he hasn't got across well to you. But if he backed off, even a bit, then yes, I think he's clutching at straws.

You're not crazy. Maybe everyone else is.

Marg

 

[susiestar]

Jen, do you still have that list of websites I sent? It might be helpful to at least CALL some of these places. in my opinion your daughter does not have an eating disorder. She has a FEEDING disorder. Their approach is one typically used with anorexia nervosa and bulimia, but it is bizarre to apply it to a phobia. She may force herself to eat the stuff after they say she has lost visitation - by brutally forcing herself to do it. This kind of force will make it HARDER to choose to eat, esp if they take away visitation for the next day. If she refuses at bfast on Mon, she loses visits on Tues. Does she lose visits on Wed if she refuses lunch? How many weeks will it take her to become able to see you if she refuses to eat for two weeks?

The whole approach makes NO sense. She is in a psychiatric hospital type setting for a mental illness, but she can ONLY access the majority of the therapies if she conquers her fear on her own and eats? Gee, so the kids we warrior moms drag to therapists should anly take then when they have had good, healthy behavior and not take then when their behavior is off or they have a mental/emotional problem? I don't think anyone would suggest that, do you??? So why is it that it is an appropriate way to control access to therapy groups for a child with a choking phobia?

It sure would be interesting to know what they would say in answer if you were to ask that. in my opinion the therapy groups are NOT optional and you need to make them back OFF the solid foods and continue the liquids.

PLEASE call the place in that pm that handles feeding disorders. They may deal with mostly younger children, but they seemed to have more of a handle of what this is, from the little bit I read about.

 

[Marcie Mac]

I have been following your story Jen - I have no experience with eating disorders only a true swallowing disorder (not a phobia) with SO.

But I know how hard it is to trust in what doctors do that seem to go against the grain in what you feel in your heart. Having said that, I would so strongly suggest that you get some medication for yourself to ease your own anxiety about this whole process so you can calmly think things thru and put your concerns down in writing and discuss them calmly with the doctors. I know you feel you can "do this on your own" - been there done that and hated to have to medicate myself in the past to deal with various issues - I am a strong person and felt I didn't need those medications. In hindsight I was wong for that belief.

I can't say whether the doctors approach is right or wrong, whats good for one difficult child isn't good for another so am not going to do the armchair quarterback. I can "see" that you are totally frantic over this - I would be myself - especially if there is no success, the mention of "feeding tubes" would put me totally around the bend. But you seriously have to get some control over you cause this zinging up there and back, not sleeping, crying, going over this over and over and over in your mind and now dealing with an X isn't good for you my dear.

Hugs
Marcie

 

[AnnieO]

I'm sending lots of hugs. I have zero experience with this but that out-of-control feeling, I know all too well.

One thing I either didn't see... Or... Who knows. She knows the docs have contact with you, and in the past, you've been the one trying to help her. So, therefore, you must be telling them what to do. Not.

I do think 90 minutes is not enough time. And liquids to start are good, add in some soft stuff. Will she eat thin oatmeal or mashed potatoes? Pudding, Jello? They're easy to swallow, and that's what I go for when the kids have sore throats. I don't know a lot, just guessing.

More hugs. And no, you're not going crazy - and post all you want! We're here for that reason.

 

[DammitJanet]

The one thing I will tell you from vast previous experience, and I think others here who have had kids as young or younger than yours in placements, is that you cannot allow yourself to do the swoop and save when you are this emotional. I dont think keeping laptops or Ipods or any other electronic devices away from kids in treatment facilities is unusual. Parents usually have very set visitation days and it is not unusual for them to be revoked if certain goals arent met. In many places parents arent allowed to see the child for the first 30 days.

I agree with some of the others that you really may need to revisit that script that the doctor gave you to get you through this time. It isnt a defect in character if you need some medication to get through this time.

 

[Josie]

I agree with you considering medications to help you think more clearly.

Based on my experience with Obsessive Compulsive Disorder (OCD) and even common sense, I don't like their approach. It doesn't make sense to miss therapy because she isn't eating when that is why she is there in the first place. She is there to get therapy so she can eat. From an Obsessive Compulsive Disorder (OCD) perspective, it also doesn't make much sense to have group therapy unless everyone is talking about their exposures, what feelings they are having around those, and how they are handling it. In an Obsessive Compulsive Disorder (OCD) scenario, she would have a therapist with her 1 on 1 while she is eating and they would work with her on seeing that she could handle her anxiety even if she did eat something. They would start small and praise her for small steps instead of punishing her for not meeting big steps. They would get her to agree to take small steps that she could handle and work up.

I realize they are not treating her for Obsessive Compulsive Disorder (OCD) so maybe that is all irrelevant. Maybe their treatment does work for kids with food phobias. I am in no position to know.

You are the best person to know the situation and know what is right for your daughter. And you do have to consider what other options you have.

I agree with Smallworld about giving her the right medications to lower her anxiety. Whether you will be able to convince them they are not doing that right now is another problem.