Told you so

I know. When your child is ill, of this very confusing illness, the ground feels like quicksand. You call out "help" and aren't that picky about who throws a lifeline or suggestion. But the advice you get is coming from all directions and it is all different: do this, don't do that, hurry up, slow down, read this, don't believe that.

Being frightened and out of your comfort zone, you grab at whatever solid rope you can get, right?

Please don't let anyone tell you what to do. It is vital to distinguish ideas from instructions. People may be talking to you, have lots of ideas, and care very much that you see things from their view, but you still have to decide for yourself.

It worries me when I hear a parent say "the therapist told us to..."** When in reality what your friends or me or your therapist say is usually not meant as an instruction it is an idea. We can't take responsibility for your decision and - this is the important part - very few people are expecting you to take what they are saying as a command that supersedes your authority as a parent.

I used to think I would get in trouble with our child's therapist if I didn't do what they suggested. I thought that meant I was going rogue and would no longer have their support and trust. I later realized that wasn't the case: the therapist expected me to make my own judgment and to use her suggestions as part of my decision-making. I had to learn to say "We're not comfortable with that. What about X?" or "No, that isn't going to work for us right now."

Of course there are therapists and other professionals who expect us to follow their advice and will be frustrated with us when we don't. There are clinicians who consider treatment decisions to be theirs to make and ours to follow.

I think it is good to ask. This is part of working with our clinical team: knowing what is a suggestion and what is an instruction. Our kids need to know this, too, because "My therapist TOLD you to" and "The doctors says you are not supposed to.." are gifts that last all week between appointments.

Know what your clinical team means when it tells you to do things, and whether they expect you to speak up if you disagree or have other plans. Know whether you are being coached, or instructed. Trusted or managed. Taught, or schooled.

We are the ones in the quicksand, and we are the ones who will live with the consequences.

**PS this also applies to advice from family, friends, Internet forums, and bloggers.


  1. I agree with you Laura. In theory. When I was under extreme stress and my daughter was at the height of her illness and inpatient, I considered pulling her out because I was so uncomfortable with some of the philosophy (the separation of parent/child and her subsequent refusal to speak to us for weeks). I was clearly told by her therapists there that, should we pull her, they would derecommend us to any other facility that we tried to take her too. I never really questioned whether this was even possible, the thought scared me so much.

    This just seems like emotional blackmail to a family in an already fragile state. Is this malpractice?

  2. True, when you are drowning, you will grab onto any old piece of driftwood. On the other hand, if those to whom you turn consistently won't give any instructions and say "it's up to you to work it out", it can feel like they are pushing you under even faster than you were managing on your own.

  3. I believe what both of you are describing is wrong and immoral if not illegal.

    Parents need to be given good information, trusted to make good choices, and supported in those choices with good support. You can't treat a child who is part of a family as if they are not. You can't leave a family without a clue, without an alternative, and without help!

  4. I think you make some excellent points. I just wish there was some sort of middle ground. My parents were advised to go into family therapy with me. They declined. They were advised to put me in the hospital, they opted not to. Instead, they opted for no treatment. I never got better. 20 years later, I think I never will.

  5. Anonymous,

    Your parents were wrong not to participate in your treatment and put you in the hospital and for failing to get you into treatment. Horribly wrong.

    You CAN get better, however. Is there anyone in your life - friend, family, co-worker, spiritual counselor, social worker - who I could help to get information and support for you?

  6. Anonymous!
    You can get better I promise. I suffered for 15 years but am on the track to full recovery now and will never ever go back. Please don't give up - there are so many resources out there, it takes time, effort, is painful, exhausting but I keep believing every day it will be worth it and others who have recovered (or know those who have like Laura) tell me the same. My parents declined family therapy too but sometimes, as the saying goes, "You save yourself or remain unsaved." I wish you luck,x

  7. Our AN suffering daughter's pediatrician and a psychiatrist(and 2 other therapists) insisted that we put out daughter into a lock down mental hospital for a second time.

    We refused because of the severe emotional damage that the first "incarceration" caused our daughter even though they did refeed her to a near "BMI" level. (she lost most all of that weight- plus more within months of being released.)

    We fiought the doctors and ended up spending thousands of dollars on lawyers and months fighting for our daughter's custody in court.

    And we do not regret a moment of the fight or a dollar of the money spent.

    Our daughter is in a fragile recovery now--almost weight stabilized at a healthy level---all done with the parental love, close involvement and help and that of a thoughtful and sensitive therapist who "hears" us and the needs of our individual family plus a modified Maudsley approach.

    It is still somwewhat difficult--- but we are so very glad that after what was the 2 years of hell, some good and some very bad advice that we had the sense in the third year to follow our own intuitive good sense and fight the system to save our daughter's life and that we fought the medical and legal "experts" to do what we knew was right.

    To this day she has nightmares of the first lock down facility that we were coerced to take her into.

    The decision and choices of who and what to follow are NOT easy ones. But at the point that we said NO=--we knew that we were making the correct choice.

    I wish you all well in those choices. One must try to get clear about what is the right thing for your family and for your child.

    Today our daughter is studying for the GED after being too sick to complete high school, is playing music again and making art and making friends and beginning to come out of her deep isolation...

    We are so very thankful for the strength that we were all able to muster and still do as we face one day at a time.

    FEAST and this website were my saving grace many many a day when I felt that I had hit bottom in being able to deal with it all.

    Thank you Laura, and all of the parents that have shared here.


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