How can parents help kids who don’t want help?

Corinna West
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Let’s not keep missing the main point of the SAMHSA stakeholder discussion We have to LISTEN to people that have opposite points of view as us.

Monday, March 5, is the last day that SAMHSA is gathering feedback for their stakeholder forum.   I’d love your vote here for the idea that mental health struggles are temporary. My thought is that sometimes parents have to step back in order not to make the temporary stuggle into a permanent problem. This is not giving up their kid’s recovery, but simply giving up on the parent’s ability to help their kid move towards recovery at that time. 

Gwen Broz at Critical Mass
My mom and her husband catch a moment at the Kansas City Critical Mass bike ride. At one point she had to leave me to make my own choices.

The two biggest sources of suggestions on the current SAMHSA stakeholder forum come from the recovery movement and forced med people. In a recent blog post on my business blog, I talked about how forced medication doesn’t really stand up to a review of the evidence, but people are still very compelled by the theory. The problem is, what do we tell parents who have adult children who aren’t willing to work on recovery? In my view, the most important ways to get through extreme emotional states are to talk to someone who’s done it, and practice good self-care like getting enough decent food, sleep, housing, and avoiding illicit substances. Medications can help some people on a short term basis, but they should be able to make a truly informed choice before starting medication.

The same old conversation over and over:

So when the recovery movement says: You get past emotional distress by talking to peers and taking care of yourself.

And the forced med people say: Yes, but my son/daughter is not willing to do this, and I hate getting hurt physically by them or seeing them homeless/in jail/on drugs/victimized/violent. What can I do for my kid?

And the recovery movement says: That may be true, but forcing meds on them causes more trauma which makes the problem worse and it’s a civil rights violation and the meds don’t really work anyway.

Then WE haven’t answered their question, “What can I do for my kid?” So I’ve interviewed several parents to ask, “What should have been done, ideally? Or what could we do?”

What parents who have found the recovery movement have said:

Suzanne Beachy, a TEDx fellow, a parent, and an advocate, has made the point numerous times that finding the recovery movement is like a needle in a haystack, and we need better public relations.

She says,

Where I was? Mostly confused. While Jake was going through his struggle, I expended an awful lot of time and energy simply trying to figure out the truth of what was going on with him. At the Creating Connections conference I likened the experience to being out in a small sailboat at dusk, when the wind suddenly picks up, the boat turtles, and darkness falls.  At one point in Jake’s saga, we were faced with a choice of jail time or an insanity plea. We went with jail time. Both then and now, there is no good solution to the problem.

To answer you earlier question, for Jake, I think an ideal situation would have been for him to have found a group of people who had fully recovered from psychosis. Everyone I know who has fully recovered from a grim mental diagnosis had people around them who believed they could be whole and well again. Unfortunately, I did not find Recovery Inc. until after Jake died. And the PEER Center in Columbus did not even exist until the year before Jake died. I did not find out about it until the year AFTER he died, from a PEER place in a neighboring county. Peer groups should be on college campuses. Have you seen the stats for the number of college kids on psych meds? And suicide is the number 2(?) cause of death for young people. So sad. Bring in the peer!

Diane Engster, who is a lawyer, a parent, and a supporter of all options being on the table, says,

First, parents need to realize that its hard for adult children to take direction from their parents especially if it seems critical. I would start small without globalizing about recovery. Identify WITH the person a strength or gift they have however small and validate, validate, validate when they can do it. With my husband’s daughter, it was just listening together her favorite composition by Bach on my iphone.

Susan Kingsley Smith, a parent, an expert on emotional development, a nutrition and diet expert, and a blogger, says (on the SAMHSA forum),

One of the best cures for that “lack of insight” I’ve found is to stop trying to have the insight for the individual and learn to let them experience the natural consequences of their choices. We don’t have to agree with or like the choices others make for themselves. I know its hard….yet the best thing we can do for our loved ones most often is learn to deal with our own issues and model healthy living and life lessons. Often when the “push” to “get help” is removed….folks will ask for what they need themselves.

What the “recovery” movement has shown us is that those who are “acting out” are very often acting out their own inner pain in the only way they know how. What I’m talking about is very much like the 12 step concept of responsibility and letting the individual seek out someone who has the kind of life they want and then asking them to “sponsor” them in their recovery. So taking care of ourselves and letting our loved one know there is “peer support” available…then letting go and holding on to our own personal faith that they will find their way and if they don’t – we will be ok. The worst thing we can do for someone who doesn’t think they have a problem is to try to ease our own pain by trying to break their denial by trying to “make” them get help. I’m sorry you are in such pain; I can tell you are very worried about your son.

My friend who needed to stay anonymous reminded me completely of Ken Rosenthal’s Crooked Beauty movie when she said:

My son would have benefitted from respite in a place where he was not drugged nor expected to follow “healthy” regimens because perhaps he was just beginning to take charge of that aspect of life.  He was quitting smoking, eating vegetarian, grieving things he didn’t understand or couldn’t comprehend. He needed someone to sit with him while he cried (which he did frequently and needed to do), someone to help him peel away the layers of lies surrounding his life, someone to tell him he was fine whether or not he was clean that day, or wanted to talk or not.

He was never violent at that time, rescured stray animals, loaned money to people (that is a euphemism as he never got paid back) and was just a sensitive person filled with woundedness.  He just needed a witness who woud do whatever he asked (it wasn’t about being demanding or violent), sort of like a personal omsbudman (PO) like they hire in Europe, paid for privately by some kind of funding.  However, I’ve never visited Europle and met a personal omsbudman so perhaps I would like to “design the role,” I am not sure how they operate.

All people in distress need to grieve and to design how they grieve. My son is in some way (before the drugs) so sensitive he is like a mystic and one must understand the symbology of his language and his respect for all vulnerability.  He is so traumatized now (and over-drugged) I don’t know if he will ever come back.

Mary Uhl, is a NAMI of Johnson County, KS, board member and local advocate for the Kansas Mental Health Coalition. She is a better person for me for being able to be patient with those groups. She says:

Medication is one peice of the package, unfortunately it is often the main focus of the discussion.  Other important pieces that have been discussed by medical personnel are nutrition, exercise and sleep and a purpose in life.: the first three  sound like simple pieces, but get complicated in a hurry. Food intolerances and allergies can cause lethargy, confusion/brain fog and lack of focus at least. Excercise can effect brain chemistry in positive ways without any side effects and helps with sleep. Advocating for the least restrictive treatment first (all of the above) before medication is important.

I think the problem is recognizing when you first begin to have problems.  Often, by the time a person shows up at a Dr’s office, medication may be needed for stabilization.  Medication is a battle unto itself (finding the right med, proper doseage…) and distracts from regaining health, Most of us know that the basics make you feel better.  Unfortunately, as a society we have gotten way off track in terms of balance in our lives:  poor quality food (sugar consumption is making national news), chronic overstimulation,  Ill health generally is our major problem.

Now, here are some real situations. How can these parents help their adult kids in a way that IS effective and DOESN’T violate their rights or make the situation worse?

The first one is from Marilyn who asked me for help via Facebook and I offered to post her very real story:

Dear Corinna,
Can/Will you advise me about my son? The story is too long, over 20 years. Forced drugged by mental health courts and psychiatry. He used to go to the street to not be when he was younger. He’s middle aged now, still being forced. Been in and out of jails/prison/psyche hospitals. I blame the drugs. For the first 5 years, I was part of it, forcing him because he was so angry at me. For the past 15 years, I’ve stood by what he wants and advocated for him, to no avail. He’s now delusional in that he does not believe we are his real parents, we are dead, his sisters are dead, he has AIDS (he doesn’t but he thinks he does), people drug him at night in his sleep, and more. He’s in jail again because he was evicted from his mental health housing because he confronted the personnel that he was being drugged in his sleep.

Because he was homeless, he was sleeping on the floor in his father’s apartment. Because he believe his father is dead and the man helping him is pretending to be his father, my son hit his father and he is now in jail with a pending aggravated domestic assault charge. The assistant DA in our city handling the case has said if a charge is filed, he would go to criminal mental health court and there are all kinds of helps through this court, paid for by the State, I suppose. Helps like housing, therapy, “medicines, making sure that my son has the right diagnosis, making sure he is on the right medication, even helping him get off the medicines, and others that would help him get his life back. The asst DA said that there are people going to the local Community College in their program. What can you tell me about Criminal Mental Health Courts? Can you help someone like him?

Here’s a mom from the SAMHSA feedback forum:

Thanks for the info.. I am doing everything I can do as a Mother. Going to Psychiatrist, therapist, learning how to block unwanted thoughts and on medication to sleep. If my son is selling drugs, doing drugs and drinking alcohol and Philadelphia city does nothing to stop him doing illegal stuff who is to blame? He has lack of insight and he said that Police will never catch him because his thoughts /Anosognosia he believes what he feels like.

There is no help for 2 years and We don’t live with him. It’s hard to see him the way he is, yet nothing is done by law officers, peer support, Mental health OR anyone. Yet everyone expects us to go on with our lives. Its heart breaking to see some one who is only 20 suffer not knowing he has an illness..We don’t bring children to this world so that they can have the worse life and our life is NO better than his…What can anyone suggest for my son in Philadelphia? There are not enough CIT officers in Philly and if one doesn’t accept help they can’d do anything . So We sit and wait for a change. It’s been 2 long years…

Here’s another from the SAMHSA feedback forum. This is from my post about 10 types of peer programs that promote complete recovery. It was all I could think of that day, and of course I missed some, sorry to people like Shery Mead with Intentional Peer Support. But also thanks to you all for all the votes.

Does anyone know how to get help thru these 10 tyoes of peer programs? Forget 10, I hope 1 works for my child. I am helpless. Can someone tell me how to get help for someone who is mentally ill? This program seems to be on top ,but is there a solution for my son? Can anyone educate me as to how to get my son the help he needs? I wish there was a way that would amke him realize that he needs help. If he refuses help nothing is done by anyone. The mentally ill is allowed to roam the streets and NO one will help them to get into treatment. Peer support? They say only if he is ready. It’s too complicated for someone who doesn’t realize he needs help…Does anyone has an answer for me? If so please post your comments as to what should I do? Thanks in advance… 

So, what do you tell these parents? Let’s not keep sidestepping their point, that they want to help their kids. As “Nomi” put it on this forum, “Don’t ever challenge a mother’s love and desire to protect her child…. even when that child has grown up.”

We have to find answers  and solutions for these people. What do you suggest?

10 COMMENTS

  1. Thank you so much for addressing this. While it may be parents posting on SAMHSA, there are spouses, siblings, friends, etc. with the same questions. I don’t think there are people who don’t “want” help. I think they’re unable to get help. One of the posters that I got this link from said we should allow our mentally ill loved ones to make their own choices even if we disagree with their choices. These kinds of answers are much too simplistic. If the choice is to stay on the street because you think you’re Jesus Christ & you need to save people, I don’t think that’s a choice we should allow a human being to make. We rescue stray dogs, but not people?? Peers have been in the system for quite a few years. No peer has ever been able to help my loved one. The only thing that does help is the forced medication. Why is it not okay for my loved one to be in recovery due to forced medication? Why does my loved one’s recovery have to look like the recovery that only you approve of?

  2. Thank you, Corinna, for asking an extremely pertinent question. I agree with just about all the suggestions of the mothers you highlighted. To not make the struggle into a permanent problem, I think a basic strategy (one of many)is to say to your adult child that you know they are going through a difficult time, you fully support their ideas (meaning, you see sense in the so-called delusions), and you are ready to admit that you have made mistakes in their upbringing. You ask their forgiveness, even if you don’t believe you had a supporting role in their struggle. As one mother said, you validate, validate, validate. (But, do your research. Look into what people say about mental illness as a transformative process.)

    I also believe, as the previous commenter said, that people want help, they are just not getting good help. And, to me, that means that they are probably being criticized, not validated.

  3. The stray dog comparison is an interesting one. I wonder what the stray dog would prefer, being “rescued”, or being left in peace, if being “rescued” meant having to live a life in a cage, and being force fed pills that make him feel miserable, while they don’t do much else. Mostly, even stray dogs are treated with more respect than the labelled.

    It isn’t ok for a “loved one” (frankly, I have difficulty seeing the love in forced “treatment”) to be in recovery due to forced “medication”, simply because forced recovery is an impossibility. Recovery comes from within, and is driven by the person’s own free will, or it isn’t recovery.

    I think the first thing parents of adult children who do not want help, ought to do is take a deep look into the mirror: could it be that their adult child doesn’t want their help because their past experience with the help of their parents is that it, in fact, was very little helpful, maybe even harmful, to them? Then, maybe, it is time to talk open about the matter, and also be open to the possibility that one as a parent has made mistakes, has been disrespectful, or even outright abusive towards one’s offspring, and, in case, to openly admitting, and honestly apologizing for one’s mistakes.

    People in crisis are extremely sensitive to whether someone is honest with them, or not, and especially since their trust has been betrayed so profoundly in the past, everybody who wants these people to trust them will have to earn their trust. And don’t fool yourself! Like forced recovery isn’t true recovery, if it’s forced, it’s not true trust. When you have earned their trust, they will come and ask for your help. No matter how “crazy” they are.

  4. Well thanks Marion. I am the only person my loved one trusts to help her. So I guess somewhere along the way I must have done something right. So now I guess the trick is to find out who the perpetrator of the abuse is that caused her mental illness so that person can address the issue with her, thus making her better?

    • No one can make a person better but the person herself. Recovery, healing, comes from within, not from without. That said, a perpetrator who has the courage to admit openly to their abusive behavior, and the integrity to honestly regret it, can promote a healing process. But luckily, a direct involvement of the perpetrator is not necessary to make healing a possibility. In regard to the perpetrator, the only necessary condition for the healing process to take place is that the victim is in a safe place, i.e. no longer dependent on the perpetrator.

  5. EASIEST and most difficult “cure” of them all:

    SEE the sanity in them. See what’s right and good. Because if they’re in a state of suffering … there IS no right or good. In their mind, everything is all “bad” and “wrong”.

    I read it in a book, and it’s one the best sentences for your life, I’ve ever read.

    The “judgment” renders the SENTENCE:

    SEE. THE. SANITY. IN THE PERSON.

    See what is right and good about them. Catch it. Glimpse it. See it. Acknowledge it. And by ALL MEANS

    CELEBRATE IT. Praise it. Appreciate it. Value it.

    Stop looking for what’s wrong and start looking for what’s RIGHT. It’s in there somewhere.

    EVERY person has common sense. EVERY person “knows” something. EVERY person has worth & value.

    If anyone comes at ME and tells me, “you’re screwed up, work on yourself, help yourself” – blah. They don’t know the HARM they do to me, in that.

    Come at me, and give me a praise or a compliment that is GENUINE – oh, speak to me – IN A LANGUAGE I CAN HEAR (comprehend).

    Oh. Where is the land of the LIVING? What sorts of things do they do there? Do they laugh? Cheer? Drink wine?

    How can I ease myself into a scene where I’m gonna feel WELCOMED, WANTED and comfortable?

    NOBODY FEELS WELL IN THE FIX ME WORKSHOP – know what I mean, kids?

    This is why people WON’T GO THERE. They’re smart enough to know better.

    Yeah.

  6. Marian, what if there is no perpetrator? What if the mentally ill person even says there’s no perpetrator? What is a parent, spouse, sibling, etc. supposed to do when faced with a loved one who’s psychotic? My loved one deals with mania. Your post implies that I have her involuntarily treated when actually I don’t. There isn’t anyone to call except the police or crisis lines. When things get dangerous the person will get involuntary treatment/commitment or jail. Jail is an involuntary process too. I’m trying to get some concrete information to avoid the involuntary process altogether in the future. And anyone can help if they have any answers.

    • “I’m trying to get some concrete information to avoid the involuntary process altogether in the future. And anyone can help if they have any answers.”

      What is the state of the environment you’re in? What’s the atmosphere? What’s the vibe? Get out of the house much? Get out of the STATE much? State of being is *very* much dependent on *environment*.

      A change of scenery (movement / travel / exploration) can be beneficial. Field trips! Museums, historical landmarks, tour manufacturing factories, etc.

      If an individual feels insecure about public exposure, some simple remedies provide great security: wear a hat, hold an item in the left hand, wear a necklace with a charm, but turn it around so the charm lays on the back, instead of the chest (gives weight and “cover” to the backside of a person … you know, “watch my back”?).

      Have the person draw out two paths: one is called “no” and the other is called “yes”. Let them fold the side that says “no” and FILL the side that says “yes”. This can be challenging because one major fact is that we too often know more of the negatives, and less of the positives. Understand?

      The person has to think & believe that the “yes” field is available and possible to them. If they think “oh, I’m too sick, I can’t have that, I can’t do that, I can’t go there” – then they’re blocked. They need to experience Liberty and Freedom, so they can fill the “yes” side. Allow, Allow, Allow.

      Allowance; does the person have enough $$$ to pursue some of their interests? Money is a real tool in this world, and it matters.

      To bring a person into Healing and Well-Being, that requires to CEASE seeing & “treating” the person as “sick”. One can *never* get to “heal-th” if they continue to re-inforce their “sickness”.

      Invite the person to LIFE. Invite them into well-being.

    • There’s always a perpetrator. There is no such thing as “mental illness” that just strikes out of the blue, because of some neurotransmitters, or whatever else, that accidentally got out of balance, because of some genes that accidentally ended up in the DNA of the labelled person. Life, if it comes in the shape of a unicellular organism, or a complex one like a human being, doesn’t just act, it re-acts. And whenever the reaction is of the fight-flight-freeze kind, which all the reaction that get labelled “mental illness” are, there is a perpetrator. But there are also innumerable reasons for both those around the labelled person, family, etc., and the labelled person herself to choose to deny the existence of a perpetrator. Which is problematic, since the fight-flight-freeze reactions can’t and won’t stop unless the perpetrator is recognized, and rendered harmless. If it is by removing oneself physically from the unhealthy, symbiotic relationship perpetrators often tend to establish with their victims, or if it is by realizing that one, physically, actually no longer is in this relationship, and that the only place where this relationship continues is in one’s mind. While it, of course, is possible to reclaim ownership over one’s mind, and evict the perpetrator. — Isn’t it interesting, BTW, that we talk about being “out of one’s mind”? Well, who wouldn’t want to go out of their mind, if their mind was invaded by a perpetrator…