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. 

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?

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?

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…