• * Learning from firsthand accounts
• * Parents Speak Out
• * Unsuffering

"When you want the best for your child, nothing is ever fast enough.  No matter what you want, no matter how good it is or has already been, we want it – yesterday morning. When we go to a provider, we expect to hear…[something helpful] about our children.  It’s the way we feel about our children.  ….As a parent, you have a sense of urgency.  Waiting 10 years is one thing, if you’re not talking about children lives…We did have some services.  But you always want more.  You always want the missing link. Maybe this will help?  We are always looking for something we don’t know about as parents.”

Lori, the mother of two young children diagnosed with autism

Pamela's Recommendations for Providers
-   What you say and how you say it is very important.
-   The main thing is to listen to the families. Really listen. A lot of times not heard. A lot of these parents, by the time people are trying to help, are so frustrated because they have been ignored for so long. If there were more understanding, there wouldn't be so much anger toward people that are trying to give services.
-   The family might be going through situations that are very stressful to the parent, which the provider might not realize.  It doesn't affect the provider like it does the parent. Something can trigger a situation from the parent’s past. Show some compassion.
-   It's okay to say, “I don't know the answer.”  Also, ask the parents what they think.  They could come up with a lot of ideas.  If you do it together, it's a great opportunity.
-   Providers may be experts in their field of service but they need to understand that the parent knows the child better. 
-   Each family is at a different level, and may not have as much of an understanding as another parent. Share some of your experiences that you've grown through. This makes the parents feel that they are not alone. You are not just coming in there to tell them what to do, to change something. You are also coming there with your own experiences, and how you have grown from your experience.

Pamela, a parent who has lived through her own share of frustrating experiences with the provider system.

What’s helpful for me is when I have a doctor or counselor who…doesn’t immediately jump to ask, “Where are the razors?  We have to get rid of them right now;” or “You have to eat right now.”  Or “We have to get you somewhere before you hurt yourself or kill yourself.”  I want to work with people who don’t try to remedy the situation immediately with whatever they think will work. I always appreciate someone who sits with me and recognizes my pain and my experience in that moment and who acknowledges that it’s my experience.  I always am frustrated when someone I’m around starts pathologizing everything that comes out of my mouth.  So if I say something that has a lot of meaning for me and someone says, “Oh that’s just because you’re depressed right now; you won’t feel this later,” I can’t stand that because this is me – my experience – and this is how I feel.  When someone says something like that, it devalues what you’re going through at the moment.  It just makes me more frustrated. 

Nicole’s suggestions for practitioners working in different settings with people who are suicidal and dealing with life-threatening situations, such as self-harm and anorexia.

REMEMBER TO ASK

"I worked in a small town where there is an inn that had been owned by the same family for 100 years. Every Sunday the long-time cook and her crew prepared a popular smorgasbord. New people bought the inn and put some money into it, renovating and rewiring the old structure. They hired experts to completely redo and modernize the kitchen from top to bottom. The Sunday the restaurant re-opened for smorgasbord, the cook came in and found it was a total disaster to work in.  Her comment was, "They forgot to ask the cook!"  The kitchen was state-of-the art everything, yet it was non-functioning. I work with day care providers. Sometimes I set up events that people don't attend and I wonder why. Ever since hearing this story, I am reminded, "Remember to ask the cook!"

- Ellie, an early childhood provider

Learning from firsthand accounts

We designed this website page for teachers, students and practitioners to learn from   people's experiences as clients in human services. We share firsthand accounts and recommendations for human service providers, some of which are included from the book Re-authoring Teaching. Our hope is that these tips for practitioners will generate further stories and recommendations from people with experience and knowledge to educate teachers and students in valuable lessons about what ethical, useful practice means to them. To contribute responses sparked by these materials – reflections, letters, stories and/or your own recommendations – click here. In this way, we can protect privacy and safeguard confidences of people who bequest us with their teaching stories and heard-earned wisdom.

Parents Speak Out

When asked, parents of children with special needs, often overflow with accrued knowledge about their children, parenting practices, and practicalities of life. Despite their years of parenting and seeking help for their children, they rarely presume to describe themselves as possessing valuable expertise and relevant experience.  Often parents seeking services describe their anger and tears in feeling discounted and patronized by professionals, as well as their growing confidence over time in their own good judgment regarding their children. Mothers highlight the centrality of friendship that can emerge when sharing their stories with other mothers, helping each other and their children.

Many people throughout the world seek to understand the shifts required for professionals in attitude and practice to become accountable to those they serve and to build effective help-giving relationships based on parent-professional partnerships. In the face of challenging situations, many parents choose a positive approach to transform anger into a language that professionals can hear.   In Vermont, community gatherings in the late 1990s brought together parents of children with emotional-behavioral difficulties, human service providers, and planners to actively explore what helps family members to speak up, feel supported, and be meaningfully involved in the planning, delivery and evaluation of human services.  Pamela, a parent, lived through her own share of frustrating experiences with the provider system.  At first too angry to speak, she offered the following recommendations about professional attitudes that foster effective help-giving relationships:

-   What you say and how you say it is very important.
-   The main thing is to listen to the families. Really listen. A lot of times not heard. A lot of these parents, by the time people are trying to help, are so frustrated because they have been ignored for so long. If there were more understanding, there wouldn't be so much anger toward people that are trying to give services.
-   The family might be going through situations that are very stressful to the parent, which the provider might not realize.  It doesn't affect the provider like it does the parent. Something can trigger a situation from the parent’s past. Show some compassion.
-   It's okay to say, “I don't know the answer.”  Also, ask the parents what they think.  They could come up with a lot of ideas.  If you do it together, it's a great opportunity.
-   Providers may be experts in their field of service but they need to understand that the parent knows the child better. 
-   Each family is at a different level, and may not have as much of an understanding as another parent. Share some of your experiences that you've grown through. This makes the parents feel that they are not alone. You are not just coming in there to tell them what to do, to change something. You are also coming there with your own experiences, and how you have grown from your experience.

Unsuffering

While we have considerable vocabulary around words that denote suffering, we have limited vocabulary around actions of any kind taken to ‘unsuffer’ oneself. David Epston coined the term “Unsuffering” to imply personal and moral agency. On these pages, we aim to capture some of what we learn directly from insider accounts of living through and “unsuffering” from psychiatric crisis, severe depression, and sexual abuse. We hope to create space for service seekers to speak with conviction about their relationships with professional helpers.   

NICOLE

As a young woman in her 20s, Nicole experienced a number of hospitalizations in her struggle to overcome anorexia, self-harm, and depression (You can read more of Nicole’s writing in Chapter 9 of Reauthoring Teaching). She generously shares aspects of her story including journal entries, poems and letters so that others can learn from her experience.  Nicole came to the conclusion that love is really what compelled her to put her trust in her recovery, chosen family, and therapeutic support team. In the following excerpt, she responds to the question, “What's it like for you now to give and receive love?”

Giving and receiving love; I can hardly believe how much the acid of depression can dissolve one's ability to volley emotions.  Now that I, with much help, have pried the fingers of depression from around my throat, I can allow the freshness of the air to revitalize me, to remind me what it is to feel, what it is to be alive in a world full of "alive" things.  It's almost disorienting to be suddenly bombarded by the emotional inflections of the world.

Imagine the absence of feeling one must experience in order for her to drag a razorblade across her skin; she feels nothing, and because she feels nothing, she pushes harder and depression helps itself to her life force as it runs from her body, licking her wounds, demanding just a little more.  And she gives it.  She gives it because she feels nothing and can't remember what it's like to receive a kiss upon her cheek from warm lips, can't remember what it's like to have a friend caress the trouble from her brow, can't remember why it's worth it to fight for her own life.  She feels nothing and therefore, believes there's no incentive for her to stay.  There's no emotional currency bargaining for her life.  And so it's easy, when depression complains of thirst, for her to tilt its head back and empty herself into its jaws.  It is this numbness that is depression's greatest weapon.  In my darkest hour I felt no one's love for me, and I had no love to give.

But now...now I feel depression loosening its grip, and the more fresh air I breathe in, the weaker it becomes.  The more I feel, the more love I'm able to receive, the more I value my own life, and if I believe myself worth saving, depression will never win.  When I feel someone's love now, I'm no longer scared, as I once was.  I don't fear the consequences of that love (attachment, obligation, pleasure, and pain) because I don't have to dig a razor into my arm or starve myself to feel them anymore.  They are finally guests at my table and they have come just as they are, in all their original splendor, mine to experience.  And so it is, I'm able to receive love, the love that has saved my life. 
 
Here are Nicole’s suggestions for practitioners working in different settings with people who are suicidal and dealing with life-threatening situations, such as self-harm and anorexia.

What’s helpful for me is when I have a doctor or counselor who…doesn’t immediately jump to ask, “Where are the razors?  We have to get rid of them right now;” or “You have to eat right now.”  Or “We have to get you somewhere before you hurt yourself or kill yourself.”  I want to work with people who don’t try to remedy the situation immediately with whatever they think will work. I always appreciate someone who sits with me and recognizes my pain and my experience in that moment and who acknowledges that it’s my experience.  I always am frustrated when someone I’m around starts pathologizing everything that comes out of my mouth.  So if I say something that has a lot of meaning for me and someone says, “Oh that’s just because you’re depressed right now; you won’t feel this later,” I can’t stand that because this is me – my experience – and this is how I feel.  When someone says something like that, it devalues what you’re going through at the moment.  It just makes me more frustrated. 

If you would like to write to Nicole, please send your reflections and questions to sax@reauthoringteaching.com.

KATE

Kate has generously given permission to read entries from her journal in classrooms, to include her teaching in the book Reauthoring Teaching, and to share excerpts of this account on this website.  Through her talent for writing and the sensitivity of her detailed recollections. Kate teaches us about her experiences of psychosis.  At age 18, Kate experienced what she named “Hell & Back” – a descent into and recovery from a psychotic depression. Six months later, she experienced what has been diagnosed as a manic episode.  Nothing prepared her or her family for “the crisis” that changed her life. In this brief excerpt, Kate grapples with her experience of psychosis:

I’m lying on my bed in my dorm room looking up at the ceiling between the words that I’m writing.  I’m thinking about several things.  One is how my bedside lamp casts a pattern of light up on the ceiling that’s like the weaving of a basket.  I can appreciate that it looks interesting but there was a time not long ago… maybe a week or so… when it looked so incredibly divine.  It seemed like the work of a great artist rather than Walmart.  I’m thinking also about this morning when I did a search on Wikipedia about psychosis.  I learned that “psycho” is a term used both for people who experience psychosis and people who are psychopaths. 
Psychopaths are people who seem to have no sense of empathy for others and for some strange reason become things like serial killers. Psychosis is when experience becomes too profound for words.  I’ve never been a psychopath but I’ve experienced psychosis.  It is a process of being lost in nothingness until little sparks of real life begin to show up again. It is an experience of not knowing where you are, whether you really exist, or whether you are lost. Psychosis. Psychopath. The word “psycho” labels us both. I hate the definition of the word “psycho."

Kate offers these recommendations for practitioners:

The best things that therapists did for me was help me to rediscover self-expression. For me this is what I feel was lost during the time I was in the hospital for major depression.  Depression for me in general has the effect of losing my sense of self and my ability to be expressive.  It seems like for many mental illnesses an essential piece of the healing that needs to occur is the process of expressing oneself.  The classic idea that when someone is having problems they need to “talk about it” is part of this idea that self-expression is healing.  However, I think it may be really important to know that there are some other effective ways of helping a person find positive self-expression.  In my case I needed help recovering from a depression that put me into a mute, catatonic state.  Both time and medicine helped me recover but these would have been useless without certain exercises that helped me regain confidence in my ability to “be me again.” 
    
One of these exercises was sitting in a circle with a group and tossing a ball around.  I remember at that point believing myself to be a ghost that no one could see.  I literally believed that I had no physical connection to the world that I was looking at.  When one of the therapists threw a bean bag in my direction (calling my name out as she threw it), I did what I thought at the time was impossible – I caught it.  What’s so amazing about depression is that we don’t realize the things we are still capable of.  I truly in my heart did not think that I was a part of that group - that I was in any way connected to them  - until I was put in this position of having the opportunity to catch the ball and throw it back.  It was part of re-learning that I could in fact interact with people.  It also may be good to point out that little experiences are keys to larger concepts.  For example, in this ball exercise I remember that I kept passing the ball right back to the person who passed it to me.  Soon this therapist pointed to someone else just as I was about to pass it to her, indicating that I could choose to pass it to someone new.  To me, this moment contributed to my re-learning that I had the ability of “creating something new” in a sense.  It’s hard to explain but it was like a reminder that I could be creative.  I could do more than merely react to my environment. I could add my own spontaneity.
    
One of the worst things that practitioners can do to someone suffering from mental illness is to forget that they are still a real person who deserves as much respect as anyone.  I clearly remember the way in which practitioners often talked to one another about me as though I weren’t in the room or didn’t inform me of what was going on.  I think they assumed I didn’t understand (which perhaps I didn’t but the way they acted made me feel as though I didn’t exist which was already part of the problem I was dealing with and that feeling did not need to be encouraged).  I remember being taken to see the head doctor in his office and there were two nurses in there as well.  As I replied or didn’t reply to the doctor, one of the nurses would make a concerned face at me and then type something on the computer.  The other nurse was also writing something down as I talked.  They didn’t even introduce themselves when I came into the room.  I felt like they were analyzing me and testing me, and it made me very uneasy and certainly influenced my nervous behavior.  Remembering my experience, I think it’s important for practitioners to do all they can to try to see the person behind the illness – we are really under there somewhere and we need more than anything to be recognized.  One of the simplest ways to connect with that person is to have a picture of something they love and ask about it.  Or to have a picture of something the practitioner loves. My favorite practitioner in the hospital showed me a picture of her with her dog and she asked me whether I liked dogs and if I had one.  She shared with me something about herself and gave me that opportunity as well. I liked her because she treated me as a real person who was worth talking to, not some object for tests and pills. P 161-162