Sunday, October 31, 2010

National Alliance on Mental Illness - Montana (NAMI-MT) Conference

I returned last night from Billings, Montana where I did two presentations on topics related to parents with mental illness and their daughters and sons of all ages.  The organizers of NAMI-MT invited me to speak earlier this year and I am excited to report that the energy and reception of people at the conference was incredibly positive.  Many of the people attending the conference were personally touched by these topics as either parents with mental health struggles, grandparents raising grandchildren, or as daughter and sons themselves.

For the plenary speech I was asked to speak about my own experiences and my family's story.  Truthfully I find it much easier to speak about the major issues facing parents with mental illness and the common experiences of daughters and sons than to speak about my own story.  I'm sure that is natural, since it is hard to sort through and organize so many personal memories.  I also fear getting off track by adding too much detail or getting caught up in storytelling about a specific event.  However, when it was all said and done several of the audience members who have mental health struggles asked me for copies of my speech and people handed me personal notes of thanks with details about what parts of my speech touched them most.  It was wonderful to feel their support and to feel included in the community of people attending the conference.

Gary and Sandy, the organizers of the conference, did an incredible job.  They also included Mary Garrison from Illinois (Milikin University) to speak about her recently published article on what inhibits mental health providers from employing mental health consumers as providers.  I hope Mary is able to present in more environments because she really understands what is happening in practice when agencies begin to change their approach by including peer specialists and other "consumers as providers".

It was an incredible conference.  I've returned to New York City with a list of things to do.  High on the list is returning to a strategic planning document from June to help build an organization to sustain all of the Daughters and Sons efforts.

Thursday, October 28, 2010

Greetings from Montana! - Unlisted Film

I arrived in Billings, Montana today at the invitation of NAMI - MT. (National Alliance on Mental Illness - Montana)  The organizers of this state conference have done a fantastic job putting together events!

Tonight we watched "Unlisted: A Story of Schizophrenia", a documentary by Delaney Ruston, MD.  This was my second viewing of the film. (My first was the NAMI National Conference in D.C. earlier this year.)  I will admit that I was hesitant to watch the film again tonight because when I watched it in D.C. I felt deep sadness.

Yet, in my second viewing I was able to see new layers of what Delaney has brought to this film.  It is an important film that I have added to my personal library.  Along with "Out of the Shadow", "Tarnation", and "Canvas", "Unlisted" brings a new perspective on the experience of daughters and sons who have a parent with a mental illness AND also new perspective on the experience of parents with mental illness.

Watching Delaney's film again tonight I could not help but ask myself the following questions:

How was Delaney's role as a parent overlooked in his history of mental health care?   How was his parenting role overlooked as a motivation toward his wellness?  

Keep in mind:  68% of women and 57% of men accessing services for mental illness are parents.  (Nicholson, Biebel, Katz-Leavy, & Williams, 2004).  This means that most people accessing mental health services are parents.  Yet mental health systems are largely missing the untapped potential that providing supported parenting would bring for people who are accessing services for mental health.  Parenting should be supported, just as employment is now supported.  Not only should it be supported, parents with mental illness should be recognized for the love they have for their children and the esteem they find in being parents. 

Watch the film and you will likely also leave with "what could have been?" questions.  I feel for Delaney. Personally, in my own, life I have asked: "What could have been?" "What could I (or someone else) have done differently?"  "Would things have been different?" - related to my own parents who experienced mental illnesses.  A great film/documentary leaves questions unanswered and opens room for discussion.  That is part of the success and craftsmanship of "Unlisted".

The experiences of Daughters and Sons are as diverse as the experiences of people with mental health diagnoses.  By that I mean, two people can have the same diagnosis, but have entirely different symptoms and/or mixture of personality and symptoms.  

Similarly, in organizing with other Daughters and Sons it has become clear that two people may have a parent with the same mental health diagnosis, but may have entirely different experiences with their parent.  The more people come forward with nuanced, thoughtful, honest sharing of their stories as daughters and sons the more complex understanding we will build of people's experiences when their parent struggles with mental illness.

Delaney:  Thank you for your courage to share this deeply personal and honest experience as a daughter of a father with schizophrenia.  Your film is a great contribution to larger mental health advocacy movements.  It is also a contribution to a growing library of films, documentaries, books and literature that makes visible the experience of daughters and sons who have a parent with mental illness.

Our Agenda

The Daughters and Sons Agenda  (edited 2009)

Areas of Focus

1) Expanded Research and Professional EducationTraditional research, concerning Daughters and Sons, has focused on the statistical likelihood that the individual would acquire their own psychiatric diagnosis. But, there is little knowledge about the environment in which the child was raised. (e.g. a single-parent household vs. a two-parent household vs. an extended family member vs. a foster home). Additional issues would include: gender, race, economic status, obstacles to education, young carer and adult caregiver stress and developmental issues.

2) Young ChildrenExtended family, parents and professionals need to be trained and encouraged to talk to young Daughters and Sons about our parent's and our experiences, including our perception/identification with our parents. Children and young caregivers often attempt to suppress their needs because they are worried about the adults around them. They may appear “fine” but may actually be struggling with serious fears that need to be discussed. For children who have become little adults in the home, support must be provided so that children can “transition back” into childhood while also acknowledging the important role they have played in taking care of their family during an emergency. Tool kits and resources to help these children ask for assistance from adults are available in the UK and Australia and should be available in the United States.

3) Teens and Young Adults: Teens and young adult Daughters and Sons need special attention. As they transition into adulthood, Daughters and Sons may be at risk to abuse in relationships due to economic and social vulnerabilities, especially where prior resilience factors (social support, education, peer support, role modeling) have been weak or altogether absent. These individuals often need help to survive the high stress of attempting to build their own life and act "normal" or build friendships with peers without feeling fearful of stigma through disclosure.

4) Adults: We seek to support Daughters and Sons as caregivers, advocates, and co-survivors of mental illness in their relationships with parents and the “health care” system. As Daughters and Sons reach the point where they are able to view their parent from an adult perspective, they begin to seek out the types of support and education that NAMI has traditionally provided. Often seeking NAMI at a younger age, they reach NAMI with a lifetime of experiences, yet near burn out from repeated experiences of mental illness crises and advocacy with little support. Adult Daughters and Sons face stigma as a group, referred to as “damaged” or “hidden victims” and often seen through lenses of mental illness pathology, reinforcing the common fear of Daughters and Sons that mental illness is their destiny. Stigma often thwarts their advocacy efforts, including attempts for additional assistance in geriatric care for parents.

5) Advocacy for Parents with Psychiatric Disabilities: Parents with psychiatric disabilities should be intentionally supported in their parenting role as part of recovery planning and parenting should be recognized for its value in psychiatric rehabilitation. Stigma has unjustly and disproportionately prejudiced the "system" against parents with psychiatric disabilities. Parents with psychiatric disabilities can be and are good parents, but external supports are often needed (including advocacy and better parenting-ability assessment tools for social workers). Increasingly research also shows that parenting is an important factor in recovery for people with psychiatric disabilities.

Wednesday, October 27, 2010

Welcome to Our Agenda

To all readers -

Welcome to Our Agenda blog.  This is my first experience writing a blog and I'm grateful for the opportunity to share ideas, resources and to build (hopefully) an even larger community of people who care about the experiences of daughters and sons who have a parent with a mental illness.  I've been organizing on this topic for the past eight years.  Along the way many people with shared experience and passion have contributed literature, ideas, energy as organizers, development talent for support groups and much more.  Collectively we created a document that outlines our core agenda.   I will post that as my next entry.  In the meantime...

Who are the Daughters and Sons?

We are a group of Daughters and Sons of parents with mental illness and/or psychiatric disability who have build a national working group, beginning in 2003.  We work in partnership with researchers, parents with mental illness and other stakeholders and in tandem with efforts in Australia, the UK and Canada.  Our focus is to enhance existing mental health providers and advocacy organizations with resources and information to ensure that parents with mental illness and their daughters and sons of all ages receive supportive and accurate information, a voice in treatment planning and respect from health care providers.

- Maggie Jarry