Guide or Rule?

/in /by

I came across a brief article written by by Brain Alper called “Guide or Rule?”. I am grateful for his thoughts and perspectives. I posted his article at the end of my comments because it makes me think of the many hearing health and habilitation ‘guides’ that become perceived as ‘rules’.

Guides are written to inform parents of children with hearing differences and they do not intent to be rule oriented; however, I often see these guides perceived as rules: guides for language development, guides for cochlear implantation, guides on parent tips and advocacy, guides on best practices. I’m not going to focus this blog post on bashing of guides.  I like them and they are useful, but it does bring up an important conversation about how these guides help or possibly hinder parent beliefs or decision making.

People can also be guides. When I council parents, I think how I can most effectively transfer knowledge and share my experiences that guide and encourage (rather than egg on another rule).  I think about the vast array of hearing health data (which changes over time), child development (which evolves), diverse opinion, family culture, and communication opportunities. According to Brian, a guide is “someone who helps facilitate learning and navigate the complexity of decision making”. Parents of children who are deaf and hard of hearing are faced with an abundance of information and often someone’s bias. One of the things I like to say to parents is, ”I have my own perspective and experiences, and I encourage you to talk with and listen to everything people say. Become informed by reading and researching as much as you can. Focus on what your heart is telling you though, and make your own decisions based on your beliefs, family culture, needs, and values.”

Parents are often overwhelmed with the information they hear, especially upon diagnosis of their children’s hearing difference. Professionals and other parents who coach and guide parents must ask themselves, “What is the best way to inform this parent and family? Can I detach from my bias, my beliefs, and my values and attune to parents’ innate capacity, character strengths, and unlimiting beliefs?  Can I guide them down a path that they envision, and one which aligns with their hearts?”

Brian Alper, MD – Founder of DynaMed; Vice President of Innovations and EBM Development, EBSCO Health Ipswich (Oct. 2015)

A GUIDE is a person or thing that advises, shows the way, or helps someone form an opinion or make a decision.  To GUIDE is to show the way or facilitate learning or decision-making.

Don’t confuse GUIDES with RULES.   Many times in our work which is complex we have turned GUIDES into RULES.  When I discover this I often repeat the classic line from Yoda: “You must unlearn what you have learned.”

I would rather be a GUIDE than a RULER.

For the world, DynaMed provides a GUIDE through the complex maze of clinical decision-making where the facts are approximations with varying degrees of certainty that are difficult to recognize, the expectations are multiperspective and multinational, and the values and preferences are individualized but the reference materials are usually not.

Where can you be a GUIDE? What have you learned that can help show the way for others?  Whether directly interactive and socially engaging, or through reflection and writing, or some AMBIVERTED
combination, how can you help develop the GUIDE?

 

Share

Tell Your Story, Share your Strengths

/in /by

About twenty years ago a friend of mine told me that I make the best of a situation. Within one year, I graduated with a masters degree, moved to Massachusetts, got married, and had a baby girl born with cranifacial abnormality and then later diagnosed with hearing loss. Twenty-three months later my son was born with hearing loss as well. My friend was referring to how I gave up a lucrative career to care for the needs of my children, and how I started a social network called Parent Connection for families of aural/oral deaf and hard of hearing children. I ran in constant motion, attending to my kids needs, their frequent medical and audiology appointments, writing and coordinating newsletters, family events and workshops for parents in the social network that started before my daughter’s second birthday party. I had taken on a part time job teaching at community college by year three. At the time, I didn’t realize how much energy young mothers have! The bliss of parenting, locamotion style, and not letting anything slow or come to an end. I didn’t see burn out coming either. I felt so much grief, in my role as parent dedicated to the needs of my children and for the loss of a career and personal journey I had once envisioned. I always felt optimistic about my children’s future and strong in my belief in listening and spoken language. No one could recognize my grief, since I remained outwardly happy and clearly optimistic. I kept working none the less. I was clearly determined to try anything in search of knowledge that helped me raise socially and emotionally well adjusted children.

Back then we used LAN lines; my Intenet was dial up and social media was non existant. Play groups were created by connecting with strangers I met at play grounds. I left voice messages on portable anwering machines and returned calls often came a day or two later. After putting the kids to bed precisely at 8pm every night, I would enter my quiet, dimly lit den and call parents of children who were deaf or hard of hearing. For several hours every night, Sunday through Thursday, I listened to their stories. A mass of information came flooding into my ears and to my brain about hearing aids, FM systems, techology trouble shooting, school disability services, doctors, and social emotional needs of children. No parent had time to care for their own well being. We all focused on our children and families.

Raising two childern with hearing, learning, and vision disabilities taught me so much about myself. I really didn’t know whom I was back then. I had all these wonderful skills when I graduated and got married, but I never took the time to explore my true self and authenticity. By the 8th year of parenting and caring for my children, I had worked countless, exhausting hours at home and in part time positions. I was tired. I felt burn out. So, I quite my job at the college (international programs/economic development) and made a conscious decision to incorporate a new venture: Partners for A Greater Voice (inspired by my childern, Parents Connection, and that job at the college). I could manage this non-profit organization from the comfort of my cozy den, and work around the needs of my family. Making the world a greater place for children with hearing loss in a developing country became my passion. I also knew I had to take a few things off my plate, to allow for breathing space and less stress. I incorporated Parent Connection as the Massachusetts Chapter of Alexander Graham Bell Association, remaining President for four years until I found new leadership. I gave up competitive tennis that had been crushing my body for years and I started yoga.

I am so very grateful for those parents who stayed up late hours on many nights telling me their stories. In the years of mothering children with disabilities, parents confided in me, trusted me, shared their deepest fears and worries. They taught me about love and marriage, about IEP team meetings and mainstream education for children with hearing loss. Listening to their stories not only helped me prepare my children for their adult, independent life, but also boosted and enriched my purpose driven life. I continue to learn from parents all over the world. My journey through 1000 parents has been inspirational. In truth, parents are the backbone in my resilience training, my telescope into my children’s future, my friends, my teachers, and my therapists. I hear humility and forgiveness in their stories. I witness their bravery and perseverance. I soak in their perspective. Leadership and teawork swirl around as I meet parents engaged in advocacy work, counseling, habilitation or legislative action.

I did make the best of my situation and without even knowing it sometimes. I have climbed around, under, and over walls to find a solution to a problem.  I am filled with optimism, hope and love of learning that drives my interest in the field of aural education. I put my strongest strengths of creativity and curiosity into practice by creating Parent Connection and Greater Voice international initiatives because I enjoy exploration and new experiences.  I relish in creating programming and find ways to adapt knowledge and content to the needs of teachers and parents living in low resource communities.  I have courage, as many parents often discover from their own journeys.

To all Parents: Take time to settle your mind and reflect on your experience. Breathe a moment of happiness into your lungs, and explore your authentic story. Listen within your heart to identify your most powerful strengths. Share any one of your many stories using positive language. Stories connect people, provide perspective, and provide an informal education to everyone who listens. Stories also help to define our true selves (journal it!), guide us to problem solve, and help us parent effectively.

written by Joanne Travers, Founder/Director of Parents for A Greater Voice, Inc.  

Information from this article should be cited/referenced as: “Partners for A Greater Voice, Inc. Content derived from Essential Programs to Coach and Empower Caregivers (2016). Ipswich, Massachusetts U.S.A. www.greatervoice.com”

 

Share

Survey Says! Health and Well Being of Caregiver…

/in /by

Partners for A Greater Voice (PGV) completed an online parent survey in 2014 that was predominantly marketed through list-serves and email groups to families throughout the New England (U.S.A.). Of 256 responses to  22 questions, 90% were mothers and 9% were fathers. Nearly 80% had a college or advanced degree. Approximately 80% were parents with dhh children under the age of 13, and 94.6% had children with moderate/severe to profound hearing loss. The target market included parents who chose listening and spoken language as a primary communication modality.

We further delved into the developing world and created a separate survey specific to parents in the Dominican Republic, a population we had been working with for 14 years. Of the 166 responses to 38 questions, 70% were mothers, 17% were fathers, and others were grandparents, aunts and siblings. Approximately 43% had completed vocational training (4%), a degree program (23%) or an advanced university program (16%).  22% had completed primary school, 25% completed secondary school, and another 8% of parents who took our survey had received no education. All Dominican parents had school age children with varying degrees of deafness (60% had either severe or profound range).

Our intention was to gather information that would help us create a new curriculum focused on parent intervention called Essential Programs to Coach and Empower Caregivers. The results and information parents provided supported PGV’s new professional education. While many other services to families focus on the child and his/her outcomes, PGV’s program is geared directly to parent intervention and is comprised of six essential learning modules.

Regarding Health and Well-being section of our survey, parents responded in the following way:

A majority of American parents feel higher degrees of stress when they care for their child’s special needs. In the United States IDEA laws allow parents and pubic schools to advocate for specialized and individual education for children with disabilities. Inclusion has grown over the last 25 years, and schools now request that parents participate in their child’s individual education program (IEP). The added burden to become familiar with the law and to advocate for the needs of the child creates a stressful environment for many parents. Results from the PGV survey said that more than 40.8% of parents feel high degrees and extremely high degrees of stress and/or grief when caring for their child who is deaf or hard of hearing, and nearly 35% have moderate degrees of stress and grief. Grief was included in the survey because parents feel an emotional burden, often responding to the needs of their child with a burden of grief witnessed in IEP meetings and other situations. Further, 44.3% said they do not have time to care for themselves and when asked how they would most likely want to take care of themselves 70% chose cardiovascular exercise, 35.6% requested yoga, and 22% checked parent counseling. For the segment of parents who did take time to care for themeselves some responses included: 46.5% engage in cardiovascular exercise, 19% said they do yoga/meditation, and 10.8% checked parent consultation.

We observe that most low income parents in the Dominican Republic have limited access to hearing health services and parent support. These parents (and their children) often feel isolated. They endure high degrees of social stigmas and are often burdened with depression, shame and guilt. It may be surprising to find parents are less stressed in the Dominican Republic, given less support for disability services, poorer quality of education for children, and discrimination. Culturally, families learn to cope with adversity and hide their burden. They have a high degree of resilience though they are often burdened with basic needs. Their mind may not focus on the disability so much as these other needs. In many instances a child’s disability needs are ‘put off’ or a child’s disability is ignored.  Social, emotional and language development is compromised as a result. Caregivers often rely on doctors and schools to help their child and often do not see themselves as leaders of their child’s development.  PGV believes this is due to a cultural hierarchy and a belief system that authority and adminstration has carved into society. Futher investigation is needed, though qualtiative meetings with over 600 parents has imbued an urgent cry from parents to be heard and repeccted.

Our survey indicates that only 5% of Dominican parents feel extremely high or high degrees of both stress and grief when coping with their child’s hearing loss. There were 23% who admit to a moderate degrees of stress and 15% who cope with moderate degrees of grief.  When asked how they care for their health and well being, 31% felt a need to talk with someone else, 22% said they would do something nice for themsleves, 14% read, and 25% wanted to exercise. Results say that parents are most comfortable talking with professionals and parents about their needs and their child’s needs (41% teachers, 32% parents, 14% doctors. 10% other).

prepared and written by Joanne Travers, Founder/Director of Parents for A Greater Voice, Inc.  

Information from this article should be cited/referenced as: “Partners for A Greater Voice, Inc. Data from PGV Parent Education Survey 2014. Ipswich, Massachusetts U.S.A.

 

Share