It feels, in regard to blogging, as if I may be jumping 'off' rather than jumping 'in'! I have known for some time that I both need and want to write a blog, and here I finally am... jumping off or in.
I am a bit of an anomaly, professionally speaking. Today, I am the director of a pediatric palliative care program in a tertiary care hospital located in the urban core of a mid-western city. And, I am a teacher. That's right: a bachelors degree in elementary education and a masters in special education. I suspect that I am the only teacher who is directing a pediatric palliative care program! But, it is working and I am proud of our program and my journey to this point.
I trained (bachelors and masters degrees) as a special education teacher. "Back in the day", when I was in college, special education teachers really specialized. There were a variety of types of special education classrooms and programs, each separate from one another. For example, in one school there may be separate classrooms for students with learning disabilities, hearing impairments, vision impairments, emotional disturbance, behavior disorders, health impairments, giftedness, and 4 separate classrooms for students with mental retardation: mild, moderate, severe and profound. During one's teacher training, you determined what type of special educator you wanted to be, and I decided to study to become a teacher of the "crippled and other health impaired". Now, thirty-some years later, that terminology sounds inappropriate; insensitive. But, at the time, we believed that each of these special education categories, each group of students had unique types of learning needs. For my students who were "crippled and other health impaired" (COHI), I used a special curriculum .... a separate reading, math, social studies and science text book....designed specifically for COHI learners.Amazing how much we have learned in the past 30+ years!
Today, we take a completely different approach to special education. Inclusion is the norm, and students with a wide range of special needs are educated alongside other students with a variety of special needs, and alongside their peers who do not have special needs or who may be gifted and talented. There is no doubt that the social benefits of inclusion are significant. Students with special needs are now being educated in the same world in which they work, play and live - in the real world. I do think we did a smashing job at educating kids when special education ruled the world of learning. It was common for learners to have their own, personal paraprofessional to help them with learning tasks that may be difficult for them to master without assistance. So, students had a teacher AND their own tutor or helper. I don't think they were as prepared to live in the real world, but I do think they were better prepared academically.
Back to who I am. For some reason, I decided, at age 50, that working toward a PhD would be "fun". Often, over the course of he next several years, I pondered where I had determined that anything about earning a doctorate degree would be "fun" and it did cross my mind that a mid-life crisis little red sportscar would have been cheaper, easier to attain, and a lot more fun than earning a PhD!! But, I wanted to study everything there was to know about children with chronic health conditions; how they learned; how they lived; and how they died.
I applied and was accepted to the Therapeutic Sciences doctoral program. It seemed to be a perfect fit: an interdisciplinary program that would enable me to take courses from all schools at the state university - nursing, psychology, preventive medicine, public health, health policy and management, social work, etc. The foundation of the program was to change the way one viewed disability, and to focus on research, clinical practice and an attitude that recognized what people with disabilities could do, rather than what they could not do. And I did choose the right program - it was a perfect fit, allowing me to learn all the things I needed to know about kids with chronic conditions. Five years later, I had earned my PhD and learned a lot of really good stuff!
So here I am.... the director of a pediatric palliative care program! And I think my perspective of appreciating the role of learning to cope with any life challenge has been amazingly valuable. I see pediatric palliative care through the lens of home, community, school, friends, sports. Just as a patient needs to be dismissed from the hospital, so should pediatric palliative care! Pediatric palliative care happens everywhere the young person exists, not just in the healthcare facility where they are receiving care.
And, I know that teachers, friends, clergy, coaches and others who interact with the child do not, inherently, know how to provide palliative care. We have to teach them!
I teach palliative care via interactive distance learning, telemedicine/telehealth and in face-to-face sessions. We work to ensure that the child goes back to their home community to an environment that enables the child to continue to grow, succeed in school, date, be a boy scout, take dance lessons, etc. and work to become a fully successful adult.
So maybe every pediatric palliative care program should consider bringing a teacher into the program. We do offer a new, fresh perspective!
I can't wait to tell you about my approach to palliative care - but I must. It is late, I am sleepy and you have probably read quite enough for my first blog. See you soon.
Kathy
You are such an inspiring advocate for our children...thank you for being you!
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