Carissa Robinson (MSW, ’12) is a founder of the Coffin-Siris Syndrome Foundation. She currently serves as an advisor, advocate liaison, and grant program leader for the organization, as well as primary caregiver for her three sons. She earned her undergraduate and graduate degrees from Colorado State University. Robinson discussed how her development as a social work professional evolved based on the needs of community and family, and how all social workers “are uniquely skilled at listening and showing up where needs may exist.”
What degree did you earn while at CSU?
B.S. in Psychology (‘07) and MSW (‘12).
What was your field placement?
Both my practicum and internship were within Poudre School District, supervised by Liz Davis. I worked at Putnam Elementary and at O’Dea Elementary, specifically within their autism programs.
What drew you to the profession of social work?
When I was finishing college, I didn’t know what I wanted to do with my life. I loved people. I loved kids and assumed I would go into teaching (mostly because I didn’t have a wide understanding of options that seemed fitting). My boyfriend at the time (who would be husband down the road) encouraged me to see the world and find what I was passionate about.
After undergrad, I spent a year in Pattaya, Thailand, volunteering in an orphanage. Part of their mission reach, aside from teaching preschool and running a full time orphanage, included a slums and prison outreach, as well as advocating on behalf of women and orphans; working with government officials to advocate for the country’s most disadvantaged; promoting trainings on trauma and abuse and the impact on mental health, development, and poverty; and educating and training Thai staff.
This experience sparked my passion for social justice, systems work, and advocating for marginalized populations.
Why did you decide on Colorado State University for your degree?
By the time I decided to pursue graduate school, my husband and I were homeowners and deeply invested in our community in Fort Collins. My husband was a year deep in his graduate program for mechanical and systems engineering, and we were both working in Fort Collins. CSU offered a highly regarded generalist program, so it was really the only program I considered seriously.
Were you able to find a job after graduation?
Yes. After graduation I worked for Greeley School District 6 as their Child Find Coordinator. It was a dream job. I was so excited about the opportunity. The learning curve was steep: IDEA, Early Intervention, managing a team of other professionals, school district operations, and home visits/direct work with families, systems, advocacy, etc.
About halfway through my first year, I gave birth to my first son, who was born with significant medical and developmental complications. Ironically, my job with District 6 had positioned me perfectly to navigate the system of developmental disabilities and hospitals in ways I never would have imagined.
By the beginning of the next school year, I had to resign from my position as my son was headed into open heart surgery and his therapy needs and medical complications were significant enough I couldn’t concurrently work full time.
Do you currently work (paid or volunteer)?
My husband and I reside in Kirkland, Washington, where I am home raising three boys, ages 1, 4, and 7. About three years ago, my husband and I started, and currently run, a non-profit supporting my oldest son’s rare genetic syndrome (coffinsiris.org).
The Coffin Siris Syndrome Foundation is all volunteer run and exists to connect, support, and inform the Coffin Siris Syndrome community and promote related research. We host an annual conference, work closely with the worlds leading geneticist studying the syndrome, and are fundraising for groundbreaking molecular research projects in partnership with a number of geneticists both nationally and worldwide.
When we moved to Washington, I was drowning in the reality of my son’s needs. While we had great community in Colorado, I was completely alone and isolated when it came to navigating disability and a child in and out of the hospital. I knew I needed community out here, so I made it.
I became an advocate for moms of kids with disabilities. After a friend and I attended a few sessions of a moms’ support group around “special needs,” we took it into our own hands and fostered real community. We met for dinner and drinks once a week and invited women into that space.
We started a small local Facebook group to coordinate logistics and rally encouragement and support. Five and a half years later, that group is around 3,000 strong, with 15-30 women regularly meeting every week (pre-pandemic) to support each other and do life in community.
I am also very active in our school community and a fierce advocate within our district for inclusive practices. I am an advisor to our Special Education Director and work hard within my son’s school, and more broadly with district administration and the school board, to move towards UDL (universal design for learning) and full inclusion for all students with disabilities.
This passion project is fueled by best practice and research. My son is thriving with his typical peers in his general education first grade classroom, with all SDI brought to him and a full array of supports.
I also spend time mentoring other parents around the IEP process, advocating for inclusion and supports, understanding laws and rights around IDEA, etc. I’m in the early phase of developing a Kindergarten Inclusion Cohort to annually mentor a group through the process of the kindergarten transition, to prepare for and advocate for inclusive kindergarten placements, and build a community of parents that will move with each other and support each other through the transition process and beyond.
As Seattle was one of the epicenters of the COVID-19 pandemic, do you have any perspective to share as a social worker living in this part of the U.S.?
It’s funny how much can change in a month. I live two blocks from the Life Care Center in Kirkland that was considered “ground zero.” Our hospitals were maxed out early, my husband has been working from home for about two months, and our kids were some of the first to be out of school.
Fast forward several weeks, and Kirkland (or broadly, Seattle) is no longer headlining much of anything, except maybe the success and commitment of our approach to stay at home orders. The Seattle Freeze [the widely held belief that it is especially difficult to make new friends in the city of Seattle] had offered much practice.
Our area has taken social distancing very seriously, and I would anticipate it will continue to do so, to a greater degree than many other areas. There is talk of schools being online in the fall. But the most revealing thing in all of this has been the focus and importance of recognizing trauma and mental health.
It has struck me, as we’re all facing losses of various kinds, in life, routine, structure, school, work, expected norms, social supports, etc., as well as heightened anxiety and stressors, that we need to be very gentle and gracious with the reality that this is traumatic for all of us.
Everybody is experiencing stress and trauma and loss right now. We all come to the table with different coping mechanisms. Most people are doing the best they can with what they have. [As social workers] we are uniquely skilled at listening and showing up where needs may exist.
Look for those spaces of acute need. Show up or find a way to support others doing good work. Listen to and encourage your family and friends and coworkers and neighbors. Check in and be present and ask the hard questions. People need to feel seen and heard and we all have stories we need to tell right now. They all hold value.
About the School of Social Work
Since the first baccalaureate social work major was first offered in 1968, Colorado State University’s School of Social Work has made a continuous effort to develop and maintain a program that is responsive to the standards of the social work profession, to the needs of human services agencies and clients in the state, and to the land-grant mission and goals of CSU. Our mission is to provide exemplary education, applied research, and transformative outreach to advance social, environmental, and economic justice; promote equity and equality; alleviate oppression; and enhance human health and well-being across local and global community systems.