Community Building

By Elliott Dale

Elliott Dale is a FACT Oregon Board Member who lives in Lake Oswego, Oregon and is a business attorney. He shared a version of these remarks at the 2017 FACT Oregon Annual Breakfast.

At the heart of what we do, FACT Oregon is about families. As a board member, I wanted to share a little about my family. We are not unique; we are one of thousands of families in Oregon that walk a little different path, because we have a family member that experiences disability.

In this photo you will see my wife, Jennifer, a CPA and currently the controller of a local non-profit and adjunct accounting professor, as well as our daughters Maddie (age 9, 4th grade), and Lizzie (age 5, Kindergarten) and our son Charlie (age 4, pre-K).

I like to think about being a parent of child with special needs as being part of a “club.” My ticket into this club was the birth of Lizzie, who was born with Down Syndrome. The price of admission is pretty steep – constant learning curve, seemingly never-ending series of navigating new bureaucracies and new acronyms, and a new set of challenges everyday. This is not too different from typical parenting, but also, really different.
 
There are very few experts you can turn to, because even though certain disabilities share some characteristics – all our kids are unique, and it’s this special parenting that creates expertise. In this club, you can’t turn in your membership or simply walk away. There is no option to quit. But it is immensely rewarding, incredibly enriching, totally humbling, and none of us would trade places with another family for anything – like all parents.  

In this club, you tend to rely on the senior members to help you navigate your path, people who have already walked the path you are about to. For most new members of the club, you don’t have access to these people before you join. You don’t already know them. But you start finding them quickly. As you go about raising your kid, the knowledge you must accumulate as a parent of a child experiencing disability is mind-boggling. And the complexity and the stakes for your child greatly increase when they start school.

This word cloud is a list naming acronyms you might encounter for disability services. To be honest, I don’t know all of these, and this is barely a start. I maybe know half of them, and I try to pay attention to these things. To effectively navigate through services and programs for their child, parents need to learn dozens of new acronyms, arcane administrative rules and program requirements, constantly fill out paperwork, and coordinate a litany of appointments and meetings. Most often, the meetings and appointments are with people in bureaucracies who are very experienced in the processes and procedures they are administering, and part of their job is to use the process to allocate scarce resources.

Starting out, the parent does not have the preparation, experience, skillset, knowledge base, or tools to effectively navigate these processes. On top of that, there is often uncertainty of what the future will look like for their child. How does a parent know what to expect? How does a parent develop expectations for their child? The reality is, our norms were set up years ago by the community in which we grew up. For most of us, that norm did not include high expectations for people who experience disability.

When I learned of Lizzie’s diagnosis of Down Syndrome an hour after she was born, I had absolutely no context for what her capabilities might one day be. My norms were set up 30 years ago based on my experiences, or lack thereof, of interacting with people experiencing disability. I literally did not know if she would be able to walk, to talk, to count to three. If she would make friends, play sports, do homework. When my first daughter was born, all I saw was her unlimited potential.  When Lizzie was born, I saw the opposite.  Looking back, my ignorance is astonishing, but not surprising. I was a product of my community. My norms were those of my community.

What FACT Oregon does for parents like me is to organize and disseminate information, and empower us to have high expectations for our kids. To teach parents how to navigate bureaucracies and work productively to access resources. To teach professionals how to work with parents to help their kids lead whole lives. To be those senior members of the club who have been there and done that, to train, to teach, to connect with each other.

Lizzie started Kindergarten this fall. She is in a typical Kindergarten class of 22 kids, with the same Kindergarten teacher her big sister had in our neighborhood school. She is the first person with Down Syndrome to attend this school for as long as anyone can remember, maybe ever. And that didn’t happen by accident. It happened because we had people helping us figure out how to make it happen. And encouraging us to honor the expectation that she should have the opportunities her sister and brother will have, for school, for sports and activities, for play dates and for everything.

Lizzie is going to do whatever she sets her heart on – and not because my wife and I are great parents. Actually, it is not about our parenting.  It is about our community.  Your and my community, and the expectations we each have.  Really, it is because of this club, and the examples parents before us have set.  Early in our membership, our family connected with people who helped us to understand it is possible to have high expectations, who understand that disability is natural, and who are those senior members of the club who are going to help us navigate the next step for Lizzie and the step after that. That’s FACT Oregon. FACT Oregon is at the forefront of changing the norms of our community by raising the expectations for us and for our loved ones experiencing disability.

Because of all that I have learned, I am excited about Lizzie’s opportunities to lead a whole life in our community, and importantly, I am also excited for her classmates this year and all the years from here. They will have a completely different experience and set of norms around experiencing disability than we do. They will change their communities because of their experience.

This holiday season and beyond, I am asking you to join me in supporting FACT Oregon’s mission and become a regular monthly donor at $25 a month or whatever level fits you. Supporting FACT Oregon has ripple effects far into the future. We know that 1 in 5 people experience disability, and the issues are bigger than all of us, yet each of us can make a difference. Please join me in helping FACT Oregon reach more families!

Donate to FACT here