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!
By Roberta Dunn
When do you start preparing for your child’s life after school? Immediately!
Parents with adult children had shared with me that preparing for my son’s life after school should start while he was young, and that it was more work toward an attitudinal shift than it was initial skill building. I’d like to pay it forward and share what I learned.
Teaching Todd to unload the dishwasher as a function was one thing, but to teach him that when you belong to a family there are expectations that everyone help was much more important. Teaching Todd to do a task, like walking the dog, promoted independence, but greater than that was teaching him that the Strawberry Frappuccino he enjoyed cost money and that the money he earned walking the dog was money that he could spend if he chose to buy another.
The overarching attitudinal shift that needs to take place is for us to make sure that our children appreciate that experiencing disability doesn’t make them “special.” We’ve worked a lifetime to ensure that Todd appreciates that his experiencing disability is a natural part of who he is and that, though he might need additional support of one kind or another, the expectations we have for him differ little from those we have for his brothers: be honest, be kind, do your best at all you do, work hard, and be smart with your money.
If we don’t experience that last area of attitude shift we can be lulled into a belief (and instill in our children) that they are entitled to lives of ease and comfort, with little effort and low expectations. We become comfortable with a pie slice of a whole life afforded by “special” camps, day programs, and providers, and we deny our sons and daughters access to the whole pie (a whole life, in community).
When I ask Todd how his day at work went his reply is remarkably typical. He appreciates that black Friday and sporting events are busy days at work, that some days the walk home from the bus is wet and rainy, that it is gross when you get other people’s food on you while washing dishes. And he knows that the best day is pay day!!
For additional resources on Transition to adulthood/Employment, visit our website.
To read two additional blog posts written by members of our community regarding employment, click below:
By Ava Bartley, Advocacy and Engagement Director, FACT Oregon
I had the good fortune of joining FACT Oregon as its new Advocacy and Engagement Director, right before Oregon’s 2017 legislative session began, which gave me an opportunity to jump in to my new role with both feet and hit the ground running.
Although new to my job, as the parent of a child who experiences disability, and as a former FACT board member, I was not new to the transformative work FACT Oregon does every day across the state to support and empower families to dream big dreams and pursue whole lives in their communities for their children experiencing disability.
Somehow, despite starting the session with a $1.8 billion shortfall in the 2017-19 state budget, Legislators managed to balance the budget by the end of the session while avoiding most of the devastating cuts that were originally predicted for human services, education, health care and other critical areas.
As I reflect on the session, I think one of the most important takeaways for me was to never underestimate the power of our individual stories. I had many opportunities to witness first-hand the tremendous impact the stories of families and self-advocates can have on policymakers and legislators. They truly want to hear from their constituents and people who are willing to share their personal stories and experiences with them.
Perhaps most gratifying was to watch families who had never been to the Capitol before or who had never had an opportunity to meet with their legislators. What a privilege it was to help equip them with the information and support they needed to feel confident in telling their family’s story for the first time . . . and what a thrill it was when they caught the “bug” and came back to do it again later in session!
Looking ahead, I will be shifting my energy and attention to several exciting projects in the works that will provide new opportunities for individuals and families to engage with our organization statewide, including launching a new volunteer program and developing a comprehensive family leadership program. I will also be preparing for the upcoming short legislative session and continuing to develop resources to equip families with the information and support they need to feel confident and empowered to engage in advocacy and systems change efforts.
Many thanks to the families who wrote emails, made phone calls, came to an advocacy day at the Capitol, attended a training, met with legislators, and shared their stories! I am also extremely grateful for the support and collaboration we enjoyed with many other organizations in the disability, early childhood, children’s and education advocacy communities that helped us in our mission to keep families informed and engaged.
Enjoy the last few weeks of summer . . . and as always, be prepared, get involved, be heard!
By Lorinda Christianson
My son Ian and I decided to compete in the All Ability triathlon on August 12th. Ian has only been riding a bike for a year, ever since he attended NWDSA Bike First camp last summer at Concordia College. We love to swim in our pool during the summer, and although Ian has never had traditional lessons, I have taught him a bit and his love of the water led him to be able to swim. I recently started athletic training myself and lost 15 pounds this past winter, so when I learned about the Tri4Youth I knew I really wanted to participate with Ian.
It was good for him to have my support during the race and it was fun for me too. I was able to use this triathlon as a way to get Ian to train with me and push himself more. We would do training days where we would ride then run. When it got too hot and smoky outside we used our spinning bike and treadmill to keep training! As I continued telling him about our upcoming race, it really motivated him to keep going and continue training. Because of his Autism he doesn’t really care about winning but he loves to participate and he really looked forward to getting a medal.
I was relieved the weather wasn’t too hot on the day of the event because I was concerned about how we would do in the heat. It was harder than I thought to run with wet shorts on but we really enjoyed the experience! Even though we were leaving town the very next day I really wanted to participate in the Tri4Youth and I’m so glad we did! We are already planning for next year and will continue to train and keep active this winter so we are ready for the next All Ability Tri4Youth!
Kaliah is thirteen years old and about to begin eigth grade. She has three siblings, ages eight, nine and ten, who all competed in the triathlon alongside her. She enjoys reading, going outside, making slime, and singing. Kaliah sat down with her mom, Nicole, and shared some of her experiences at the Tri4Youth.
Nicole: What did you first think when you heard about the Tri4Youth?
Kaliah: At first I was a little unsure about it. I’ve never done one before.
Nicole: How did you participate in the Tri4Youth this year?
Kaliah: I was on the KDS Rockin’ Sibling Team with my 10 year old brother and 8 year old sister. We all did it together. For the swimming portion, we pulled my sister in a raft.
Nicole: Were you nervous?
Kaliah: I was worried about the biking portion because two miles seems like a lot of biking but after I completed it I felt really good about it.
Nicole: What was your favorite part of the Tri4Youth?
Kaliah: Probably biking because it was kind of a challenge but the three of us (KDS team) did it together.
Nicole: What did you do to get ready for the Tri?
Kaliah: Well, for the running we went to the track and ran a full mile. And then every night a week before the tri we went biking for a ½ mile. For swimming, we went to THPRD aquatic center for an open swim session and practiced there.
Nicole: Would you do the tri next year?
Kaliah: I would!
Nicole: What would you tell those people who weren’t quite sure if they could do a tri?
Kaliah: I would say that if you aren’t sure about it, continue to think positive because you do anything you put your mind to and try in the “tri”!
By Jennifer Tenario
The All Ability Tri4Youth was my first time volunteering with FACT Oregon. I do not have a close direct personal connection to anyone who experiences a disability, and therefore, did not know what to expect going into this event. I have, however, participated in several dozen-sprint triathlons and was so excited to cheer on the next generation of athletes. To me, sports and exercise have always been about the joy of community and working to be a better version of yourself (a prize you win just for showing up and trying). The youth who competed at the Tri4Youth showed courage, strength, and determination – and the parents and teammates displayed such a strong sense of community and love that propelled each athlete forward. It was such a joy to experience and also an inspiration to see the hard work and love families put in daily to increase awareness and community.
By Asena Lawrence
I am very grateful to have had the wonderful opportunity to volunteer at the All Ability Tri4Youth. People who experience disabilities are among the most marginalized in our community, with perceived limited opportunities. This event focused on the athletes’ abilities and accomplishments! To attend an event dedicated to celebrating youth experiencing a disability, their family, friends and community was incredibly fulfilling and motivating.
My volunteer role was at the snack booth at the end of the course. I was able to witness and cheer on the youth as they completed their race and then headed over to our booth to get drinks and snacks. They were exhausted; yet, they were shining and full of smiles! It was clear that they had a great deal of fun, and were very proud of themselves. Many of the youths’ families celebrated with them and their parents, siblings, and friends were clearly very excited and proud of them as well!
March 1, 2017
By Roberta Dunn, Executive Director
This is language we are beginning to use more and more at FACT Oregon, so I thought I would share my thoughts on why.
For far too long, families raising a son or daughter experiencing disability have been lulled into believing that their child was special, experienced special needs, and was entitled to a special life. That often resulted in “special” programs: educations provided in segregated classrooms, placement in institutions for adulthood, and limited connection to one’s community.
I will be frank: this is a falsehood. When we buy into this false belief, our children are compartmentalized and recognized as nothing but bundles of disability. They are taught to be grateful for the little slice of a whole life they are exposed to versus the opportunity to design, develop, and pursue what you and I take for granted every day: a whole life!
I share this with you today to honor a woman who did so much for Oregon parents raising a child experiencing disability. Karen Staley dreamed big dreams for her son Jimmy, and pursued a life that would be beautifully ordinary. She aspired for Jimmy, who experiences disability, to have what every parent wants for their child: health, housing, employment, and a strong sense of community and belonging. To this end, with unfaltering determination, Karen advocated for there to be services available to support individuals in their pursuit of a full life in community.
The result was the Staley Agreement (2000) which secured the availability of services that supported integrated lives in community without languishing on never-ending wait list. Fairview Training Center, Oregon’s institution for individuals experiencing developmental disability, closed for good the same year that the Staley agreement was reached. You and I owe Karen and other tenacious parent leaders like her a debt of gratitude, for it was their desire to dream big dreams for their children that changed the lives of our children experiencing disability.
Karen passed away in 2013 having lived a life that was beautifully ordinary, doing what I understand she enjoyed immensely. Today I learned of her son Jimmy’s passing, and while my heart is heavy, I write this celebrating that he too, passed away have lived a life that was everything his family hoped for. He owned a home of his own, enjoyed working in community, and was embraced by many in his community. Jimmy’s life shaped the dreams I have for my son Todd. All told, Karen’s life demonstrated like nothing else that we must be the change we want to see in the world.
In loving memory of Karen Staley and Jimmy Staley.