Remember when you first held your baby? You felt so much love, crazy love and joy. You knew the world for you would always be changed because of this love.
And, if your baby was given a diagnosis that they will experience a disability during their lifetime, NOTHING CHANGES! Nothing. The love is still greater than any love you’ve ever known. What changes is the fear and anxiety that comes when your child receives a diagnosis, any diagnosis.
My daughter is Ellie, and her diagnosis happened to be Down syndrome. The fear and anxiety does not come from loving your child any less or seeing her any differently, it comes from your fear of the lens the WORLD will use when they look at your child. The fear that they will see your child as less than, broken, not smart, not capable or with pity. The fear that they will not welcome your child into playgrounds, classrooms, jobs, and their surrounding communities.
Fear of the unknown can create terror in you. You know you will do anything humanly possible to ensure that your child will have a joyful, full life and be able to share her gifts with the world!
You will also do all you can so that the world’s lens is changed. You want the world to be able to see the perfect, amazing human you were blessed with. And then, you will want that lens to be changed not just for your child, but for all perfect people experiencing disability. This lens is changed by your child being a full part of his or her community, and having relationships.
You KNOW you will do anything in your power to make sure your child has the same opportunities as any other child. You KNOW that within every cell of your body. You’re just not sure HOW.
When Ellie was born, I was a new mom to the world of disability. I had no doubt I was blessed and that Ellie would be a bright light in the world. I just wasn’t sure how I was going to support Ellie in a world that still segregates people with disabilities into different classrooms, even sends them to schools outside their own neighborhoods. I immediately began to see how many places weren’t welcoming.
For our family, that’s when FACT Oregon entered our world. I went to a family training session and met with a family who was already doing it! Not only were they creating a whole life for their son, who experienced disability, but they were willing to do anything they could to help our family along our journey. And help they did! Enter hope!
From the time Ellie was a toddler, she had the same experiences other kids had: typical preschool, swim lessons, gymnastics, Sunday school; she enjoyed the same things all other kids were enjoying. But when kindergarten rolled around, our neighborhood school did not have children experiencing disabilities in their classrooms. In Ellie’s case, not only did they want her to be in a segregated classroom, they wanted to send her to a different school, away from our neighborhood school that her brother was currently attending.
I went back to FACT Oregon for further support, and they were there for us. They helped us learn about Person Centered Planning and how to educate the school district of Ellie’s gifts, strengths, what works, what didn’t and how she could be successful in a General Ed. classroom. How she not only COULD but SHOULD be in a classroom, in her own neighborhood, with her brother and her typical peers – learning, growing and being a full member of her community. The families I met at FACT Oregon trainings and family events had the same vision for their families: of their child leading a WHOLE life in their community. Their vision was not just for their own families, they intended to touch and EMPOWER as many families as they possibly could. And they were doing it!
Meet the Miller Family! Watch the video above!
Over time FACT Oregon has grown from supporting 60 families in the Portland Metro area to becoming a statewide organization that has supported thousands of families. But, the work is just beginning. There is so much more to be done. More staff time and money is needed at a time when state and federal budgets are shrinking. That is why we are asking for your support. We can assure you all funding we receive goes straight to the work of FACT Oregon helping families.
Our family’s journey has not always been easy. Ellie is often misunderstood and underestimated, and we have heard that many people don’t want “those kids” in their classroom. BUT we’ve also seen transformation with teachers, principals, students, friends and neighbors, and it has been beautiful.
FACT Oregon gives families the ability to dream big dreams for their own children, and the tools to do the work to make sure this is true for all families. We so very much appreciate your support in these efforts!
Please consider supporting FACT Oregon with an End of Year Donation this holiday season!