Thank you Northwest Down Syndrome Association

A Vision, A Voice, An Amazing Empowerment Organization

My introduction to the Northwest Down Syndrome Association (NWDSA), a small, non-profit organization in Portland, Oregon, was shortly after my second daughter was born in 2003. Her Trisomy 21 diagnosis, an online search, and my need for information lead me to contact them. Soon after, I received a package in the mail and inside was a gift from the NWDSA. They sent me their New Parent Guide, a book that congratulated, was refreshingly positive, yet provided the much needed up-to-date information I was seeking. Everything I had gotten my hands on up to that point online or from the library was outdated, dry, religious, or only medically focused pieces with dreary overtones.

Vision: The NWDSA New Parent Guide was the first resource about Down syndrome (Ds) that enlightened and excited me. It included success stories, positive affirmations, full-page color photos of local children with Down syndrome and their families, current data about the lives (from birth to adulthood) of individuals with Down synrome, medical possibilities available to individuals with Down syndrome, a preventitive care chart about different health and well being check up times, and much, much more. This gift brought me hope, comfort, and cemented the feelings, hopes, and dreams I had about my daughter, Down syndrome, and what being a parent of a child with a Trisomy 21 diagnosis meant to me. I was so thankful I felt like I finally had some footing. 

Then we were immersed in disability world: it includes appointment after appointment, from the pediatrician to the cardiologist, to home visitors providing services such as an occupational therapist and cacoon nurse. A service my daughter received outside of our home was a cross-disability early intervention group provided by my county. This is where I met a woman with a baby boy with Ds about the same age as my daughter. We quickly befriended each other and decided to start a play group of our own, for families like ours that included a child with Ds. We felt we could learn a lot from the experiences of other families with older children and wanted to share our experiences with families who just had a baby with Down syndrome to help them. From the park to a free church location Open Arms play group formed into a supportive, comforting resource for myself and families that attended. We applied for and received a grant to purchase gym mats and therapeutic toys for our group. 

Voice: Our next step, in 2004, was applying for a grant with the NWDSA to support and run our monthly playgroup for children with Down syndrome, and their families, in our community. Our request was approved and Open Arms continued to grow. Our play group soon needed more funding to continue to provide snacks and NWDSA information about upcoming events and trainings but we were fortunate enough to collaborate with NWDSA, work under their umbrella, and lead the play group with their support. It was then that our group began to provide resources, like the New Parent Guide, to new families just as it had been gifted to me a year earlier. 

Empowerment: Months later, 2005 was upon us, I accepted a position on the NWDSA board of directors. Being involved in board decisions, learning from NWDSA trainings, advocating in Salem, Oregon, Olympia, Washington, and Washington, DC, to coordinating socials and the 2008 Buddy Walk, and much, much more, paralled with watching my daughter grow, learn and become an advocate for herself was one of the most empowering times of my life. No job I have had has ever made me feel the way I felt doing the work of the NWDSA. It was a huge growth period for me and my family over the five year span I was involved on the board. I resigned when I decided to go back to work and attend college full time. 

A handful of years later, here I am at a place in life where I have small amounts of time to do the work I love, the work of the NWDSA. Creating, nurturing, and celebrating is what makes NWDSA such an accomplished organization that is able to touch the lives of thousands of families and individuals with Down syndrome and other disabilities. The insight, love, and passion this group puts forth is often what helps center me on my journey and gives me zest for the future. I have come back to work with the NWDSA on an exciting new project. 

I have collected stories from families in Oregon and Washington who have a child with Ds that has had a procedure on their heart. About half of children born with Down syndrome will require some type of medical procedure to correct a congenital heart defect as my youngest daughter did at four months old. During this time, early on in my daughter's life, I had a tremendous desire to connect with other families with children with Ds and felt so alone during her open heart surgery because I didn't know anyone who had been through a heart surgery with their child and I didn't have their stories to give me confidence. Through collaboration with the NWDSA last year I realized my great need then of a personal recollection from another family is just what families today still desire and so the heart stories booklet was developed. The last few pieces of the booklet are coming together and more work needs to be done around sponsorship but knowing that NWDSA will be able to provide a booklet of personal accounts to a family searching for comfort through others experiences is another reality that NWDSA has made happen. 

Finding and being involved with the NWDSA was exactly what I was looking for and needed after my daughter was born and diagnosed. The NWDSA has always been my go to place for the information I have needed each step along the way. Today, is no different and I will turn to NWDSA again and again for trustworthy, local resources, trainings and social events. This group helped me: make my vision for my daughter concrete; gain a voice to advocate for my daughter and others and; become empowered and empower my daughter. I look forward to future work with NWDSA and all of the rewards that come along with being involved.