2017 reflections

As I reflect back on 2017 I am filled with gratitude for the changes, challenges, and the many blessings. The beginning of the year was a shift for me as I went from full time to part time work in an effort to get Bentley settled at the private school the kids attended. He and I had a great time! I took him to two different horseback riding facilities and we volunteered at an animal farm on a weekly basis. During the Spring we decided to list our house on the market and look at homes in a different school district. As many of you know, Arizona ranks among the worst states for education- combine that with a child with a disability and it’s a real disaster. After a couple years of spending endless hours looking at schools and doing research we decided that moving to the neighborhood with the best schools - schools that are known for inclusive practices for students with disabilities- became a priority- especially as we consider long term relationship building. And so Bentley and I spent time preparing the house to be listed and then we spent time house hunting! He was a great buddy to have with me. He gave me his opinion on each home. He also continues to look at houses online and out the car window and I think he thinks we might move annually! Crazy kid! 

 We managed to sell the home on Lee Street and move over to a part of town that’s located by Sabino Canyon. We spent two days moving our things over and then locked the house and took off for a 3 week road trip. We drove to Traverse City, Michigan in two days and spent time with our dear friends up North and also spent days in Detroit visiting many other beloved friends. The kids soaked up the fresh Michigan water, collected sand in their toes, and discovered lightning bugs all over again! David and I don’t regret our move to Arizona, but we do respect it- meaning it was a painful move and we left a lot we had built- returning is a reminder of those losses and an opportunity to reconnect. From Michigan we drove to Colorado and attended Adam’s Camp for the 2nd year in a row- and we have our registration in for 2018! We have found Adam’s Camp to be a sacred place for our family. It’s located at the foot of the west side of Rocky Mountain National Park at a sprawling YMCA camp. We stay in a yurt- sign up for lots of activities and enjoy time together. Adam’s Camp was started by families who realized intense therapies for kids over a short period of time can result on great gains in their lives. Bentley was in a group with 3 other kids with Down syndrome, a school psychologist, a PE teacher who specializes in kids with disabilities, a speech therapist, and 2 volunteers. They do all kinds of activities like swimming, rock climbing, hiking, zip lining, tubing down a giant hill, and they even get to have an overnight! Lily and Clayton attended the siblings program where they do similar activities and work with a psychologist on discovering the strengths and challenges of their sibling, and learning to express themselves to their parents about what their needs are and share where they feel like they aren’t being seen or heard. David and I hang out with other parents- hike, rest, and attend workshops. We love Adam’s Camp! In addition to this road trip we also were able to visit Portland and stay on the Oregon coast with my mom and Kathryn. We continue to go camping- this year finding a sacred secret spot on the Baja peninsula! I think my favorite place in the world is about 7 hours south of us where we spend all day in the sand and in the water and fill our bellies with fish tacos! This is becoming a great place for us to take visitors!

The kids are now at the local school and they take the bus! They are doing really well. We are happy with their teachers and with the school in general. We rest in knowing that we will advocate and push to make changes in this district and the once looming thought of just finding another school option has disappeared. Phew!

In addition to school the kids continue with their favored extracurricular activities. Clayton finished Book 1 of Suzuki guitar. He went to a special camp with his grandma last summer. He is currently in gymnastics- tumbling and trampoline class- but he is eager to start soccer!

Bentley continues to ride horses, do gymnastics, and have speech therapy in the home. He attended a fabulous bike camp last summer and made it in the paper!

Lily continues to play and create games whenever she can! She also started gymnastics this year. We will see what other activities she wants to do in the future! She might start playing violin soon. 

David continues to thrive at his job. He is a wonderful doctor. He is kind, patient, and the families love him. This year he has been part of two large projects. The first, began at the very end of 2016- a palliative care clinic for families with children who have serious long-term, health conditions. Palliative care focuses on relieving the child's symptoms and improving the family's quality of life. The second project- the Down syndrome clinic which began in October. At the Down syndrome clinic a small group of families come and are able to see the audioligist, opthomologist, physical therapist, nutritionist, primary care (David), social worker, and me! I go in with the social worker and represent our local Down syndrome group providing resources and support as a fellow mom! David’s patient population is primarily made up of Arizona’s medicaid program. Having the insurance they have has drastically changed the lives of their children. At a time when health insurance is being questioned and discussed so often we find ourselves advocating and supporting self advocates and families to keep their insurance. Many of the families have children on expensive life saving medications, and in need of supports that are costly- from wheelchairs, to specialized beds, and a variety of other things.

I am excited to share that I will be working part time with a local organization- across the hall from David’s office- named Pilot Parents! They have a grant to provide a program called Arizona Partners in Leadership. Parents attend for 8 weekends throughout 6 months. The topics include the history of the disability movement, inclusion, iep supports, community connections, person centered planning, assistive technology, state and federal policy, legislative process, organizing for change, and planning for change. I attended the program in 2016 and it was life changing! I am so honored and excited to be part of this project.

David and I found ourselves forced in the world of disabilities when Bentley was born in 2008. However, over the years we have realized that his birth was more than just a birth of life- but it was a birth of passion. I had no idea about the challenges and the injustices that families and individuals face. Our world continues to worship strength, independence, and wealth. People with disabilities continue to teach me that our value system lacks. I have learned to see that slowing down, realizing our INTERdependence, and looking to learn from others is so important. I am part of several social media groups that focus on families with children with disabilities- and many with kids with Down syndrome and I have found that many of us were afraid at first, but have quickly realized we are really the lucky few. I have also recently discovered my new favorite quote:

Normal is just a dryer setting. 

 In addition to our commitment to advocacy, medical care, love, and support we are finding self care in the form of running! We will be running our first marathon on January 14 in Phoenix. Though we won’t run together, our desire to see one another cross the finish line strongly is the same! I know we both find the solitude, peace, beauty, and challenges of running to be an important part of our days. We are thankful for the many who support our family both near and far. We are well aware of our own interdependence. We always love reading the letters and thoughts of others- and getting the beautiful cards! Sorry we didn’t get one out this year.

Cheers to a new year- 

 may we face the challenges, 

 soar through the good stuff,
and continue to fight for the injustices around us.

 Peace. 

 the crawford family