When I started DAMES three years ago, I thought the answer was simple. It was mindfulness, exercise, and access to knowledge. But over time I listened to my members and learned from them. In doing so, the concept of self-care for me changed in unexpected ways.
Caregivers raising a child with a disability face many challenges:
- Dealing with complex systems of care, isolation
- Dealing with complex medical issues
- Dealing with increased problem behaviors
- Challenges with finances
- Challenges with relationships
- Challenges redefining their new “normal” and their place within it
It is a total breakdown of the protective factors we thought we had securely in place.
It is not enough to say- hey mom, I know you are stressed and have all this anxiety, but here is a guided meditation and a Pilates class; you’ll be okay.
That was a grave miscalculation on my part. After listening and learning, I’ve discovered that what is needed is for caregivers are programs and projects that help parents rebuild their protective factors. It is the first critical step of self-care.
During COVID, we at DAMES explored this question- how do you build up protective factors? We partnered with Prevent Child Abuse Arizona, and we wrote and were awarded a grant from the Division of Developmental Disabilities Planning Council to do just that- create programs that will help parents rebuild their protective factors.
This work will include a continuation of teaching our After the Diagnosis program—a 4-part series created with Denise Baker of Life Quest Counseling and Consulting. After the Diagnosis helps parents rebuild their resiliency, redefine what is “normal”, and write their next chapter. It also gives them space to forge deep relationships with others in their situation.
The grant will include the creation of a new seminar for grandparents. Very often, grandparents are just as lost as we are. What is their role? How can they help? What is helpful, what isn’t? Yet, there isn’t a program in place that allows them not only to work through their emotions, nor one that helps them better communicate with their child. We know that if caregivers have a parent they can go to in times of need, stress, anxiety, and loneliness can be reduced. That is the goal of this new seminar.
We will also re-write the Protective Families Framework to include more examples from the disability community and teach those concepts to businesses who work with our population. As a mother of two children diagnosed with autism, I can’t tell you how many times organizations tore down my protective factors instead of building them up. Companies can make small but significant steps to help parents, but they have never been taught how to care for caregivers. Teaching organizations how to build up caregivers’ protective factors is the third objective of this grant.
Life is about growth, learning, and challenging your assumptions. It’s about listening to people when they tell you that what you’ve built isn’t hitting the mark. It’s about adapting. As DAMES Charities Inc. grows, our commitment to you is to continue to grow, adapt, and listen. We hope that these programs are a step in the right direction in creating self-care caregivers really need.
