It was five years ago this month that we first learned of our son's diagnosis. I was almost 20 weeks into an otherwise incredibly no-frills pregnancy when a bit of bloodwork indicated that Malachi would be born with spina bifida. It was almost smack-dab in the middle of national Spina Bifida Awareness Month, I would later learn. Perfect timing!
Learning about Malachi's diagnosis of a congenital disability was, of course, earth-shattering, as one would expect. Becoming a parent, by itself, is a big deal. It's a huge deal! But, simultaneously earning the titles of parent and de facto nurse, therapist, pharmacist and medical researcher is, as one might expect, life-altering in a way that is impossible to convey to those who have not themselves walked that path.
And, of course, there are as many ways one can react to the news of their child's diagnosis as there are people and personality types. People react differently. Understatement of the century, right?! Of course, people react differently!
Me? I went immediately into hyperactive hyper-focus mode. I learned everything I could about Malachi's diagnoses. I joined all the parent groups. I connected myself to every nonprofit, community organization and advocacy association related to his specific diagnoses, childhood health, and developmental disabilities, across the board. I subscribed to every newsletter.
And, through that work, I took my first step on the path of becoming a parent leader in the field of family caregiving and disability parenting.
What is a parent leader?
A parent leader is, simply, someone who is involved in leadership and/or advocacy work around parenting, caregiving and issues that impact the health and wellbeing of children. Parent leadership is especially relevant for the community of parents and family caregivers of children with developmental disabilities and complex medical needs.
Parent leaders may be involved in leadership through family support groups, advocacy and education in their local school districts, fundraising for children's hospitals or non-profit organizations serving youth with disabilities, or any number of other activities. Parent leaders are essential, committed and driven activists who connect with their elected representatives. They share their stories, and they advocate for policy changes that will benefit those with disabilities, their families and caregivers.
So much positive change has come about because the parents, especially the moms, of children with disabilities decided they simply would not accept their child having fewer opportunities than their non-disabled peers.
Moms are pretty f-ing amazing in that way, if I do say so myself.
When we find our voice, where our kids are concerned, we are a force of nature.
Anyway, fast-forward five or six months: Malachi was born and hanging out at Seattle Children's Hospital, continuing to receive the care he needed before his first discharge. I was living at the hospital with him, sleeping bedside and filling my days with self-education about his disability, the medical care he would need when we were able to bring him home, and the laws and policies of my state, and the country, that I learned would have a direct impact on our lives, in every way imaginable, moving forward.
I will tell you, for those only tangentially connected to disability policy, and those who have never really had reason (so far) to take a deep dive into the field: Once you start looking into programs and services, rules and requirements, it is damn near impossible to *not* be outraged. As a general matter, the systems and programs that are supposed to serve as a safety net in this country for those who need them, are wholly lacking, full of gaps and, mostly, outright embarrassing. When these policies begin to impact you or your family, and you realize how utterly asinine things are in this country, you find yourself growing furious-er and furious-er. (I hereby declare "furious-er" a word if Webster's hasn't beat me to it.)
As I learned more about the care system -- healthcare, disability policy, the overall lack of support for family caregivers, etc. -- I found opportunities to get involved in advocacy and leadership. I said "yes" to getting involved in everything I could. I felt that I needed that steep learning-curve that only a high level of involvement could provide. My son's future depends on solid policies and systems that work for people with disabilities. My future, and my husband's future, depends on policies and systems that work for the caregivers of people with disabilities. I understood that then, and I know it is still true.
So, I said "yes."
And I kept saying "yes."
I said "yes" to the WA State Parent Institute of Engagement (PIE), a flagship program that trains parent leaders of young children receiving birth-to-three/Early Intervention services.
I said "yes" to The Inclusion Academy, hosted by The Arc of King County (Seattle), focused on inclusive schooling and special education policy.
I said "yes" to the Advanced Leadership Academy, run by a state-wide organization, focused broadly on disability policy and training community leaders to step into the role of legislative advocates.
And I said "yes" to signing on as a two-year trainee at the University of Washington's Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, a national movement to train the next generation of leaders working in disability related sectors.
Soon, I was involved daily in advocacy phone calls, meetings with legislators, and workshops to train other parents for leadership roles. I was being asked to give presentations, to speak at fundraising events, to serve on nonprofit boards, and offer workshops at professional conferences. I was speaking to news reporters and writing articles for national outlets.
That is where I am today, and I *love* it.
And it is all due to the fact that I recognized very early on in my parenting experience that it is absolutely critical that family caregivers step into their role as leaders and advocates.
If you are a family caregiver: this is your invitation and encouragement to get involved. Our community needs you. And you have all of the skills you need to be a leader. You are likely already a leader in so many ways. Now is the time to claim that title.
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