The more I delve into the world of advocacy for children with learning diferences and other special needs, the more I’ve been thinking about what advocacy is really all about.
As parents like me work to create change in the form of better access to appropriate services, reduced stigma, improved special curriculum, etc. for our children with differences, we are also developing excellent advocacy skills. The question is, what will we do with these skills to make a difference beyond our own cause?
Read my latest piece (below) about how one mom is taking her parent advocacy to the next level – by contributing to the fight for all kids, not just her own.
Once an advocate, always an advocate. I’m not sure if that’s an “official” saying but, it’s definitely true. The more parents I meet along my journey as a parent advocate for my two children with differences, the more I find that, like everything in life, practice makes perfect. And, once you perfect a skill, it’s easy to apply it to lots of situations.
As a parent advocate, once you realize you have that inner push to stand up and say, “That’s not right,” or “Someone ought to change that!” you find yourself saying it more often, and in more arenas, than you ever thought you would.
Take my new friend, Cindy Wilkerson, whom I met through my Texas school district’s (RISD) parent dyslexia education group (PDEG). Cindy, the mother of four children, started out her advocacy “career” in a place that many of us would not choose to be. Cindy and her husband served as foster parents for children in the Dallas, Texas areas through Child Protective Services.
I got to know Cindy when she reached out to me recently in response to a post I wrote about the RISD’s dyslexia program and through emails that I sent through the PDEG email chain about it. Cindy, the mother of two children with learning differences, is also the mother of two children who were adopted through the foster care system.
I don’t know about you, but the stories I have heard from parents about foster-to-adopt are often tough to hear. The children often come to you neglected, abused, in need of immediate unconditional love and often medical care that foster parents feel hard-pressed to give sometimes within a very short period of time.
When we first spoke on the phone, Cindy explained to me how difficult it was to work with “the system” in many ways, but especially to get her foster kids timely medical care (almost always through Medicaid), and how many foster parents are regularly forced to use ERs for something as simple as sick visits or even dental work due to a lack of local resources that provide pediatric, Medicaid-based care. As an advocate for her foster kids, Cindy often had to speak up (and ruffled more than a few feathers in the process), to get them the care they needed when they needed it.
“Somebody’s going to save this child and I’m not going to be quiet until they do,” Cindy shared about the many occassions where whey had to stand up for her foster kids, insisting that they be seen in ERs so that they could receive medical attention before they were removed from her care. “Sometimes I would only have them for a couple of weeks,” she explained, “…and many of these kids were medically fragile.”
As part of this conversation, Cindy invited me to a luncheon we attended on Feb. 9, which was both hosted and sponsored by the Children’s Clinic of Richardson (CCR) in conjunction with the Coalition of Nurses in Advanced Practice CNAP. The CNAP is a coalition of Texas-based organizations working to make healthcare provided by Advanced Practice Registered Nurses (APRNs) more accessible in Texas.
A regular client of the CCR, Cindy was asked to speak before a group of healthcare providers, hospital administrators and state legislators about her personal experience as a mother who regularly receives care for her children at the clinic.
While the luncheon speakers were mostly doctors, nurses and coalition members educating politicians (and myself) on why they feel APRNs should have more freedom as they practice in standalone APRN-owned and operated clinics like the CCR, Cindy was the only speaker who provided a parent’s perspective on the issue. And, in a room full of people who were not walking in her shoes, this was no easy task.
I watched as Cindy bravely shared intimate details about the heartache and triumphs of both fostering and adopting. She explained how, before she had found the CCR, she had waited hours for her foster children to be seen in the ER for something as minor as an ear infection. She shared about how she would call around from ER to ER to see which one had the shortest wait, before finally finding the CCR clinic, where APRNs like CCR owner Marty Strong could treat her children, give them the attention they needed, and accepted Medicaid.
“I still to this day have it in my heart for nurse practitioners because though my whole time (as a foster and adoptive parent) doctors don’t always have time for the needs of my children … and don’t have the time that I need as a mom to get it.”
Cindy went on to say, “My kids are different. And I don’t know why, but I’m their mom. And I have to stand up for them.”
What did I learn from my visit to the CCR? I definitely learned a lot about how nurse practitioners can help serve the indigent and underserved population in Texas and beyond. And I learned a lot about both sides of the argument between doctors and APRNs about what is safe, who should have the authority to write prescriptions, make diagnoses and provide this type of lower-cost, easy-access care.
But, what I learned most was while listening to Cindy, a former foster mom, now adopted mother, and forever parent advocate. What I observed while in that bright, well-run children’s clinic with colorful wall murals hand-painted by loca teens – is that advocacy truly never ends. Once an advocate, always an advocate.
Cindy came to the clinic that day not just to help her own kids, but to help other kids just like hers. Cindy’s advocacy didn’t end once her kids left the foster-care system. It had only just begun.
There’s always going to be someone out there who needs your help. There will always be groups of people in our nation who are overlooked and underserved. The question is, for those of us who have been through (or are currently in) the trenches – how are you going to use your advocacy skills to make a difference? If you stop with our own cause, then you’re wasting valuable tools that you’ve worked so hard to get.
Or, you might advocate to death to get your kids out of one awful situation, only to find them one day stuck right in the middle of another. But, as a parent – and as an advocate – you don’t give up. Instead, you just take up the new fight, using the skills that you’ve developed along the way. And, just like Cindy, you’ll inspire other advocates to keep plugging away.
It doesn’t even really matter what you’re fighting for. It only matters that you’re willing to take up the fight for someone who can’t fight for themselves. You’re an advocate, after all – like it or not. And that’s what advocates do.
Want to learn more about how to become the best advocate for your child with learning differences or special needs? Visit Lyn’s website and personal blog DifferentDoodles.com to find out more. You can also follow Different Doodles on Facebook and on Twitter @DiffyDoodles.