It Ain't Easy Being an Advocate!
Advocacy comes in all shapes and sizes. There isn’t one tried and true way to advocate, which is a great thing! In 2021 we are blessed to have so many platforms that never existed until now. Those are, but are not limited to: blogs, local organizations for citizens with disabilities, school system advocacy groups, national and world health organizations that cater to certain diseases and/or treatment options with published research, podcasts, social media, faith-based organizations, local parent groups, and of course political groups which bridge the gap between elected officials and its constituents and the list goes and on.
While there is no “correct” way to advocate, the reality is that if you are raising a child who has unique needs which differ from that of a typical child, the likelihood that you will not have to advocate for your child in some way or need guidance from others who are more familiar with the process of ensuring rights to fair treatments, education, healthcare or even accessibility in the community, is slim. Heck, even those who are raising typical children lean on the support of other parents who have been there, done that. This is the “village”, we reference when you hear, “It takes a village to raise children.”
As a former special education teacher, who at the time had no children of my own, I dove deep into advocacy hoping to help parents be a voice for their children. Truthfully, I was not the most popular teacher on campus because frankly I cared more about getting my students what they needed rather than if I was well liked. And it worked out; I just naturally kind of flocked to the colleagues who were likeminded and open to learning about kids with disabilities and their special needs. There were times when I asked them to be open minded and accommodating for the students with unique and special needs. It’s easy to tell who is going to work with you or who is going to buck the process the entire time. I can say that I had the pleasure of working with some phenomenal teachers who really wanted to learn how to meet the needs of all their learners. It was personal to them. I still think of fondly of these teachers and admins, because little did I know they were teaching me as well.
Fast forward to becoming a parent of a medically complex child, I now had to put all my training into use for my own kid. My own child would not have a voice if her father and I did not speak for her. Not only is she medically complex, but she also has developmental delays which significantly affect her cognition and mental abilities. There are some things I have
learned about advocacy within the past 6 years of parenting Ella Grace that I would like to share with you. These are my experiences and my mistakes that hopefully you can learn from. So here is part one of my advocacy journey in the medical world.
I have said time and time again that 2021 is a great time to live in regarding medical advances. If you think about where science is today, it is truly remarkable. I think about all those health care professionals, some of whom spent a decade in school just to finally graduate and then start a career in health care. Science and technology are moving fast. But I guess like with anything, as a healthcare professional you need to decide if you have the time or even the interest to keep educating yourself on current research and treatments. This is where parents come in.
Historically, in the Trisomy 18 community there has been a level of distrust between families of children with Trisomy 18 and health care providers. Some of the biggest examples of distrust that stand out to me are where there were cases of children having DNR’s (Do Not Resuscitate Orders) placed on the child when in patient, Slow Codes (the opposite of full code, limiting the duration, intensity, restricting resuscitative measures to save a life), being told a child is not a candidate for any sort of surgery especially cardiac, simply because of the chromosomal abnormality alone (the mentality being he/she will die soon anyhow so why bother?). These cases have certainly put parents on edge when they receive a T18 diagnosis. Some of the parents who experienced the above fought like hell and were successful in gaining interventions. Others fought and failed. One can certainly understand a parent’s caution when seeking specialists.
In our case, what has helped us to successfully assemble a team of 8 specialists including her pediatrician, is just being open and honest with the physicians in terms of our expectations. We ask them, “Are you on Team Ella Grace or not? Are you invested in her or will there be a roadblock in getting her the treatment she needs and deserves as any other child? Most importantly can we work together?”
Parents, you must remember when it comes to rare diseases and syndromes, they are called rare for a reason. A physician could have practiced their whole career and never treated or witnessed the things that your child presents. So, they may in fact not have all the answers. Oh, and they aren’t God so keep that in mind too. Doctors do not perform miracles. You as the parent can be a huge asset in your child’s care. Often, I see parents get very frustrated because doctors are giving or denying treatment options based on antiquated research. If that doctor is not actively treating a child like yours, then how is he/she supposed to have all of the answers? Parents, it is your turn to help the doctor help your child. Now some doctors are open to being presented with true research, scholarly reviews from peers and medical journals. Others are not. And I cannot answer why that is. But a Facebook post about a kid living and thriving with the same syndrome is not enough to influence a doctor’s treatment plan. And thank God for that! I don’t want a physician treating me based on Tic Tock review. Remember that doctors have multiple patients with multiple health issues. No way can they be the experts on all things.
Now onto the controversial topic of heart repair and children with chromosomal abnormalities. I will just say this, it is one thing for a child to be denied heart repair because of a Trisomy 18 diagnosis alone, it is another if a child with a Trisomy 18 diagnosis is denied heart repair based on the child’s current health, how the defect presents itself, data from a heart cath and a myriad of other pieces of data. That to me is a fair and just denial of repair. No cardiothoracic surgeon worth his/her salt is going to accept a heart patent with a chromosomal abnormality if they have the slightest inclining that the patient will not survive the procedure or post op. Surgery always comes with levels of risk, but surgeons like to be confident they are doing more good than harm with repairing the heart. There are some parents who are convinced their child has been denied based on a T18 diagnosis alone. To them I say what does the medial data say? If you have no data, seek second opinions. Travel if you must. Gather some good medical research on cardiac interventions. The doctors need to see the science, not the Instagram post.
I pray a lot! My specific prayers have always been for God to lead us to the right medical professionals that are a fit for Ella Grace. And for the grace to also know when it is time to say goodbye. I am 100% certain that the Lord has delivered. In my prayers for discernment, I also had to make decisions of when it was time to move on to other providers. I thanked them for their service to Ella Grace and knew that my loyalty ultimately had to be to her first and foremost. I pray that you too can find those Earth angles doing God’s work with your blessed child.
Maria Revere is a former special education teacher of 12 years. She is a wife of Shawn and mother of 3 children SJ age 8, Remy age 7, and Ella Grace age 5. She currently resides in Cajun Country of Lafayette, Louisiana. She works with her husband’s business The Vinyl Countdown, and is also a Beauty Guide for LimeLife by Alcone. Maria is a member of Council for Exceptional Children, SOFT (Support Organization for Trisomy 18, 13, and Other Related Disorders), LaCan (Louisiana Community and Family Support Services) and an active member of Holy Cross Catholic Church. She loves having family dinners, volunteering at her children’s school, church, gardening, experiencing live music & festivals, and raising chickens.