I mentioned in a previous post that we were quiet about Everett’s diagnosis on social media for about a year. To add to that, I’ll have to confess…I took a long social media break during those early days. It was just too hard. I was surrounded by friends who were having typically developing babies and doing typically developing things. At the time I felt like I couldn’t relate. And I also felt very alone. So I chose to focus on my new child and everything that came with his diagnosis, rather than social media. I also chose not to reach out to other local moms in the DS community because of our past experiences sharing the news of Everett’s diagnosis. What would these people say about my baby? Would they be supportive/happy people, or depressed/negative people about DS? Quite frankly, I needed positive/supportive at that time and couldn’t risk the latter. [Read more…] about Confessions of a Rockin mom #20: Fear of reaching out
Confessions of a Rockin Mom
What is a Rockin mom?
Before I dive into my confessions-of-a-rockin-mom, let me provide you with a little context and explain what a “rockin-mom” is. The type of diagnosis your child receives begins to shape your identity as a parent of a child with DS. Diagnosis stories and experiences are all very different. Some parents do prenatal genetic testing and receive an early diagnosis (prenatally, before the baby is born). Some parents decline early genetic testing, or perhaps the test results were wrong (as in our case), and receive a postnatal or birth diagnosis when the baby is born. And because there are different kinds of Down syndrome (Translocation, Nondisjunction/Trisomy 21, and Mosaic), some parents receive a delayed diagnosis. Regardless, the first conversation one has with their primary healthcare practitioner (be it OB/GYN, nurse practitioner, geneticist, midwife, pediatrician, etc.) shapes the way parents and family members perceive their roles as caregivers of a child with Down syndrome and how they perceive their child. Unfortunately, there are a lot of stories out there where healthcare practitioners present no information about DS, negative information about DS, and/or encourage expecting parents to terminate their pregnancies because of a prenatal diagnosis of DS. These stories contribute to a larger narrative of Down syndrome.
Rockin Moms and the Down syndrome Diagnosis Network (DSDN)
Because of these diagnosis stories, a group of moms collectively banded together via social media (Facebook) around four years ago and the DSDN emerged. We moms (and a few dads) refer to ourselves as “Rockin moms” and we are
determined to change the world one social construction at a time. We commonly post pictures, stories, and anecdotes to social media in an attempt to alter how people perceive and construct ideas about Down syndrome. Our chosen descriptors (Rockin moms, because we have children who “rock” an extra copy of the 21st chromosome) are furthered through the ongoing collective hashtags, #rockthe21 and #theluckyfew. Additionally, every year on World Down syndrome Day (3/21) as well as DS Awareness Month (October), we engage in social media campaigns that reconstruct inaccurate or partial views of what it means to have or live with Down syndrome. In March 2015, we participated in #lifewithDS by creating blogs that described our average days with children with DS (very much like a typical day for many parents and family members) and posting/sharing these stories. This year many moms pushed the hashtag #deardoctor by posting/sharing letters authored by Rockin’ moms that describe the effects of harsh and constructive diagnosis experiences. Again, these campaigns are primarily intended to socially construct new ideas about postmodern life with DS. I deviated from the #deardoctor movement this year as my healthcare practitioner was very compassionate when delivering Everett’s diagnosis. Instead, I wrote about “Confessions of a Rockin mom” which implicitly connects with the #deardoctor movement as I described many of the early fears I had when first learning of Everett’s diagnosis.
Confessions of a Rockin mom
“Confessions of a Rockin mom” were designed to connect with three primary audiences: 1) Current parents with children with DS who share similar experiences to ours, as well as those who encountered different experiences (e.g. a prenatal diagnosis). I think it’s important for everyone in the DS community to understand that each of our stories is unique, and respect and learn from these different stories. 2) New and expecting parents of babies with DS. In the early days, I had a lot of unwarranted fears and wasted a lot of time fretting over things that were out of my control. I wish I would have worried less and just enjoyed my new baby and my new role as a parent. I’m hopeful by dispelling a lot of the fears I had early on, I can encourage new moms and dads to worry less and enjoy the moment. 3) People who do not have a lot of exposure to differently-abled persons. This includes healthcare practitioners who deliver diagnoses, but have minimal exposure to the children they diagnose beyond the diagnosis. Perhaps by altering their perspectives, we can then begin to alter the overarching narrative of Down syndrome. So here are my “Confessions.” As you will read, some of the fears I had in the early days were warranted. But most were not, and I think by reading through these sorted tales of #lifewithDS you’ll find that being the parent of a child with Down syndrome is just like….being a parent.
We didn’t announce the fact that Everett was diagnosed with Trisomy21 until he was about a year old. We told friends & family, but we let our social media peeps figure it out for themselves over time. I believe I made it FB official 2 years ago during DS Awareness month when I posted a series of facts about Down syndrome. There is a very good reason why we did this. Because Everett got a birth diagnosis, we didn’t have time to prepare how we would “break the news” to others. We were still trying to figure out how to “break the news” to ourselves. And I’ll have to confess, the few people we told responded in ways that really upset us. The worst was when a friend told me they already knew because Everett’s characteristics were obvious in the newborn photos I posted. This crushed me. No one wants to have anyone, let alone a friend, point out characteristics that make your child stand out. We also got a lot of “I’m sorry” reactions. We didn’t think Everett was something to be sorry about, so that hurt our feelings too. We became very fearful of how people would respond to the news of Everett’s diagnosis, so we stopped telling people and let them eventually figure it out for themselves. This fear, unfortunately, was very warranted. If you are reading this post and know of someone who recently had a baby diagnosed with Down syndrome, please be thoughtful in how you respond to that news. Words are very powerful and can be very hurtful to someone else when not selected carefully. And maybe Everett does have some obvious characteristics of DS. But who cares…he’s an adorable child who is worthy of celebration. Not “I’m sorry.” [Read more…] about Confessions of a Rockin mom #19: Fear of breaking the news
Looking back, I had an early fear that quite frankly was a little ridiculous. After Everett was born, I immersed myself in any and all research related to Down syndrome. I learned quickly that kiddos with DS often are shorter and smaller than their typically developing peers. I was very concerned about this because I felt like it was just another characteristic that would make him stand out in a negative way. This fear was magnified when I learned there was a separate growth chart for kids with DS because of their smaller stature.
Well, as it turns out, this particular growth chart was not helpful in tracking Everett’s growth. He was “off the charts” huge! We track him now on the typically developing growth chart and he’s pretty average in height…but has hit the 80th percentile in weight a couple of times ?. Just goes to show you, people with DS come in all shapes and sizes just like the rest of us. But I’ll have to confess, no matter how big he gets…he’ll always be mommy’s “little man.” [Read more…] about Confessions of a Rockin mom #18: Fears related to growth patterns
I get a lot of praise from others who describe me as a stellar parent, which means a lot to me (thank you to those who have said that). Being a good parent falls right under living a Christ-like life, in my book. But I’ll have to confess…I get a lot of help. Because it takes Everett a little longer than his typical peers to meet basic milestones like crawling, walking, talking, self-dressing, etc., he receives a lot of assistance from specialists who teach him physical, gross motor, speech, and adaptive skills. Or shall I say — WE receive help with these things. You see, I am not trained to teach Everett how to learn these things best, but his specialists and teachers are. And along the way I’ve picked up a few parenting tips & nuggets of wisdom from these people. I frequently refer to these individuals as Everett’s therapists and teachers and MY “parent coaches.” [Read more…] about Confessions of a Rockin mom #17: Fears related therapies
For the first year of Everett’s life I spent a lot of time and emotion worrying about him. At night as I was falling asleep, I would worry. When I woke up, the worry would begin again. And I would worry and pray all the way to work and back, every week, about things that were totally out of my control at that point. Where will he live someday? Will he ever be able to take care of himself financially? Will he be healthy? Will he play sports, go to college, have friends? Etc. Etc. Etc. I still don’t have the answers to some of those questions, but I don’t need to right now. Right now we need to focus on whatever Everett needs to be successful…right now. And I’ll have to confess, if I could go back I would spend more time pinching those cute cheeks and hugging that squishy little chunker, rather than worrying about him. He was the answer to our prayers and God doesn’t give wrong answers.
Bible class is a big deal to us, especially for our children. I have the greatest memories of bible class, VBS, youth group activities & church camps, from when I was growing up. I’ve always hoped and prayed that both of my children would build similar memories as they grow in their relationships with God. Early on after “the diagnosis,” I remember being afraid that Everett would struggle to be included in bible class and other church activities. This fear was definitely unwarranted. Each week in bible class Everett is fully included and participative in EVERY church activity. He prays, learns memory verses with his teacher and friends, enjoys the puppet shows, and always walks away with an interactive art project he worked on that reflects a weekly bible story theme. I have no doubt no…no doubt…that he will grow in building relationships with his fellow brothers and sisters in Christ as he worships God just like everyone else in our congregation. Especially in building those relationships with his female classmates ?. [Read more…] about Confessions of a Rockin mom #15: Fear of inclusion in bible class
The (as in “THE”) greatest fear I had for Everett after we learned he had DS, was that no one would accept him for who he was. I worried that anyone he encountered (friends, family, acquaintances, and strangers) would not fully accept him because of his diagnosis. This fear was very unwarranted. Thousands of people showed up to this year’s Buddy Walk to celebrate their loved ones with DS today. Friends, family, acquaintances, strangers….. [Read more…] about Confessions of a Rockin mom #14: Fear of acceptance (or lack thereof)
Read the enclosed link which features a letter authored by my dear friend and fellow Rockin mom. Let me tell you…from my experience (and the experiences of others), many healthcare professionals know very little about Down syndrome beyond the diagnosis. And unfortunately, many of these healthcare workers frame conversations about disability by saying harsh things to parents, and creating a lot of unwarranted fear. By referring to our children as “Downs” or an “error,” these healthcare workers are creating a conversation where babies with DS are less than optimal and in some cases, subhuman. For Pete’s sake people, when someone has a baby you typically say “congratulations.” As opposed to, “Your Downs baby was an error” and “I’m sorry.” This is far too common as we had similar experiences after Everett was born. Because of these experiences, I am determined…DETERMINED…to change this world for Everett, all other differently-abled kiddos, and their loved ones. One “Downs” at a time if that’s what it takes. Proud of this rockin mama…rock on.
I distinctly remember the medical bills rolling in after Everett was born. Geneticists, hospital bills, specialist co-pays, pediatrician visits, home healthcare, lab tests, you name it. We also decided early on that Everett would attend Kinderfrogs at TCU, no matter what the cost. So obviously, a very early and very real fear of ours involved the cost of raising a child with DS. This is a warranted fear. We have one child with typical chromosomes and one child who is “chromosomally enhanced” and there is no question as to which child needs more medical and therapeutic intervention (which comes with steep price tags…we meet our insurance deductible every year). But Vic and I have always pledged that we will do anything and everything it takes to give Everett whatever he needs to be a successful, independent, meaningful contributor to society. Some days that’s easier said than done though. I love this photo of Vic dropping Everett off at Kinderfrogs. I am so grateful to have an incredible husband who will move mountains for his family. [Read more…] about Confessions of a Rockin mom #12: Fears of medical costs & Down syndrome
Vic and I waited so long to be parents. All we wanted to do was be mom & dad to a sweet baby and join in on conversations about parenthood. Shortly after E was born, I recall hearing a few healthcare workers refer to him as the “Downs baby.” I realized right then, Vic & I would be a part of a different conversation about parenting. I was so afraid in those moments, that we’d never feel like “normal” parents. This fear was very unwarranted. Take a look at this photo — two parents EXHAUSTED from a having a new baby who isn’t sleeping through the night yet. Doesn’t get any closer to “normal” parenthood than that, does it? And three years in, I can assure you that Everett is more alike than different than his typical peers. And we face “normal” challenges associated with raising both of our children. Side bonus? We are now a part of an extended community filled with families of individuals with DS, and I wouldn’t trade that for the world! Love my Kinderfrogs community, my Rockin moms, and the DSPNT! [Read more…] about Confessions of a Rockin mom #11: Fears about never feeling like a “real” parent