Another one of my early fears involves Everett’s ability or inability to drive his own vehicle someday. Driving is definitely a right of passage in the USA and I have such fond memories of getting the keys to my first car when I turned 16. In the early days, I was very fearful that Everett would never own and operate his own set of wheels like I did. Everett is 3 years old now, and I’ll have to confess, I don’t think I thought this fear all the way through. I mean, seriously…am I really supposed to hand over a set of car keys to EITHER of my children someday? This seems like a really scary thing to me. I think I’m cool if they wanna uber it or take public transportation for the rest of their lives ????. [Read more…] about Confessions of a Rockin mom #10: Fears related to Down syndrome & driving
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.
Everett was born 5 weeks early and he was by far the smallest of my 2 children, weighing 6 lbs 13 oz. Luckily, his early arrival didn’t lead to too many complications (jaundice is the only one I can recall) but Everett was a scrawny little thing as a newborn. In the very early days, I recall getting a lot of unsolicited advice from healthcare professionals regarding Everett’s current and future eating patterns. Some said he’d never eat well due to his low tone and he’d struggle to gain weight & thrive, some said he’d forget to eat at around 3 months, and others were cautious and had a “wait and see” approach. So of course, in those very early days, Vic & I scrutinized every ounce little Everett ate, his spit-up, burps, diaper changes…you name it. And you know what we observed? Everett getting fatter and fatter every day. I don’t know why everyone was so doom and gloom about his eating in those early days…I tend to think it was low and inaccurate expectations. Well, I’m proud to say that this fear was utterly ridiculous and unwarranted in Everett’s case. When Everett was around 3 weeks old he began seeing therapists for his milestones. And each one of them will tell you what a good eater he was and is. As a matter of fact, he still gets high marks for independent eating from his preschool teachers! To the early naysayers I say — the proof is in this photo.
[Read more…] about Confessions of a Rockin mom #9: Fears related to Down syndrome and eating patterns
I posted a while back about a book I recently read called “The Circle Maker.” It’s a great book that addresses the power of prayer. I’ve always believed in the power of individual and collective prayer, and I’ll have to confess, in the days leading up to receiving Everett’s karyotype results…I prayed. A lot. I remember praying very hard that the results would come back negative for Down syndrome. But I know now, three years later, that God had other plans for Everett and our family. And I am genuinely grateful and I praise Him every day for answering my prayers in a different way than I expected. His plans and ideas are always so much better than mine. If Everett had been born with an ordinary amount of chromosomes, then our lives would have been just that…ordinary. But instead, I get to journey along with an extraordinary kid (2 extraordinary kiddos, actually ?) and those of us who choose to, can see the world around us in extraordinary ways. I joked in a previous post that I wish everyone could see things as I do through their own pair of “Everett glasses.” But there was a lot of seriousness behind that statement. I know as his parent I’m supposed to teach Everett important lessons, but for the past three years he has been my greatest teacher. I’ll never forget when he bowed his little head and led us in prayer one evening last spring. There are hard days raising these two little boys of mine, but in these moments I find so many answers, to so many of my prayers. And all of the fear just disappears.
For the past few decades, for some reason, the word “retarded” (used in a derogatory nature) has been en vogue. Watch any movie that was a pop culture phenomenon in the last few decades and you’ll see and hear inappropriate jokes about differently-abled persons, and perhaps even outright usage of the R-word. And I’ll have to confess, this was a word I used to use before Everett was born. Like many others, I thought it was just another harmless word and I used it inappropriately and frivolously at times. But the first time I laid eyes on my sweet Everett, that word instantly disappeared from my vocabulary. You see, the words we use are actually not harmless. They cause a great deal of harm when used carelessly. I still hear people use that word (the R-word) on occasion. And every single time, it cuts through my heart like a knife. Sometimes I correct people politely, sometimes I don’t have the strength to do it. Please know that if I hear or see you use this word, I may not call you out for it, but my feelings are hurt nonetheless. It’s an affront to my sweet Everett and all other persons with different abilities. One of my fellow Rockin moms says she’ll throat punch anyone who says it in her presence. So definitely don’t say it in front of feisty moms like her! [Read more…] about Confessions of a Rockin mom #7: Fear of the R-word
So most of the fears I’ve talked about so far have been unwarranted. Today I’m going to address a very real and warranted fear that weighs on me quite a bit. When we received a definitive diagnosis of Trisomy 21 for Everett, it was through his geneticist. She showed us a photo of his chromosomes and there it was…that squiggly little 3rd copy of his 21st chromosome. She also handed us a packet that was essentially a very long list of health concerns that people with DS are predisposed to. Some of these concerns include (but are not limited to): Alzheimer’s disease, Leukemia, gastrointestinal blockage and/or abnormalities, cardiovascular disease, AAI, vision problems, hearing problems, hypothyroidism, ENT issues, obstructive sleep apnea. [Read more…] about Confessions of a Rockin mom #6: Fears about health and Down syndrome
In the moments after Everett was diagnosed, I remember asking for my mom. My mom is incredible. She’s an educational diagnostician with a special education background, so she works with kiddos with all kinds of different abilities through the public school setting. I remember her asking me after I shared the news of Everett’s diagnosis, “What exactly are you afraid of?” I also remember my response, “I’m afraid everyone will treat him differently.” Hence, this is fear#5. And I’ll have to confess, I was right — everyone does treat him differently. If I had cash for every instance a complete stranger has approached me to tell me how adorable Everett is, I’d be a rich woman. Similarly, if I had cash every time someone approached me and asked, “Are you Everett’s mom? I love seeing him on Facebook!” — I’d be even richer. [Read more…] about Confessions of a Rockin mom #5: Fears about being treated differently
A strange fear that I distinctly recall after learning of Everett’s diagnosis, was the fear that he would never be like me because we have a different number of chromosomes. So this fear is a little narcissistic, but perhaps everyone feels this way when they’re expecting a child. Maybe everyone wants or hopes for their child to favor them. I deem this fear unwarranted AND silly. First, if there’s anything I’ve learned (and that I’m hopefully teaching you), it’s that genetics and conception are a roll of the dice. Who knows why any of us look like we do and why we have certain talents and others don’t? And frankly, who cares. If we all looked and acted the same way, it would be a weird and boring world indeed. Secondly, and let me reiterate, genetics are a crapshoot. There was a 1/560 chance that Everett would be born with Down syndrome. But let me ask you this, what are the odds he’d be born with hair that sticks up straight in the air and pink cheeks? Because racially we’re a mixed family, I guess I assumed that we would always check “other” or “biracial” for Everett on standardized forms. But most of his current medical records have him charted as “Caucasian.” Who saw that coming? Not me. To date, this is still more puzzling to me than the fact that he has T21. I’m still not sure which emoji to use for our little E ?????! [Read more…] about Confessions of a Rockin mom #4: Fears about physical similarity & race
Everett is our oldest child. We always talked about having more than one child, so I’ll have to confess — when Everett was born and diagnosed, I wondered how that might affect any children we might have later. And when we learned that we were expecting a little brother for Everett, this fear resurfaced. I recall the very specific fear that Everett and Liam would not have a “normal” brotherly relationship because of Everett having T21. I have two incredible brothers. And when I think back on our “normal” sibling relationships growing up, I recall A LOT of laughter. Don’t get me wrong, there were frequent fights, disagreements, and scuffles too. But there are way more hugs, stories, and laughter between the three of us that define our relationships as siblings. I’m only a year into being the mother of two boys, but I’ve learned the same applies to Everett & Liam. They love each other so much. And Everett definitely acts the part of big brother as he shows off for Liam, teaches him new tricks, makes him laugh….and slaps him around a little bit (boys…oy vey!). Down syndrome is such a small part of their relationship. The fear of them not having a “normal” brotherly relationship? Definitely unwarranted.
In the days leading up to receiving Everett’s karyotype results, we met with his genetic counselor. We were given a list of things that kids with DS are predisposed to including AAI (atlantoaxial instability). This is when there is slippage in the vertebrae. Kids with DS are at risk of having AAI and those who do, should be restricted from sports. This touches on fear #2 — the fear that Everett wouldn’t be able to play sports. When we found out Everett was a little a boy we were overjoyed! Vic & I both love sports, so we immediately began talking about little league and soccer matches. But when we learned Everett had an extra chromosome, I’ll have to confess, these dreams were temporarily crushed. Neither of us knew anyone with Down syndrome and we both just assumed that kids with DS couldn’t play sports. We were VERY wrong! Kids with DS can play sports, but some shouldn’t because of AAI. Everett was screened last July and he does not have AAI. And now…my old fear of “He won’t be able to play sports” has been replaced with “What if he gets hurt playing sports?!??” We frequently refer to Everett as our little athlete because as you can see from the pic collage, he loves shooting hoops, kicking soccer balls, bouncing, swinging, dancing, swimming, etc.! And little brother may follow in his footsteps (he LOVES copying big brother). Or he may not. And as they each grow, their gifts and interests may change. And that’s okay…not everyone was born to be an athlete. In the meantime, though, I sure am enjoying being active with both of my sweet boys. [Read more…] about Confessions of a Rockin mom #2: Fears about Sports and AAI
We found out that Everett has Down syndrome moments after he was born (this is called a birth or postnatal diagnosis). In those moments after we heard of his diagnosis, a rush of fears went through my mind. One that I can painfully recall, was the fear that Everett would never be able to attend college. My college experiences were so meaningful to me, and I always dreamed that my children would build similar college memories. This fear was unwarranted. First, not everyone goes to college and they live rich, meaningful lives. Secondly, if Everett does choose to go to college there are hundreds of programs for differently-abled kiddos. And many of these students are attending standard 4-year and 2-year college programs. My alma mater, Texas A&M, hosts one as well as Clemson University (to name a few). This warms my heart, but I’ll have to confess…this old fear has now been replaced by a new one — Everett is going to move out and leave me someday ????!
[Read more…] about Confessions of a Rockin Mom #1: College Fears