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Hi guys! Miggy here back with another Special Needs Spotlight Now + Then update. I first interviewed Erin about her daughter Tatum, who has Down syndrome, back in 2016. You can read the original spotlight here!
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Miggy: Welcome back Erin! I’m so excited to be doing an update on your daughter Tatum today who was first featured in the spotlight series back in 2016. First, lets start with a brief refresher of your daughter–what is her diagnosis and how does it specifically manifest in her?
Erin: Tatum has trisomy 21, more commonly known as Down syndrome. I think that there is a common misconception that Down syndrome manifests in the same way in all kids with Ds–maybe this is because they share common physical features that are easily recognized and often share the common trait of being quite social? Down syndrome is actually quite variable though! So, thank you for asking this. Tatum has hypotonia (low muscle tone) as well as a significant speech delay. Hypotonia has an impact on so many things–walking, talking, self-care, balance…the list goes on. For Tatum, this has meant that she walked closer to age 2, feeding has been an area of work for her, balance is an area of work, and she will continue to work on speech–likely for much of her life. Tatum is also a very visual learner, is very empathetic, has a huge signing vocabulary and is quite social–all common characteristics in children with Down syndrome.
Miggy: In the years since we first featured Tatum, what has changed the most about her during this period of time? Any unexpected highs or lows you’d like to share?
Erin: I think our biggest accomplishment is that we made it through that biggest adjustment period–the 0-3 years timeframe. If you have a child with a birth diagnosis or a prenatal diagnosis, I feel like you spend those first 3 years really getting to know them, their diagnosis, their strengths, their areas of work, and your resources. As Tatum has grown and her spunky personality has really come through, we’ve learned (and continue to learn) approaches that work well for her and those that don’t work as well. She’s made it through the major gross motor milestones and has made huge steps in communication. She transitioned from Early Intervention to the preschool setting and she made it through a few hospitalizations (for pneumonia) and surgery.
When we talk about the highs and lows of this journey, we often talk about how much more appreciative we are of the highs. Every milestone seems to happen in slow motion and feels so much more triumphant in many ways. Walking independently was so.much.work for her. All of that cheering and work and gait-trainer-lugging-around made her independent steps that much more amazing for us. The lows, on the other hand, keep us in check and give us perspective on our journey. We’ve been fortunate in that Tatum is not really medically complex. We have so many friends in the special needs community (not just the Down syndrome community) who have had really complex medical paths. We are very grateful for Tatum’s health and for great medical care when she has needed it..jpeg "This Little Miggy || Special Needs Spotlight || Tatum, Down syndrome")
Miggy: What has changed the most for you personally about your identity as a special needs parent? For example, have your general views on disability evolved, does your caretaking look different than it used to, and/or do you feel more or less personally balanced than you used to?
Erin: I think what has changed most about my identity has been the blurring (merging?) of my roles as a special needs parent and my professional role as a Neonatal Nurse Practitioner. In many ways, I’ve researched Down syndrome as a provider and as a parent. I’ve tried to educate myself on outcomes, current research, best practice, and resources. Having Tatum has really expanded my understanding of our NICU parents’ journeys and has deepened my passion for providing the highest quality evidence-based care. As I’ve sought to be an advocate and to dispel myths about Down syndrome, I have been much more vocal about sharing our family and our journey than I ever would have imagined. I’ve been very open and vulnerable in social media as a means of educating and raising awareness.
We joke that Tatum has a northern Colorado fan club. People have been so supportive and receptive to all that we’ve shared. Because I work in the same healthcare system where Tatum was delivered, I’ve also had an amazing opportunity to impact change. As a team, our NICU was able to take our pregnancy, delivery and hospitalization experience as well as our early newborn experience and ask how we can do better. To be clear, I had a good diagnosis experience and delivery experience and Tatum has received great care–but the more I learned about Down syndrome, the more I knew that we could do better. We could seek to be the best–and we have. We’ve worked hard to identify areas of improvement and need for education (of anyone caring for newborns with Ds and their families). I’m so proud of those practice changes that have been made because of Tatum.
While I’ve seen a lot of growth personally and professionally as a direct result of having a child with Down syndrome, I would be remiss in not sharing that the first year after Tatum was born was incredibly difficult too. She was my 4th baby but I felt, in many ways, like I was having to relearn to be a mother. I was learning who she was and what her needs were and I lived in fear of not meeting her needs or somehow not being enough for her–let alone my other three kids! As I navigated her healthcare and her Early Intervention therapies, I often felt like I didn’t know up from down and worried all day and night about falling short in meeting her needs. She also struggled for many months to breastfeed and that, for me, was a pretty big emotional hurdle. I know now that I was mired in postpartum anxiety and OCD but, at the time, I couldn’t step outside myself and Tatum’s needs long enough to recognize it. Because she was my first baby with special needs, I thought this was “normal.” I think for many moms of kids with special needs, it’s difficult to recognize or know what is “normal” because there is no “normal,” if that makes sense. So you continue to try to keep your head above water while trying to navigate all of the everything!
I’ve since sought and received help–yay for a husband who recognized and called me out, albeit lovingly. After some time, some mental health help, and some medication (honesty here, not shame), I think I’ve reached a more balanced place in my approach to balancing the needs of my marriage, Tatum, our other kids, and my career. Many days, I still feel like I’m barely keeping the spinning plates in the air but at least now I know it’s okay if one drops sometimes.
Miggy: I’m curious to know if you have noticed a shift in the relationships or dynamics in your family over the years as well that might be directly or indirectly affected by your special needs situation? For example, sibling resentment, marital challenges or perhaps the ties are stronger than ever?
Erin: I think this is hard to answer for our family. Tatum was born at a time when our oldest kids (twins) were entering adolescence (having just turned 11) and would be entering middle school shortly. Our 3rd child was struggling some in school and has higher emotional needs overall. Their ages and needs presented some challenges in terms of balancing family dynamics. Our oldest daughter, especially, was aware of the difficulty in trying to meet the needs and wants of all of the kids. It was a pretty dynamic time for us as a couple and for each of the kids…I sometimes wonder if Tatum had been born with only 46 chromosomes, would it have been just as difficult? I don’t know, honestly. I can’t help but think that anytime you add another child to the mix, especially with an 11 year age gap, you disrupt the balance and have to find a new center. Things have gotten to a place where things feel less…chaotic or less unbalanced in the last year especially.
Spencer and I still really have yet to figure out how to balance having dates or respite together–I don’t know many parents of kids with special needs who really feel like they have this down–but we do feel like working through the challenges of the last few years have brought us closer together. We joke that we are now currently living out some bizarre reality show “Toddlers and Teenagers” where we talk about period cups one minute and fish peanut butter crackers out of car seat crevices the next!
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Miggy: It’s really hard to see the lessons we’re being taught when we’re in the thick of it–often we need time to give us perspective we don’t initially have. So what do you feel like you’ve learned in the past few years that perhaps you didn’t see at first?
Erin: You know that saying about not asking why something is happening TO you but instead think of it as something that is happening FOR you? I feel like we’ve really come to live that. We are a faith-based family and spent much time when I was pregnant praying for understanding and for peace about Tatum’s diagnosis. I had so much fear about the unknown and fear about her potential complications or challenges that I was blinded to all of the beautiful lessons and experiences that would come our way because of Tatum’s extra chromosome. Mothering her has strengthened my faith and my love and compassion for others. My work has been so powerfully impacted and I’ve had the chance to connect with so many other families expecting or welcoming a baby with Ds and provide them with a look at real life with this diagnosis.
I just had no idea how much joy there was to be found in something that many perceive as a “burden.” The joy and the perspective that Tatum has given us are priceless. We know now, that she is here not just for our family but for so many around us. She is here to impact our friends, our extended family, her teachers, her therapists, my patients, my coworkers, other kids. She is changing perceptions and experiences everywhere she goes and it’s really humbling to be along for that ride. Some of our very closest friends recently adopted a baby with Ds from Ukraine–and all triggered by their experience loving Tatum! When I say that out loud, it still takes my breath away. We are so humbled to be part of her impact. Heather Avis, the other of The Lucky Few, perfectly summarized how easy it is to miss all of the beauty in this world if you only stay on one path that goes straight through the garden. Tatum has helped us to see all that lies outside of the path we thought we were supposed to be on!
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Miggy: Lastly, is there anything else you’d like to add about identity, family or your views in general as they relate to disability?
Erin: As I mentioned, we’ve been so much more open and vulnerable in sharing our story that I ever imagined I could be or would be. I’ve really gained an understanding and appreciation for how powerful our stories, as mothers and families, are especially when shared honestly. We can change lives and change outcomes and change other family’s perspectives and even courses by sharing the ups and downs and the gratitude and the love in our hearts. People may look at us and think we are to be pitied because we are “burdened.” What they don’t know—unless we share—is the extra degree of joy and appreciation that we are privileged to know as well.
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Erin thank you so much! I loved hearing about how much Tatum has been a catalyst for positive change in your professional work as well as what an impact she has had on the friends and family around you. I can only imagine how wonderful it for patients of yours who receive a prenatal Ds diagnosis immediately have someone who can present the news to them in a positive light instead of the many, many families who are told about this diagnosis with a pitiful “I’m so sorry” tone and outdated information on the supposed lower quality of life. Like you I have come to believe so strongly in the power of telling and sharing our stories. We can be catalysts for immense positive change by honestly sharing our stories–the good, the bad and the beautifully messy. And the fact that another family adopted a child with Ds just because of their love for Tatum? Amazing. Thank you so much for sharing your story again with us today Erin! You have such a beautiful family.
As always if you or someone you know would like to participate in the Special Needs Spotlight series please email me at thislittlemiggy at gmail dot com. Since I’m a one-woman show over here occasionally an email falls through the cracks, so if you’ve emailed in the past and didn’t hear back from me, feel free to tap my shoulder again.
Have a great weekend!
XO,
Miggy
