Our little (some would say big!) family lives in northern Colorado and includes myself and my husband (Spencer), Isabel and Milo (12 year old twins), Keeler (hilariously entertaining 7 year old), and Tatum (adorable 1 year old). Spencer is a child and family therapist who specializes in adoption and trauma and I (Erin) am a neonatal nurse practitioner. Milo and Isabel are former 29-week twins who just finished their first year of middle school. Isabel loves crafts, reading, cooking, and history. She dreams big and amazes us with her empathy and insight. Milo loves music (he plays the viola), swimming, reading, and being outdoors. He is incredibly kind and full of integrity. Keeler is our firecracker! He was adopted at birth (when we thought we could not have any additional biological children) and has kept us entertained from day 1. He is fun, funny, active, and loves school. Keeler is full of life and love and passion. He is all in--whatever it is. Tatum is our sweet surprise who just turned 1 last month. Tatum has Down syndrome (something we knew she was likely to have from early in the pregnancy.) She is busy, happy, and has been our most social baby from day 1. Each of our kids came into our family in some sort of extraordinary way and we are so grateful for the lessons we've learned along the way.
Miggy: Thanks so much for sharing your family and especially your sweet daughter Tatum with us today. Lets start at the beginning, can you take me back to the day you knew your daughter Tatum was going to have Down syndrome? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Erin: As I said, Tatum was a very big (but happy) surprise for us. We had given up on having any more biological children many years before and had had a great adoption experience with Keeler. We thought our family was complete and we were content. I was in the process of finishing my master's degree and interviewing for a new job when we discovered that I was pregnant. Shocked doesn't even begin to describe how we felt! As we worked on processing this huge change coming our way, I made appointments with my OB and our perinatologist. I would be over age 35 when I delivered and knew that additional prenatal testing would be recommended as a result. One of the options offered to us was non-invasive prenatal testing (NIPT) which entailed a blood draw for me at around 10 weeks gestation. NIPT screens for trisomies (such as trisomy 21, also known as Down syndrome) and can detect gender with pretty high reliability.
Just when we were starting to wrap our minds around the idea of another baby, we received a call from the perinatologist telling us that our non-invasive prenatal testing had screened positive. As soon as I heard his voice on the phone, I knew that something had come up positive. My immediate and initial fear was that it was positive for trisomy 13 or 18, both of which, ultimately, are not compatible with life. I remember him telling me that the screening was positive for trisomy 21 and making a statement along the lines of "some couples choose to terminate pregnancy...". I remember telling him that we would not be making that choice--that we would continue the pregnancy as I fell to my knees. I had difficulty formulating any sentences or questions after that, although I was able to ask him what the gender was. The rest of that day was a blur. I called Spencer at work and gave him the news--another phone call that I don't really remember. He quickly cancelled all of his appointments and headed home. I called on my amazing army of friends to pick our other kids up from school and keep them until we had pulled ourselves together enough to see them. When Spencer got home, he crawled into our bed with me and we spent the afternoon crying, talking, and absorbing. There was so much fear and so much shock. People say now that it must be hard to think back on how sad we were at first. Honestly, I don't know that we were sad. We were just very very afraid. We were scared that she would have other medical complications that are more common in babies with Down syndrome (such as a heart defect). We were afraid of the impact that this would have on our family and our future. I was very afraid and overwhelmed at the prospect of being a mom of FOUR (remember, we though we were done having babies!). We were both overwhelmed by the idea of being special needs parents and having "enough" to give to all of our kids. It was so huge and so heavy and felt so uncertain
When we compare those thoughts to how we feel now, it's incredible how far we have come. When I was pregnant, I read many stories and blog posts from other mothers of children with Down syndrome. They all said the same thing--this baby will be your baby first and the diagnosis will come second. It will just be a part of who they are. They all said that their babies with Down syndrome filled places in their heart that they didn't even know existed. These statements are so true for us as well. We feel so lucky to have Tatum as our daughter and as part of our family. She has changed us in countless ways, individually and as a family. Being the parents of a child with special needs does still feel overwhelming at times but, overall, we feel joy, love, gratitude and awe at this little girl and what she can do!
Miggy: Like most special needs, Down syndrome presents differently in every person. Can you tell us a little about Tatum and her needs and how they affect your day-to-day life?
Erin: We feel very fortunate that Tatum has been really healthy so far. Tatum does have low muscle tone, which is common in people with Down syndrome. This makes it more challenging for her to sit, crawl, stand, and (eventually) walk. Despite this and despite a large diastasis recti (split in her abdominal muscles), she has reached all of her gross motor milestones at the same age of many of her typical peers. These milestones have definitely been hard earned! We do physical and occupational therapy with her every day and Tatum has been in occupational and physical therapy since she was 4 weeks old.
Feedings are an area where many babies with Down syndrome struggle for a variety of reasons (coordination, muscle tone, texture, stamina). Tatum did have some issues with bottle feeding initially, which required the input of a feeding therapist from the Children's Hospital of Colorado. We also worked on breastfeeding for many months before Tatum was able to feed exclusively by breast. In addition to the feeding therapist, we involved a speech language pathologist. The speech language pathologist has seen Tatum since she was 3 months old and continues to work with her on a weekly basis. Speech is often delayed in children with Down syndrome and many use sign language for communication. Tatum has a few words as well as a few signs. We work hard on communication all day every day so every sign or word or approximation of a sound or word feels like a huge victory.
Erin: We are involved with Early Intervention, fortunately, which makes it possible for us to do each of these therapies in our home. We have a great team of therapists and a great pediatrician as well as involvement with our regional center for Down syndrome, the Sie Center for Down Syndrome at Children's Hospital Colorado. We feel so lucky to have so many resources and so much support in meeting Tatum's needs.
Tatum also recently got glasses. They are pretty cute--I might be a little biased, of course. Many children with Down syndrome need glasses and the genetic deck was stacked against Tatum to begin with (our other biological children both needed glasses at a very young age as well).
Miggy: What are the biggest worries you face for your Tatum? Conversely,what are your hopes and dreams for her?
Erin: Our hopes and dreams for Tatum are, in many ways, the same as our hopes and dreams for all of our kids. We hope that she grows up confident and that she is able to accomplish whatever she wants to accomplish. We hope that she will have so many doors open to her and for her when she is a teen and as an adult. Higher education is becoming more and more possible for people with Down syndrome. We are excited to think of where it might be by the time Tatum is an adult. We are also hopeful that being fully integrated into and included in our local schools (as opposed to being sent to a "special school" away from her typical peers) will be an easily-accomplished reality for Tatum.
Our worries are big and little, I would say. We fear that we will outlive her. Although, the life expectancy for people with Down syndrome has increased by nearly 40 years since the early 80s (to somewhere in the 60s now). We worry that she will not have friends or that she won't be included with her typical peers. We worry that she will have medical complications that are more common in children with Down syndrome (like specific types of leukemia). We worry that we will have to fight to get her education needs met--although we love our local school and have felt nothing but support so far. Honestly, these are very similar to fears that we have for all of our kids on some level. They are just much closer to the surface with Tatum.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Erin: There have definitely been some humorous moments along the way. For example, when we told our other kids that the baby that we were going to have would likely have Down syndrome, our then 6 year old raised his hand (being the rule-following first grader that he was) and said, "I just have one question. Do I have Down syndrome?". We were fortunate to have friends with a daughter with Down syndrome who our kids all knew pretty well. She is fully integrated and included in our elementary school and Keeler, in his 6 year old world, could not clearly see any differences between himself and Gretchen. It made us all laugh a little that I had to tell him that he didn't have Down syndrome and that he seemed a little disappointed. It also made us feel good that Down syndrome just wasn't that big of a deal to him.
We have other friends whose daughter was disappointed when her NIPT was negative for Down syndrome. She wanted her own little Tatum! That's how much love this little girl gets!
Miggy: Fortunately we live in a day and age where Down syndrome is becoming much more familiar, we're even seeing people with Down syndrome as models and being used in advertising. Which is great! That being said, we still have a ways to go when it comes to education and acceptance of people with disabilities. How can people best approach or respond to Tatum? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Erin: For the most part, our interactions with people have been very positive. We do really wish that everyone could understand how powerful their words are though. People-first language is so important to us. It really is so hurtful with people refer to Tatum as "Downsie" or "that Downs baby". We wish everyone knew how much better if feels to have someone refer to your child as a baby with Down syndrome. And don't even get us started on the flippant use of the "R" word...
In the beginning, especially, we got a lot of questions about when we knew she would have Down syndrome. Many times I think that people were truly just curious. But other times, it seemed that they were trying to understand if we had made a conscious decision to continue a pregnancy or whether her diagnosis had been a surprise at birth. It was really unnerving.
Miggy: Erin, there are a lot of people who terminate pregnancies these days based off of prenatal screening tests for syndromes and other abnormalities. I certainly don't want to get into a political debate or even shame anyone for their choices, but I do want to present the other side of the story. As a mother who has perhaps faced the fear that comes with initially finding out something is "not right" with her child and who now knows and loves this same child, what would you say, if anything, to a mother who just found out that the fetus she's carrying has Down syndrome and who is perhaps considering terminating the pregnancy?
Erin: This is a really powerful question. It's one that I have actually thought about many times since Tatum was born. I think that I would hope that women making this decision would do so after receiving balanced information about Down syndrome. Unfortunately, that isn't likely to be the case. Most women are counseled with statistics regarding medical complications that may co-occur but few (if any) are counseled about what life with a baby or child with Down syndrome is like. Statistically, parents of children with Down syndrome are less likely to divorce. Also, parents of children with Down syndrome and people with Down syndrome are more likely to describe themselves as happy in comparison to others. Sadly, this side of picture is not shared. Ideally, I would want a woman considering termination to consider that life is unpredictable and messy and beautiful and you just never know how it will turn out. But Down syndrome is a part of that beautiful and unexpected mess. It is not a doom and gloom life sentence. I would wish that she could see what having a child with Down syndrome is really like. It's not always easy (but parenting any child is not easy), but it is wonderful! It is so full of love and joy and gratitude.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your daughter?
Erin: Having a sibling with special needs has changed each of our other children in huge ways. They are kinder, gentler, and more empathetic. Our older kids have gotten involved, on different levels, with their peers with special needs at school. They have stood up for their special needs peers at school and have bravely taught their typical peers about the power of person-first language. They are each so in love with Tatum and they are her biggest cheerleaders. Every time she accomplishes a goal or reaches a new milestone, they cheer, they brag, and they celebrate. She has taught them so much about gratitude and perseverance.
Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Tatum's mom?
Erin: I think that the single biggest lesson has been that I can do this. I can be a special needs mom and a mom to my other kids and it won't be perfect but it will be what they need. I have learned that I am capable of more than I give myself credit for and that one baby can change more lives than I thought possible--just by being her own little perfect self. Extra chromosome and all.
I probably should have warned you to get tissues! Did that last line get you like it got me? It reminds me of something Timothy Shriver said about the Special Olympics (I'm paraphrasing), "It's not about winning or losing, it's about being accepted for exactly who you are." And thank you so much for sharing your thoughts about giving advice to a woman who is considering terminating pregnancy of a disabled child. I wasn't sure about asking that question, but you answered it beautifully, without judgment and with some great information. So thank you. And I LOVE how your children have been positively affected by their little sister. It really is so great to see how the siblings of our special needs kiddos are raised with extra awareness and how that radiates to other children around them. Thanks again Erin, this was such a great spotlight. Hugs and kisses to that beautiful family of yours.
You guys, as always I am looking for Spotlight families who are willing to share their story, so please if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com. I would just like to put it out there that in light of current events I would really, really love to interview a family raising a transgender child. Of course I know being transgender isn't a disability (but what is? in my book) but I'd love to share your story as it definitely fits with the idea of parenting outside of the norm.
Thanks so much everyone and have a fantastic weekend!