Keep them first

    “Look at that cute downs baby”
            “I had a downs kid in my class in high school”
  “My friend has a downs child”

 
Nothing about the statements above seem particularly offensive to most people but if you really think about it, they all make the CONDITION primary and the PERSON secondary. People with disabilities are people first and they have many other features that make them who they are – brown hair, green eyes, a resemblance to their father, a wicked sense of humor, a great pitching arm. When we use language to put their condition first we discount all of those other things that make them unique. Even if their difference is their most obvious feature it doesn’t mean that’s all they want to be known for. My hair is almost always frizzy but I don’t really want to be known as “the frizzy-haired woman”. I would hope you would talk to me and find out I’m also the woman with a terrible sense of humor (based mostly on puns) or the one who always uses the wrong emoji when sending text messages.
            We would never in a million years say “that cancer kid” or “that diabetes guy”. We can identify that as inherently disrespectful and dehumanizing. It’s the same with any other condition. For example, Down syndrome is not the first thing you would ever see about my daughter, Julia Grace. Most people remark on her blue eyes or her ready smile or her silly noises. That’s what makes her Julia Grace, not her Down syndrome. So, the next time you want to refer to someone with a difference or disability make sure you ask yourself, am I putting the PERSON first? Or, better yet don’t even say “that baby with Down syndrome” at all. Instead say “that funny (silly, sweet, blue-eyed, cute…) baby, Julia Grace.”
             

A DIFFERENCE IN PERSPECTIVE

Julia Grace and I are taking a child development class at a local parenting center. Today was our second class and our teacher asked each of us what we were celebrating this week. The thing that reverberated with joy throughout my entire body was that we found out yesterday that Julia’s beloved friend who has one of my favorite mamas in the world had a negative bone marrow biopsy. When her mama told me the good news I held Julia Grace and we danced and cried and celebrated with them like she was our own family because this community of friends has become like a family to us.

This is what I find the most stark about being a mom of a child with special needs and about being so steeped in this community. I don’t know if any of the women in that classroom has been touched by tragedy or if they’ve seen their friends undergo horrific loss or illness, maybe they have. But for us it’s a sadly common occurrence. I can count six littles in our community that we’ve lost in the brief time I’ve been part of it. I’ve only counted one mama among our close friends but every loss hits us like a ton of bricks. We are a community, one big family, and we celebrate and mourn and hold each other up and cheer each other on at every turn. We hold our breaths with the parents of those going through medical challenges. We sigh with relief when we get good news. We offer support and encouragement when we get bad news.

This is such a weird change of perspective because I expected to feel isolated because Julia Grace is the oldest baby and she’s one of the only ones not crawling. Frankly, even as I type that it seems silly. She will get to those things in her own time. But, sitting there trying to think of something, anything else to say besides that I was singing with joy that a child doesn’t have cancer, made me feel a million miles from everyone else in that room. In our video, Why be Normal, I committed to showing Julia Grace how to be a badass and according to Brene Brown, “people who wade into discomfort and vulnerability and tell the truth about their stories are the real badasses.”  So next time, I will tell my truth and celebrate the joys of my community. Excuse me, the joys of my family.

APRIL FACTS

This month at Whitman Wellness Center for our yearlong service project we are focusing on being #MoreAlikeThanDifferent. This means that kiddos with Down syndrome are more like their typically developing peers than they are different. It also means that their parents want the same things for them that all parents want for their children – a good education, interesting experiences, exciting opportunities, and meaningful friendships. Children and adults with Down syndrome can almost always do everything their peers can do with just a little more patience and encouragement. Just like their typically developing peers children with DS:

  • Are not always happy. They experience the same wide range of emotions as other children and adults!
  • Grow up to be adults. They are not perpetual children and deserve the same opportunities as other adults.
  • Are hurt when they are left out because people think they’re different. They want to be included in activities just like other children.
  • Have a wide variety of skills, strengths, and challenges.
  • Have diverse interests, likes, and dislikes. Just ask and they’ll tell you!

Watch videos of self-advocates discussing how they are more alike than different at http://morealikethandifferent.com.

IN PRAISE OF NURSING

Julia Grace turned 10 months old on Saturday. I was happy to wave goodbye to her 9th month because it was a doozy. We have very little to complain about in terms of health for JG compared to other families with DS but for us her double ear infection plus a sinus infection followed quickly by croup and the added bonus of her sprouting a tooth was exhausting. She was sick off and on for basically the entire month. Two days after she turned 9 months old she suddenly started refusing all bottles. Four weeks later and she hasn’t taken a single ounce from a bottle since. We’ve been working on sippy cups but she still can’t manage them very well. When she first refused the bottle we weren’t sure what was going on because she didn’t seem sick so chalked it up to a strike and Ed added milk to her purees while I was at work and I nursed her more frequently when I was home. But then she spiked a 104.6-degree fever and she refused to eat more than a few spoonfuls of purees on any given day. I was worried that she’d lose weight and end up in the hospital for dehydration. The doctor who saw us and diagnosed her with an ear infection and a sinus infection told me the best thing I could do was to nurse her on demand to make sure she stayed well hydrated. And so I did. I nursed her whenever she wanted to, around the clock. It not only helped her stay healthy and out of the hospital but comforted her while she wasn’t feeling well and made me feel like I was doing something meaningful when I felt so helpless.

I have been a huge proponent of breastfeeding for years. As a former labor and delivery nurse and a one-time midwifery student I believe the benefits cannot be overstated and have always encouraged people to consider it. I find it comical how little understanding I had of breastfeeding when I was instructing my patients and now that I have personal experience I understand how challenging it can be in those early weeks and how much persistence it can take. Julia Grace was too sleepy and disorganized to get enough calories from nursing until she was almost 3 months old. During that time I learned a lot about establishing and maintaining my supply so I would be ready if she was ever capable of nursing. I pumped 10-12 times a day, 20-25 minutes at a time, around the clock. I attempted to put her to breast frequently but we just couldn’t manage to make it happen. She latched well from the start but fell asleep easily and we would both end up in tears. I felt I could pump or I could try to get her to suckle but not both because they were both so time consuming and overwhelming. New motherhood is exhausting and adding a pumping schedule to that was almost debilitating at times. I once calculated that I spent more than 40 hours a week between pumping, washing and maintaining the pumping parts, and feeding JG. Eventually I gathered tips and trips and became more efficient but those first weeks were a blur. My priority was always that she have my milk and for those first few months I had to accept that pumping was the way to do that. However, I’m so grateful that we persisted and that she eventually got the hang of it. Throughout it all we had the support of amazing Board Certified Lactation Consultation through the hospital and then privately that our insurance paid for and that came to our house. I know I would not have had the ability to be successful without them and am grateful that they believed in me and in Julia Grace’s ability to nurse eventually. Not a single person ever dissuaded me from nursing her just because she has Down syndrome. Since then, I’ve been saddened to find out that some mothers are told that they shouldn’t even bother to try to nurse their child with Down syndrome because they’re not capable due to low tone. In fact, unlike typically developing babies, babies with DS are capable of learning how to suckle properly much later in life, even if they don’t get it right away. That is an amazing and empowering thing to know! And the truth is that it may take a little longer and may take a bit more work but many, if not most, babies with Down syndrome are eventually capable of breastfeeding. There are also MANY babies with DS who go straight to breast, latch, and never look back.

I want mothers who are considering nursing their babies with DS to hear all of the success stories I’ve heard and to be encouraged. This is the inspiration for my next project, with a target release date of late July, right in time for World Breastfeeding Week. I am currently recruiting mothers in the New England area who are breastfeeding their children with DS and who anticipate they will STILL be breastfeeding in June of 2017 and who would be willing to drive to Massachusetts to participate. Please email me if you’re interested in further information.

 

Celebrating WDSD

Dozens of people participated by wearing their mismatched socks. 

Dozens of people participated by wearing their mismatched socks. 

March 21st was World Down Syndrome Day. This time last year we were still sitting with Julia Grace's diagnosis when we heard about the day that celebrates those living with DS by wearing crazy, mismatched socks. I've always loved crazy socks and have maybe only one pair of "normal" socks in my entire sock drawer so this seemed like a "holiday" tailor made for me. We decided to announce the diagnosis on Facebook and asked our friends and family to show their support for the baby we were expecting. We were truly overwhelmed by the number and diversity of people who participated and posted photos of their feet to our Facebook wall. It was the first moment where I truly understood the power of community and realized that this child would be loved and accepted no matter her differences.

      This year was no different  and we had dozens of people participate in honor of Julia Grace and others living with Down syndrome. It is always so awesome to see the community of families with Down syndrome planning and preparing by creating educational materials for their children's classroom, making blue and yellow treats for coworkers, inspiring others to kindness in the name of their loved one with DS, etc. But, perhaps it's even more inspiring to see how others respond by being open, accepting, and loving. People with Down syndrome have contributed in so many meaningful ways to their families, schools, and workplaces that it is an honor to celebrate them in this way. Can't wait to see what next year brings!

Why be normal?

In January of this year, I was driving home after a long and overwhelming day at Boston Children’s hospital when I heard Aimee Mullins on “The Moth” podcast. She is a model, athlete, and activist as well as a double amputee. Listening to her story I was inspired by everything she had accomplished not only in spite of being a double amputee but in some ways because of it. I pulled out my phone and recorded a short spoken word piece about reconsidering my approach to raising my daughter with Down syndrome. I didn’t know what I was going to do with it but I knew I wanted to share it. A few weeks later we were visiting Tony and Julia Bacon, close family friends and an amazingly creative couple and I played the sound recording for them. Tony is an award-winning filmmaker and was inspired by the piece and thought that the sentiment might resonate with parents of all kinds. I could see that he was already envisioning my words as a short movie. Several weeks of collaboration later and we are proud to share with you this video that we hope inspires you to reimagine life with Down syndrome. We are so happy to have you on this journey with us.  For more information sign up for our newsletter at www.juliasway.com or find us on facebook @ https://www.facebook.com/juliasway2016/.

People first, condition second

There is an article going around just now about a couple with Down syndrome who are celebrating their 22nd wedding anniversary. It's interesting because I've seen more or less the same article several times with several different titles and it says something to me about people first language.

"Down syndrome celebrates 22 years!" Um, no. Imagine two people with diabetes and the headline says "diabetes celebrates 22 years!" Absurd.

"Down syndrome couple celebrate 22 years!" Still no. "Diabetes couple celebrates..." wouldn't happen.

Here we have "Couple with Down syndrome celebrates 22 years!" Yay! These people who have many other interesting characteristics, which DS is likely just one, are celebrating. See how this puts the couple first? The Down syndrome is second, as it should be. 💝

Congrats to them ! Also, I hope we get to a point where things like this aren't newsworthy because they happen all the time.

Down Syndrome Facts: WE ARE NEVER ALONE

In January of 2017, we worked with Whitman Wellness Center, in Whitman, Massachusetts to launch a yearlong service project benefitting the Massachusetts Down Syndrome Congress (MDSC) with the aim to educate people about Down syndrome (DS).

  • One in every 691 babies in the United States is born with Down syndrome – about 6,000 each year—making it the most common chromosomal condition in the United States. There are an estimated 400,000 individuals in the US living with Down syndrome.
  • Down syndrome occurs during, or right after, conception when an individual develops a full or partial extra copy of the 21st chromosome. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21. No one knows exactly why this extra full or partial chromosome happens; however, maternal age, and to a lesser extent, paternal age, has been linked to an increased chance of having a baby with this condition. Even though this condition is genetic, only 1% of cases are hereditary.
  • Down syndrome can be diagnosed prenatally through diagnostic tests, which gives a definitive diagnosis, or screening tests, which gives a probability, or likelihood, that the child will have the condition. It can also be diagnosed after birth through a chromosomal analysis called a karyotype.

These are some of the “facts” of Down syndrome and there are many others that are frequently discussed with families as they learn that they are having (or have already had) a child with Down syndrome. None of these facts, though, will prepare you for the joy, gratitude, and depth of community you find when having a child with Down syndrome. When I was pregnant with our daughter, Julia Grace, I went to the MDSC conference, which they host once a year for families and professionals to learn about issues related to DS. When I arrived I almost immediately ran into a woman who said to me “you might not be able to imagine it now but this is a blessing bigger than you could ever imagine. The DS community is amazing.” I wasn’t devastated by the news that Julia Grace had DS but neither was I convinced that I would ever consider it a blessing. But, here I am a year later; my daughter is almost 9 months old and I do mostly consider her diagnosis a blessing. The friendships I’ve made and the support I’ve received from the Down syndrome community constantly astounds me. We are a big, eclectic family. We consist of every race; ethnicity; religious and political preference; small families and big ones; young parents and older ones, single parents, gay and lesbian parents, and adoptive parents. The one thing that we all have in common is that we adore our children and that we are invested in each other’s children as if they were our own. We celebrate every milestone together; we lift each other up in every difficult time; we offer words of encouragement, excitement, and hope. We accept our children’s diagnosis to varying degrees depending on the day but the MDSC along with the Down Syndrome Diagnosis Network have helped me to learn the most important fact: we are never alone.

DSDN has over 80 local partnerships where we provide our materials and resources to organizations across the country. Did you know you or your local organization can request DSDN brochures and leaflets? DSDN is happy to send you or your local org our materials to distribute to your local OB-GYN, Pediatrician, DDD provider or Therapist’s Office. Request information here. 

This was published on DSDN's blog under the title "Bringing DSDN home: We are never alone".

 

LOVE IS A DRUG

INITIALLY PUBLISHED: May 29, 2016

This morning I breastfed Julia Grace and then put her on my chest for some skin-to-skin time. She grabbed my thumb with her tiny hand and we stayed that way for 45 minutes. I felt fear rise up in my heart so strongly – fear from all we have been through and from the possibility that anything could ever go wrong with her again. Kids with Down syndrome can be fragile and the idea of anything happening to her makes me hyperventilate. Even the idea of leaving the hospital again without her makes me literally unable to breathe. The air chokes in my throat and I feel like I am having a panic attack. I reminded myself of my yogic breathing and that closing my heart has never made any sad thing less painful so I focused on opening my heart even more to this little sacred being and I was flooded with whatever cocktail of new mother hormones makes this experiences so intensely personal and so universal. Julia Grace and I both became so deeply relaxed that our bodies had no tension at all and I felt myself accessing theta brain waves, the deepest and most relaxing brain waves possible. I remembered that the night before our wedding, for my “bachelorette party” we went to a psychic who told me that I would have a girl child and she was meant to be my daughter and that she would be extremely special and spiritual and that I would write about our lives and our journey together. When the woman said that I immediately understood as I’ve always felt somewhere deep down that I would have a child with Down syndrome. While we lay there, I also remembered the bond that she and I have had from the beginning – how I was certain she was a girl, that there was something different about her, and how she would be fine during the fetal surgery and after. I remembered the visions I had that she would make it to us even after so many months and even years of infertility. And, being here in the NICU with her I have flashes of dejavu and I know that I’ve lived this before somehow, in the dream world, preparing to be strong and capable during this time.

I am certain that I sound like a sleep-deprived, hormone-fueled crazy new mom but this experience is one of the most spiritual of my life. I cannot identify emotions with clarity because they don’t arise from my mind. They are primal and instinctual and are based on being fully present in this moment without thought of one minute from now or one minute ago. I pray we can take her home soon and that I can stay with her every day and every night until then.

 

2017 Year-long Service Project

We provide provides Down syndrome awareness and education at the Whitman Wellness Center. 

In January of 2017 we launched a year long service project at Whitman Wellness Center focused on education and advocacy. There will be several opportunities to get involved throughout the year and we will keep you posted on our blog. All funds raised will benefit the Massachusetts Down Syndrome Congress (MDSC)

The Last Time We Ate Indian Food

Last night Julia Grace was up a lot, like usual. She has reflux that seems to be worse at night, probably because she metabolizes the medication too quickly. We are working to get it better controlled but what we tried overnight, suggested by our doctor, didn't work. Yet still, I woke up grateful. Partially because her dad did let me sleep through most of the wake ups, but mostly because a year ago today was "the last time we ate Indian food". That's how my husband and I talk about the day a year ago when we found out that she likely had a genetic condition "inconsistent with life". When you hear something like that, especially perhaps in relation to a baby you tried to bring into this world for years, your vision gets very, very narrow. "Did I do something to make this happen?" was the question that I didn't even consciously form before it was out of my mouth. My midwife assured me I didn't.

Just an hour before I sat in that room, feeling faint and dizzy with my husband's hand on my back we sat in a nearby Indian restaurant enjoying a meal and ogling the ultrasound picture of our beloved baby. The ultrasound tech confirmed what I had known since long before we even became pregnant -- we were expecting a baby girl. I mentioned to my husband that the ultrasound technicians had behaved a little oddly but he thought I was imagining things. On the walk to the restaurant the receptionist at my midwife's office called to ensure that we were coming to our appointment, which was scheduled an hour or so after the ultrasound. I hung up the phone and said "That's weird. Why wouldn't I come to the appointment?" I had always had a sense that I'd have "different" kind of child so I was certain to ask the woman performing the ultrasound if the baby's nuchal fold was normal (a thickened nuchal fold can be a sign of Down syndrome). She assured me it was normal. Little did I know that piece of information would be one of my biggest sources of worry between the time we found out "something is wrong" until the time we found out she had Down syndrome. I obsessed about it. We knew that we could gladly manage a child with Down syndrome but these other things that the midwife talked about, the ones that were "inconsistent with life," those things broke me in my deepest places. It couldn't be Down syndrome because of the normal nuchal fold and several other characteristics that she had that were not typical of a child with DS. So what was it? Sometimes I felt like that meal, "the last time we ate Indian food" was the last joyful meal we had. The intervening weeks and months were exhausting with complications, fear, and sadness. Through it all even though my head was deeply engaged in fear my heart knew that my daughter was meant to be a loving, living, breathing child. I had visions of her in my minds eye: running around our yard, playing with a friend's little boy; snippets that would come to me randomly. That time was dark, I remember only a tunnel vision and a frantic need to be as close to my husband as humanely possible. There were so many tears. I would tell Ed that I was going to shower and I would sit and sob as the water washed over me. I would wake up in the middle of the night, crying silently. I cried at work and in the car; at lunch with friends; and on the phone. I cried for days, it felt like.

Today, exactly a year later, Julia Grace and Ed and I had a lazy morning together as a family and when we finally got out of bed he fed her and got her dressed and she and I made our way to mom & baby yoga. Tonight we sat together on the couch, as we do each evening, and we made faces at each other and laughed hysterically and then I held her and sobbed again with gratitude and joy.