Accepting Downs and Ups: An Interview with Tui Linthakhan Harned

Accepting Downs and Ups

When Tui and I met the second time in our lives, we were teens hired as summer employees at an outdoor water park.  There we worked between admissions, group sales, cash control, and customer services.  It didn’t take long for us to bond when checking visitors’ coolers for glass or strategically hanging flypaper around the overflowing lost and found cart of wet towels, or when madly dispensing inner-tube tickets to demanding customers, or when using our impressive walkie-talkies to call on cleaning services to assist with animal and human surprises in the Lazy River. 

It is easy to become pals with Tui.  Always positive, super smart, a team player and exceedingly funny, it was great working with her, philosophizing with her, and just being in her presence.  She was then and remains to this day one of the calmest, most centered people I know.  Where I would get riled up about an interaction with a co-worker or customer, she would take it all in stride and help me laugh it off, or at least put it into perspective.  When we discovered we had chosen the same undergraduate college and would be living in the same dormitory, our friendship continued.

The first time we met, we were much younger, not even in elementary school.  Her family had fled from Laos and to a refugee camp in Thailand.  Her dad, Soukan, served as a translator, and he and her mom, Seng, made the brave decision to flee to the United States. In October of 1979 a Jewish agency sponsored their move to the United States, and as they had relatives already living in Rockford, Illinois, (my hometown), they settled there.  Tui’s oldest sibling and brother was 7 1/2; her older sister was 6, and she was just 3.  At the time Tui’s family made it to Rockford, my mother was teaching English as a Second Language (ESL).  It turned out my mother was Seng’s ESL instructor.

Here Tui and I are on our college campus in the mid 90’s and both of our families are visiting.  At some point, Tui’s mom sees my mom from afar and recalls those ESL classes from the early 80’s.  Recognition beams across the mothers’ faces.  Tui and I were stunned that we had met as preschoolers, and we also thought it was pretty cool.  Although I couldn’t remember Tui specifically, I did remember hanging out with the refugee community in Rockford.  Besides the fact that my mom taught ESL, our family also sponsored a gentleman, and so we often attended gatherings and amazing potlucks.  New people, new sounds, new and delicious foods, amazing smells, and a lot of kindness.  I recall being in backyards and basements with my brother and other kids, running through apartments and other homes and stuffing my face with new foods.   Although we didn’t all speak the same languages, we all played; we all felt safe with one another; and we all ate. 

After college, Tui and I remained close friends, found careers, and eventually married our husbands.  Tui and her husband Aaron had their first daughter Maddy eleven years ago and then their son Toby nearly eight years later.  With Toby not yet two years old, Tui surprised us by saying she and Aaron were expecting a third child.  We joked about her elder maternal age and also eagerly awaited the third Harned installment.  Here was Tui, doing her Zen thing, taking life in stride,and having babies when the rest of us decided to hold steady with what seemed manageable. 

As her pregnancy progressed, her doctors had concerns about the baby’s growth.  Because doctors had had concerns about her prior two children’s sizes, and yet both were born healthy and “typical,” this seemed par for the course.  However, medical concerns persisted, and Tui and Aaron decided to have a blood screening done: The MaterniT21 test.  A noninvasive prenatal test, it detects fetal chromosomal abnormalities (trisomies 21, 18 and 13).  The test results came back that their third child was 99.9% likely to have Downs Syndrome. 

Beautiful Mavis Harned was born on April 26, 2015.  She was in the hospital for nearly 7 weeks where the medical team and her parents provided incredible care.  Tui and Aaron managed a host of responsibilities inside and outside of the hospital.  Mavis adapted to feeding tubes and a number of other contraptions and monitors related to Brachycardia and more.  Released in June, Mavis was excitedly welcomed into her home by her family and friends.

For me in my teenage years and through my adult life, Tui has always modeled unconditional love, acceptance, and groundedness.  She also takes playtime as seriously as any other responsibility, and that I admire too.  I find her a vibrant example of connecting the typical world with the special needs world.  If there is anyone to show us how to connect with one another as parents and families, as human beings, Tui has some insights.  I asked her the following questions and, as expected, she dropped some wisdom. 

•  How would you describe your pregnancy with Mavis? How was it different from your pregnancies with Maddy and Toby?

Out of all three pregnancies, mine with Mavis was the best. I felt the best. I believe I was the fittest I’d ever been, despite being pregnant. Save for the month of February, when I had really bad sciatica (which I’d had with the other two as well), I worked out throughout the pregnancy.  I did my last Crossfit work out the day before I had Mavis.  I think because it was the third pregnancy it was easy for me.  I knew what to expect.  I was high risk with Toby so I was accustomed to all the extra doctor visits and precautions.

•  How did you and Aaron support one another through the pregnancy?

We are just a busy family and always on the go that there really wasn’t time to worry about much. We didn’t want to impact Maddy’s extracurriculars so we just maintained the family schedule—Maddy’s piano, dance, and tennis lessons as well as Toby’s speech twice a week—while building in time for my prenatal visits.

We juggled in our gym time, too, because that was important to both of us.  Aaron held down the fort when I had girls’ night or girls’ weekends, as well as my hair appointments and massages (giving and getting).  I didn’t give up any of those things up as they are necessary for my physical and emotional well-being.  Aaron understands that, and that is really amazing.  I told him where he needed to be and when to be there.  My friend Tricia pointed out that the key to our relationship is that I tell him these things and he listens and follows through.  So I guess we supported each other by allowing each other to maintain our hobbies and recreation time away from each other and the family.  As far as Mavis having Ds goes, yes, there was the initial freak out and going through the stages of grief until I reached acceptance.  Luckily, it didn’t take that long to get to acceptance.  Aaron was calm from the start.  He vetoed the amnio idea as quickly as I did.  He didn’t see why we needed that confirmation. He said, “Mavis is going to be the best thing to happen to our family” and that Maddy and Toby would really learn compassion from her. To see him not freak out about it helped me.

• How did you, Aaron, others determine a plan for Mavis' development, post birth?

We decided to treat the pregnancy as if Ds were a sure thing since we declined amniocentesis and instead based it on the 99.9% positive result from the MaterniT21 screen. That result along with my being high risk from my age alone meant extra doctors visits. I had my regular OB, Dr. Battacharya, and my Maternal Fetal Medicine (high risk) doctor, Dr. Rogers. They consulted with each other and with me—lucky for me they were good friends and the coolest doctors! They respected our decision to decline amnio but kept a close eye on Mavis and me. They referred us to Dr. Hoganson, the genetics specialist. We talked about how genetics would do a karyotype of Mavis’ DNA at birth to confirm the Ds and then we’d just take it from there, which we did.

• You seem to have found and also developed a strong network of people who care about your and Mavis' wellbeing.  You seem to be bringing positive attention to Downs Syndrome and your beautiful daughter (e.g., social media, local activities, etc.).  How do you build this community?  Why is this community important?

As soon as Ds was a possibility I researched and networked.  My contact with kids with Ds and awareness of it had been minimal but still probably above average.  Friends got me in touch with other friends who had a kid or sibling with Ds or other special need.  I had nothing but positive reactions and people reaching out to me.  It was important to see that Ds is not the end of the world, and this network helped with wrapping my head around that. Yes, there’d be health challenges and delays in her development and milestones, but it wasn’t a death sentence by any means.  The network, especially of parents who had gone through exactly what we were going through with the initial prenatal diagnosis (and when I say prenatal diagnosis, I’m referring to the MaterniT21 screening still), they always said, “I wish I knew then (during pregnancy) how wonderful my life would be having a child with Ds.” And it’s true.

• What have you said to Maddy and Toby about Mavis' Downs Syndrome diagnosis? How do you see them interacting with Mavis? Anything different because she has Downs, or is it typical sibling interactions?

Maddy has had classmates and peers in dance lessons and in her Creative And Performing Arts program with special needs and with Ds specifically.  She’s always been aware, compassionate, and inclusive.  Toby is Toby, too young to know any different. He loves Mavis and is already protective of her. There’s a feather in his cap.

• What advice would you give to other people who are expecting a child with Downs Syndrome?

I would validate whatever they are feeling, especially the fear and anxiety.  I would encourage them to create a network and invite them to meet Mavis or any of the other amazing kids we’ve met who happen to have Ds.  I am positive they will leave feeling a little better about the future.

•  What are your hopes for Mavis?

I want her happy and as healthy as she can be. I want her to reach her full potential, physically and cognitively.  I’ve read about kids with Ds growing up to be independent adults, going to college, having a job, driving, even getting married, maybe even having a child—whatever is right for her.  Isn’t that what everyone wants for their children?  Nothing is different just because of the extra chromosome.

•  What are your hopes for your family?

I want my kids to get along and to love and appreciate one another.

•  I've seen you live centered and calm since the day I met you.  Is this innate, or do you work at it?  Any tips for how to remember what matters, stay calm, let things unfold as they are?

When I finally realized that no matter the situation, it could always be worse and that the only person I can control is myself, life got way easier to handle.  I honestly don’t have time for drama and getting my blood pressure up over other people’s nonsense.  I really do try to appreciate the here and now and be present—don’t stress about past because it’s done, but you do need to learn from it.  I don’t want to freak out about the future because that takes away from today.  It all sounds so cliché, but that’s really how I try to live.  I just try not to compare my life to anyone else’s.  I don't even look up kids' developmental milestones like I did with Maddy or Toby.  Mavis is on her own schedule and she'll reach those milestones when she reaches them.  I'm not going to stress about how she's not sitting up on her own yet while kids younger than her are pulling themselves up to standing.  I'll be excited for her when she gets there--whenever she gets there.  I've never been the overly weepy parent like, "Oh my goodness, where did the time go?" or "I can't believe my baby is in X grade or is X years old".  I've always been excited for the new independence my kids gained.

• While you have this calm and chill way about you, you also don't put up with bad behavior or nastiness from children.  Besides being a parent you are also an early childhood teacher and interact with little people every day at your school.  How would you describe the strategies you use to stay calm and nurturing while also disciplining in a clear and direct way?

I try to stay cool [with our own kids] but have lost it on a few occasions, and I immediately regretted it.  Again, only I can control myself.  With other people, specifically other people’s children, the best I can do is be clear and direct.  Lay out the expectations in language they can understand.  When and then statements:  “When you put this toy away then you can get a new one out.”  “When I see that you are calm, then I will talk to you.”  I don’t give choices when there aren’t any to give.  I don’t ask a kid, “Are you ready to put your jacket on?”  No. “It’s time to put your jacket on to go home.”  The key is understanding that kids aren’t being nasty or naughty to be naughty (usually).  They are doing it for a reason, usually attention.  I don’t play that game.  I won’t engage in a power struggle with a child.  They have to see me being consistent.  They also have to see that I’m good on my word.  If I say something is going to happen, it’s going to happen:  I’ll put away a toy and tell them they are done playing with it because they were not being safe or appropriate with it or, conversely, they get a reward because they earned it.  If these things happen only sometimes even though I always say they’ll happen, I cannot be trusted to keep my word, and I cannot reasonably expect them to behave or do the right thing.  Follow through is everything.  Also, kids are constantly listening and watching, so modeling the behavior I want to see is important.  I’ve tried telling this to my students’ parents, and whether they use my strategies at home is up to them.  I have the mindset that as long as they know what to expect from me, they will behave for me, and that’s all that really matters to me.  Kind of selfish, but I’ve also realized and accepted the fact that I cannot save the world.

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Much in Tui’s recounting of her pregnancy, delivery, and first year with Mavis are ripe with universal truths that are critical for any of us as parents, as married people, as human beings.  Making and taking time for self-care.  Respecting your partner’s time for self-care.  Learning from the past but not fixating on it or stressing about it.  Asking our partners for what we need.  Accepting life as it unfolds.  Staying positive.  Being clear and consistent.

I’d love to hear from others about what resonates for you as you read Tui’s story. 

• What have been your experiences as you prepared for a child with Downs or another diagnosis? 
• What agreements have you made with your partners (or family or friends or even with yourself if you are a single parent) to make sure you take care of your individual needs? 
• What do you find to be some universal parenting truths?

I asked Tui for resources she finds helpful as she and Aaron parent Mavis.  She mentioned Gigi’s Playhouse, a Down Syndrome Achievement Center, http://gigisplayhouse.org/ and I Run 4, IR4 http://www.whoirun4.com/, where runners are matched with buddies and a meaningful relationship develops. Tui emphasized how helpful it was and is to meet with other parents who have children with Downs, and she noted that there are a number of Facebook groups where expecting parents can find support as well as other Facebook groups once babies are born that create cohorts of parents based on children’s ages. Check it out~