Tuesday, May 22, 2018

Quitting

Dear Jules,
No one ever wants to be a quitter: quitting, especially in our culture, means giving up, giving in, and, worst of all, failing.  I was chatting with a dear friend the other day who has decided to make some major changes at work.  Even though her work life has caused her depression, anxiety, and even put her in the hospital, her main worry was the same one I would have had: that people would perceive her as a failure.  Even worse, that she would perceive herself as a failure.

For the most part, the desire to "keep going" is a good one.  As I tell you a lot, we always "keep trying," and we learn from the trying.  But what if the trying is just not working for us?  What if the solution, the way we can gain control in our lives, is to just stop?  I was reading an article on the internet, and the author writes this:

Letting go of something puts you in control. If a project or relationship isn’t bringing you value and isn’t working the way you want, quit it.

How can letting go put you in control?  Doesn't it mean that you have let go, that you've stopped trying, that you have failed?  I thought about this some more, though, and it does make perfect sense.

I feel like my life is a game of jenga: you know, the pieces that you build into a tower, hoping it doesn't fall apart?  

On any given day, I will get up at 5:45, make you breakfast, get you dressed for school, walk you to school, try to get some work done but also run at least five miles (if I don't run, I get anxious), pick you up early from school, take you to at least two therapies, all 1/2 hour away from our house, go home and entertain you, make dinner, do the bedtime routine, and, if it's during the semester, then grade and prep all night.  

So the minute my semester ended, I thought I "had some extra time" and decided to do a yoga challenge.  26 classes in 28 days.  "I can do that," I thought.  "I can do anything I put my mind to."  But I didn't want to give up running, and I can't give up anything else, so I just squeezed it in, put it on the pile.  It was working (sort-of) until you got sick last week and were sent home two days.  Once you started to feel better, I got pink eye, which is a really infectious eye infection.  So I'm here, my eye itching like crazy, thinking about not going to the doctor because I "have to" attend a lecture at school, go to a dentist appointment, take Puck to the vet, and keynote a lecture on Thursday.  And, of course, take at least one yoga class every day.  

If the point of yoga is to be mindful, to connect with your body, I finally (with the help of your daddy) had to realize that this "challenge" was causing me anxiety, causing the jenga tower to fall.  In fact, I gave up on the lecture and the dentist appointment and am now home, catching up on work and resting so that I can do this lecture.  

Tomorrow I have to take Puck to the vet, Thursday I do my lecture, and Friday we are headed to NYC, so I will not complete the yoga challenge.  

Do I feel like a failure?  Yes...but I keep thinking about that jenga tower.  Is it better to keep stacking until the entire thing falls down?  Or is it better to quit when you are ahead?  When do we quit, and when do we keep pushing?  This is such a difficult life lesson, and I'm still learning it, but I want you to know that, if you start feeling like trying is making you miserable, like trying at something is hurting your mental health, then it's okay to quit.  It's your body telling you that it's time to listen to yourself, to take control.  Whether it's a job, a dissertation, a relationship, or just a yoga challenge, it can be hard to "quit," but it might be the bravest decision you make.  


Thursday, December 7, 2017

Zsuzsa Néni

Dear Jules,

I've been meaning to write this for over two weeks now, and I just can't find the words.  My aunt, your great aunt, Zsuzsa Néni, was one of the biggest presences in my life.  She was larger than life, always busy, always working to make things nicer for her family.  Every time we went to Hungary, she organized huge get-togethers so that we could see "everyone," she had opinions about, well, everything, and she was happiest with lots and lots of people surrounding her.

Having said all of that, if I was sad and needed someone to talk to during my Fulbright year, she would happily sit and chat, and she actually listened (a skill that, you will learn, is a really rare one).

When she heard about you, she was thrilled to have someone with Down Syndrome in our family.  You unfortunately did not get to spend too much time with her, but when we went to Hungary, we always spent time at their summer house (now my cousin's summer house) in Bükkszentkereszt (don't worry if you can't pronounce that).

Here we are cooking Hungarian bacon- basically, you hold the bacon over the fire and drip the fat onto bread that has been topped with onions.  Very different from our version of bacon, but you definitely enjoyed it, especially the bread.

There she is, sitting right next to Julia.
This summer, we went to Hungary again- she had cancer which had metastasized (spread) from her breast to her spine, and we knew she wouldn't have much time left.
Watching you with her was one of the sweetest things in the world.  Even though you always play hard, you knew to be gentle, to snuggle, to give her what she most needed: pure love.  This is one of my favorite pictures of you:
Looking at this picture brings tears to my eyes...I don't know if you will remember Zsuzsa Néni, but I want you to know that she loved you so very much, and that it meant a lot to her to see you before she left to join God and the angels.  And it meant a lot to you to see her, too...I know it did.
She had this poem read at her funeral, and I think it's just beautiful.  Here's my attempt at a translation:

Trees, Stars, Animals and Rocks
Love my Children.
If they were far away from me,
I have always trusted you with their fate.

You have always been good to me,
Love them if I die.

Winter, spring, summer, fall, rivers, islands
Love my Children.

You, sandy, rocky, or asphalt street
Lead carefully the girl, the boy

You teach and nurture too, dear Sun
Sneak your rays into their pockets
And all of you, living and dead materials
Teach them, clouds and eagles

Wild lightning, good ants, little snails
Take care of them, enormous world.

People are wicked, I do not trust them
But fire, water, sky, and earth are my true relatives.

True family, I turn to you
I will become fire, water, sky, and earth if I die

Fire, water, sky, earth and all the gods
Please love those whom I love.

Zsuzsa Néni saw you as one of her children, and I know we will see her often, in the fire, the water, the sky, the earth, the lovely animals, and, of course, the orchids, which she loved.  



Monday, September 25, 2017

Confessions of a Recovering Judger

Dear Jules,
Every time I read the Bible--okay, let me be honest, every time I go to church and listen to the Bible--I'm struck by the sections about the Pharisees judging Jesus.  He heals the blind, the sick, and the lame, but these priests, supposedly religious men, attack Him because he's not following the rules.

Their rules.

It's easy to look at this and think we would never be so closed-minded, but most of us are, when I think about it, a lot like the Pharisees.  We grow up with or develop a certain set of rules and, when people make different choices, we judge them.

For the most part, I think it makes us feel better about ourselves and our choices: surely we are the ones in the right?  Surely we have it "right?"

Then again, that's probably what the Pharisees thought, and now their very title is shorthand for hypocrites, people who superficially do what's right but don't look at the spirit of the matter.
When I was younger, I confess that it scared me not to see the world in black and white.  If there were "right" choices and "wrong" choices, I could simply make sure I chose the correct ones and avoid making mistakes.  I judged people who I thought were making mistakes: my classmates, my brother, people on television, and, too often, myself.

I was a really unhappy person because, every time I deviated from my own rules or made a "mistake," I was convinced that I had made an irrevocably wrong choice.

Fast-forward thirty years or so, and I'm now a mom, a wife, a professor, a person who has been forced, by life, to see many shades of grey.  I've learned that choices are not "wrong" or "right," they are sometimes the best choices for a particular person, a particular situation.  I remember very clearly when I was twenty-seven, sleeping in the critical care unit because my father was dying.  I was single, no partner in sight, and feeling really crappy about it, and I met a woman who had married and had kids at age 16.  She told me she envied my going to college, graduate school, and working, and I realized then that all of our choices or life situations are not better or worse, just different.

Nothing has made this more clear than becoming a parent.

The minute you become a parent (or maybe even before), people start judging your choices.  Why are you letting your kid wear that?  Eat that?  Do that?  Why don't they sleep with you?  Why do they?  Why didn't you breastfeed longer?  Why did you?  No matter what you do, it seems that you can't win.

Your Nagyi and Grammy both stayed at home with me and with your dad, and they were judged for it.  When women like I work, we are judged for it.  As a teenager, I often wondered why my parents made certain decisions, but now I realize that they were simply making the best decisions they could for our family.  That's what every parent wants: what's best for his or her child.  Our definitions of that might be different, but we have to let up on the "mommy wars" long enough to respect each other, to concede that people's choices might be different (not better or worse) than ours.

Last weekend, I ran into a very blunt special-needs grandparent.  When I asked her if her grandson was mainstreamed (because she was talking about going with his class on field trips, like I do for you), she said "no" and proceeded to tell me that mainstreaming was not the right choice for you.  How were you to learn life skills, to succeed as a person with a disability, if you were not educated by special education "experts?"

I'm sure many people have thought this, but no one has ever asked me outright, and I must admit I was left flailing.  She then talked about how "we young people" don't understand the meaning of sacrifice, working when we should be staying at home with our special needs kids.

I left the situation feeling deflated, insecure, attacked and torn apart.  Once I thought about it, I realized that she must be pretty insecure about her own choices to attack another's so bluntly.  I wonder if she, too, is unhappy.

I want you to know, Jules, that I mainstream you because I've read lots of studies that show this to be a good approach.  Because you have lots of friends at school who love you, and because you might learn language more quickly by being around it more.  I don't want to judge people who don't because I can see their side as well, and it's becoming more and more difficult to keep you included.  Bottom line, I want to do what's best for you.

If you're reading this and you've had to go to therapy because of my decisions, I am so sorry.  I want you to know that I try to do what's best for you, and it's all any parent can do.
And I want anyone I might inadvertently have judged to know that I'm truly sorry.  None of us can live each others' lives, but what we can do, especially as special needs parents, is to support each other.

Instead of attacking one another, we can do what Jesus did: we can heal each other.  We can't heal the blind, but we can educate people and help them to see.  We can't exorcise spirits, but we can listen and be there for our friends with mental illness.  We can't heal illness, but we can be there, like that woman was for me years ago in that waiting room.  Being there, listening without judging, is perhaps our best form of healing.

I'm not there yet, but I'm working on it.




Tuesday, August 22, 2017

Bright Lights

Dear Jules,
I've been thinking a lot about light lately- literal light and people who have lit my way through life.  Yesterday, on August 21, we experienced a total solar eclipse, which was really pretty amazing.
At 2:46 p.m., the street got really dark and the streetlights went on...it felt like night in the middle of the day, and then the sun came back, the light came back, and life went on.  

We watched on our cul de sac with your uncle Lee and Aunt Maggie; you were, however, taking a nap.  Even if you hadn't been napping, I wasn't sure that you would understand what was going on, the importance of keeping your glasses on, etc...I'm very sad that you missed this one and have already decided to take you wherever you can see the total eclipse in 2024.  (I'm writing it in this blog as a contract with you!).

I did want to write about how uncanny, how unnatural it felt to have such a bright light extinguished so suddenly.  That and the beginning of the school year have made me think of my two teaching heroes, both bright lights who passed way too soon.  I know that sounds clichéd, but I can't think of any other way to describe them.  Both of them had these amazing smiles that, to use another cliché, lit up the room.

When I went in to school today to finalize my syllabi, and before I go to bed tonight, I'll look at each of their pictures, for they each taught me so much about teaching, about life.  When I look at this picture of Conseula Francis, I think about her great relationship with students, are ability to be fully real,  her awesome ability to make everyone and anyone feel at ease.
I'll never forget the breakfast I had with her at Jack's Cafe during my job interview, and how she immediately took me into her confidence about her daughter Francis and some of the challenges she had living in Charleston as a black woman.  
She taught me to say black, not African-American.
She taught me that it's okay to be utterly silly sometimes, to wear funky shoes, to read and enjoy romance novels, and to fully geek out in front of my students.  
She also had a ferocious intellect and fought hard for what she believed in, which is probably why she was such good friends with my other role model, Alison Piepmeier.
I met Alison a bit later, as she was actually on maternity leave (I think) when I came to interview.  I was initially intimidated by her, but I learned that Alison was one of those rare people who really paid attention, fully, to what was going on around her.  If she was working, she was working.
If she was listening to me, she was really listening, 100%, not thinking about something else.
And if she was teaching, she was there, fully present for her students.
It's actually hard to be fully present when teaching, especially when you're doing it for hours on end and thinking about what you want to accomplish.  The trick, I learned from her, is to not focus on what you want as much as on what your students want.

Perhaps both Alison and Conseula were such great teachers because they were such great moms, although I'm sure that's not the kind of feminist statement either would endorse.  What I mean by this is that I've learned to try and always put your needs above mine, and I try to do explain things in a way that you, as a unique individual, will understand.  Conseula treated both of her children, Francis and Kate, as unique, as important, as people with opinions, not (even when they were really young) as "just kids."  Alison's parenting of Maybelle, something she made public through articles in the Charleston City Paper and on her blog, was similar.  Maybelle, like you, has Down Syndrome, but Alison focused, always, on her strengths, on her possibilities, on her abilities, and on including her in "regular" classrooms.  She is the reason you are in Stiles Point, in first grade with "typical" classmates, today.

Both of these lights were extinguished too early, and, when they passed, I remember having a feeling similar to the uncanniness of dark at 2:46.   I wish it had been just like the eclipse, a brief moment of weirdness before the lights came on again, but, sadly, it wasn't.  

So we content ourselves with shards of light, pieces of hope.  The lessons I learned from them about teaching, about parenting.  The books they wrote, Conseula's about Octavia Butler and Alison's many books, one of which I am now reading (about female magazine editors in nineteenth-century America).  About being present, being funny, and, most of all, being myself.  

As I being the 2017-2018 school year, I will think of all of these lessons often.  I keep a picture of both of them on my desktop so that, when I'm feeling like I want to quit my job, when potty training you seems remarkably frustrating, when I feel like I'm not a good enough scholar, teacher, or mother, I think of them...and their light lives on.  

Thursday, August 17, 2017

Hungary

Dear Jules,
I know that you're thrilled to be home, to be with Puck, and to be with your friends at school, but I would love for you to remember, when you're older, how meaningful these past three weeks were.  You saw so many family members, all of whom love you so dearly.  Perhaps most meaningfully, you got to see my aunt, Zsuzsa néni, who I'm not sure you will get to see again.  You were so sweet with her- normally you snuggle and pull on hair and wrestle, but you lay there with her, sweet as pie.
It's like you knew, and it made me respect you so much more.  You are a person with a wonderful heart, open, willing to give your love to anyone and everyone (even the drug dealer in the ER last year who had been shot, but that's another story for another day).
You also got to see Nagyi, who loves you so very much and, just like Grammy, embraced you from the beginning.  You really are lucky to have so many people who love you, so I made you a video of our visit:
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The video is about family, but I'd also love for you to remember the beautiful landscapes we saw.


This is the Hortobágy, Hungary's Great Plain (the largest plain in Europe).  The people who lived here were horse and cattle herders, so we got to witness some interesting shows of prowess, like the one above.  

We also went to these amazing Stalagtite-Stalagmite caves in Aggtelek, on the border of Hungary and Slovakia (the caves actually go to Slovakia). 
The coolest part was a "concert" during which they lit up parts of the cave:



The next day, we went on a hike in the mountains in Slovakia.  You weren't able (yet) to come with us, so I want to show you pictures of what they call the "Grand Canyon" of Slovakia.





After that, we spent a lot of time with family, so our next scenic trip was to Budapest.  You were there for this one, but I wanted to share some pictures so that you'd remember:
Parliament at Sunset

During the Day


Inside


The Lower House Chamber


And, last but not least, I'd like to add one more video.  Mom and I went to a concert at the St. István Basilika, and a violinist and his group (the Duna String Orchestra).  I still think he rushed it a bit, but he played the meditation from Thais, a piece my grandfather played often and taught to me.  So I wanted you to hear it, although I wish to God that you could have heard him playing it instead.  I can't get my recording to come up, but here it is on YouTube:



Sorry to bore you with all of the pictures, but I really wanted you to remember this trip, both because of all of the family we were able to see and because of the beautiful scenery.  You come from a heritage of proud, smart, musical people (on both sides), and I want you to remember your roots, always.  



Tuesday, July 18, 2017

Disability Literacy

Dear Jules,

I'm going to change tacks for a second and think about disability; I'm teaching a class about neurodiversity, which is a fancy way to say that everyone's brain is different, and we should celebrate that.  What we as a society call "disability" just means that our brains work in different ways: if you're blind or deaf or have Down Syndrome or autism, different centers of your brain will process, well, differently.

In my class, I will have my students first think about their own "disability literacy," or their practices of "reading" disability.  How do we learn how to respond to disability?  We might feel uncomfortable, or look away, or not know what to say, or even tell a new parent "I'm sorry" upon hearing of a diagnosis.  I would have done all of these things before I had you, and before I became privileged to be a member of an amazing disability advocacy community.

I've had this horrendous headache for a week now (sinuses, as you know, are the pitts), so I took a break to watch an episode of a show I'm teaching for my class, Switched at Birth.  This ABC Family show examines stereotypes around the deaf community through a soap opera-type plot: a deaf girl and a hearing girl are, literally, "switched at birth."  The new families must then come to terms with their new daughters and their extended communities, including the deaf community.  The show isn't perfect, but I'll be showing my class one episode done entirely in ASL--it forces hearing people to be the outsiders, to read the captions, to be privy to a different way of communicating.

So today I'm watching an episode and (spoiler alert) learned that one of the minor characters' ex-girlfriends is, in soap opera fashion, pregnant.  Then, at the end of the one episode I was going to limit myself to, the girl, in tears, reveals to Daphne, the deaf character, that she took a genetic test and that the baby...has Down Syndrome.

And the screen fades to black.

I was really, really upset by the end of this episode.  I mean, why not just add the sound effects:  duh...duh...DUH!  It felt like when you find out someone has died, or someone is cheating.

But I kept watching, and I continue to be impressed by what this show is doing.  In the next episode, when the pair thinks about getting an abortion ("it often destroys marriages," the young man says), the writers have Daphne talk to her brother, the baby's father, about the fact that she, too, was born "different."
"Well, that's not the same thing," her brother argues adamantly.  "You're deaf, you don't have Down Syndrome."
The point she then makes is that disability is just a social construct, and that deafness, Down Syndrome, or anything outside the "norm" require adjustment, but they enrich our world.

Still a bit cheesy, but then they added this episode to the mix:


I'm so happy the writers decided to add this story to this already progressive show: to showcase this young couple's struggle, show some of their challenges, and ultimately reach a wide viewing audience with the message that neurodiversity is a beautiful thing and that, as we all keep saying, our kids are more alike than different.

I think I will show some of these clips to my students next semester.  For all that the media often gives us a distorted sense of disability ("despite all odds, this kid graduated high school" or "can you believe it?  This person is an athlete") and, even worse, stresses pity over acceptance, this show is, for the most part, doing it right.


Sunday, July 16, 2017

About Medicaid


Dear Jules,

Today I want you to have something that I'm writing for our senators and for the local newspaper.  It's about the benefits that you and your friends receive: benefits that could be taken away in new proposed health care legislation.  I want you to have this for a number of reasons: to see how hard our community fights for you and your friends, and to remember the other kids (and their parents) on this journey with us.  So, without further ado, here it is.




I experienced a myriad of emotions when my little girl was born: joy, relief, and fear.  Julia has Down Syndrome and, at that time, I had no idea what challenges or costs it would entail.  Thankfully, I learned quickly about the support system of other parents who have children with disabilities--there are over 200 families in the lowcountry who have kids with Down Syndrome.  They told me about a South Carolina Medicaid benefit, called TEFRA (Tax Equity and Fiscal Responsibility Act).  TEFRA provides Medicaid to children who would otherwise not qualify, but whose medical and social needs can be prohibitively expensive.

When I was growing up, I heard stereotypes about people on Medicaid being “lazy” and “scamming the system.”  I was taught that, if you worked hard enough, you wouldn’t have to “rely” on the government.  Yet Medicaid, in the form of TEFRA, has enabled us to take Julia to three therapies a week (speech, occupational, and physical therapies) and pay for numerous doctor visits due to her ear infections, constant strep throat, Celiac disease, and generally low immune system.  “Lots of kids get sick,” you might think, but the difference here is that our kids, kids with disabilities, will have limited resources when they are older.  If we didn’t have TEFRA, we might still do all of these therapies, but there is no way we could save for Julia’s future; paradoxically, the fewer procedures and therapies she gets, the more beholden she will be to the state and federal governments later in life.

I’m really thankful to South Carolina for providing this benefit and allowing us to keep working, saving, and making Julia’s future as bright as it can be.  With the permission of my friends, I wanted to share some of their stories, too. 

This is Jude.  According to his mother, Gini Nichols, Jude receives therapy 4 times weekly. As is the case with most policies, including mine, insurance covers 30 visits a year, meaning they would exhaust this in about 3 months. According to Gini, “TEFRA also covered open heart surgery, multiple hospital stays, and continued specialist visits.”

This is the case for most of our kids, including Mae.  Her mother, Jaime Thomas Nettles, adds that “Research shows that children with Down Syndrome thrive in the community by early intervention [our children also receive this benefit until they turn three]…She deserves to be a working thriving member of society just like everyone else.”
 
According to Jill Griffith, mother of Parker, this would also cost our state families with valuable skills (I myself teach at the College of Charleston, and my husband is an IT director at MUSC). She writes that, “after multiple surgeries, 4 therapies a week, and possibly an upcoming eye surgery, a significant portion of our household income would be tied to Parker's medical expenses without TEFRA.”

Denise Brewer Brown has not one, but two children with special needs.  According to Denise, “Jack receives PT twice a week, OT, EI [early intervention] and Speech. “He has a helmet and special shoes to help walking.  Evan receives PT, OT and EI. “That's not including specialist appointments.” 

Callie, the daughter of Kerry Litten (left), also receives four therapies a week, along with the many services already mentioned.  
One of the stories I’ve been following most closely is that of Daisy, daughter of Holly Nye.  Like many children with Down Syndrome, Daisy also deals with heart conditions.  According to Holly, she “spent the first 9 weeks of her life in various units of MUSC, has many appointments with multiple specialists, PT, OT, and SLT [speech language therapy] weekly, EI biweekly, has had 5 surgeries so far including open heart surgery, among multiple hospital stays.” Like almost all of us, Holly and her husband work full time but would be in debt if it were not for TEFRA.


We all come from different places, have different experiences, different faiths, and different political beliefs, but our stories are unbelievably similar.  We all work hard, we adore our kids, and we want them to be productive members of society.  We all believe that providing them with the services they need (without bankrupting us) will allow for that to happen in future.

Danny Raynor
Asher Ferrell
Jakob Jones
       













Behr Glocker
Freddie Taylor
Becka Winger


Many of the pictures I was sent were of the babies in our group, like Davis Dawson, right, who has also had a number of medical issues and seemingly lives at MUSC.  But I don’t want to forget that our kids will grow up and have different, no less important, needs. 

They need to integrate into school, like Lily Waddle, left, and services like occupational therapy are essential to that.  Sheyenne Morris, pictured above, graduated from high school due in part to the services she received from the state.  Sheyenne, 21, received services in elementary and high school.  According to her mom, Julie Morris, she would not have made it as far as she has” if the family had not received assistance. “She is a very strong-minded young lady,” Julie writes, and she is “so proud of all [Sheyenne] has accomplished.”
And, as Gene Carpenter, mother of Elizabeth Carpenter, says, Medicaid not only helps individuals and their parents but is also essential to the well-being of siblings, like Elizabeth’s brother Edwin, pictured here.
As Gene writes, Elizabeth “is the success story of Medicaid… Today she is a rising junior at Bishop England High School in completely inclusive classes  and goes to school with her “baby” brother, Edwin.  “Elizabeth,” writes Gene, “is going to make it – she will live independently, she will hold a job. Edwin is the lucky one – his life is rich from his experiences with Elizabeth but his future will not be burdened with the responsibility of full time caregiving because Elizabeth received all the services she needed from Medicaid.”

These are just some of our stories, and this is just the Down Syndrome community.  I also have friends whose children are on the autism spectrum, or have cerebral palsy, or suffer seizures that require constant supervision.  Look at these faces: these children are anything but lazy, and their parents are not only not exploiting Medicaid but are using its benefits to create better lives for both their children and their siblings. 

Many of my friends do not live in South Carolina and do not receive Medicaid.  Kaetlyn Spivey’s mother, Kelly, writes that they moved from Seattle, where they did not receive Medicaid benefits.  When Kelly’s employer asked them to return, Kelly rejected the offer because “this is better for Kaetlyn.  The other side is very very expensive”!

 I want to be clear that we are so very grateful for the assistance you, the taxpayers of South Carolina, have given to us.  Please know that, as you and your legislators prepare to make choices regarding health care reform, these children continue to count on you.