Thursday, December 10, 2015

Change

Dear Jules,
I'm reading a book by the Dalai Lama called The Art of Happiness, which, I just found out on Amazon, is ten years old (just a tad behind the curve).  In this book, he writes that the one thing we can always rely on is that things will change.

And this, though simple, is a hard truth to swallow.

 Sometimes, change is good: I hope and pray that, when you are old enough to go to college and get a job, these things will be available to you.  I hope that attitudes toward Down Syndrome change (they are already changing).  I hope that, when you are an adult, you don't have to read about mass shootings every single day.  Without change, things would be stagnant and we would lapse into stereotypes, prejudices, and untested attitudes.

But I must admit that, personally, I suck at change.  Friendships change as we grow older, have children, move away from one another;  we are always changing in ways that are difficult to understand, and the people in our lives change.   Sometimes, I kind-of feel for Edmund Burke when, in his Reflections on the Revolution in France, he writes about the importance of tradition (and then I remember that what he wants is for the people with money to keep having money, so there's that...).  But I do think that, at this time of year, it's why we hold onto traditions for dear life: they are something we can count on, something that, hopefully, won't change.

But even traditions, and the people we share them with, will change.  Christmastime is always a little difficult for me because I really miss my childhood traditions.  Grammy and Papa try to include my traditions in theirs, and I'm grateful for that, but I remember fondly Christmases with Nagyi, your other grandfather, and your uncle Julius.  As you know, my father died long before you were born, I very rarely see your uncle, someone else lives in the house I grew up in...so now, being "home" for Christmas means being in our home, and we make traditions of our own for you to remember (and, like me, to romanticize).

What can we hold onto that won't change?  Well, we can hold onto our memories.  Here is a Christmas picture from when I was a little girl:
And here's one, not from Christmas, but of my little family:
Do you recognize Nagyi?  And I was not even one in the first picture, and definitely younger than you in the second.  Someday, you will show your own pictures--your own memories--to others, whether family or friends.

But the bigger thing that we can hold onto is love.  Since we are always changing, love means accepting those changes and loving others for who they are, and this, too, is difficult, but not when I think about how unconditionally I love you, or your Daddy, or Nagyi, or any of my family.  Our lives might change--we might not, like my dad, always be around--but our love for others still remains. Look at that picture of my dad, your grandpa.  See how much he loved me?  See how much Nagyi loves Uncle Julius and me?  No matter where we are, no matter what we do, no matter our beliefs--even though we might not be in the same house or with the same people--that love always remains. It's what roots us and allows us to grow.

It's why, every night, I remind you that:
Mommy loves you
Dada loves you
Grammy loves you
Nagyi loves you
Papa loves you
Great-Grandpa loved you
Your uncles love you
Aunt Maggie loves you
Your sister Bertie loves you
Your friends (and here we list them all) love you
Beasley and Puck love you
God loves you.

Your friends might come and go, but the rest of the people (and animals) on this list will always love you, and with that, we can weather this thing we call change.





Tuesday, November 10, 2015

Country Music and Humility

Dear Jules,
Well, you might be surprised at this blog title since these words are far from my favorites.  I will admit that, although I listen to absolutely everything from hip hop to rap to classical to folk/bluegrass, straight out country is a bit too corny for me.  No offense to my many friends who love country music- it's just not something I ever grew into (although I am going to give it a try today).

And humility: well, I have a troubled relationship with this word.  Growing up Catholic, I always felt that the point of humility, especially as a woman, was to be "less than."  Less than men (especially in the church), less than others.  My grandmother always said that we should just think of ourselves as dirt and, while that might be literally true after we die, it did nothing for my already precarious self-confidence.

So why am I writing about these two words together?  Well, today in yoga class, we discussed humility as the art of "being present" or clearing our minds so that we can observe.  In other words, then, humility would be like negative capability: taking our egos out of the picture so that we can observe life?  And celebrate it without ourselves getting in the way?

This, to me, is really different from "you're just a piece of dirt."  It means that we are part of something bigger, and we need to keep that in mind in order to keep our petty concerns from overwhelming that reality.  This morning, I read an article about a country music singing couple I had never heard of, Joey and Rory Feek.

Basically, Joey Feek was diagnosed with cancer a year ago, shortly after she had her little girl Indiana, or Indie.  She has battled two different types of cancer and has now decided to go home to be under hospice care: to spend time with her little girl while she can.  She's young (39), has a blossoming career, is beautiful, and has this all-encompassing faith that I envy, but instead of complaining, she had her husband have decided to cherish the time they have left.

This is, in and of itself, commendable.  As a side note, a friend of mine mentioned that the little girl they had a year ago has Down Syndrome...like you!  So I did more reading and found Rory's blog about the "diagnosis," and it was the most down-to-earth thing I have read:

In the days that followed, there was some concern about Indy and through genetic chromosome testing done at Vanderbilt Children’s Hospital, it has been confirmed that Indiana has Down Syndrome.  Although that news came at first as a surprise to us, Joey and I wouldn’t have changed a thing.  During the pregnancy, we never did an ultrasound, or saw a doctor, nor would it have made any difference if we had.  We trusted that God would give us the baby He wanted us to have… and He has.  Out of all the parents in the world, He has chosen us to care for and raise this special gift.

The baby is healthy and doing wonderful and Joey and I are loving each and every minute that we have with her.  We can’t wait to see where this new chapter in our lives leads us and what wonderful story unfolds in the coming years. 

And that, Jules, was it.  No "I was angry with God," or "why me?" or any of the painful things we read when we read about "the diagnosis."  Instead these people are just excited to have A BABY. And with Joey having little time left, the emphasis is on her enjoying her time with you, not on the fact that Rory will be a single dad to a daughter with special needs.  Clearly, the only special need that these people think she has is for love.  And that, Julia, is true.  And humble.  And real.  Here's a video that made me cry because it reminded me of when you came into our lives.




the birth of Indiana from Hickory Films on Vimeo.

These two things have reminded me that, even though it's sometimes hard to juggle your therapy and my work, and even though I'm sometimes jealous of parents for whom these developmental milestones are more simple, I can never stop being humble: being fully present, observing life, being negatively capable so that I can make room for joy and gratitude.  We are so very lucky to have you in our lives, and I wouldn't ever ever change a thing.  So if I complain about being tired or overworked, as we are all wont to do, I hope I can remember this strange conflation of country music and yoga and remember to be humble: to be grateful, as I was when you came into our lives.


Thursday, November 5, 2015

Halloween Nostalgia

Dear Jules,
One of the great joys of being married to your Daddy is re-discovering Halloween.  I've always been a bit iffy about the holiday, but Daddy takes such unadulterated joy in figuring out constumes, dressing up, the whole shebang.  While most parents, and many dads, don't dress up, yours does, and it's always...epic.  So here's a tour through memory lane of our various Halloweens.



This was one of our earliest Halloweens; I am dressed as Leia and your Dad is dressed as Luke (from Star Wars, but you know that).  



Here is us, in our house now, as KISS, and puck with his devil wings on (he dresses up, too!).  When I was pregnant with you, we dressed up as Mario and Luigi (that's you in my tummy!!).
But we REALLY started to have fun after you came along, Jules.  

Here you are on your very first Halloween, and Nagyi was here visiting, too.  Once you got bigger, we were able to do family costumes:


Here's our (in)famous Mad Max costumes, with you as Master, Daddy as blaster, and me as whoever Tina Turner is in that movie!  
Here, we resuscitated Mario and Luigi, but now we had a little Toad!  
In 2014, you were Cupid, I was Aphrodite, and Daddy was Haphaestos, or Vulcan.  And this year, we were characters from the Despicable Me 2 movie: 
I know that, soon, you'll want to do your own costume and be with your own friends, but I hope you never lose the magic of knowing that we can "dress up," play with our identities, be who we want to be...and not just on Halloween, but always.

Thursday, October 22, 2015

Normal

Dear Jules,
I'm sure this is a word you have heard a lot...it's a word that has, I think, really had a pernicious effect on our society.  Today, a well-meaning person talked about you taking classes with "normal" children.  While she meant nothing by that statement--she just used "normal" instead of "typically developing"--it really made me think about the "norm," and about, how as I tell my students, none of us can ever really conform to it.

Sometimes, the word "normal" can mean "typical"--I remember clearly a film shown to us when I was in fifth grade (in 1983 or so), called "Am I Normal?"  Some of my blog readers might remember this attempt at teaching young, pre-pubescent boys that physical developments, like erections and body hair, are, indeed, "normal."  In order to figure this out, though, the young boy not only reads sex books but also, at the end of the clip, goes to the zoo and observes animals having sex and, yes, erections.  This, more than anything else, convinces him that he's okay...he's "normal."
Other than the fact that watching this now is pretty funny, historically, it makes me think about boys who, maybe, are not interested in girls.  Or boys developing slowly.  Are they, then, "abnormal?"

Sometimes the norm is something we want to exceed.  When I was in elementary school, I had an IQ test (which, by the way, I've never done since), and I did not "qualify" for the Talented and Gifted program.  So this number, this intelligence quotient, "measures" intelligence and tells us if we are average, above average or, most damaging of all, "below average."

This, I tell my students all of the time, is how we've been conditioned to think, right?  And we spend so many of our middle school and high school years trying, with all of our might, to fit in, to be "normal" (as one of my good friends, Meg, said, even being classified as "gifted" can be damaging in that she was never rewarded for working hard and always expected to be more).  There is something comforting, safe, about being "normal."

But this entire concept is really not all that old; it stems back to the mid-nineteenth century.  In the 1830's, as a result of the Poor Law of 1834, the Factory Act of 1833, and the Reform Act of 1832, people became really interested in statistics: in monitoring others.  Were the poor being provided with adequate housing and health care?  How many were working for a "living?"  How many children were working in factories?  Who was being "productive," and who was not?

In order to answer questions like the last one led to the foundation of the London Statistical Society in 1835- the idea was that people could be improved- made more productive- by seeing where they were at.  So statisticians used both Gauss's bell curve, from the late eighteenth-century, and Galton's "ogive," which shows the desired trait (like a high IQ), on the right side of the graph:
In many ways, Galton's ogive speaks directly to productivity- the people who fall on the right side can be more productive citizens, but Gauss's curve is still the one we think of when we think of the "norm."  The "norm" is in the middle, the people with high IQ's are on the right, and those with lower IQ's are on the left.  Again, it's important to remember that this is a mid-nineteenth century way to categorize people so that they could be productive, work in factories, earn money, and be "good" citizens.

Now if I think about the idea of disability, I think about productivity.  In fact, when I ask my students to define disability, they talk about the ability to "be a productive citizen."  Interesting.  So if someone just decides that s/he would rather hang out on the couch and not work, maybe not even take care of oneself, that person would be "disabled?"  No, right?  This rhetoric breaks down pretty quickly.

It's even more difficult to figure out what a "norm" might be.  Other than a "normal" IQ, which can be measured, what is "normal" behavior?  Normal appearance?  When we think about these questions, we quickly realize that the answer depends upon the time period in which a person lived.  So normal behavior, for a woman, in the middle ages would be drastically different than normal behavior today. Appearance-wise, people in the 15th century were considered more attractive if they were overweight, as it meant they were eating more.  At the time, this woman would have been considered very attractive:
Now we would say that she is overweight, perhaps, that her ends are split, and a host of other things. And then there are cultural elements.  Even if the beauty "norm" (and this extends to men as well, of course, just differently) is questioned, some other "norm" has to be upheld.  Caitlyn Jenner, who used to be Bruce Jenner, would not grace magazine covers if she did not fulfill some norm of beauty.  And even though I'm thrilled that models with Down Syndrome are now featured in magazines, I wonder if we'd see this woman if she were overweight or had small breasts or if she were wearing less makeup:

I shouldn't be so judgmental, though.  At least we now see models with Down Syndrome (and, here, a woman of color), and we're starting to challenge this idea of a cultural "norm," the bell curve on which we are all judged.  Just yesterday, you wore orange in honor of Unity Day, an initiative to prevent bullying in schools.

So I think we are getting there, but I wish people would think twice before using that word, "normal." What is normal?  Are any of us there?  Or, to ask a better question, would we want to be?

Julia, I don't want you to be "normal," to fit in, to blend.  I want you to be special, unique, to make a splash, to be memorable.  As Laurel Ulritch said, "Well-behaved women seldom make history."  I would change that to "normal people."  It might be safe, but the norm, the top of that bell curve, is a boring place to be.




Tuesday, October 20, 2015

Actions and Words

Dear Jules,
Actions, the proverb goes, speak louder than words.  Or, to put it in a more new-age way, there are a number of "love languages," and not everyone expresses their love in the same way.

The older I get, the more truth I see in both of these statements.

Words are great- I adore words, I write about words for a living, I study words until I have sucked every possible meaning out of them. Right now, words are important to us because you still don't have too many of them (not spoken words, anyway) and find it difficult to communicate.  How else do we make our ideas into realities?  How else to we put substance to our thoughts?  I know that some scientists argue that we think in pictures, but words, to me, seem incredibly important.  After all, writes Arika Okrent, "We may be able to think without language, but language lets us know that we are thinking."  In other words, our thinking without language wouldn't be self-reflexive or even as self-conscious.  I wonder what, and how, you are thinking, what's going on in your head that you can't yet express, and I pray for words to come.

And yet words are, ironically, not enough.  Words are, in many ways, easy:  it's easy to tell someone you love them, write effusive letters, or say that you will be there for someone, but acting on these words is much more difficult.

I have a few examples of this, the first one being you yourself.  Like I said, you don't have many words, but every night, you try to put me to bed, you caress my face, you turn on music and try to cover me up, and I know, beyond certainty, how much you love me.  I actually know this just by how your face lights up when I come into the room.

Your Aunt Diane regularly sends you postcards.  Now these postcards do contain words, but they could really say nothing.  The point is that she sends you one almost every week, that she has thought of us in the midst of her busy life, that you are a priority to her.

My father, your grandfather, was not what I would call an emotionally effusive, mushy person.  I don't often remember him telling him he loved me or hugging me spontaneously (although he was more demonstrative toward me than toward my brother).  Yet if anything ever went wrong with my car or with my brother's car, he would spend hours, sometimes in the pouring rain or in the snow, fixing them.  He drove to my college if I needed anything (I'm a space cadet and sometimes left my violin at home), and both he and my mom drove up to your uncle Julius's college, six hours away, in the middle of the night, when he had an accident.

To fulfill another cliché, I married someone kindof like my dad in that your Daddy is very private with his feelings, doesn't like to use a lot of words to express what he's thinking, and doesn't want to make a show of things.  In fact, I'm not putting this post on Facebook because I know it would embarrass him.  And yet, he does these things that show his love all of the time: small things, like cleaning the house when we were in Europe or getting food when I'm too busy with work.  Most recently, I went to Utah for a conference but really struggled through it because I was sick.  When I came home, this is what I saw:

He picked out the kinds of soup I love most so that I wouldn't have to worry about cooking.  A small, but thoughtful gesture, that really shows love and care.

And so while words are important and we have been pushing you to learn them lately, we want you to know that actions are an equally, if not more, viable love language.  Here we are together at the Boone Hall pumpkin patch, expressing our love for each other:

Wednesday, October 14, 2015

Good Mom/ Bad Mom

Dear Jules,

After reading my last blog posting, some of my very sweet friends picked up on my guilt about feeling like a "bad mom" during your IEP meetings.  While it is true that statements like "we are trying to do what's best for Julia" definitely don't help one feel like a great mother, the bigger problem is this "good mom vs. bad mom" rhetoric that our society has built up.

I could relate this to special needs-- the "good" special needs mom gives up her job, her hobbies, everything, in order to raise her child--but it's a more pervasive issue than that.  It's one of those #morealikethandifferent things because I think every single mother has dealt with the stigma of other women seeing her as a "bad mom."

Lots of women's and gender studies scholars have written about this, so I know I'm not the first, but I do want to think here about what it means to be a "good" mom, and why this rhetoric is so hurtful to you, my daughter.  Here's a quote from Ayelet Waldman's book, Bad Mother:

There is an appealing sociopolitical rationale for our preoccupation with bad mothers, one articulated to me by the feminist scholar and advocate Lynn Paltrow, founder and executive director of National Advocates for Pregnant Women. Getting us to focus on bad mothers, she says, is part of a larger political agenda to keep our attention off the truth — that it is not our mothers but our government that has failed us. The patriarchy and its political, media, and profit-making machines encourage us to scapegoat and vilify one bogeymama after another...

Now I agree with Paltrow and with Betty Friedan, who talked about this at Smith College back in the 1990's, that by villifying each other (working mom vs. stay-at-home mom, lesbian vs. straight, etc.), women are taking the focus off of the "truth", which is that we're still far from anything called "gender equality."  I'm not sure that I would put it in the same way, like it's a government consipiracy, but it is the truth.

I also really like what Waldman has to say about the "good mom" vs. the "good dad."  Your Daddy always says that he finds it funny that, when he's shopping with you, hasn't combed your hair, and might have forgotten a shoe, people still turn to him and say he's a "good dad."  Your father, tongue-in-cheek, says that basically, a "good dad" is someone who doesn't "beat" their child.  Sort-of like what Waldman says:

 A good father is characterized quite simply by his presence. He shows up. In the delivery room, at dinnertime (when he can), to school recitals and ball games (whenever it's reasonably possible). He's a good provider who is not above changing a diaper or wearing a Baby Bjorn. He's a strong shoulder to cry on and, at the same time, a constant example of how to roll with the punches. This definition seems to accommodate, without contradiction, both an older, sentimentalized Father Knows Best version of a dad and our post-Free to Be You and Me assumptions.
However, my polling sample had a difficult time describing a good mother without resorting to hyperbole, beneath which it's possible to discern a hint of angry self-flagellation.

Here is just one of the "good mom" examples:
"She lives only in the present and entirely for her kids."
"She remembers to serve fruit at breakfast, is always cheerful and never yells, manages not to project her own neuroses and inadequacies onto her children, is an active and beloved community volunteer; she remembers to make playdates, her children's clothes fit, and she does art projects with them and enjoys all their games. And she is never too tired for sex."

I want to think about what this would mean to us and, more specifically, to you.  Other than the fruit at breakfast, which just seems so small in the scheme of things (do people go to therapy complaining about no fruit??), would it be helpful for me to be "always cheerful?"  If I never got angry, never yelled, never cried, how would you learn to deal with your own conflicting emotions later in life?  It's not the yelling that's a problem, it's the lack or anger resolution, which, I think, is another matter altogether.

None of us want to "project" our "neuroses and inadequacies" onto our children, but again, we are human.  And people are much more resilient than one would think.  Ann Patchett, an author I really like, has a podcast called Magic Lessons in which she talks about being a "good enough" mother (she's talking about writers who feel guilty for taking time to, um, write).  And I think there is a lot to that.  Most of our mothers were, and are, "good enough," meaning that we know they love us and are there for us.  I know my own mom felt guilty about my having an anxiety disorder, but that disorder was caused by a combination of social and biological factors, and it doesn't mean she wasn't a "good mother."  She was and is, and I know that she is always there for me.

The rest of this list is okay, I guess, if one a) doesn't work outside the home, AND b) doesn't have any hobbies or interests.  Because even if I did not work 60+ hours a week, I would still play my violin and run 25-30 miles a week, and I might not have the time or the energy to volunteer or make playdates all of the time.  Grammy, according to Daddy, always took him on spontaneous adventures when he was a kid, but that, too, means that one can't be so scheduled with the volunteerism and the playdates.

And I dare any of you who are parents to tell me that you enjoy ALL of your childrens' games.  Honestly, you (Jules) are four right now, and many of your games involve running around and around and around...non-stop, until I'm so dizzy I want to puke.  I do it because I love you, but enjoy would be an overstatement.

Finally, even if I did not work outside the home and had no hobbies or interests, parenting would make me too tired to have sex.  When you were home during the recent flooding, I worked harder trying to entertain you than I ever do at work, or running a marathon.  So again, I dare you to tell me that, after getting snot and (sometimes) vomit all over you, running around all day, cleaning up after your child, and finally getting that child to sleep (damnit), you would want to have sex?

The thing is that I don't want you to grow up to be this person, this Stepford wife.  Especially for mothers of girls, I think it's crucial to teach you that we have conflicted emotions, that we are people, and that we have our own lives...and it is okay.  Because I want you to feel entitled to these things.  Even if you don't have biological children, our culture pushes the nurturing thing onto women so much that, as teachers or nurses or bosses or whatever, we still don't feel entitled to our own lives.

This is getting long, so I'll just close by saying that, as someone with special needs, you'll feel social pressure to be especially nurturing.  "They [people with DS]," the cliché goes, "are all so loving."  I've been doing some reading about women with intellectual disabilities, and they are pictured even more this way, with some people describing you as "dolls."  You need to be loving, sure, but it's okay to be a "bad mom" sometimes and be human.  Every single person is entitled to that privilege.

Me, you, and my Awesome Mom!

Tuesday, October 13, 2015

IEP meetings

Dear Jules,
So I just ran 11 miles with a nasty cold, and I should be proud of myself, right?  My friends have been great and supportive, and so has your Daddy.
Now what if they turned around and said "That's great, but you haven't met your goals yet.  It says in [whatever official document] that you are supposed to, by this point, be running 13 miles.  And in order to get to your ultimate goal, the marathon, you need to run another 15.2?"
That's how I feel about IEP, Individualized Educational Progress, meetings, set to discuss the goals and progress of students with disabilities.  It's like, all year, your therapists and we celebrate your 11-milers (learning new words, learning to jump, initiating play), and then we have these meetings that make me realize that you are still far from whatever goals have been set.
So I like to call them Insidious Ego Pummeling meetings, because I always start out very positive and end up feeling like--I'll say it--a bad mom.  Inevitably, we find out that you're behind on your goals, that you need more "individualized education" (meaning not in a traditional classroom with traditional classmates), and then they come up with a plan.
The latest plan was to send you to a public elementary school to be in what people here call a PIC class, a class for kids with disabilities, and then in the afternoon to the integrated school you've been attending.  This has worked okay except that it's been hard for you to feel included in said integrated school (attending on a half day basis), and it feels like they assume you're getting all the "therapy" you need in the public school.  And the transition between the two has been incredibly difficult for you.

So now we are having yet another IEP meeting, with teachers from both schools, to discuss this transition and just discuss the school situtation in general.  I don't know what will come of it, but I do think it's important or I wouldn't do it (masochism is not my thing, usually).  I wish to God that you had more words and could tell me what you want, how you feel, how things are working for you. In lieu of that, I need to go with my gut...and my gut and my ego are not the same thing.

As parents of kids with special needs, it's easy to let our egos get in the way.  When my friends complain about the Talented and Gifted programs that their kids are in, it's easy to stop listening and think screw you!  That's your biggest problem?  When people commiserate about their kids being sick all the time, I sometimes think umm...see my post about medical issues and Down Syndrome, dumb-ass.  Lazy leukocytes.  I get defensive when people do assume that they understand "what I'm going through," but then I also get defensive when you are not treated like everyone else, when people at these meetings say that you need 720 hours of "specialized education" a week, that you need someone to shadow you throughout the day, that you present "safety concerns."
So maybe my ego needs to be pummeled a bit, because our egos should not be in charge.  What always needs to come first is you, and worrying about being a "bad mom" or finding out that you haven't met your goals or feeling inadequate at an IEP meeting is taking away from really thinking about what you need to have the best education possible...so that you can run your best race.
You in your school uniform--PIC class

Sunday, October 11, 2015

Avondale 5K

Dear Jules,
Well, yesterday was your fourth time walking--my second time running--the Avondale 5K, a wonderful race that benefits the Charles Webb Center.  Just in case they ever take it down, here you are in the promotional video:
This is one of my very favorite races for so many reasons.  First of all, I LOVE LOVE LOVE the community here.  There are so many wonderful vendors, people walk from home to do the race, and people who stay home still get out and cheer.  Carolyn Murray from our local News 2 is always there, and she remembers us--mainly you--and is such a wonderful spokesperson for the event.  She's truly a beautiful woman, inside and out!  All of your friends from the Webb Center come to cheer on the runners, and since we know most of them, we can always get high 5's and cheers (that's why I think I achieved a PR, a personal best, this year).

Then there are the runners and walkers.  These people are, I swear to God, the best.  I ran the race and everyone I passed said "Good job!" and thanked the volunteers for blocking off streets and handing out water.  Then, as I walked back to join my walking team, I saw people who were running despite the odds.  One woman had her leg bandaged and was limping, and another seriously overweight person was *running.*  It really did bring tears to my eyes, because that's what the Charles Webb Center is about: giving children the chance to succeed, despite the odds.

And, of course, our team.  This year's team carries on the tried and true name, "Fools for Jules," meaning you go to wear a crown:
Oh yes, and some wondeful people painted a purple heart on your arm!  Then we had our team of walkers and my running partner, Susan, who ran:
(That's Daddy, of course, Erika holding you, Joe, Suzannne, and Susan).
(and the doggie is Molly!!)
You loved that dog, and I'm gonna try and see if we can play with her again.  Susan is a wonderful running partner who has gone to so many races with me, and she's really been a constant presence in your life as well.  Suzanne is a newer friend who plays in my string quartet--violin AND viola--, and I was so touched that she came out and walked with us!  
And Erika and Joe, according to their Facebook status, have never done a walk or run of any sort, but they came to this one.  I think--or, rather, hope--that all of these people will be family for a long time to come.  I know you love each and every one of them.  

Kids and dogs are central to this race, and they honor the kids who finish well (I know I was huffing and puffing behind some really fast kids).  They have wheelchair athletes, pets (as I said before), and it's just such an affirming environment.  So I've signed up for the committee for next year, because this race shows just what our community can, and should, be all about.  



Thursday, October 8, 2015

Your Furry Brother

Dear Jules,
Chances are that, by the time you are reading this (or maybe by the time it means anything to you), we won't have your brother Puck any more, so I wanted to write about him.  When we first got a corgi, I worried about how he might behave around kids.  I had heard that corgis try to herd children and nip at their ankles, that people have had to give theirs away after having kids...and so I worried about how he would react to you.
Well, Puck has been great.  Other than acting destructively to get our attention (and what little brother doesn't do that??), he's been nothing but gentle to you, allowing you to grab his ears, his tail, sit and watch while he eats his food, and even to ride him.  And you have actually learned how to pet Puck gently, to treat him nicely, but also how to tell him "no."  And you two are great friends and enjoy hanging out together.  Here are the two of you when you were a baby:
...and here are the two of you now, in the middle of a dance party:
Note that the messiness of our house has increased exponentially since a) we now have a four-year old, and b) my mother, who cleaned when you were born, is not staying with us anymore.  No worries, moms--the room looks bad because Julia was home for three days because of flooding.  It usually looks pristine...I swear.
Anyway, you just sit together and play together all of the time.  He's the first thing you ask for in the morning and, at night, when I go through the list of who loves you, "Puck" comes right before "God" (sorry if that's heretical).  Today, you were still home (pneumonia really does take it out of a little person!), but it was finally sunny, the flood waters are drying up, so I decided to go on a little walk with you and Puck.  You wanted to take his leash, so I thought we would give it a try.  Get ready for some serious cuteness:
video

Wednesday, October 7, 2015

Mary Poppins

Dear Jules,
This has nothing to do with DS--at all!--but all of this time with you has allowed me to indulge in my passion for all things Julie Andrews.  And the best part of it is that you have also enjoyed them!  By "all things," I mean all things that a toddler can possibly focus on, but I'm proud to say that you made it through half of Sound of Music and absolutely adore the "Do-Re-Mi" song:
Today, our continued imprisonment in the house (can you all tell I'm an extrovert?) was made better by us watching Mary Poppins.  I love "Spoon Full of Sugar," but you really enjoyed the song "Feed the Birds," which really does show off Andrews's vocal range.
I just love the crispness of her voice, the wonderful way she enunciates, and, basically, everything about her.  This is mostly because I also watched these movies with my parents when I was a little girl, and there is something truly timeless about them.  Julie Andrews isn't singing any more- she unfortunately had throat cancer- but she is still beautiful, classy, timeless, and she conveys a sort of sincerity we don't see much any more.  One of the great joys of parenthood is to share one's passions with one's kids, and this has been a real treat for me.  (As for your father, he wants you to play first-person shooter video games with him, but that's a matter for another day.  At least you can sing with sincerity while you blow up zombie faces).

Tuesday, October 6, 2015

Lazy leukocytes?

Dear Jules,
We finally had one of your schools today, the one in the afternoon.  I was so excited, as were you, to see your friends and get out of the house, and I assumed your nagging cough meant you were at the end of a cold.  I did think it was strange that you were so tired, but I ignored it because (mom of the year award here!) I wanted you to go to school and play with your friends...and I selfishly wanted to get some work done.
To make matters worse, I had cracked the cover of my iphone6 and had to take it to the istore for some iservice (sorry- Apple makes me cranky sometimes).  So I didn't have my phone when your teacher called, and Daddy didn't have reception, and by the time I got to your school, you were running a high fever.  I took you to the doctor's because you were having trouble breathing, but not before you threw up all over me, the car seat, yourself...
The doctor thinks you have pneumonia.  Because you get pneumonia so often (you had it three times last year), she's prescribing a steroid for you to take during the cold and flu season.
People often say that being a "special needs mom" is difficult, but honestly, the only "difficult" part of it, for me, is how often you get sick.  You are sick a LOT, which is, I know, normal for some kids, but it makes it even harder for you to learn and get ahead on speech and OT stuff.  When you were born, you had low blood oxygenation, and so you had to be in the NICU just so you could get oxygen delivered to you.  Then, when you came home, so did the oxygen, but just for a short while.
(tangent- I can't believe you were that tiny and that you looked like that!!).  I don't know how parents of kids who are often hospitalized for cardiac issues even do it.  You did have an atrial septal defect, which means a hole in your heart, but we are so blessed that it healed up on its own.  If kids are constantly in the hospital, of course they can't focus on school and on therapy and on getting the services they need.  And this, more than anything, is what makes it "difficult" to be a special needs parent.  Not to mention that very few work schedules allow for a parent to spend extensive time with his or her child in the hospital, and friends of mine have lost jobs over this.  So all in all, I'm lucky, but it is frustrating when, coming off antibiotics for an ear infection, you're on another round for pneumonia.  
One of my friends told me that people with DS get sick more often because of "lazy leukocytes," but I'm not really sure what that means (white blood cells that don't want to protect you against infection?), so I tried to look it up online, and this is what I got:
"The abnormalities of the immune system associated with DS include: mild to moderate T and B cell lymphopenia, with marked decrease of naive lymphocytes, impaired mitogen-induced T cell proliferation, reduced specific antibody responses to immunizations and defects of neutrophil chemotaxis."
So according to this article (Ram, G., & Chinen, J. (2011). Infections and immunodeficiency in Down syndrome. Clinical and Experimental Immunology, 164(1), 9–16. http://doi.org/10.1111/j.1365-2249.2011.04335.x), it's not that leukocytes are "lazy," but that there is an "abnormally low level of lymphocytes in the blood. Lymphocytes are a white blood cell with important functions in the immune system."  According to Wikipedia (which you must never let my students know I'm using!), "a mitogen is a chemical substance that encourages a cell to commence cell division, triggering mitosis."  Okay, so then the T cells, when are a type of lymphocyte, don't actually divide as often as they are supposed to, which is why there are fewer of then.  There are also fewer "naive" lymphocytes, which are white blood cells that haven't been exposed to an antigen (something that will elicit an immune response).  I think we can all understand the reduced responses to immunizations (alas), but I did learn that neutrophils are mostly in our bloodstream and our our body's first defense against infections:

But in people with DS, there is something wrong ( a "defect") with the way that these neutrophils respond to infection (chemotaxis).  
Now it's important to realize that this is a list, like those crazy lists of side effects that appear on medicine commercials.  These "may" be associated with Down Syndrome, but it actually does help me understand why you get sick so often.
That being said, and like I wrote before, I am lucky.  I'm lucky that your illnesses are mostly a few days, usually alleviated with antibiotics, and haven't required hospitalization.
I'm lucky that your heart defect has healed and that (fingers crossed), you haven't developed any of the more serious illnesses, like leukemia, also associated with DS.
I'm lucky that I am a teacher, and that I get to come home early or skip office hours if you are sick!
I'm lucky, this year, that I'm on sabbatical.
I'm lucky that I have a partner who pitches in.  Tonight, he made dinner so that I could take you to the doctor.
There are many things I am lucky for, but man...it sure does suck when you are sick.  

Monday, October 5, 2015

Muscle Tone

Dear Jules,
One of the many things I did not know about DS (before I had you) is that it is characterized by low muscle tone.  That means that every single muscle in your entire body has to work harder than, say, the corresponding muscles in my body.  So what does that mean?
It means that, when you try to wear flip flops, the little muscles in your toes can't quite hold them on your feet.  In fact, we went shoe shopping today, and supportive shoes are a must for you.
It means that, when you are running and playing with your friends, you are using up way more energy and getting more tired.  When people judge me for picking you up sometimes, they might want to consider that you might be more tired than their kids.
It means that your tongue is not as strong as mine.  Did you all know that we use our muscles to keep our tongues in our mouths?  If they are not as strong, they will hang out, so, contrary to popular belief, people with Down Syndrome don't have "bigger tongues" that those without.
It means that the muscles in your eyes have trouble focusing.  That's why you wear bi-focals (I get this question all of the time, so I thought I'd answer it).
It means that you have a tough time rotating your wrist and, therefore, using a spoon or fork.
It means that it's hard for you to jump because, again, jumping uses lots of different foot muscles.  In fact, you wore an orthotic device when you were little and learning to walk:
(there it is under your shoe).  And, actually, it means that you are an extremely flexible kid, since, as I know from running, too much muscle tone decreases flexibility.
It also means that your friends in Special Olympics kick some ass.  For instance, your friend Elizabeth Carpenter  has won multiple medals in swimming, which is just freakin' impressive.  And then look at these athletes, running triathlons, something I only aspire to do someday.

I have so much more respect for Special Olympics than I ever did before, and seeing how hard you work to run and play and never, ever give up gives me the stamina I'm gonna need to run my final FULL MARATHON for LuMind Research Down Syndrome Runners.    In fact, you heard it here first, folks:  I will be running one in the spring, most likely the Rock and Roll Washington DC Marathon!  Not to sound cheesy, but every time you learn something, like how to rotate your wrist or how to jump or how to skip, I think about how hard you have worked to get to that milestone, and how hard I am willing to work to give you the absolute best quality of life you can have.  It's important to me that RDS is not trying to "cure" Down Syndrome (who would want that??!) but to come up with more comprehensive therapies and ideas so that people with DS can maximize their potential.  And, if 98% of life is "showing up" and if hard work means so much more than raw talent, I think that potential is huge.


Sunday, October 4, 2015

Potty Training

Dear Jules, In the spirit of DS Awareness month, I'm going to post something boring but perhaps useful to parents of kids with Down Syndrome. I've actually written and deleted this three times now because I SWORE I would never be that mother who talked about her kid's poop in public, much less in a blog that you can read, and squirm at, when you're older. Having said that, I feel like parents should at least get a sense of what they are in for, and so these are my gems of advice. Keep in mind that my child is still not potty trained, or really even close to it, so take these "gems" with a grain of salt.  So here are some things that parents do that don't seem to work so well on kids with Down Syndrome:


  • Give them candy and/or reward them when they sit on the potty.  Now again, you are not all kids with Down Syndrome, and we never gave you candy on the potty--I'm too much of a germaphobe--, but we did decide to let you do something you loved on the potty:  to read.  And so you read...a lot.  You didn't do anything else, but you read.  Finally, my good friend Cindy told me that this might be confusing to kids with DS.  Think about it.  You sit down somewhere and you always read, so the potty must be for reading, right?  So we finally stopped doing that.
  • Only have them potty train when they are "ready."  We tried training you when you were three, and you didn't seem to care one way or the other--you were perfectly happy to go in your diaper as long as you still got to play.  Well, now you're 4 1/2, and you still are.  People with DS might be hyposensitive, which means they need high levels of sensory stimulation.  It's why you always hug your friends too tight and love amusement parks and have ridiculous pain tolerance, but it's also why you don't really feel it when you have to go (not always a strong sensation).     So, at least for now, I'm not sure sensation is the way to go. 
  • One of the more extreme suggestions we received is this sensory diaper that literally senses when it's wet and sings a song.  The "girl" sensory diapers sing "twinkle twinkle little star" (as an aside, there is NO difference between the girl and boy versions except that the girl is pink and the boy is blue.  And cheaper.  You might not get potty trained, but welcome to consumerism 101).  "Twinkle twinkle" is one of your favorite songs, so you all can guess what happened here.  Every time the diaper sang, you would clap and say "more."  And you'd be all done by the time we went potty.
  • What is working now is the tried and true "give up your adult life and go to the potty every 30 minutes" technique.  We tried 45, but you must have a tiny bladder, like me!  Anyway, we got you a potty watch that beeps every 1/2 an hour, and you know now that means we sit on the potty and try to go.  In fact, you've even started signing "potty."  

So I'm holding my breath that this will work out because, even though this sounds like a stupid little thing, they won't let you attend summer camps if you're not potty trained, they won't move you up to the next class at school, and even the current teacher changes your diaper begrudgingly.  It's a small thing for most people but, for you, a huge step toward independence.  And for that, I have risked your collective "eeeew"s and your later "oh, MOM."  And I will also put up a sweet picture as penance:

Saturday, October 3, 2015

More Alike Than Different

Well, the rain has finally set in (this is the front of our house) and, while we are not nearly as flooded as some, we are indeed stuck at home because they have closed off the Charleston peninsula.  Here's now it looks downtown:
So we are stuck at home, and I am, like the mother of any other 4-year-old, bored out of my skull.  Your Daddy has been up since 4, so I can't imagine how he feels, but I got up at 8:45, we ate breakfast together, we went potty and brushed our teeth, and then we watched Dora, a show that you love (and a show that, you will learn, is difficult for adults to watch for hours on end).  So we thought we'd try a movie, School of Rock.  You  sort-of liked the rock and roll parts but weren't interested in more of it, and you kept saying "DOH!", which means "put the Dora back on, damnit!"  
So then I tried giving you a bath, but that was only a half an hour, so we still had time to kill.  Daddy played a "letter game" with you--you're doing great at learning your letters!--we had lunch, we even called Nagyi in Hungary, and it's now only 1:30.
I put you down for a nap but you're crying, so I'm not sure this is gonna be happen.
And I have NO IDEA what else I can do with you for the day.
Does this sound familiar to parents of toddlers, or those of you who used to have todders?  I'm sure it does, because I've heard it from my friends with kids all of the time.  But it also made me think about the fact that this a a universal parenting experience--there is nothing in this boring story that would make anyone think that you have Down Syndrome, that you have "special needs," that you are different.  It's just a story of trying to occupy a toddler on a rainy day and, as boring as it it, it gives me comfort, makes me feel like I am one of many going through the same interminable day.  And it reminds me of the old saying that, when it comes down to it, people with DS--or any disability--are "more alike than different."

Friday, October 2, 2015

State of Emergency...whatever

Dear Jules,
So, the South Carolina governor declared a state of emergency because of this tropical storm/ hurrican, Joachim.  Both of your schools were cancelled, my work would have been cancelled--because Daddy works at a hospital, he ended up going in to work.
So what were we to do all day?  I tried going around the neighborhood to see if your friends were home, we watched Frozen twice (God help me), and then I got antsy.  It was barely raining, so I thought I would take you for a run.
I have to tell you--and apologies to my running partners here--that you are the most fun to run with!  I always play music loudly, and you jam to it until we get to a song you don't like, at which point you say "no, no, NO!".  You yell "wheee" when I speed up, and you even enjoyed the rain splashing on your face.  We had so much fun, and it was such great bonding.  You know, I started running with you when you were in my tummy, and we did it for eight months, so this is not a big surprise to me.
I can--and do--write about the big events in your life, but sometimes it's the little things, like running together, that remind me why you're so very special to me.


Thursday, October 1, 2015

Buddy Walk/ Puddle Walk 2015!


Dear Jules,
This year, I'm actually on sabbatical, which means I don't have to "work" all year long! Actually, despite what many politicians say, that's not true. It just means I'm working on my book--about obsession in British Romantic literature--instead of teaching students. One thing that is true is that this sabbatical gives me more free time to write, so I'm joining this 31 for 21 challenge! I cannot believe how many Buddy Walks it has been since you were born. At our first one, your dad and I just sorta went: we didn't plan, we didn't have a team, we didn't have a tent, and we didn't know many people. We knew a few people from DSAL, and it was nice to see them, but I remember going home feeling, quite honestly, upset and excluded.  I had thought that just going and walking--like any walk we do for a charity--would be enough.

What this experience taught me was that this event isn't like a "normal" charity walk or even a charity run.  You don't just go, "do" the walk, and then leave.  Instead, it's a huge community event, brought together by lots of thoughtful people over many months, to celebrate the communities who embrace those with Down Syndrome.  Every individual has a tent, and family and friends congregate for two hours before the walk even begins, as a symbol of our support for and celebration of people like you!!

So the next year, I thought I was prepared.  I hand-wrote a sign, "Fools for Jules," which I thought was a clever team name.  We also invited Grammy and Papa, who have been there every year and will come this year if we don't have flooding.
There's our tent, Grammy and Papa and, of course, Daddy.  And that's Ms. Beth, who was your occupational therapist.  It was a small tent, easily given to the whims of the wind, and I clearly can't make a poster, but we tried.  A woman who makes hair bows decided to give one to the cutest baby at the walk...which was you!  This didn't stay in your hair very long but was sweet.
And then we walked, with a few hundred other people.  
For the most part, you were in the stroller, but you did walk those last few steps:

So that was you, wearing a face-paint crown, in 2013.
In 2014, we went even BIGGER with a bigger tent, a sign designed by Grammy and Uncle Lee's friend John, and more people, including your Godfamily.  Here you are with your Godsister:
You two had matching tutus (okay, somewhat matching) to go with the idea that you are the Queen and we are your fools.  Your godsister would have nothing of it, though...she had to be a princess, and so our grand court tradition was born.  And what would fools be without fool hats?
Here we all are, wearing them.  YOu also started a grand tradition of falling asleep during the Buddy Walk, since we usually get there at 10, you play hard, and we don't start walking until 2:30.  So this year I'll keep you home until noon, and hopefully you will have more energy.  And just to highlight a few more people who came, Grammy and Papa were there again, as always--
And this year, you were big enough to attempt the jump castles!

(that's a rare picture with me since I usually take the pictures :).
Last year, you continued your "tradition" of sleeping--actually, you were pretty sick for the entire walk, which was unfortunate since everyone came again to support you, and we had snacks this time.
You were not feeling great, but your godsister was able to make a new friend, Kayla.  Check out her mom's blog at http://mdbeau.blogspot.com/.
Of course, we still all gathered in front of the tent, and oh yes!  I forgot to say that Zoe, your Godparents' dog, was there.  See her out in front?
So this year, we have the sign, we might not have many people because of a hurricane headed in our direction, but I pray that you'll be awake and be able to appreciate that this HUGE event is put on to celebrate people like YOU!  It's not a "charity" event--we are not trying to cure anything or do something that would involve a simple check or even, as I found out the hard way, a "simple" walk.  In order to do the Buddy Walk right, I've learned to look at it like Christmas: to prepare, buy materials, make sure everyone has gotten plenty of rest, publicize it (because, let's face it, it's not Christmas), and then celebrate the heck out of you.  It's a lot to celebrate.  xxoo,  mama