Treadmill Training

Dear Jules,
Not only is it heavily raining (at least not icing or snowing like in the rest of the country), but you are home sick with a particularly disgusting stomach bug, and so I'm consigned to treadmill training or, as my new friend Kate Dochelli from LuMind RDS Runners calls it, "dreadmill" training.

If the future you is a runner, you probably know what I'm talking about.  Mile after mile on a rubber track makes anyone feel like a hamster, and it's hard to stay motivated with no scenery, no wind, nothing but--in my case--garage walls and dead roaches on the garage floor.

Yet it's treadmill training that makes me feel closest to you, mainly because my memories on this particular treadmill are so irrevocably tied to you.  To begin with, I was given the treadmill by our generous neighbors after I had you.  In between pumping and breastfeeding and trying to take naps, I found it impossible to get to the gym, so the Burches gave me their treadmill and got me going again. I like to look at life in metaphors, so I think this was also the point when I began to deal with my postpartum depression, realize that Down Syndrome is really not such a big deal, and, instead, spend my energy bonding with you.

Literally, it got me back on track.

Then, when you were close to one, your physical therapist recommended treadmill training to teach you to walk.  It's quite ingenious, actually.  We put a stick (in our case, a hockey stick) across the treadmill so that you could grab onto it.  Then, we put the machine on it's lowest possible setting--like .3 miles per hour.  One of us stood in front of you and sang to motivate you, the other held you upright, and you walked.  You began walking at 18 months, far earlier than lots of children with Down Syndrome.  I could take that hockey stick off--we sure as hell don't need it anymore--but I don't because it reminds me of how hard you worked in order to learn to walk.

And the other thing I like about treadmill training is that I can decorate the room (since it's a garage) any way I want to: post inspirational things on the walls or put, as you can see, a picture of you up by the machine itself.  When I'm running, I love to read quotations, my favorite being "you can't find your strength unless you're looking for it."  In fact, the entire garage door is plastered with these things:

For the most part, I train for half-marathons (and, right now, a full marathon), outside, sometimes with you and the jogging stroller, but days like today are actually good for me because they remind me of why I'm training: to be strong, brave, and resilient, just like you.

Rhetoric and the Self-Contained Classroom

Dear Jules,
Let me begin with the fact that you are, as they would have said in Worcester, Massachusetts, "wicked" smart.  You consistently communicate very complicated suggestions (actually, more like instructions) to me, your dad, and your friends.  They are things like "I want you to wear that coat and zip it up just like mine."  Last night, at 3 a.m., you decided that you wanted me to take you to the potty, so you opened your door, came down the stairs in the dark, came into our room (with a child-proof lock on it), took my hand, and had me take you potty...and then fell back asleep.
You've never had behavioral issues, your teachers love you, and you just received this from the school you attend in the morning:

I was so proud when we received this, mainly because of the notion that students in "special education" might not receive awards or recognition or be seen as readers, as intelligent.

In general, I've been in a really good mood about your prospects lately.  Like I said, I know that you are smart and funny and have incredible willpower.  You don't have a ton of words yet, but I know that the thoughts are there and that the words will come.

So I was incredibly excited to tour local schools and see what the best "fit" for you might be.  This is what other parents do, too, and I went to a tour of a magnet school during which the leader tried her best to "sell" it to us.  Later, she intimated that she knew very little about the special education process at that school, that you would have to take a proficiency test, but that they "couldn't stop us" from applying, but for that brief hour, I felt courted.  I felt special.  I felt like my kid matters, like these people might want her at their school.

I was even more excited about a school targeted toward the arts and music, since music is really your strong suit.  I went to an open house there, only to be told that we don't zone for that school, and that the only special education students there (who don't zone) are in the "autism room."  Hmm, an entire room full of kids with autism?  Sounds educationally sound to me.

I went to our home school and (still do) feel very excited about it.  They actually do want you there, they said you would be included in "regular" Kindergarten, and they showed me the special education area where they might pull you out for extra help.  It's a beautiful school, I saw a number of students with disabilities, and even the principal was excited to have you.  It's not as much school choice as I wanted, but it felt good.

And then I called your teacher and found out that your IEP team (this is a team of teachers and therapists designated by the school district--we are in the Charleston school district--) had already been discussing your "placement" for next year.
Wait a minute, I thought.  What about school choice?  And technically, parents are part of the IEP "team," so why are they "discussing" this without us?
Then the teacher told me that what would be best for you would be a "multi-cat" classroom.  Well, I did not know what that was, so I looked it up, and it's a classroom for kids (K-2) with "multiple" disabilities...maybe one step up from the autism room.  But, they told me, you could still go to music and gym with the "typical" kids.

So why does this piss me off?  When you were three, we started looking at school options and were told that a PIC (preschool intervention class) would be really good for you to learn some more basic skills.  We had planned on enrolling you at a private preschool--for which we had been on a waiting list for two years--, but we figured a semester of PIC would not hurt.

When we went to enroll you at said private pre-school, the school district people told us that the IEP (the document written by these groups which ostensibly include us) specified that you were to be in a "self-contained" classroom: in other words, in a classroom for kids with disabilities.  Every single article I have read has argued that inclusion is more effective for kids with disabilities, so I had only envisioned the PIC class as a step to integration.  When Dad and I told them that we wanted you at the private school, they pulled all of our school therapy services and made us sign a document saying that we "rejected" them.

Well, you still had--and have--your private therapists, so we figured that, in six months, we could apply to the school district (once they saw that you were able to be in an inclusive classroom) and have them send speech and OT to the private preschool.

This happened for A SEMESTER, and then we had the IEP meeting from hell, in which they basically told us that you needed more therapy than they could give you at the preschool, and that you should go back into a PIC class.  I cried, we fought, but "the team" had already basically decided that you would do PIC in the morning and the private preschool in the afternoon.  I made them promise me, up and down, that this was not the beginning of "self-contained" classrooms for your school career.

And now this.  Now this "multi-cat" stuff.  I did some research and found this powerpoint for principals and lead educators.  If you're also a special needs parent in SC, you should read this, but if you're not, I will sum it up with one telling quotation:  "Change the name of the self-contained programs and USE THEM!"  They call them multi-category, but that, as the quote so succinctly says, is just a change in name, not a change in perception or function.  And I am terrified that, if the "team" puts you in this K-2 program, we will hear the same rhetoric after 2nd grade: that you are better suited to whatever they will call a self-contained classroom then.

We will fight for you to be placed at your home school, where they were excited to have you, and if that does not work, we will look at private schools, but we refuse to relegate you to what used to be the "resource room" but became the "special needs classroom" for the rest of your education.

I'm writing this long post because other parents have been asking for advice.  Maybe they don't feel as strongly as I do about inclusion, or maybe their children are more verbal than mine and can communicate more effectively.  I honestly believe that the school district people think that they are doing what's in Julia's "best interest," but I don't think they know how smart you are.  Like me and like your Daddy, you tend to be really quiet until you really know someone.  So I'm not writing this to bash anyone, but as a warning that this rhetoric if the self-contained classroom ("it's only for a year, and then she can transition to a typical Kindergarten") seems to lead to more and more of these self-contained classrooms.  And when I teach students in our REACH program (a program at the College of Charleston for students with intellectual disabilities) very few, if any, come from this background.

So I am angry, I am hurt, I feel like my dream of schools wanting you has been taken away (even though I found out that they get money from the state for each child with a disability).  I feel like the idea that I'm a partner in your education is also just rhetoric, and, again, I feel like we have to gear up for a fight.

I should not have let my guard down.  I should not have believed that printed awards and weekly summaries of how well you are doing mean that you could be included with my neighbors' kids in our neighborhood school.  The hardest part about this is that I hate fighting, but I will fight and keep fighting until you are in a school that sees you the way I see you:  as too smart for your own good.

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.

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.

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.

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.

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: