Digging Deep

Dear Jules,

I'm very sad today: sad that a man who made fun of a reporter with a disability, a man who has said really hateful things about Muslims, about women, a man who joked about the act of rape, will be our next president.  I'm sad that you and I couldn't celebrate the first woman president of the United States, even though she won every single debate and had a much more complex, nuanced view of world issues.  I want to say more but need to acknowledge that I'm sad.

So where do we go from here?  Well, I think we need to dig deep, to figure out what it is we stand for and to fight for it.   This is, thankfully, something our family is really good at.

Both Nagyi and Nagyapa, your grandfather you never met, grew up in communist Hungary.  It was a very stifling, totalitarian government: they told everyone what books to read, what history to learn, what groups to join, what jobs to do, how to think, how to act, and more.  My father literally fought for his beliefs, joining in the 1956 Hungarian revolution and then escaping from the country, telling no one in his family so that the government could not persecute them.  He always sent presents and money to his family, including to my aunt, who was intellectually disabled.  At that time, and even now, people with intellectual disabilities were treated very badly in Hungary, but he always kept in touch with her and taught me to see her as an individual.  Her embroidery is something I remember and, to this day, envy.  She was a talented woman.

Nagyi also fought for what she believed in; when she applied to college, she was asked to join the communist party but refused.  This almost cost her the opportunity to go to college.  Your great-grandfather, my grandfather, also fought hard: he also refused to join the party and believed in the power and strength of education.  Although he was a Latin teacher and a school principal, he was forced to become a peasant and then work on the railroads.  He had precious little time with his family, but he always made sure to tell stories about Hungarian and world history (he even told some of them to your daddy), and he always made sure to play his violin.  Oppression and fear could not keep him from his music.

My grandmother, your great-grandmother, believed in her religion, Catholicism.  Even though going to church was looked down upon (and could even be punished), she went almost every single day of her life and raised her children as Catholics.

Growing up, I heard stories about communist Hungary.  It sounded horrible, it was scary when we went to visit to see all of the soldiers, and I wasn't sure it would ever change, but my family kept being true to their values, their beliefs.  Eventually, it did change; it's not perfect, but it's no longer a totalitarian society, and people are relatively free to speak their minds.

My point is not that Trump's America will be totalitarian; I don't want to get into that here.  My point is that, no matter what the situation, good people have always dug deep into themselves to figure out their core values, their core roots...and then they have figured out a way to maintain those and effect change in their worlds.  It's definitely easier when society is with you: it's the difference between running a 5K and a marathon.  But if we dig deep and stay true to our values, we can affect our friendships, our families, our schools, and, in some small way, our society.  So I will continue to advocate for disability rights, to make sure that bullying is never, ever tolerated in our schools, to do my best to treat people equally, no matter their race, ethnicity, sexual orientation, disability, or station in life.  And, because I believe words matter, I will be very vigilant lest the discourse of this political campaign begin infecting our schools, our workplaces, our communities.  It won't be easy, it won't be painless, but it will be right.  

In one of my classes today, I was teaching the Ode and thought I would show this video of an ode read at Obama's 2008 inauguration.  It's about the small things we live with every day, and about how each little act results in a new day, new potential.  I honestly thought it would go well with Hillary Clinton's election, but I think it also works well now: it's good for us to remember that we are products of our ancestry and that, by looking back, we continue to move forward.  So here it is.

Love, Momma

The Personal Is Political

Dear Jules,

Politics is a messy game, but, as a famous person once said, the "personal is political."  In other words, people can say that they won't "talk politics," but the life choices they make, the people they choose to accept, the way they feel about government, the roads they use, even the schools they attend, are all political choices.  As a woman, the clothes you wear are often construed as a political statement; it's interesting, for instance, that a woman wearing a "pantsuit" is a big deal for some reason, whereas for me, a suit is just a suit.  Or that a woman can wear something and be "asking for" rape...I honestly hope that, by the time you read this, you won't understand that one.

This is my third try at writing this, but I want to explain to you why this 2016 election feels so intensely (even more than usual) personal.

Some people are born with privilege: they are men, born in the United States, are white, speak the language perfectly, and don't have any (visible) disabilities.  I honestly don't think that there are as many of these people as we would think, but these are the people targeted by the Trump campaign this year.   To be honest, I'm one of these people, but even those of us with privilege should be cognizant of those who don't have it: people who, like my parents, were immigrants to this country and had to prove themselves over and over again.  My mom used to tell me that, every time she spoke, people would answer her slowly, as if she couldn't understand them.  She had the equivalent of a Masters degree from a Hungarian university (a good one!), but she would have had to go back to a community college to teach in the USA.  The constant need to prove yourself wears you down and makes you feel like less than.  

My African-American friends also have to prove themselves all the time.  It's sad when my friend, a brilliant violinist, isn't appreciated for her talent, or when she has to teach her teenage daughter to be especially careful around the police.  This same friend attends Emanuel AME church, where her friends' kids knew to "play dead" during the deadly massacre that happened over a year ago.  Constantly afraid of the police, having to prove that you're not a criminal, having to prove that you are smart and talented, makes you feel less than.  

Our gay and lesbian friends have also struggled with this.  Only a few years ago, they were finally able to be married (some of them have been in relationships longer than my straight friends have). If they want to have children, they have to either pay a lot of money or try and find an adoption agency that will work with them.  Many of the "Christian" agencies will not.  And if they are "lucky" enough to have a child, they have to prove that their child will grow up "normal," whatever that means.  As my friend Leigh Moscowitz observed in her book, they have to take on all the conventions of a straight marriage.  Constantly being afraid to hold hands with your loved one, having to prove that your marriage is valid, that you are entitled to be a parent, makes you feel less than. 

As a woman, I've struggled with this.  I'm 5'3", and I look young for my age, so people constantly question my intelligence.  People at meetings have talked over me, people have called me "Julia's mom" without learning my name, people have even called me "Ben's wife" or, worse, "Mrs. Benjamin Rogers."  My students call me "Miss Rogers" all of the time, but they call male colleagues without Ph.D.'s "Doctor."  Constantly having to prove that you are equal, having to prove that you can handle being a mom and a career woman, makes you feel less than.

And then there's you.  While life for people with Down Syndrome is better than it used to be, it's still, as you know all too well, not great.  Right now, as you go to Kindergarten, we have to prove that you have "what it takes" to be included in a regular classroom.  However, you can't have too much, or your services (we have Medicaid to handle the therapy and the constant doctors' appointments) get taken away.  Other students don't have to prove that they are worthy of being in a regular, public school, Kindergarten classroom, but you do.  Constantly having to prove that you're good enough, that your Down Syndrome doesn't define you (you're NOT always happy!!!), that you are a worthwhile member of our society, makes you feel less than.

Finally, I get to "equal to."  Hillary Clinton's slogan is "better together," which implies working together:  not trying to prove anything, but using everyone's strengths for the greater good.  Whether she means this or not, I can't tell: the problem with rhetoric is that it's hard to tell.  But I DO know that you wouldn't be in Ms. Walpole's Kindergarten class if Hillary Clinton had not co-sponsored the IDEA Act: the Individuals with Disabilities in Education Act.  Basically, this act entitles you to be educated in the "least restrictive environment" possible, which, for you, is a regular education classroom.  We had to work hard and argue hard to make this happen, but without this act, you wouldn't even have the chance to prove yourself.

None of us should have to "prove" that we are worthy of being in the world, in the United States, in our families, in our schools, in our workplaces.  By virtue of being who we are, by virtue of being diverse, we are making our communities stronger: better.  So if anyone is reading this, or if, in future years, you have no idea why I voted the way I did, I want you to think about the IDEA act, about the wonderful work that Hillary Clinton has done for African-Americans, lesbian and gay Americans, female Americans, and Americans with disabilities.  The political IS personal, and her actions say far more than words ever could.

Family Ties

Dear Jules,
Don't worry- this is not a post about that cheesy show from the 1980's (although I doubt that they even re-run it any more, so you might have to look it up).  It's actually about the feeling of being somehow, inextricably, connected to someone: and how those connections serve to connect us to others.

I think a lot about connections every May 18th: the anniversary of my father's passing and the birthday of my closest friend, your aunt and Godmother Cindy.  It's strange that it's been fifteen years since my father died, and I often think about this quotation from Charlotte Brontë's Jane Eyre when I think about him:

I sometimes have a queer feeling with regard to you - especially when you are near me, as now: it is as if I had a string somewhere under my left ribs, tightly and inextricably knotted to a similar string situated in the corresponding quarter of your little frame. And if that boisterous channel, and two hundred miles or so of land some broad between us, I am afraid that cord of communion will be snapt; and then I've a nervous notion I should take to bleeding inwardly.

I love this for so many reasons: every May 18th, I feel that I am "bleeding inwardly"; while the wound might scab over and become less immediately painful, it never really heals.  And I love the analogy of a string tying us to the people we love, tightly, so that we have an almost physical connection, a "communion," as Brontë puts it.  I feel this way about my immediate family and about my closest friends.

I've written in other letters about my dad.  On our wedding bouquet, which you will inherit someday, you'll see attached a little statue of the Virgin Mary that my dad, unbeknownst to me, carried with him everywhere.  So today I went to this little shrine and talked with him about you, about your daddy, about all the things he had missed:

It makes me truly sad that he never saw me get my Ph.D., get married...and, most of all, that he never met you.  He would have absolutely adored you.

And yet I feel that God gave me a huge gift the year that my dad died.  It was the year I grew really close with your aunt Cindy, and I think it no accident that, on a day that string snapped, I was reminded of another string: one that would only grow stronger and more enduring.  I had been living in Worcester, Massachusetts, teaching at Assumption College, and I was so very lonely, so anxious, so unsure of what would happen with my life: my career, my relationships, all of it.  My second year in Worcester, Cindy moved there to teach at Worcester Academy, and we became really, really tight.

Right after your grandpa died, I remember going back to Worcester to pack up all of my stuff; I would be heading to Chapel Hill to begin my Ph.D.  I worried that the connection between me and Cindy might also snap, and it just felt like too much to bear.

But Cindy has become part of my life, part of my family.  We do have more than two hundred miles between us, but she was my maid of honor at our wedding (for which I can't, for some reason, find digital photographs, but you have the album).  When you were born, I asked her to be your godmother, and she flew down here for the baptism:

We've made sure to see one another at least once a year since then, and our relationship has only grown.

Our last visit to Montclair was for New Year's Eve, and it was a perfect way to ring in 2016:

Losing my dad sucked, and nothing will ever, ever replace him, but I am glad that I also have someone to celebrate this day.  Your aunt Cindy has always felt like family and, in a way, she now is (if godparents count).  She is so very kind yet firm, funny yet sensitive, wacky but incredibly down to earth, and, well, just...unique.  On this day, her birthday, I'm grateful that God put her in the world, into our lives, and into my family.

Losing a Friend

Dear Jules,
It's been a while, and I need to post about a lot of things- to remind myself, I want to post all of my research about inclusion and also about running and body image.  But right now, all I can think about is my colleague, Conseula--and since that's a hard name for you to say, you might remember her better by this:

We didn't spend too much time with her, unfortunately, but let me tell you--she got so very excited every time she saw you.  I remember the first English Day, when I brought you with me, and she insisted on holding you the entire time.  "I looove holding babies!" she said, completely at ease with this show of emotion in an academic setting.  Every time she saw you, she would come in for a hug; even this year, when she was the associate provost of our College, she stooped down to hug you if ever she saw you.  I know she was busy and super-important, but she never let that get in the way of her feelings, her passion.

Sometimes I feel awkward as an academic.  I think I can't get too excited about what I'm reading, and I definitely can't admit to reading "trash," or people will think less of me.  I also remember talking about an article she was working on concerning the place of emotion in literary analysis.  And that's the thing about her: she was smart as a whip, she could talk jargon until the cows came home, but she also was okay with excitement, with reading romance novels, with squealing in the middle of English Day when she saw a baby to hold.

So many people were closer to her than I, and I feel guilty for even writing this.  After all, many people could memorialize her so much more effectively.  Other than the random run-ins with her (just recently, I dropped my wallet on the street and she brought it in to your preschool so that I would get it), and a short period of time during which she and her husband borrowed our car, we did not get to see her enough.   I do remember when I was interviewing for my job, and she took me to breakfast, and we just had so much fun chatting.  It was one of the moments that, for me, crystallized my decision to teach at the College.  Later, she guest lectured for my classes whenever I needed her to and got my students excited about Octavia Butler and comic books.

But I'm writing this because I want you, when you're older, to remember this person, and to remember how much, and how unconditionally, she loved you.  I'm sure you will get to know her daughter, who will one day be one of your babysitters (I'm getting there, Frances!  We are super bad about going out).  And I know you will see a lot of her in Frances, and you will see, through her amazing daughter, how much love, intelligence, passion, and conviction this person had.  I'm grateful that Frances--and Cate, too--live near us and are a part of our lives because I want you to get to know them.  She lives on in them and, some day, I hope that a bit of her will live on in you.

Closer to Home

Dear Jules,
So often in life, it's the grand gestures that command attention.  I'm all about symbolism and grand gestures, so today, on 3/21, Down Syndrome Awareness Day, I went all out.  Got my nails painted--a lot of people at the nail salon asked me "why I liked blue and yellow so much," and I got to explain why I chose these colors on this special day.  "So," they asked me, "when are you going to do it again?"
"Next year," I said, "on March 21."
"Why March 21?"
"Because Down Syndrome is Trisomy 21, which means that people are born with an extra copy of the 21st chromosome--therefore, they have 3 copies of the 21st chromosome.  March 21st is 3/21, which is why it is DS Awareness Day."
It's amazing how many people don't know that...and how many people are too embarrassed to ask.

Honestly, I did not know anything about Down Syndrome before you were born, and I welcome the questions.  I welcome the opportunity to teach anyone about why you might do things a bit differently than others, and why I wouldn't have you any other way.

Those of you who follow this blog or my life know that I just ran a marathon to support LuMind RDS.  I took lots of pictures, raised $1780 for LuMind, including sales from Bravelets, and had a great time.  We even made the symbolic gesture of running across the finish line with you.

But today, I want to talk about the little things: the things closer to home.  You all know about my advocacy, but do you know that Ben practices letters with Julia every morning?  Even on their drive in, he has her practice her words by saying "Hello, mailbox.  Hello, water.  Hello, tree," etc.  And she repeats all of the words after him, even taking the initiative to say "hello" herself.
That's just one example of a little thing, closer to home, that is nonetheless as helpful (if not more helpful) in helping Julia live the fullest life possible.

The truth is that I hope to God that we will find treatments for Alzheimer's so that Jules doesn't have to deal with early onset, as 60% of those with Down Syndrome do.  I hope that we can find drugs that make it easier for her to learn, to remember (not, I must emphasize, to "cure" DS).  And these are all of the things I ran my marathon for.

But when Julia was one, not walking yet, we found that the solutions closer to home- the treadmill training I've written about in this blog, and especially the Charles Webb Center, were the things that helped you achieve your goal of walking.  I've written about the Webb Center before as well -- please read that post if you haven't.  The point is that they got you walking, they worked on your confidence, they worked with you day in and day out.  These people are rarely in the newspaper and, even when we do the Avondale 5K to raise money for them, they don't receive the credit they deserve.  But what they are doing is no less significant than pioneering a new drug or coming up with new studies.  They are working on everyday skills, helping people live their best lives...right here, right now.

And for this reason, I'd like to give a shout out today to the Disabilities Foundation of Charleston County.   Their mission statement makes me tear up, because it's exactly what I want for my daughter, and for all people (with our without disabilities):

WE VALUE

The health, safety and well-being of each person
Dignity and respect for each person
Individual and family participation, choice, control and responsibility
Relationships with family, friends and community connections
Personal growth and accomplishments
Full community inclusion and participation

Dignity, respect, choice, connections, and inclusion are all things near and dear to my heart.  They not only run the Webb Center, but they also work to provide housing, jobs...and they have a bakery that employs people with special needs!

Again, it's not a grand gesture, but providing someone with employment, a place to live, a place in the community...these things are priceless.  So today, on World Down Syndrome Day 2016, I celebrate everyone that has helped Julia (and continues to help her) become the person she is, the person she is meant to be.

Inspiration

Dear Jules,
Sometimes, God gives us moments of inspiration when we most need them.  Today, for instance, I was watching the CBS Morning News show I like, and this clip came on about this woman who works three jobs, is a single mother, and has run 7 marathons in 7 days across 7 continents.  I think we have a lot in common:  she's short, like me (actually shorter than I, at 5'1"), and her inspiration is her little girl.  Here's the interview:

 Lately, I've been feeling anxious and overwhelmed about all of my responsibilities at work, in the house, etc., but here's a woman who is doing it all gracefully, inspired by her little girl.  It made me remember that you are my inspiration for running, too.  Whenever a race gets difficult, I think about how hard you work at achieving every little thing.  My marathon running is really nothing compared to that day you took your first steps, said your first words, and will say your first sentence.  As your occupational therapist says, you are an incredibly hard worker, and you persevere.

Sometimes, as a parent, I wish it were not this difficult.  I wish you could just start speaking, like, tomorrow (oh, and get potty trained while you're at it).  I wish that this race we were in were a sprint, not a marathon.  But it is a marathon and, like she says in the video, you don't count the miles, you just keep on going and think of it as a "long run."

The thing is, there are advantages to the marathon- to hard work.  I know so many people in the world who have had it easy, only to give up when things got a bit more difficult.  I know many people who don't know what it's like to dig deep down and find that strength that you did not even know you had.  I know many people who have little to no empathy for others who struggle in this long race we call life.  Like a long marathon, a "disability" forces you to do all of these things.  Granted, I choose to run marathons, and you didn't choose to have to work this hard (the distinction is an important one), but still, I think long-distance running applies in many ways to your--and our family's--challenges.

And the thing is, those of us who run marathons wouldn't trade it for the world.  I wouldn't trade our challenges (yes, including the potty training), because that moment when you DO achieve something is one of the most amazing, soul-melting moments any parent can experience.  Your eyes light up, you clap, and the look of pride is just wonderful, because you know how hard you have worked, and you know you deserve it.  You might not get a medal, but I give you all of mine, because you are the one who truly deserves them, and so much more.

A Room of One's Own

Dear Jules,
Well, this past Wednesday was Ash Wednesday, the beginning of Lent.  As my lenten resolution, I'd like to try and carve out time for some quiet thinking, and since I think best as I write, I will be posting my thoughts here (so if you're reading this and not interested, please feel free to check out).

On Wednesday, the priest at Grace Church, Caleb Lee, talked about his daughter throwing a temper tantrum, literally grabbing onto the door because she didn't want to leave somewhere.  You, too, pulled this stunt when we visited a Catholic school (maybe more on this later), but that's another story for another day.  His point was that, when he daughter gets overwhelmed, she needs a "time out," maybe some time in her room or, in your case, just some time facing the wall to think about what you did or said.  He talked about Lent as a time to retreat to our rooms, not as a form of punishment, but as a socially-sanctioned way to think through things, to meditate, to be instead of always doing.

The author Virginia Woolf argued that a woman must have a "room of one's own" to write fiction, but I think Father Caleb was onto something--even if our "room" is a space in which we can think, even if it's a place in our own minds to which we can retreat when others are talking, we all need this in order to process the many many things that life throws at us.

Today, I was just chatting with a very good friend, another runner, about how we tend to "go go go" from one thing to another, from appointment to appointment, whether social or work-related, and how little time we have to be in our friendships, our marriages, or just our own space.  I'm an extravert like you, but this is incredibly important for all of us: to be reflective, to think through things, to give ourselves the time we need to work through things.  So my friend, this weekend, is taking a "time out": she is allowing herself to rest, at her house, by herself.  She's not running errands or running or even seeing friends, but just resting, and giving her brain and body the time it needs.

I really respect this...as I told her, I'm not "good at" relaxing, taking time for me, but this is a good season for it.  As I watch the rain falling outside on this chilly day, I think about your so-called "slower processing time" and wonder if it will allow you to be more at peace with the events around you.  I hope so, because life can get crazy, and I wish I could throw a temper tantrum half the time.  Instead, it's good to remember to slow down, take some deep breaths, and give yourself a time out: a room of your own.

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.