Lucas Camilo

Despite his questionable fashion sense (see previous post), Lucas is doing well these days.  He’s added “cat” and “hug” to his vocabulary, and we’re working on “dinosaur” so he can start requesting more books by name.   Unfortunately he’s still reticent to perform for the camera (besides waving his arms in the universal “gimme!” sign), but we’ll catch some more video soon.

Although I’ve been back almost a week, I thought I’d write a bit about my adventures in the northwest. (Krista writing, this time.)  The trip was meant to be a combination of exploration and information seeking for our pending move, along a relaxing visit home.  And somehow with what felt like a dozen meetings scheduled in two cities over the course of 5 days, I managed to make all that happen.  Or, I should say, lots of people helped me make that happen.

Building on the research that Burke did a couple weeks ago, I went to check out another preschool in Seattle and met with a special ed service coordinator in Portland.  Both meetings were somewhat informational, but like Burke’s visit, they were also hard.  I was reminded of how complicated it is to describe Lucas.  Often I found myself really emphasizing Lucas’s disabilities, stressing that he’s going to need A LOT of help.  He can’t move his torso much.  He can’t sit up, roll over without assistance, or lift his elbows if he’s sitting up…  It feels terrible to describe Lucas in a list of negatives, but without doing this, professionals picture a more “typical” special needs child.  In both meetings the professionals tried to be positive, but their “don’t worry, we’ll make it work for Lucas,” felt dismissive.  That’s nice, I thought, but what about the fact that all the three year olds are in the sandbox right now throwing handfuls of sand at each other?  Lucas’s chair could not get in the sandbox, and he certainly can’t have sand near his neck.  I feel like we deserve more specific answers than “we’ll make it work,” but without having Lucas along side me to show off, I wasn’t sure what more to ask.

Of course I’m glad that the predominant philosophy in education now is to “mainstream” kids rather than isolate or hide away children with disabilities.  But we also know that in a classroom Lucas is going to need nursing assistance, as well as creative teachers and aids who can help him and his peers into situations where he can express himself, learn, and play with other kids.  Maybe it’s an unrealistic question to ask if those people will be there when we need them.  But I wanted to know.  Will there be an administration that really values difference, and models which embrace children of all abilities?  And will there be wheel-chair accessible classrooms?  And music rooms?  And playgrounds?

We may be starting along this path of questioning a little bit early, but it feels like we should ask these questions before we choose the school district where we’ll live for the next decade or two.  Ultimately, it seems that we’re going to have to trust that wherever we end up we’ll dig until we find the people who care about quality education for all children.

I also met with a pediatrician who we will likely choose for Lucas if we move to Seattle.  She’s been in practice for a long time, and she’s worked with many medically fragile children.  In contrast to the meetings with schools, she had a very clear idea of things she could help us with – home nursing, therapies, specialists, medical supply companies, etc.  She even offered to help connect us with other parents of medically fragile kids, and she said she’s planning on reading My Baby Rides the Short Bus.  (For our moms who are keeping the Portland vs. Seattle tally, that’s one point for Seattle. :)

One of the highlights of my trip was meeting Shannon, mom to a 9-year old with MTM.  Their first years with MTM were very different than ours – their son was 2 when he was diagnosed with MTM and 3 ½ when he got his trach.  But there are many things that felt very familiar and reassuring about meeting someone else who’s walked our path.   Maybe most significantly, in light of some of our questions about schools, was hearing that Javad is thriving in his second grade classroom, and that his “typically developing” peers love and include him.  It was also great to hear about some of the logistics of how they’ve structured their lives – the layout of their house, their nursing schedule, transportation options, power chairs and communication devises, etc.

Another major highlight of the trip was seeing some of the many people I love in the northwest.  My mom and sister and I got out for a short but beautiful hike in the Columbia River Gorge.  I got to see my friend Jennie who I’ve know forever, and who is now radiant and pregnant.  And Alice, who somehow managed to act sane and hang out with me just days before turning in her dissertation.  I was in Seattle for just 24 hours, but in that time I was lucky enough to get to visit with a few old friends as well as Ashley, Brandon, and our nieces.  Madden, Ella, and Tya stayed up late to see me, and we read bedtime stories together.  It was great to see them, and especially exciting to imagine cousin sleep-over’s that might one day have the girls reading Lucas his bedtime stories.

And it’s good to be back – I missed these guys!  Here’s Lucas working on the sign for “go.”

Krista has been in the northwest since last Wednesday and we definitely miss her a lot.   We’re holding up, but Lucas is looking pretty punk rock tonight with his greasy hairdo (maybe he’s not getting as many baths as usual or something…)

Come back soon Mommy!!

After some recent meandering posts that focused more on us (moving to the west coast, causes to donate to, daddy reflections, etc) we’re ready to get back to our bread and butter:  Lucas!

The short-lived fever and cold a couple weeks ago did nothing to slow Lucas’s increasing ability to wow us with his communication skills.  His sign vocabulary continues to grow – he can now sign at least half a dozen animals (duck, cow, and butterfly being his current favorites).  He’s learned “car,” “bicycle,” and “go” all in the last week.  He can point at his mouth or trach to tell us he wants either one suctioned, often alerting us to a growing clog in his airway before we or his monitors sense any change.  He can say “yes”, “no”, “more” and “all done,” and he’s even modified his sign for “more” to a tiny, energy-conserving but very deliberate movement of his thumb and forefinger.   He can say Mommy and Daddy, though he asks for us far less often than he requests his two FAVORITE things: swinging (we use the sign for play, which is kinda like “hang loose”) and reading books.  He sometimes confuses himself trying to figure out which one he likes more.  The other day we used a bungy chord to hook his swing to a tree in the front yard which led to lots of smiles and frantic “hang loose” signs every time we tried to stop.

We’re sure that the ability to suddenly communicate with your toddler, using words instead of guesswork or telepathy, is an amazing experience for any parent.  But the fact that Lucas has such specific, immediate needs that go beyond food, warmth, and love makes it all the sweeter to be able to ask him what he wants and needs.  In particular, we’re now able to ask Lucas “do you want a mouth suction” before we flip on the machine.  Sometimes we can see the drool pooling up, and Lucas – who used to love a good mouth suction – will sign “no.”  Sometimes we respect his desires but other times, if it looks like he’s having trouble breathing or at risk of aspirating, we override his “no.”  But it’s still a conversation, which feels amazing.

We used to call Lucas the most easy-going kid on the planet, never complaining about anything.  But with his increasing ability to communicate, Lucas is showing us that he actually has strong preferences and that he’s no pushover.   We know this because for the past two weeks he’s been signing “book” over and over and over again, good-naturedly but repeatedly until someone brings him a book.  Then, he often takes one look at the book we’ve chosen and signs “no.”  And then “book” again, meaning we should draw again from the pile.  Lucas’s two favorite books right now are “One Fish Two Fish” and “Baby Clifford’s Animal Friends,” though most Dr. Seuess books will do the trick at this point.  Still, Lucas often nixes 5 or 10 books in a row before we come to the one he wants.  And then he “reads” it, signing “fish” or “hat” or “car” when he gets to the pages with those pictures.

On top of signing, Lucas is beginning to use his voice to communicate.  His vocalized expression-of-choice is still “na-na-na-na,” but he can also say “ma-ma,” “yeah,” “nah,” and even on occasion “da-da.”  He’ll sometimes even sing different variations on these sounds for an hour at a time, experimenting with pitch and volume and tone of voice.  However, every time his speech therapist comes over (with the occupational therapist) he goes completely silent, so they’ve been skeptical when we say he really can talk.  But then yesterday Lucas finally let loose and showed off his verbal abilities throughout his hour-long session.  Mostly it was his ability to catch onto things they were saying that stunned them so much that they started speculating that Lucas may be a small genius.  We’re pretty sure of it.

Of course none of this is easy for Lucas.  If he’s lying in bed he can reach up to his face to sign Daddy (thumb on forehead) or hat (hand pats top of head), but he can barely reach his chin when he’s sitting up and his arms are lying on his tray.  Indeed, his limited range of motion will certainly make the variety of sign-movements more difficult for him as he adds vocabulary.  But already he’s showing such great adaptability and willingness to improvise with communication that we’re sure he’ll be making long speeches about war and peace, disability justice, and tax policy (among other things) soon enough.

here’s a video of Lucas practicing signs (parental advisory: explicit content)

You may assume from the title of this post that we’re not going to use the usual “we” voice of Lucas’s blog… and you’re right!  Perhaps this is the beginning of more blogging in each of our personal voices, something we’ve talked about doing for a while.  So here goes Burke with part 1 of his blog-post-turned-essay…

I’ve been wanting to share some reflections about being a father that build on the parenting resources – including “dad” resources – that have been inspiring to both Krista and I as we continue to explore our roles as parents and caregivers of Lucas.  From the beginning we’ve felt strongly about equality of responsibility in the raising of children; we’ve also been passionate about maintaining our political and social values through the way that we raise Lucas.  However, how these things plays out in practice can sometimes be a challenge, and it often occurs to me that I don’t always live up to my own ideals when it comes to parenting.

In part for that reason, it’s been exciting to find books, websites, and zines that articulate – better than I ever could – the challenges and virtues of shared parenting from a dad’s perspective, not to mention a lefty political perspective.  Over email I’ve gotten to know two dad writers in particular – Tomas Moniz, the editor of the amazing zine Rad Dad (more on that in part 2), and Jeremy Adam Smith, the author of The Daddy Shift and founder of the blog “Daddy Dialectic”. Thanks to both of them (and to Jen Silverman for connecting us!) for opening up the world of “radical dad” resources, which I look forward to continuing to explore.

In fact, when Krista was pregnant I sought out literature on the early stages of parenting from a dad’s perspective.  Perhaps I shouldn’t have been surprised to find that most of the books out there for expecting dad’s are slapstick how-to guides based on cliché male stereotypes – “how to change a diaper at the ball game” – and lamentations on the end of sex/freedom/the good life.   Needless to say that wasn’t what I was looking for.  So it wasn’t until after Lucas was born and we had read just about all the Preemie books you could imagine that I started again looking for dad resources.

Which brings me to my first disclaimer: raising a medically fragile child with a disability is very different than raising a typically developing child.  Early in Lucas’s life, during the post-Preemie/MTM diagnosis stage, I couldn’t really handle reading stuff about by parents of kids without disabilities.  Even if they shared our politics and philosophy about parenting, many of these reflections were based on life with a child who would never have any trouble doing the “basics” (eating, breathing, talking, walking, etc) – things that we most certainly can’t take for granted with Lucas – and it made me sad.  I’ve mostly gotten over that but the reason that My Baby Rides the Short Bus was so powerful for both Krista and I is that is written entirely by parents of kids with special needs.

The Short Bus anthology became our best support resource in the first year of Lucas’s life, but I couldn’t help but notice that only two of the nearly 40 writers featured in the book were fathers.  (Another anthology of special needs memoir writing called The Elephant in the Playroom is not as overtly political as Short Bus but around 25% of the essays are written by dads, including a beautiful story called “Dream House” about a boy who uses a ventilator).  As I joined special needs list-serves and parent-support forums I found that almost all of the people posting were women.  Either most dads were taking a back seat in dealing with their child’s disability or they just weren’t writing about it.  But certainly there must be more than a few dads out there writing about parenting from a non-macho perspective?

It was then that I ordered The Daddy Shift by Jeremy Adam Smith.  The book delves into the transformation that has occurred as more dads take on the role of primary caregiver and more moms take jobs that make them the primary breadwinner.  It’s got some great history that explains some of the sociological changes around gender roles in parenting over the course of the last century, and it also gets into specific stories of dad’s who have chosen to stay at home with their children.  The book tells the “positive (but complex) stories of men and their partners who are building a new alternative… in hope of making the alternative more visible, and viable, to more people.”  He continues:

“If this map has a destination it is a world in which gender roles are more flexible and the division of family labor is negotiated, not imposed.  It is also a world in which public policy supports the choices of twenty-first century families by providing paid leave to both parents as well as high quality day care, universal health care, and protection against discrimination, among other programs that have been shown to fuel father involvement in family health.”

In April of last year I went back to work after taking some time off from full-time employment shortly after Lucas’s birth.  At that moment it happened that I was more focused on getting a job and Krista was more excited to stay at home with Lucas.  It could have gone the other way, and as we consider future transitions (moving to the West coast, etc) it’s likely that I’ll soon be taking a shift as a stay-at-home dad as Krista spends more time in school or working.  So even as we superficially have maintained traditional gender roles through our current arrangement, these ideas really resonated.

In fact, Krista and I are committed to shared-parenting and to continuing to build on the alternative that Jeremy writes about.  I think a lot of young couples are in some way committed to such an ideal, but like I said at the beginning, it’s challenging to make it play out in practice.  The fact that very few dads participate in online parenting/special needs forums is perhaps a testament to how far we’ve got to go towards achieving that ideal.

I should also add that dads probably feel excluded sometimes from parenting spaces because such spaces are set up for moms; one assumption that pervades our society is that moms know best when it comes to their children’s needs. Though there’s good reason for this, I often get frustrated when certain doctors, nurses, administrative people, etc assume that Krista is the only the person to talk to when it comes to Lucas.  People will call and ask for her and when I say she’s not home, prefer to leave a message rather than talk to dad, who they assume doesn’t know much about what’s going on with Lucas.

At any rate, under our current arrangement I spend a lot of time with Lucas during the evenings and over weekends, when Krista often has classes and workshops; but we also try to divvy up domestic work, dealing with health issues, making appointments for Lucas, etc, which The Daddy Shift rightly explains is just as important to shared parenting as caregiving (note that I say “try” – Krista will have to weigh in on how successful we actually are.)

Here I should make another disclaimer: because I have inherited wealth our situation is distinct from the typical household referred to in the book, which depend on at least one “breadwinner” to support the family.  As occurred for the first 7 months of Lucas’s life, we have the luxury of both being able to not work a full-time paid job, at least for a period of time.  Given Lucas’s disability and the potential costs associated with it, the situation has pushed me to embrace aspects of that privilege, as we talked about on this blog back in 2009.   Of course, there are many working class families who also have children with disabilities, and I can only begin to imagine the additional challenges, concerns, stresses, and barriers that they face.   The fact that I have the time to write long reflections like this is perhaps one small example of how class plays out in parenting.

Speaking of writing, I recently learned that an essay I originally wrote for Lucas’s blog will be included in the upcoming Rad Dad Anthology (co-edited by Jeremy Adam Smith and Tomas Moniz, who I mentioned before.)  This makes me feel very proud; it’s a big deal to share our personal stories about parenting and the challenges of caring for a child with disabilities, and I’m really glad that Krista and I have decided to be so open about it (she’s done some amazing poetry and memoir writing in the last year that hopefully will soon be shared on this blog as well.)  Writing openly about parenting and disability isn’t for everyone, but we’ve been inspired by some of those who have chosen (and had the opportunity) to do so, and hopefully our writing can have a similar impact on others too.

Look out for part 2 of “Being a dad” in which I reflect more about parenting as a political act, challenging gender norms, non-traditional families… and more!

This morning was to be our big “March for Babies” walk, starting out at the Washington Nationals stadium and weaving 3 miles through Southeast DC.  We had 9 people signed up as part of Team Lucas Camilo, and brought in $485 in donations (thanks to all who pledged to participate and contribute!)

The only problem was that Lucas didn’t want to go… or rather, he came down with a cold and fever the day before the event and so we had to cancel for him.  The timing was certainly unfortunate, and frankly we were worried for a little while since he he got hit pretty hard.  Burke found Lucas with snot flowing out his nose at 3 am on Friday, and by 9 am he had a fever of close to 100.  That’s the highest fever he’s ever  he had — the last time he had a temperature was when he had a nasty UTI back in the NICU.  Each time he woke up from a short nap he would lie there cringing and wimpering, and by noon we were considering whether to take him into the ER.

But here’s the good news: with some extra naps and lots of love – and a dose of children’s tylenol – Lucas has recovered remarkably fast from the bug.  By late Friday afternoon he was already demanding the swing (despite himself), and this morning he pretty much seemed back to normal, other than the still flowing snot.

Since we missed the big walk today we’re planning on gathering Team Lucas Camilo for a long walk next weekend.  So if you’re around next Sunday morning, come join us for a stroll in Rock Creek Park!

Today was another beautiful day in Washington DC, so this morning after physical therapy Krista and Lucas went outside to bask in the sun… and play and study.  Krista is nearing the end of her yoga teacher training program, so she took flashcards out to practice her Sanskrit.  Lucas, meanwhile, is more and more motivated to practice sign language, so he took his new baby ASL flashcards and went through the deck signing “swing” and “book” and “more” at the pictures on the cards.  It was a very productive morning.  (Lucas also took breaks from studying to taste and kiss the cards.)

Besides giving a Lucas update today, we also wanted to share some news, projects, and interests that have our attention right now, and invite you to join us in supporting any or all of them if you’re so inspired.  We’re sharing this list in part because people have asked us if there’s a foundation or organization where they can give donations to support Lucas and children like him.  So here’s an attempt to start a list like that.

First, this past weekend was the national “fun run” fundraiser for ADAPT, an amazing national grassroots disability rights organization.  The “run/walk/wheel” event was on Sunday, and then on Monday, a group of ADAPT activists went to Congress to protest the Republican-proposed cuts to Medicaid.  They occupied the rotunda of one of the Congressional office buildings, and 89 activists were arrested.  One of their main demands is for Medicaid funding to continue to cover in-home services so that people with disabilities are not forced into institutions, which of course are more costly AND often less humane than allowing people to stay in their homes.  This issue obviously resonates very personally for us, since at one point we had to fight to get in-home services in place to be able to bring Lucas home.  So we’re excited to be supporting ADAPT (together with Krista’s yoga students who also donated to the fun run!), and wanted to invite others to join us.  You can donate to ADAPT here.

Lucas in training for Saturday's walk

This weekend we’re going out for the DC March of Dimes “Walk for Babies.”  We figured this might be a fun, accessible public event that Lucas would enjoy participating in.  (As opposed to a raucous street protest with giant horns and puppets.  We’ll see what he thinks.)  The March of Dimes does good work to improve accessibility of prenatal health care and to support preemie families.  When Lucas was in the NICU we got orientation materials from the March of Dimes, and now we’re on the Parents Advisory Council that they coordinate.  So we’ll be walking (and rolling) as Team Lucas Camilo.  You can sponsor our team online by going here.

And then there is the cause that is most directly linked to Lucas.  A number of MTM families are walking in June to raise money for the Begg’s Lab research on Congenital Myopathies (the category of disease that includes Lucas’s neuro-muscular disease, Myotubular Myopathy).   Although we generally assume that the research has a long way to go before it translates into possible treatments or cures, we’re excited that there’s some hope for treatment in the not so distant future.  And in any case, we’re happy to be supporting this walk!  If you want to learn more about the walk and the Beggs lab, go here and to donate to support myopathy research, go here.

And in news less directly related to disability and disability rights, we’ve been following the case of an experienced Virginia home birth midwife who is being prosecuted for a baby’s death at a birth she was attending.  It is a long story that you can read some about in this Washington Post article.  In the words of our midwives Mairi and Erin (who followed Krista’s pregnancy and would have attended our homebirth had circumstances been different), “Since her arrest Karen has been ordered not to attend any more births.   Already there are not enough midwives to meet the needs of women and families seeking home birth in the DC Metro area.  We turn families away every month.  Karen has attended over a thousand births.  She has been tucking mothers and babies safely into their beds after birth for 20 years.  There isn’t a midwife available to replace her… Karen faces spending the rest of her life in prison.”  Even though Lucas needed to be born in a hospital, the prenatal experience we had with midwives was wonderful.  And should we ever get pregnant with a Lucas-little-sibling, we’ll want the support of home birth midwives again.  Mairi and Erin suggest that to support Karen and midwifery more generally it’s important to counter negative depictions of midwives with positive stories.  So if you have those, you can share them here and here.  And we’ve also donated to Karen’s legal defense fund.

And finally, if you asked Lucas how you could support him, he’d make two fists and enthusiastically rotate them back and forth in his patented sign for “swing.”  So if you’re around DC, come over and give Lucas a push!