Lucas Camilo

2014 was a big year for Lucas, and for our family.  Kindergarten, a new home, a baby on the way.  Here are a few highlights and challenges, mostly for ourselves to look back and remember some day.

• 2014 might as well be known as “the year of the dinosaur” in Lucas’s mind.  As recently as late 2013 Lucas still focused on dogs, birds and bugs as much as dinos.  But somewhere along the line those pre-historic creatures (including pterasaurs and plesiosaurs, their flying and sea-going cousins) became 99 % of Lucas’s world.  We now mostly occupy ourselves with dinosaur books, puzzles, rock operas, and figurines – the latter of which he chooses one of dozens to bring with him to school each day.  It’s an obsession that doesn’t promise to abate anytime soon…

• Dinosaurs were part of the inspiration for our first airborne “vacation” in the last 5 years.  Lucas’s medical condition makes it very difficult to travel so we’d only gone in an airplane with him twice before – once for a medical conference and once to fly across the country when we moved from DC to Seattle.  So our trip to Los Angeles in late January/early February was a big deal.  Among other things, we visited friends, cruised a beach near Malibu in a sand-going wheelchair, and got to see giant dinosaur, wooly mammoths and saber toothed tiger  fossils up close.

• After two good years of preschool at Lowell, Lucas “graduated” in June.  Among other things, he made  major progress in the closing months at driving a powerchair.  (Still, the powerchair remains a big challenge as well.  We had hoped that by now Lucas would have his own powerchair and be able to experience some sense of independence through it.  But for various reasons he’s got a long way to go before that might be possible.)  We already miss his great therapists at Lowell and are grateful for all the people who made his two years there positive.

• Lucas also made some amazing strides this year in terms of his development and communication.  There was a time when we wondered aloud if he would ever understand pronouns or refer to himself in the first person, or have a conversation that is not totally pre-rehersed.  Though he still struggles a lot expressing himself – especially when sitting up in his wheelchair, since talking requires a lot more energy when he’s not lying down – Lucas now generates lots of original thoughts (and they don’t only have to do with dinosaurs!)  It’s really only those of us who spend lots of time with him that get to witness his brilliance… since talking with Lucas requires a little patience, and a lot of silliness.  And so we still often lament the fact that many of our friends, or kids in his class, or other people he interacts with, don’t get to experience the wonderfully amazing Lucas that we know so well.

• Lucas participated in some amazingly successful political action in 2014.  From helping us organize for accessible parks, to being a named plaintiff in a winning class action lawsuit against the biggest healthcare insurer in the state, to making the front cover of the Seattle Times, to marching against racism and police violence… Lucas made his activist parents proud!

• 2014 was a remarkably healthy year for Lucas… save one very unfortunate accident.  Just a few days before he was to start kindergarten, Lucas broke his leg.  He was forced to miss most of the first few weeks of school and spent almost all of that time lying on the couch.  More than anything, the broken femur showed just how fragile and vulnerable Lucas is, especially as his body (with extremely low muscle tone) gets longer, heavier, and harder to lift and move.  On the upside, our community really showed their love during the stressful time that Lucas was injured.

• Despite the rough start, Lucas did eventually get going in kindergarten and its been mostly positive so far.  The kids seem to warm up to him more and more every day (he just got invited to his 2nd birthday party ever!) and he’s learning a lot from his wonderful, funny teach Mr. McCullough.  On the downside, it took a lot of work and pressure on the school district to finally get Lucas a 1-to-1 aide, and even with the extra help there is still so much that Lucas just can’t participate in during a regular school day.   It’s also an extremely long day – he gets on the bus around 9 am and isn’t back until after 4 pm – and though Lucas is able to escape to a special classroom for rest, he still comes home totally exhausted many days.

• Speaking of bring exhausted, Lucas’s sleep troubles continued in 2014.  It feels like we’ve tried everything in the book to get him to sleep through the night – short of giving him heavy-duty sleep drugs – and nothing has worked in a sustainable way.  With a baby on the way, we’d really like to figure this one out!!

• Oh yeah, did we mention there’s a baby on the way?  Come February Lucas will be a big brother, and though we haven’t talked about it much on this blog, we focused a lot of energy during 2014 on the difficult process of having a second child when our first one has a debilitating disease (which also happens to be genetic and easily transferred.)  We won’t get into the details here, but we’re happy to talk with anyone in a similar situation about our journey to pregnancy.  It feels awesome and exciting to have come this far, especially since we have the endorsement of Lucas (who proudly tells people “I’m going to be a big brother!” and “we have a baby in our tummy!”)

• The baby was just part of the motivation for buying a new house this year.  Neither of us have ever been homeowners so that was a big deal, and as everyone knows moving can be a real headache.  The truth is, we still have lots of boxes stacked around the house and a ways to go until we’re officially “settled”, but we’re already feeling grateful to be in a larger, beautiful home, and to have had the help of friends and family in getting here.

• In other news, Lucas turned 5 and lost a bunch of teeth!  He also continued his passion for music and singing, and we even joined a neighborhood family choir.

We hope that we are able to see or be in contact with all of you in the new year.  May 2015 be full of new experiences, adventures, and challenges for everyone.

The wheelchair ramp is complete on the new house so we took Lucas over to check it out this afternoon.  He was excited to do a full tour of the house and name each of the rooms.   For each of the bedrooms Lucas asked “whose rooms is that one going to be?” and fortunately we had brought sticky letters to make a “LUCAS” sign on his bedroom door.  He was excited about that, but even more excited about the next stop.  We spelled it out… “B – A – B – Y”.

Oh, perhaps we forget to mention to our blog followers that Krista is pregnant? That’s right, and just entering her third trimester in fact!  Indeed, adding a member to the family is the primary reason why our search for a house became urgent over the last few months.  And so we’re feeling extra fortunate to have a warm home to soon share with a little one.  The baby in question has the best room in the house, too – see it below in the picture of Krista opening the shades, to Lucas’s delight.

Lucas seems rather excited about the family development, and if you ask him directly he’ll announce, “I’m going to be a big brother!”  For the most part though, he’s content with continuing his deep exploration into dinosaurs, occasionally wondering aloud if “Pterodactyl” would be a good name, or if, perhaps, the baby might be a “long-neck.”  It’s hard for any 5 year old to truly grasp what its going to mean to have a little sibling, so for now Lucas will go about his business, happy to have our undivided attention.  By mid-February, however, things should begin to change…

As mentioned in a previous post, we recently bought a house.  Though I remain ambivalent about home ownership, I’m excited that we get to stay in our neighborhood (just a block away from the house we’ve been renting!), and its certainly a relief to finally have found a relatively wheelchair accessible place with multiple bedrooms on the first floor.  We were also fortunate to have the support of my parents and Krista’s mom which made a big difference given that there were multiple bidders and the house went for significantly more than the asking price.  Indeed, some of my ambivalence around buying a house is due to the current state of the housing market in Seattle, and the fact that so many people – especially people of color in the south part of the city – are being forced out by ballooning prices. I feel extremely privileged to be able to buy such a house in the center of the city I grew up in, and the experience has encouraged Krista and I to increase our giving to organizations that are working towards affordable housing and against displacement and gentrification in Seattle.

All that being said, the main shortcoming of the new house is that unlike our current home there is no way to easily enter it in a wheelchair.  The only way we could get Lucas in at first was to hoist up his chair and carry it up the 6 steps in the back, not an easy task.  So after multiple offers from friends and colleagues to build us a ramp, we ended up commissioning our neighbor Bruce (a raft guide and off-season handyman) to do it.  And as you can see from the pictures below, he’s doing a great job.  We’re considering it a short or medium term solution as we figure out how to best utilize the back porch and yard.  So if you have any ideas…

Meanwhile, on Saturday morning Lucas woke up with blood in his mouth and we soon figured out that another tooth was gone.  For those of you counting out there, that’s the 4th tooth Lucas has lost, meaning he’s certainly ahead of the game for a 5 year old (losing teeth early is a characteristic of kids with myotubular myopathy).  The funny thing about this one was that he literally lost the tooth.  It was nowhere to be seen in his mouth and after fishing around for a while we gave up and went for a walk.  Later that day he and Nonna wrote a note to the tooth fairy explaining the conundrum, and she was kind enough to bring him a cool little ladybug figurine despite the fact that he had no tooth to exchange.

(Update: this morning as Lucas was waking up Krista found a nice, white baby tooth lying on the bed next to his head.  Which is to say that he’s had it floating around in his mouth for the past two days…)

The final bit of news is that Lucas made the front page of the Sunday Seattle Times!  You may recall that a little over a year ago our family was featured in the newspaper as having already benefited from the Affordable Care Act, among other stories of people in Washington state who would be affected by the implementation of the ACA.  Well, the Times decided to do a “one-year-later” update, and as part of the series sent a photographer to grab some shots of Lucas.  On Sunday, we got the paper and found a huge picture of Lucas coming down off the school bus lift, along with his nurse Laurel, the bus driver Mary, and me.  Lucas thought it was pretty cool.

The article is worth reading, despite its shortcomings (including the fact that the Times could somehow only find white people who had been affected by the ACA.)   Lucas is clearly the winner, having benefited from the elimination of exclusions for pre-existing conditions and lifetime caps, and having had his “child-only” plan through Regence go down in price.  Yet the reporter failed to include my quote about how the whole experience has convinced us that a single payer health care system is the only way to go (or maybe he did include it but the ultra-conservative editors at the Times considered it a nod to socialism and took it out).  Indeed, the fact that we require three separate health plans to cover all of Lucas’s needs is ridiculous, and not the fault of the ACA but rather an insurer-based health care system full of complex bureaucracy. The other personal stories show additional challenges people have faced (even as millions have benefited from coverage, improved coverage and/or lower rates). The biggest problems here in Washington seem to involve administrative complications of the new system – which means people spend tons of time getting the coverage they need – and the greed of the insurance companies.  For example, the ACA sets a maximum deductible.  What do the insurers do?  They jack up the deductibles in all their plans to be close to or at the maximum.  For many working people who don’t qualify for Medicaid or subsidies within the exchange, these sorts of changes make it that much harder. Alas, the story of the ACA is a mixed bag, and our conclusion (you won’t be surprised) is that we urgently need to keep pressuring politicians to move towards a single-payer system.  Given what happened in the elections last week that won’t be happening anytime soon, but that doesn’t mean we shouldn’t fight.

And after all that… here are some shots of the new, almost finished, ramp:

We’ve mentioned Lucas’s primary passion — dinosaurs — quite a bit on this blog.  But you may not know that he loves music almost as much as prehistoric creatures.  Lucas loves listening to music at home, and he constantly calls out the playlist when we’re in the van.  (If you wonder why our most current music knowledge is the release date of the new Casper Babypants album , it’s because Lucas hogs the stereo.)  And for two years we took him to Music Together classes with a fabulous local teacher.  We’d sit in a circle with kids mostly younger than Lucas and sing songs (parents sang, kids did whatever they wanted), dance around like trains, pull imaginary persimmons out of our pockets, and bang away at instruments.  Lucas loved it, and he’d sing all the songs at home, though at music class he was usually quiet.

He had sort of aged out of Music Together a while ago, but we kept going until kindergarten made it impossible to go.  And then I saw a little sign up for a family community choir.  I thought Lucas would love it, though I worried that all the extra noise we bring (suction and vent can be quite loud, especially when everything else is quiet) could be awkward.  So I wrote to the choir director and asked if the choir could handle some unusually loud machine noise, and she said “no problem!”

So Lucas and I (and Burke when he can make it) joined the choir.  And its awesome.  There are usually just five or six families with their kids sitting around singing folk songs, or sometimes pop songs — last week one of the older girls requested a song that is apparently on the radio all the time (like I said, I know nothing beyond Casper.)  And we sang True Colors, Cyndi Lauper’s super hit from the 80’s.  The choir director is musically amazing.  She gets the group, most of whom have limited musical experience or talent, to sing some pretty complicated rounds.  And she is so welcoming to Lucas, making time and space for him and his unique sounds, and celebrating when she notices he’s singing.  Or even trying to sing.

The fact that he’s trying to sing along is the amazing thing.  Lucas can be shy when he’s not among friends or family.  For example, during the first few weeks of kindergarten he supposedly only said a few words.  In two years of music class, even when he knew every word to a song, he almost never sang in class.  And this all makes sense to me.  He knows people have trouble understanding him.  He has a quiet voice when he’s sitting up.  He can feel shy, but physically has no way to move himself away, so not speaking or singing is his only way of shrinking away.

But on the very first day of choir, he sang along to This Land Is Your Land.  Then he listened for the rest of the hour, but I was still beaming with pride.  The next week he sang along to two songs.  And then last week we did a call-and-response song that went around the whole circle.  We had done it before and I’d sung Lucas’s part for him.  This time I kept whispering in his ear “are you going to sing?”  (I actually dread this song because the key is hard and I sound terrible when I sing my solo response part.)  The whole choir sings “Hey Krista,” and then I have to sing back “I think I hear my name.”  And then that repeats, and then one more line where you “pass” the song on to someone else.  Well.  We were going around the circle, and then the person next to Lucas went.  And then the whole choir sang “Hey Lucas.”  There was a pause.  And then his tiny, sweet, so-absolutely-unique voice sang back out “I think I hear my name.”  My heart exploded I was so proud of him!

When he passed the song on to me, I couldn’t help but laugh at myself.  If Lucas can do it — with the physical challenge of simply making sound around a trach, and knowing he sounds different than everyone else, and being a shy kid — I certainly can get over my hang ups about my less than perfect pitch!  I mean, I’m still not planning on taking over the Seattle karaoke scene, but I felt so bolstered by Lucas’s bravery.

Yesterday Lucas lost his second tooth.  He got very excited about the tooth fairy coming, and kept asking us what she would bring.  His cousins had told us about writing letters to the tooth fairy, so when I (Krista) put Lucas to be last night I offered to take dictation.  I grabbed a small piece of scratch paper, but it turned out Lucas had a lot to say.  It was exciting to hear all his thoughts (and slow, because after I wrote each sentence, he would take the letter from me and read it, starting again from “Dear Tooth Fairy” each time.)  As the letter got longer I felt like I had this window – through more words than Lucas usually uses – into his thoughts.  And it occurred to me that he was writing his own sort of blog entry about early August.  So here it is.

Dear Tooth Fairy,

I lost my second tooth today.  Will you bring me a puzzle?  Please.  Thank you for the turtle.  I saw E.T. the walrus at the zoo and aquarium today.  And I lost my tooth at music class.

 I saw the sharks eating.  The elephants were eating grass.  I saw the tiger.  I like to do bowling.  E.T. swam right up to me.

I saw a friend who was playing songs at the festival.  The song was called Miles and Miles. 

We saw Moses the camel.  Moses was sniffing my chair. 

We saw trains in Index.  The trains were carrying airplanes.  We went to the Iron Goat Trail.

I like to do the new dinosaur puzzle.

Love, Lucas

The back-story to most of this is our trip to the Point Defiance Zoo and Aquarium yesterday, and then our trip to Index, Washington over the weekend.  Index is a tiny town in the North Cascades, just about an hour north east of Seattle.  Our neighbors have a cabin they’ve lent us before, right on the Skykomish river, so we took Lucas out for a weekend trip.  Index is the smallest town in western Washington with about 160 residents, plus the visitors that come to kayak and rock climb in the summer.  There are active train tracks that run through the middle of town, and right by the cabin, so Lucas got to see giant freight trains up close.

We happened to be there for the annual Index Arts Festival, which meant a warm outdoor summer day with 20 or 30 arts vendors set up in tents around the central town park.  There was a stage where local and traveling musicians (we heard blue grass/old-timey musicians who had come all the way from Bellingham) played for audiences that never got bigger than 50 people.

Lucas’s first goal at the festival was to meet dogs, and there were plenty.  We’re used to approaching strangers and asking if Lucas can meet their dogs – we do it all the time, and people are almost always friendly.  But in Index something felt different.  People were not just polite and patient, but it felt like many people were genuinely really excited to meet Lucas.  There was a vendor who did watercolors of animals who loved meeting Lucas and seemed deeply moved that he liked her goose painting.  There was a family visiting Index who came over quickly to meet Lucas and then offered useful suggestions about accessible hikes (ie the Iron Goat Trail).  There were at least three other wheelchair users at the festival, which felt like an unusually high ratio of chair users for such a small town and gathering.  An older woman in a scooter chair was excited to introduce Lucas to the dog that rode around in her lap, and she was impressed to hear Lucas’s voice.  Another family showed Lucas their two big dogs, including a big whining husky, and they all beamed at Lucas as he admired their dogs.

And there were other people, after the festival, who seemed so happy to have Lucas in town.  An older guy with rolled up flannel sleeves leaning out the window of a beat up pickup truck who pulled over to ask “how old is she?” as a way of meeting Lucas, and he told us about his grandnephew.  A younger guy rolling through town on his bike drinking a beer gave Lucas a giant thumbs up.  We spent the drive home trying to decide what it was that made Index so welcoming.  A higher than average number of people with disabilities?  Small town culture?  Working class culture?  Or just a beautiful summer day with nowhere to be and nothing to do except hang out in a park with a few friends and strangers?

Its hard to say how all this registers for Lucas.  He still doesn’t say anything about his differences, or about how people interact with him.  But that of course doesn’t mean it’s not all registering.  He was in a great mood all weekend long, maybe even a little more willing than usual to explore and try new things.  Maybe it was the attitude of strangers that helped him, or maybe he just felt how happy it made his parents to feel so welcomed.

Lucas’s cousin Tya dressed me up as Princess Penelope for Father’s Day

Krista was sick with a stomach flu over the weekend so Lucas and I got to spend a lot of time together.  I couldn’t have asked for a better father’s day gift than getting to spend extra time with Lucas (though I could have done without the calls of “daddy, daddy!” in the middle of the night and the multiple trips back and forth to his room when he couldn’t get back to sleep at 4 am.)

I don’t put a lot of stock in holiday’s like Father’s Day so I was all ready to do my usual downplaying… and then I saw the challenge from two inspiring dads, Chris Crass and Tomas Moniz, “to make this Father’s Day a Feminist Fathers’ Day and for dads, papas, bapas and all parents along the masculine gender spectrum to embrace feminism and resist misogyny in our families and society.”  I encourage you to read their whole article in Truthout and think about the list of 50 ideas/actions at the end of the article (compiled from lots of different people) to help bring feminism to the heart of our families.  Some of these apply more to kids that are older than Lucas, and some our hard to imagine in the context of Lucas’s disability.  But a lot of it resonates.  As you can see from a couple pictures in this post, I was particularly inspired by #4.

There’s no doubt that feminism has brought profound, positive change to our society, and then men/dads have also benefited greatly from those changes.  There’s also still urgency around combating the worst aspects of patriarchy, highlighted by the viscous misogyny of the Isla Vista killings, and the defensive response by men to the justifiable rage of #yesallwomen.

I’ve long considered myself a feminist but it was actually a good challenge to think about how I apply that political stance to my parenting.  Partly it’s a challenge because when it comes to Lucas I can’t imagine doing things any other way.   Of course I want to be engaged in my son’s life, and I  do my best to be an equal parent in all aspects of our family: from providing care to doing housework to staying on top of appointments to playing games in the park.  This is not to say Krista and I always managed to avoid taking on more gendered parent roles; for example, I tend to be more involved in our finances while Krista has been more engaged in getting everything in order for Lucas’s school transition… and, she’s more into shopping for his clothes :)  But we talk about it all together and try to even things out if it gets too skewed.  I remember a couple years ago when it got really hot outside and I went to the thrift store to by Lucas some tank tops, acknowledging that it wasn’t my favorite thing.  I came away with some sweet, frilly, flowered shirts that I was quite proud of — thereby encouraging Lucas to mess with gender norms at the same time!

Challenging the rigid gender binary seems like an important aspect being a feminist dad.  I’m down with dressing Lucas in pink or putting flowers in our hair or going grocery shopping (the latter has become one of our favorite things to do together of late) in part because I want to show him that it ok for guys to do all that stuff.  It’s better than ok!  Perhaps most importantly, I like to give Lucas kisses and demonstrate my love for him.  In some ways, the fact that he has a disability makes this piece more pronounced — I can be very protective of Lucas and when we’re public places and I feel alienated at how he’s being excluded because of his disability my reaction is to cuddle him close to me and show the world how much I love this wonderful little boy.

If some of this feels a little self-promoting or self-important… well, it probably is.  And as Tomas and others have pointed out in the pages of Rad Dad magazine, there is a certain contradiction in constantly celebrating our efforts to be good, feminist fathers even as we try to undermine the tendency of men to dominate.  So let me say too that I realize that I have a lot of work to do around this.  Part of the reason I wanted to write something about feminist Father’s Day is because I still struggle being more open and in touch with my feelings when it comes to being part of a family… indeed, like many cis-gendered men I’ve been conditioned to be emotionally aloof and it’s a lot of work to unlearn that.  But I’ve had some good role models… like my own dad, who found ways to be very engaged despite a grueling job, and then also worked hard to unlearn aspects patriarchy and sexism that were ingrained in him by our society.

My family (minus a sick Krista) on Father’s Day 2014

As Chris Hayes lays out in his Father’s Day commentary from a year ago, “this is the great gift of feminism to men: it took a sledge hammer to the most stultifying parts of patriarchy including a vision of fatherhood in which dads were expected to be distant, stoic, removed creatures from their kids’ lives.”

(Note: I can’t believe I just wrote about my dad “unlearning patriarchy” on Lucas’s blog.  He’ll get a kick out of it, though, especially since I followed it up with a quote from Chris Hayes, his favorite progressive commentator.)

In the end, I decided not to participate in the #feministfathersday social media frenzy yesterday, in part because I pledged that as part of my commitment to be a radical dad, I would stay off of email and social media for a whole day (!)  But Krista posted the picture of me wearing a tiara and earrings with my arm around Lucas (at the top of the post) and whatya know, it got lots of likes on Facebook.  Alas, I fared better than others who tweeted powerful feminist messages about parenting throughout the day and were slammed but the sexist, misogynist Twitter trolls, who only managed to reinforce our point.  I guess I should be grateful that Lucas’s blog doesn’t have any haters who post rude comments…

Anyway, here are some tweets from a few stellar feminist dads I know.  Happy late feminist Father’s Day!

Feminism movement has helped change society so men can be far more loving and emotionally involved in their families. #feministfathersday

— Chris Crass (@chriscrass) June 16, 2014

#feministfathersday because we need to make room for gay dads, at-home dads, lesbian dads, trans dads, more–gender isn’t a straightjacket

— Jeremy Adam Smith (@jeremyadamsmith) June 15, 2014

 

#feministfathersday because #feminist policies like paid parental leave & legal caregiver protections can help us be the dads we want to be

— Jeremy Adam Smith (@jeremyadamsmith) June 15, 2014

As fathers we can help raise our sons and daughters to be powerful, loving, courageous and end misogyny and violence. #feministfathersday

— Chris Crass (@chriscrass) June 16, 2014

#feministfathersday, because our boys should be able to express all their feelings without shame

— Jeremy Adam Smith (@jeremyadamsmith) June 15, 2014

Lucas carried the momentum from all his spring break animal adventures into school over the last few weeks.  He continues to make gradual progress with his power chair driving and is also learning to use a special iPad set up to be used as a assistive communication device.   In classic Lucas style, he’s much more interested and amused by the idea of turning the communication program into a game, and especially loves stringing together long, repetitive, sometimes-garbled sentences and then playing them over and over again… all the while smiling proudly at his work and repeating the nonsense the device is spitting out, even hours later when we’re doing something different.

I’ve been thinking lately about some puzzling challenges and paradoxes in relation to Lucas’s behavior and development (this is Burke writing, by the way.)  Now, I’m not a social scientist or anything so this is not based on any scholarly research about childhood development, or disability.  Which is to say that I don’t really know what I’m talking about.  But as Krista and I often find ourselves observing and talking about the weird, fascinating, and sometimes frustrating contradictions of Lucas’s personality, I figure its worth sharing a little…

One example is how Lucas relates to other people, especially in groups.  To begin with, communication is difficult for Lucas because of the weakness related to his disability which makes it hard to be in a position to see what’s going on and then communicate about it, and also leads to him having a quiet voice, slurred speech, and a limited ability to carry on longer conversations.  (Ok, that last one is an understatement, but we’ll get to that more later…)  A few weeks ago Lucas went through a very tough stretch in terms of hanging out with other people.  The low point for me was our attempt to take him out to a Jewish seder that a bunch of our friends had organized.  It was such a great community event with lots of people who know Lucas and were excited to see him.  But after about five minutes he was done, constantly on the verge of tears, demanding to go home, eventually agreeing to read books with the awesome childcare volunteer Mollie but still just barely holding on.  A few minutes later, though we had to leave shortly after the program got started and it felt disheartening, for me at least.  As soon as he got back in the van, Lucas was happy as could be.

Events like this had us talking and wondering – what is that frustrates Lucas about these interactions with other people?  Is he starting to recognize the limitations of life with a disability?  Maybe sometimes he just doesn’t have the energy and patience to try to communicate.  Or is it just a typical phase for a kid his age, throwing tantrums when he doesn’t get his way (in this case he had made it clear from the beginning that he would have rather been at home reading books).  It’s tough to know because Lucas doesn’t verbalize to us any of his emotions, or explain the reasons behind his desires.  But he does get pissed when he doesn’t get his way.

Just when I start to wonder if we’ll ever be able to participate in a group activity with Lucas (other than going to the library, zoo or aquarium) he had a couple of great interactions.  We had some friends from CISPES over for a “Education Night” involving some political readings, and though he preferred to watch Winnie the Pooh for the first part of the evening, we got him in his chair before bed and he proceeded to wow the crowd with his ability to spell the names of  all the characters who roam the Hundred Acre Woods.  He was so proud of himself, beaming as he belted out the letters, as if on the verge of winning the spelling bee.  He had a few other great interactions in the ensuing weeks, including a poltluck at our house last Sunday and a  service at the Valley and Mountain church in south Seattle.  So we know that he can do it.

You can see the baffling contradictions of Lucas’s development at these moments.  On one hand, he’s keenly aware of people around him, repeating something that someone says a moment later – with the perfect intonation and in a way that makes it obvious that he knows he’s making a hilarious joke, and one that comes across as advanced for a four year old.  Or, he’ll go through and name a type of insect that starts with every letter in the alphabet from A to Z (Harlequin cabbage bug anyone?)  He can almost do it with dinosaurs too, incidentally.  The point is, he’s a smart kid.  But then someone asks him what he did at school that day and he can’t answer.  Maybe it’s just that he’s refusing to answer, but the way he responds it seems like he genuinely doesn’t know.  It’s kind of a mystery.

What I can say with certainly is that his cognitive development is not typical.  We used to say that he has a physical disability but that mytubular myopathy does effect his mental development.  But even though I still say it sometimes, I don’t actually think its true.  Nor do I think he falls on the autism spectrum (though we have at times considered it).  His development delays are pretty unique… something that deserves more description as I’m curious what other MTM parents (as well as parents of kids with other disabilities) have to say about it.  People sometimes hear us describe this and try to minimize what we’re seeing, saying it’s no different than a typical four year old.  The truth is, some of these things are regular-old-kid behavior… But we also see things that seem socially, emotionally, or cognitively unusual for a kid his age, and we want to acknowledge and even be curious about that part of Lucas, too.

The most obvious example is his continued insistence on using the second person to refer to himself – and conversely, the first person to refer to someone he’s talking to.  So Lucas will say “you want to read a book!” or “you’re going to go to school today” when referring to upcoming activities that he plans to engage in.  When we correct him he’ll say “I want to read a book” drawing out the “i” sound so as to emphasize the change.  But then moments later he’ll be back to saying “you.”  And whenever I do something funny that makes him laugh but that he doesn’t totally understand he’ll say “What did I do??”, meaning, of course “what did daddy do?”  It’s our own fault, in a way, because a few years ago when he started doing it we cracked up every time, thereby reinforcing the behavior, especially since Lucas loves to make a good joke.  But now he’s months away from his 5th birthday and still doing it!  Krista and I, as well as his nurses, are used to it, and we often correct him but sometimes just continue with the conversation.  For others, its jarring and contributes to the challenge of communicating with Lucas, which already requires a lot of patience.  His favorite way to answer a question is “you want me to tell you!” which is basically his way of saying “I don’t know” but literally means “I would like you to tell me the answer” with the pronouns reversed.  Trying to explain this to the person who has just asked “what’s your favorite color Lucas?” is kind of like doing a rendition of “who’s on first.”

The “you want me to tell you!” refrain deserves special mention because it is the single phrase that Lucas most often says – by a longshot.  I’ve started to think of it as an expression of his confusion – and perhaps, incipient frustration – with his disability.  Lucas is prevented from doing so many things because of his extremely limited mobility, and I think that he’s starting to realize that and internalize the frustration that it leads to.  The exasperation I sometimes hear in his voice when he says “you want me to tell you!” conveys that sense of immobility.  It’s like he’s saying, “I have to ask you for everything else – books, game pieces, moving my arm when its stuck on the couch – so I might as well just get you to answer that stupid question for me too!!”  Who knows, I’m probably reading too much into it, but there’s no doubt that oftentimes when he says “you want me to tell you!” he in fact has an answer to the question and chooses not to say it.

As I’ve been writing this post over the last few days Lucas has been doing especially great.  He’s just sooo happy sometimes, and his smile and joyful high-pitched voice at those moments is infectious.  My parents and I took him to the Burke Museum on Sunday and after checking out the small dinosaur exhibit we spent nearly an hour playing with little plastic dinosaurs, and he was ecstatic.  Then we picked up some dinosaur quiz cards from the bargain rack at the bookstore, and one of them asked “what’s the longest name of any land dinosaur?”  The answer, of course, is Micropachycephalosaurus.  I told Lucas that, he repeated it, and we went on to the next question.  Later that night I asked him what the longest dinosaur name is – and without skipping a beat he said “Micropachycephalosaurus!”  And this from a kid who still doesn’t use “I” when referring to himself.  Go figure.

Recently, the brilliant Rad Dad zine was re-launched as a full-on magazine.  The first issue includes a plug for a certain blog written by a couple parents about their son Lucas:

I’ve come to know Lucas Camilo through the blog his parents create and I am a better father because of it. Hell, I’m a better human because of it.  I felt so angry when he couldn’t view a movie because the theater had no handicapped accessibility.  Then angry with myself when I notice how often I participate in events that don’t either. I was terrified when Lucas was hospitalized and had to be resuscitated but brought to tears by the story of him meeting the first responders a year after the incident. Yes, I’ve been following Burke and Krista, Lucas’ parents, that long because they do an amazing job of balancing the personal story of their son and parenting a child with special needs while also reminding their readers of how they are still part of a lager community; they still work hard to create a more just world.  Burke and Krista and Lucas are the kind of of family I want mine to be.  Do yourself a favor please, read this blog!

It’s a very generous and flattering review written by the founder of Rad Dad, Tomas Moniz.  (And, you may recall that an essay about fatherhood by Burke was published in the Rad Dad book that came out back in 2011 so this plug was not out of the blue.)  We appreciate the plug and also recognize that it’s a little weird to have a personal blog — which we started ostensibly to update family and close friends about Lucas’s early health challenges — become something that would get reviewed in a magazine.  The truth is, many of our posts still focus primarily on Lucas’s day-to-day activities and probably aren’t that interesting for the broader “rad dad” audience.  And yet, at times our reflections on parenting a child with special needs seem to resonate beyond just the people that know us well.

The fact that people still appreciate Lucas’s blog is one reason we keep writing it.  But it’s also for our own personal benefit: the experience of parenting has ended up being quite different than we ever expected and so writing about it is one way to come to grips with the dissonance between those expectations and our current reality, how we see most other families around us, our own experience of childhood vs. Lucas’s… and so on.  We don’t always write eloquently about it, but just acknowledging that it is so helps us be more grounded in the world.

Still, we sometimes feel ambivalence about being so public.  On the one hand, we’re organizers… and most of our adult lives we’ve tried to live in a way that reflects our values, and even promotes them.  Tackling disability, grappling with grief and challenges, celebrating successes — and doing it publicly — fits into that.  On the other hand, there are certain things that are harder to share publicly; and yet once you start down that path it’s hard to know how far to go.  We’ve talked about the fact that Lucas has a hereditary genetic disease, for example, and therefore thinking about expanding the family gets complicated quick.  That reality is a big part of our life but not something we feel comfortable talking about in detail on a blog.  But we have written about feeling isolated around disability, about confronting feelings around death, about money, privilege, and battles over medical insurance coverage.  It’s all quite complicated and interconnected, made more difficult to articulate and talk about publicly because of how closed-minded our society sometimes is to honest conversations about parenting, among other things.

Trying to push the envelope around honest parenting conversations is what Rad Dad is all about… so if you’re interested and live in the Seattle area then join us this Saturday (March 1) for a radical parenting celebration, and some readings!

Rad Dad & Hip Mama Relaunch! SEATTLE – BLACK COFFEE COOP

We’ll leave you with this blurb from the inside page of Rad Dad that describes what its all about:

Being a rad dad is not about being cool. It’s not about being hip, not about trying to be in style, not a trend. A rad dad is about radical parenting. The uncomfortable kind. The difficult kind. Radical as in not complacent, as in conscious and conscientious of our impact on our children, our partners, our environment. Radical as in taking responsibilities for the privileges some of us have, whether we want those privileges or not. Radical as in being cognizant of how we challenge patriarchy (or not), how we impact those around us, how we might depend on unquestioned roles of authority and hierarchy.