Lucas Camilo

(Burke writing) We’ve been trying for a while to post something about all the cool things Lucas has been up to the last month… and by extension, all the cool things we’ve been able to do with him lately.  That particular post is in draft mode as we’ve been too busy to finish.  But in the meantime I feel like talking about something else that’s been on my mind related to Lucas.

You see, despite all of his amazing feats and progress, it’s still really hard to communicate with Lucas these days.  And sometimes when friends visit who have read all of our positive, uplifting blog posts — but haven’t met Lucas or seen him for a long time — we want so bad for there to be a good interaction, and they want it too… but, well, Lucas is a bit ambivalent about the whole thing.  And that can be hard.

We’ve talked before about his unique way of communicating: he rarely responds to direct questions unless repeated multiple times; he won’t talk about feelings or emotions; he seems uninterested or unaware of the “why” questions that most kids his age ask repeatedly; and more often than not he’d just assume get to reading a book or doing a puzzle.  All of this makes it very difficult to have an actual conversation with Lucas, beyond a few back and forths that often feel pre-rehearsed.

Sometimes we forget about all of this because Lucas is so smart and so funny… and overcoming so many obstacles to even communicate at all!  And, his ability to communicate really has improved a lot of late.  But still there are times its frustrating because we know that he has so much potential to interact and yet for some reason chooses not to.  A few times over the last few weeks this has come through when we’re with friends who really want to get to know Lucas.   They ask him questions and do their best to make a connection based on what they know about him.  At best, any conversation has to be facilitated by the two of us; more difficult is when even our facilitation doesn’t break through the apparent communication barrier.  In those cases, we acquiesce, letting Lucas turn to the “other side!” as he demands (with his head pointed away from the action and toward the backrest of the couch) so that he can read a book, do a puzzle, or play with the iPad “by yourself!”  (He still prefers using the second person “you” when referring to himself which also makes for tough communication.)

It recalls up for me some really poignant, though hard, conversations that I had recently in a special needs dads support group.  Granted, the kinds of disabilities our kids face are all over the board, and yet at the same time there are some intense commonalities of experience.  A number of dads with older kids talked about how at a certain point it became apparent that their special needs kids (in contrast to their typically developing kids) weren’t getting invited to many play dates, or birthday parties, or activities that involved bringing families with young kids together.   And that was hard.  Krista and I feel very fortunate that we have a family and community here in Seattle that love Lucas and seek to include him.  But the fact of the matter is, he’s hard to include.  Often that’s because of his wheelchair, and trach, and vent, and suctioning, and all the gear we have to lug along to even get to a gathering.  But it also has to do with his communication and the challenge, and sometimes awkwardness, of including him.

Part of our emotions around this go back to the recent passing of one of Lucas’s MTM buddies, Matteo.  As we shared in our last post, his parents have been so amazingly open in writing about their son’s death, and displayed such intense love for him, that every time we read something on Facebook it brings a flood of emotions.  His dad’s eulogy, posted yesterday, hit me hard… not just because I could imagine myself having to write something similar about Lucas sometime in the future.  But also because it struck me how much Matteo was like Lucas… quirky in his communication, very difficult at times to read and understand, and yet deep down, an amazingly vibrant human being.  Perhaps the tragedy is that too few people get to really know the likes of Matteo and Lucas.  In that sense, Krista and I, as well as Donald and Nancy (Matteo’s parents), are extremely fortunate.  We spend so much time with the beautiful enigma that is our child that we get to truly know all that he encompasses.   And still, its hard to know that others aren’t quite so fortunate…

It’s taken us a while to get settled back in Seattle after the MTM family conference.  After a very busy week catching up we finally have some time to write more about the experience.

As we said in a previous post, the highlight of the journey for us was meeting other families and being in a space where we could learn from each other.  We’ve heard that some of our MTM friends felt let-down after leaving the conference and perhaps that’s true for us as well; the sense of connection and belonging that we experienced during 3 days in a Minneapolis hotel is not something we feel every day.  The funny stares when we fire up the suction machine or the quick look away of people who can’t bring themselves to witness Lucas and his ventilator – all that is real and it’s only when you spend a few days surrounded by people totally comfortable with vents and suction machines (not to mention all the other equipment) that it feels disconcerting to be back in the role of “other.”

But it was more then just the fact that people were accustomed to a kid like Lucas.  It was celebrating and laughing as we told stories about our life with Lucas, and seeing a look of total understanding on the face of someone else.  It was also important to be able to talks about the harder parts of life, the frustrations and challenges, and even grieve a little.

So yeah, the conference was great for us… but, as people have asked since we got back home, did Lucas have fun?  From what we could tell he also enjoyed himself (he often said “You’re at the conference!  We’re in Minneapolis!”) and though it was tough at times to get him interacting with the other kids, we’re very glad that we figured out a way for all of us to go as a family.  He was in such a good mood the opening night of the conference that we took him to the hotel bar with another family to watch the Mariners-Twins game on the TV.  Needless to say it was a pretty funny sight to see two MTM kids and all their gear sidled up to the bar.

It was interesting to meet the other kids and learn about similarities and differences with Lucas.  For example, Lucas still refuses to use the first person when referring to himself  and we learned this was also true of a couple other kids.  Andy is a smart kid in the 5th grade who still refers to himself in the 3rd person (Lucas prefers the 2nd person as in the title of this blog post).  A lot of the kids tend to be very focused and skilled at memorization and attention to detail.  They also have trouble expressing emotions.  Indeed, a couple parents mentioned that the idea of their kid being on the autism spectrum had come up more than once.  This is something we’ve also started to talk about lately… but the doctors and specialists are so focused on Lucas’s respiratory system and physical health that sometimes it feels like no one bothers to noticed that he also has a brain…  and that his cognitive development is a little quirky.  The parent-to-parent session at the conference gave us a great opportunity to talk about all of this.

One final thing we noticed through observing and interacting with the other boys is that Lucas tends to be on the lower end of the spectrum when it comes to muscle strength – most of the other kids, for example, can sit up on their own and/or hold their heads up (Lucas needs assistance for both).  This was hard for us, and we couldn’t help but feel envious at times and wish that Lucas was just a little bit stronger.  On the other hand, he tends to be on the upper end of the spectrum when it comes to communication skills.  We do feel very fortunate about his ability to verbalize and say what he wants.

Going back to the medical research, this was another area where we found ourselves with mixed emotions.  On one hand, its very exciting to see all the progress that has been made (we mentioned some of this in a previous post back in May).   We knew a lot of the general information about the MTM research, which is advancing in two realms: gene transfer therapy and enzyme replacement therapy.  The former has made the most progress in the last year, in particular through trials involving MTM-affected dogs.  There is no assurance that successful trials in dogs will lead to success in humans, but the research has come far enough along that private biotech companies and venture capitalists are jumping into the mix.  So in addition to the doctors we heard from some of the leaders of these companies who plan to move the research towards clinical trails in humans – which is to say that some of the kids at the conference could someday be the beneficiaries of such a treatment.

Even as we worked through our skepticism about the interplay of capitalism and disease research, we found ourselves cautiously optimistic, but perhaps not as exuberant as some others in the room.  Clinical trials are at least a few years away, and an actual treatment on the market is a few years beyond that.  What’s most important for us is to keep doing everything we can to make a good life for Lucas in the here and now, while also supporting advocacy and accessibility for people with disabilities.  We’re grateful for all those who are so invested in producing a treatment for MTM, and for everyone who challenges those aspects of our society that tend to limit the lives of people with disabilities.

One final highlight of the conference was the variety show on Saturday night.  Lucas was up first and was totally ready to sing “Take Me Out to the Ballgame” (he’d been practicing for weeks)… until Burke put the microphone in front of his face.  There was a long silence as we waited for him to start singing, broken by Lucas pointing to the mic and saying “you wanna put that away!”  The rest of the crowd ended up joining in for a rousing rendition of the song, and though Lucas pretty much refused to sing, he did motion “1-2-3 strikes you’re out!” during the final stanza.  And later in the hotel room he redeemed himself  (see video at the end).  There were other great performances, including a 19-year with MTM lip-syncing a Bill Cosby monologue, as well as some of the doctors and researchers doing a sing along of John Denver’s “Country Roads” (a favorite of Lucas as a baby).

Finally, we want to thank the organizers of the conference (Erin, Mark, Shannon and Marie) who did an amazing job making it happen, as well as others like Paul and Alison Frase (co-founders of the Joshua Frase Foundation) who have helped make this coming together possible. There was so much that was great about the conference that we find ourselves scheming about ways to continue connecting in person with the families that we met, as well as others who couldn’t make the trip to Minnesota.  Already there are discussions about a west-coast MTM gathering that would focus entirely on hanging out and sharing between families.  We’re looking forward to it…

“Take Me out to the Ballgame”

Another video of Lucas and mommy playing baseball in the kids area at the conference:

(Krista writing)

I’m a bit obsessed with reading about disability these days (please keep recommendations coming!)  I just took a break half way through Far From the Tree, the giant brick of a book based on the author’s 2000+ interviews with parents of children who are “different.”  The parents’ stories of allowing themselves to be transformed by their wildly unexpected parenting journeys helps me feel like I have a tribe out there.

But it’s the political disability community – the older-guard disability rights activists, and the younger, more idealistic disability justice crowd – that talks about the experience of disability in a way that regularly blows me away.  Their poetry, theory, music, and performance resonate with my experience of parenting Lucas, but they use new frameworks and new language.   For example, they talk about this false notion in our society that disabled people are “dependent” while able-bodied/non-disabled people are “independent.”  Who said that needing help with tasks like growing your food or making your shoes counts as “independent” while needing help putting the food into your body or getting the shoes onto your feet makes you “dependent?”  Why the line?  Wouldn’t it make more sense to recognize all of our interdepence?  It makes sense to me not just for political reasons, but also because it is a view of the universe that nurtures my soul.

I write all this as a preface to my day yesterday, when things went to hell for me.  Lucas was sick.  Burke was out of town.  I won’t bore you with trying to describe how it took me all of three hours to get Lucas and myself out of bed, fed and dressed for the day, but it has to do with the fact that Lucas somehow lost all ability to entertain himself, even for 15 seconds.  He chanted “Mommy, mommy, mommy” endlessly while I prepared his food.  And while I walked from the kitchen over to his side to see what he needed.  And while I went to the bathroom.  I’d tune the chanting out, except that when he’s sick sometimes he actually needs me to clear his airway ASAP, but he doesn’t necessarily change his tone of voice from the “Mommy, mommy, mommy” chant that means he wants me to sit next to him and ask him “what kind of dinosaur is that?” about every last dinosaur in his dinosaur sticker book.

Another hard element of the morning was that yesterday was the anniversary of my dad’s death.  It’s been long enough that I don’t feel the sharp sadness every year, but since we moved to Seattle his being gone has felt a little bit more raw.  We’re so close to where I grew up – he could have been here helping us love and care for Lucas.  And to top it off, I was starting to worry about Lucas.  He’s had a lingering cold for over a week now, and while it hasn’t been too serious, it has tired him out to the point that he’s been sleeping lots and hasn’t left the house in days.  It’s likely that he’ll get over it with a round of antibiotics, but inevitably we worry when a cold knocks him out.  For kids like Lucas, a common cold can turn into pneumonia or some other illness else that could be life threatening.

All that mess of emotion – grieving, fear, worry, grumpiness about being alone for the day (one whole day!) – got the better of me, and I found myself sobbing as I sat next to my lovely, endlessly demanding son who was now prompting me to ask him another set of predictable questions.  “How do you spell cat?” he’d say.  And if I didn’t ask, he’d repeat with just a little more volume, “How do you spell cat?”  We’ve been through this enough that he knows that I know that he is feeding me my line.  Maybe he was trying to get me to toughen up, or change the subject.  But the truth is that Lucas isn’t too worried about other people’s emotions – as far as I can tell – so I think he was just moving forward with the day and letting me know that I needed to come with him.

Usually I am grateful for everything about his quirky, curious, determined personality, and it helps me through slumps.  But yesterday the slump was too deep, and the many, many hours of the day – with him and the laundry to be done (his bed smelled strongly of pee) and the dishes to be washed and the medicine to be given and the games to be fetched and the books to be read – looked like too much for me to handle.

And so I remembered that I don’t have to do this alone.  I remembered that, even though I grew up with a father who believed his main job as a parent was to teach me to be independent, I can be interdependent.  And even though Burke is on the road for work, and family is out of town, and our lovely friends in Seattle don’t know Lucas like the people who saw him grow up from his tiny, original four pounds in Washington DC… I could still ask for help.

I wrote an email to two sets of friends, grossly understating the urgency by saying I was feeling a bit overwhelmed.  Asking for help is hard for me, and the universe rewarded me for going outside my comfort zone.  Within an hour they’d both called me.  One promised to be over before Lucas’s nap to read books, the other would come over in the afternoon with her new puppy.

I’m not sure how to talk about this without clichés.  I felt like I’d won the interdependence lottery!   It was better than a locally-brewed ginger beer float with vegan horchata ice cream on a hot day. (Which, Dan, Andy, and Stef, I will take you out for any day.)  Even before they came over, what had looked like a thousand uphill miles ahead of me transformed into a do-able day.  I could sit and play the spelling game for an hour, knowing I’d be relieved soon enough.

Burke and I both want to do more of this – we want to be available to do these kinds of things for friends and neighbors, and we want to keep getting more comfortable asking for help when we need it.  A while back we thought about creating a formal care team for our family – and I’ve read about some cool ones – but we’re often not exactly sure what we need, since so much of our medical needs are covered.  This weekend having book-readers was an urgent need, and I’m sure other needs will come up.  So if you’re interested on being part of an on-call book reading Lucas team, let us know!  Or if you have ideas, models, or needs for your support team, we’re happy to offer our skills, time, and love.

(Burke writing) Krista is off on a 80-mile bike ride today!  Lucas and I were there this morning to cheer on her and about 20 other people as they hit the road.  The ride is the annual “Solidarity Cyclers”, a fundraiser for the Seattle chapter of the Committee in Solidarity with the People of El Salvador (CISPES).  You can still sponsor Krista (or me for that matter as I’ll be joining for day 2) by giving through Paypal at the bottom of the registration page.  Note: Krista will have to explain about the eagle in the picture once she returns.

Lucas is napping now so I thought I’d take a few minutes to reflect on some of our recent adventures.  We’re off to a Mariners game later today so I’m going to let him take a long nap…

As Lucas has embarked on summer vacation we’ve had to be a little more creative about how we spend the days – its amazing how 3 1/2 hours a day, four days a week of school suddenly seems like a lot of time when you take it away.  Lucas still has nurses most weekdays so that helps both of us get our work done, and having someone around to take Lucas out if the other one of us is busy or out of town is also really nice (Krista just spent 4 days in Portland for a wedding and time with friends, for example, and I was grateful to have support from a nurse a few of the days).

Among the things we’ve done lately are trips to the lake (when the weather allows it), the zoo, the library for some Spanish-language readings, a birthday party, and a brilliant two-day excursion to a cabin in the woods near the town of Leavenworth.  The latter was a particular highlight for Lucas as he was able to cavort with dozens of hummingbirds, 3 dogs, 2 horses, 2 donkeys… and we even saw a bear!  Our friends Eli, Lili and Pax were amazing hosts and indeed it’s trips like this that make us very happy to be back in the Pacific Northwest.

The other day Krista and I were talking about how fortunate we feel to be getting out and doing so much with Lucas… and having fun while we’re at it.  Part of it is that we just want Lucas to be able to enjoy his life as it is now – his fascination with animals, books, flowers, fruit in the grocery store, or whatever his latest passion may be.  This is by no means a given.  For one thing, he’s been extraordinarily healthy while many of his medically fragile peers often struggle with frequent illnesses and hospitalizations.  And indeed every time we venture out there’s a certain level of risk involved.  Just yesterday driving home from the zoo we had to pull over and do an emergency trach change on the side of the road since Lucas was having trouble breathing.

There’s definitely some choice and determination that goes into in doing all these outings.  We could, for example, be focusing a lot more on learning to drive his power chair – something that remains a big challenge – or practicing communication with his Dynovox speech device.  But come on, its summer!  Lucas deserves to be out mucking it up with the best of them, even if his style, and methods, and the precautions we have to take, might be a little different.

Meanwhile, Lucas has had a number of appointments with specialists lately – all of which have gone fine – and at some point we’ll do an update on such matters… not to mention his power chair progress and other things he’s working on in therapy.  Speaking of chairs, below is a picture of Lucas enjoying a serene day at the lake in his new push chair, which has been an awesome boost to his mobility and stamina.  And some other recent shots as well…

On Saturday “Reptile Man” came to our neighborhood community center and showed off his animals to nearly 100 awe-struck little kids (plus their parents).  We ran into neighbors who have a 2 1/2 year old, Mari, who also uses a wheelchair, so she and Lucas sat in the front row.  The whole production was right up Lucas’s alley — Reptile Man gave all sorts of fun facts about animals (ie: boa constrictors can’t actually swallow humans) and shared the kids general awe of snakes and lizards.  Each time he brought out a new animal to show the audience, Reptile Man made sure to hold them extra close up for Lucas and Mari.  It was very exciting, and Lucas today is still beaming when he says “you touched the snake!” (“you” meaning himself.)

A few months ago we tried to get Lucas interested in a large lizard that was on display at an outdoor festival, and Lucas absolutely freaked out at the suggestion that he touch it.  So it was nice to see him being so adventurous with Reptile Man.  He gave the tortoise lots of pats, touched an alligator and a small snake.  The only one he wouldn’t touch was the extra large viper snake, which wouldn’t stop flicking its tongue at him.

At school this past week Lucas started practicing driving on a new loaner power chair, and that seems to be going OK.  But it’s still physically hard for him to steer, and he gets frustrated when he wants to go forward but can’t.  We can’t help but wish for even better technology so this would be easier for him – a lighter chair, a more sensitive steering devise, the perfect head rest.  But it seems like maybe he’s got close to the best possible chair setup that exists now, so we’re hoping we can find the right hand position to make it work.  And ultimately learning to drive a power chair might just end up being more difficult for Lucas than we thought it would be.

The other big adventure last week was the addition of even more experts to Team Lucas, which meant a long, long morning at Children’s Hospital.  We started our day meeting a nurse practitioner in the neurosurgery department.  Neurosurgeons follow Lucas because of his hydrocephalus (extra fluid in his ventricles) which has been steady since his first days of life, but the fact that he has such large ventricles tends to worry doctors — especially doctors who have only gotten to know Lucas via his CT and MRI images.  The nurse came into the room ready to run through a battery of tests, but thankfully she spent some time getting to know Lucas (who was mostly chanting “more books!”), and determined that he was not showing clinical signs of excess pressure on his brain.  So for now we’re off the hook – she, like our docs in DC, was convinced he is doing well without brain surgery.  And of course we like doctors who subscribe to the “don’t fix it if it ain’t broken” philosophy, so we were happy about that new team member.

Next up was the new Physical Medicine doctor who we’d heard good things about, but Dr. Apkon proved to be even better than expected.  In medical hierarchy, physical medicine doctors oversee therapists — physical, occupational, speech, etc.  In DC the one we saw most of the time seemed to interpret her role as rubber stamping whatever our therapists were already doing.  Our visits often felt like a wasted trip because the most she interacted with Lucas was checking his ankle flexion.  (Which, needless to say, has not been our topmost priority.)

But our new doctor was really helpful in thinking through everything that helps Lucas be independent/interactive in the world: power chairs, wheelchairs, standers, bath chairs, etc.  She showed us pictures of presentations she’s give to SMA families (a muscle disease that has some similarities to MTM), describing new contraptions that might enable Lucas to move his arms more.   She also talked us through the physiology of a growing kid’s body that does not bear weight, about things we can do now to help Lucas in the long run (turns out ankle flexion will be important…)  The development of our bodies is built on the assumption that we are upright and our bones are weight-bearing, so we talked about the fact that Lucas’s bones will likely never calcify like other kids, making him prone to fractures.  She also described the anatomy of a developing hip socket, and told us about better positioning to help Lucas’s hip socket develop, minimizing the risk of the bone popping out of the joint.  And of course, like all our favorite doctors, she actually spent time talking to Lucas — about books, stickers and all the other important things doctors should talk to their toddler patients about.

Our last MD visit of the day was with our neurologist.  Lucas was exhausted and ready, as he said over and over, to GET IN THE VAN AND GO HOME.  Lucas can be quite clear about being done, so he turned that final appointment into a quick affair.  In a few minutes we decided to go up to a full dose of the medicine Lucas is taking experimentally for muscle tone to see if it helps.

On our way out our very favorite nurse at Children’s stopped by to say hi.  She coaches the US Paralympic swim team, so gave us a brief report while checking in with Lucas about penguins.  And then in the hall on the way to get our flu shots we ran into both of Lucas’s respiratory therapists, and they were both excited to see Lucas so we couldn’t just rush off.  (These are the times I’m sure Lucas wishes he had a power chair — so he could just keep rolling towards the door.)

And then we were in the van, and Lucas was asleep before we were even half way through Mister Rabbit.  And grateful for the great team of docs we’re getting to know here.

Krista is in Washington DC this weekend and so it’s just me and Lucas.  We’re missing her but also enjoying ourselves in the good weather.  My dad (aka Papa) is coming over today and we’re going to have some quality boys time.  Lucas doesn’t like college football so I guess we’ll have to crack a couple cold ginger beers and watch “Polar Bear Polar Bear” on youtube repeat…

Yesterday Lucas and I spent the whole day alone together without interruption (except for a 45 minute occupational therapy visit in the morning).  It was both glorious and challenging.  By the end of the day the house was a minefield of crayons, markers, books, banana-stained rags, medical supplies, toddler clothes, dirty dishes, and more… I was so tired that I didn’t bother to clean up, just collapsed into bed to watch a movie once Lucas fell asleep*.

Though I was tired, I also felt really good.  Lucas was in a great mood, one of those days when the longer we spend together the better it gets.  In the afternoon Lucas was being especially hilarious, pleasing himself with simple things like removing and replacing the cap on the little insect-catcher.  After I had released the honeybee, spider, and lavender leaves, he would  look into the empty plastic container and say “No one’s in there!”  By the time I got the camera out he had settled down, and sometimes video just doesn’t do justice to Lucas’s ridiculous sense of humor.  But here you go anyway:

A day alone with Lucas also brings home the tough reality of caring for a child with acute special needs: your options are limited.  Krista has more experience with this since she spends more time with Lucas, and has been home alone various times over the last year especially (because of my work travel schedule).  She tends to be more adventurous, pushing Lucas to take excursions even when it’s just the two of them, fearlessly loading him and all his gear into the van for a trip downtown to the aquarium, or making plans to meet up with friends.  When she’s gone I’m inclined to hunker down at home with Lucas, since getting out and being social AND taking care of Lucas alone is complicated, to say the least.  We’re both fortunate to have a lot of support from family but nevertheless it’s tough.

Yesterday was so beautiful that Lucas and I couldn’t resist taking a walk in Seward Park, and then spending a few hours playing on the grass in the back yard.  The best part of the day, though, was lying down in bed together to watch the first half hour of “Finding Nemo.”  It’s really the only movie that Lucas will watch more than 5 minutes of, and last night he was enamored with the fact that it was Nemo and his dad swimming around together.  Each time there was a scene involving Nemo and Marlin Lucas would exclaim “Nemo and his daddy!” and then point right at my chest, with a huge smile on his face, and say “I’m a daddy too!” (he’s still got a little pronoun confusion).  By the time he fell asleep – and I took one look at the bombshell that was our house and decided to jump in bed rather than clean up – all I could think about was how damn happy it makes me to be Lucas’s dad.

(* Note: the movie that I ended up watching was Restrepo, an Afghanistan war documentary which I highly recommend, yet may seem like a strange choice given the feel-good, sentimental-parent mood I was in at the time.  Alas, it’s on my short list of “violent movies that Krista probably won’t watch with me”, and as we near the 11th anniversary of that war’s beginning it seems important to remind myself, in a visceral way,  how brutal and misguided war really is.  Perhaps it goes along with the sentimental parent thing after all, in so far as I long for Lucas to be able to live in a country that doesn’t dedicate a huge chunk of it’s shrinking budget to funding death and destruction… But I guess that’s another blog post.)

We’re thrilled to report that Lucas’s second, third, and fourth days of school were as successful as his first.  There was singing every day, which Lucas seems to be veru happy about.  Not to mention painting, drawing, blocks, magnets, and recess.  What could be better?

On Monday and Tuesday we drove Lucas to school and Krista hung around a lot at hist class, or wandered to a nearby coffee shop and worried about how Lucas was doing.  Then we picked him up and drove him home.  The great part of that arrangement was that at least one of us could spy on Lucas.  (Which we pitched to the staff as “helping.”)  More than once, Krista came into the classroom only to find Lucas sitting up in his chair in the middle of 11 other wound-up kids, shouting, running, and playing.  And, though it’s not like Lucas to enjoy new and unknown chaos, he looked like it was really enjoying it.

One of the best things about Lucas’s school is that it is a preschool-fifth grade elementary school that was built to include kids with physical disabilities.  So while there are lots of kids running around who have no disabilities, there are also plenty of kids with lots of extra gear, including another little girl with a tracheostomy in Lucas’s class.  And though Lucas is the only one with a wheelchair in his class, there are kids learning to drive power chairs in the halls, and all over the building storing you can find kid-sized walkers, standers and special seating devises in various corners and crannies.  The giant playground structure – the kind that would usually have lots of steps, ladders or ropes – is ramped and therefore totally Lucas-accessible.  We found him Tuesday afternoon up high, with his nurse pushing him over the “hanging bridge” part of the structure.  When we asked him later what he did at school, he just repeated, “We went over the bridge!”

The low point in the week for Lucas was the arrival of the school bus on Wednesday morning.  We had tried to talk it up to get him excited (predicting that it would be scary for him, and maybe us too).  The short bus pulled up, and everything was fine until the driver started to lower the wheelchair lift.  The noise and maybe protrusion of this huge contraption freaked Lucas out, and he shed huge, heartbreaking tears.  In the middle of it all, Krista asked the driver his name — Lucas likes knowing people’s names — and we learned it was Victor.  That was a turning point, maybe because one of Lucas’s favorite people in Washington DC was nurse Victor.  So through his tears, he signed the letter V and agreed to get on the lift.  By the time Victor has tied Lucas’s chair down in the bus, Lucas was calm and ready to go.

Lucas rides the bus with his nurses, so for better or for worse we can get up-to-date status text messages.  On Wednesday that meant learning that what should have been a 25 minute bus ride took almost an hour (Victor got lost) and that Lucas totally lost it at the end.  But the afternoon ride was quick, and by Thursday morning Victor had smoothed things out significantly.  The jury’s still out on whether or not we’ll keep sending Lucas on the bus before and after school, but the fact that we were able to let go and trust the driver, the nurse, and the universe with Lucas on a school bus felt like a major milestone in our lives as parents.

We’ve felt so incredibly proud of Lucas and his first week of school.  New experiences tend to scare him, so the fact that he was so open to so many new people and places was amazing.  Honestly, we feel very fortunate about his transition to school being so smooth thus far, especially given how much other special needs families often struggle with this transition.  We know that many challenges that still lay ahead, but for now it’s ok to bask in the goodness of the moment.

We want to thank you all so much for your love and support — via blog/facebook notes, phone calls and cheers — as we celebrate Lucas’s major achievement!

Burke and I have been talking for about two years now about adding a “resources” section to this blog, since we’ve learned so much about parenting and disability from books, magazines, films, friends, and other blogs.  But creating an exhaustive list of everything we’ve read has felt too daunting.  However, with Lucas napping and a good cup of coffee on hand, I’m finally going to take the plunge.

Or maybe I’ll wade my way in to this, since I’m not sure if I can do justice to the two books I’ve loved the most so far.  So for now I’ll just name then, and maybe I’ll say more later.  But you should just read them – they’re both memoirs by powerful women who are also awesome storytellers.  The first is Too Late to Die Young by Harriet McBryde Johnson.  The second is Knowing Jesse: A Mother’s Story of Grief, Grace, and Everyday Bliss by Marianne Leone.

The book I read most recently is No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro.  It is an extremely accessible history book about the disability rights movement, and since Shapiro is a journalist, he’s practiced at telling people’s stories.  The book focuses mostly on the activism of people with disabilities and their families in the 1960s-80s, though he knows his history going back much further.  Everyone who can’t already tell me when the ADA was passed, whether or not deafness is a disability, and what a CIL is should read this book.*

Because the author is so good at telling the stories of the activists, organizers, and rabble rousers who have made up the disability rights movement, the book feels very personal.  He tells the story of Ed Roberts, a student at UC Berkely who had had polio in the 1930s and then became a quadripalegic.  Roberts pushed the UC Berkley, and was the first quadripalegic admited, along with his iron lung.  Together with other students with disabilities, he organized for the right to live first on campus (they were only allowed to live in the campus hospital initially), and eventually created the first Center for Independent Living, a space where people with disabilities could hire their own attendants and make their own choices about how they would live.

The book tells the story of the emergence of disability as an identity, and especially as a source of pride in the 1980s.  But it also goes back through the ugly history in this country of isolating, institutionalizing, and trying to erase difference and disability.   There were major efforts to stop the use of American Sign Language through the 20th century, as hearing “experts” insisted that deaf people could be forced to assimilate through lip reading.  Shapiro traces the story of the suppression of ASL and its relatively recent reemergence as a common language for deaf people.  The author also tells the life story of his own friend with intellectual disabilities, Jim , who was institutionalized for nearly his whole life, from 1959-1992.   Shapiro tells about some of the so-called “behavior modification” techniques that Jim suffered – and certainly compounded his difficulty connecting and communicating – that were acceptable at the time.

The indignity and outright abuse thousands of people with disabilities have suffered in institutions was difficult to read.  Though most major state “mental institutions” were closed in the 1980s and 90s, today people with disabilities who cannot afford their own home and personal assistants are still forced into nursing homes and other smaller institutions – where they have little to no autonomy over their own bodies.

The fact that the book ends near Jim’s story is telling.  The disability rights movement of the 1960s-90s had epic achievements, both in terms of rights and shifting our national culture toward inclusion of people with disability.  As a parent, I am so grateful that Lucas was born now and not 50 or 100 years ago, when the dominant culture shamed families of children with disabilities.

The book also felt incredibly personal since we as a family benefit all the time from the work of these disability rights activists – every time we roll into a library, theater, zoo, aquarium, or up the elevator on the ferry.  I felt like I was reading the history of our people.  I cried through the chapter on the history of the wheelchair (though it was not written to be a tearjerker).  I felt so grateful for the people before us who demanded something better – lighter, faster, easier – than what medical supply companies said was possible.

But of course we still have a long way to go, and I’m dying to read the sequel to No Pity (if anyone has suggestions?).  But in many ways it is still being written.  The emerging disability justice movement is redefinining the goals of people with disabilities — no longer wanting just “independence” and equal access to a broken system, many disability activists are talking today more about “inter-dependence” and the need to address racial, economic, gender and all other forms of inequality and oppression that co-exist with ablism in our world today.  And at the same time, we have a major political and cultural fight on our hands to defend what many of these activists have won in the last half century.  I live in fear of the ideology of the extreme (and maybe even moderate) right — each person to her or himself.  You only deserve as much as you work.  On the contrary, I want to live in a society that provides for people what they need, whether that is wheel chair ramps or sign interpreters or personal assistants around the clock.  But with Social Security and Medicaid and many other forms of support for people with disabilities on the chopping block, the future of the victories of the disability rights movement feels uncertain.

But now I’m wading into the territory of writing a book rather than reviewing one!  So here’s one more review – a hopeful sequel to Jim’s story.

We just watched “Wretches and Jabberers,” a documentary about two men on the austism spectrum who communicate primarily through typing.  (If you have Netflix, you can see it on-demand there.)  They were both institutionalized as children, but now they have become advocates and spokespeople for people with intellectual disabilities.  The documentary follows them and their two assistants as they travel to meet other people with autism in Sri Lanka, Japan, and Finland.  The movie critics don’t seem to love it (based on my quick skimming of reviews) because it’s slow.  But the critics miss the whole point.  The “jabberers” in the title refers to the rest of us — the people to whom language comes so easily we overuse it.  Tracy and Larry work so hard to get each word out that they, and the people they meet in their travels, choose their words with precision, then type them out one slow letter at a time.   Tracy and Larry are poets, artists vividly describing their unique perspective and experience of being human.  It is absolutely worth it for us jabberers to sit quietly and listen.

Thanks so much to Carol Tyson for helping us find these and more books and resources.  She actually compiled a 10-page document for the bookstore at Busboys and Poets in DC – suggestions of books to add to the shelves – which we’ll figure out how to link to soon.  And thanks, too, to Lezlie Frye for also helping assemble our ongoing reading list.  It is good to have friends.

* Answers: the Americans with Disabilities Act (ADA) was passed in 1990 and signed into law by George HW Bush; some deaf people do consider deafness a disability, some do not; and Centers for Independent Living (CILs) are housing centers for people with disabilities where they are given support to live as independently as possible.