Lucas Camilo

It’s been nearly two weeks since our last post and there’s too much to recount.  One exciting thing is that Lucas got to meet two other kids with similar disabilities: a 4-year old with MTM whose family we’ve been hoping to connect with since moving to Seattle, and a 2-year with spinal muscular atrophy (SMA) whose family we met through an occupational therapist.  It must be fascinating for these kids to meet each other and see someone else with similar special needs.  In the first case, both Lucas and Trent have a trach and vent (which is not something you see every day), and in the other case he and Mari were facing each other in identical special needs chairs.  Lucas kept his cool, however, showing interest but also a bit of trepidation when we started getting them to play and interact.  We look forward to continuing to meet up with both families as well as others in the Seattle disability/special needs community.

We’ve also both been traveling: I was in New York 2 weeks ago and then to Chicago this last week, and Krista is in Portland now.  The three of us made the trip to Whidbey Island to spend time with my parents and check in on the Greenbank Farm Loganberry Festival (see photo), while also making various trips to the farmer’s market, Seward Park, Montlake play field for a picnic (on the wrong day, but we had fun anyway) as well as some local outdoor festivals.  We’re getting used to traveling in the new wheelchair van and its working out great.

Lucas loves the new van but he’s pretty ambivalent about going places.  In fact, he’ s been pretty moody overall lately, demonstrating regularly that his favorite word is “no”.  When he’s in one of those moods and we suggest doing something other than reading his current favorite book or listening to his current favorite song he almost  inevitably declines the invitation with a scornful “no!”  What’s humorous, and also frustrating, is that he often goes along with the proposal, eventually — either because we give him no choice or do enough coaxing to convince him — and then 9 out of 10 times he ends up having a blast.   Or perhaps that’s an exaggeration… at least 7 out of 10 times he ends up either having a blast or finding whatever we do tolerable enough to forget all about the initial, scornful chanting of “no!”

But we’re left perplexed at why he’s so insistent, initially, on not taking a bath (for example) when in fact one of his favorite things to do is splash around in his personal mini-tub with the family of sea creatures.  We have to go through the whole list of creatures before he finally agrees:

“But Octy the octopus will get in the tub with you…”

“NOoo!”…

“and Killy the Killer Whale”… ”

No!”

“and Wally the walrus…”

“No”

“and Nemo the Clownfish…”

Silence.

“And Humby the Humbolt penguin…”

“Yeah!”

I can’t help but wonder what goes on in the mind of a two-year old like Lucas that makes him rarely want to go outside or try anything new .  Is he just going through a personality stage of being a little stubborn, the usual “terrible twos?”  Or does it actually have to do with his muscle disease and discomfort that he feels, at least initially, when moving to a new situation?  Or perhaps — since resistance is almost assured every time we get ready to leave the house — it has to do with social anxiety, a creeping feeling that he’s different than other kids and a reluctance, therefore, to avoid facing tough situations.  The latter seems unlikely given the fact that he’s usually pretty agreeable when he meets new people, and as we’ve shown in videos and described over and over, he can be just about the happiest, goofiest, cleverest kid you could imagine… when he wants to be.

At this point, Lucas is most happy when laying on the couch reading books.  Which is all well and good, except that anyone would get tired reading the same book (or same 4 or 5 books) over and over with a kid.  Just ask Lucas’s grandparents, or his nurses (3 of them who spend only about 6-7 hours of waking time a week with him but nevertheless lose patience)… or his parents.

Every parent knows that there are tough things about taking care of a kid and we certainly don’t want to complain.  One need only peruse the majority of posts on this blog about the joys of being Lucas’s parents to know its good much more often than not.  Still, because Lucas can’t walk or move around by himself, and because his communication is still limited (even as it continues to improve), it’s tough some days to be his sole caregiver.  I  have days taking care of Lucas when I can’t help but wish that we had a TV and that he liked watching TV (neither of which is the case) so that we could just let him be on his own for an hour without us.  Alas, he’ll watch a youtube video for 5 minutes when we need a break but inevitably he gets bored and calls us back over, demanding more attention, more books.  The fact that he prefers books to TV is great, and yet…

I write all this during Lucas’s midday nap on Sunday.  Then, when he wakes up — as if to prove me wrong — he’s in a good mood and doesn’t bat an eye when I say we’re going to the lake.  We spend two hours walking the paths of Seward Park, lying down my the water looking at waves, ducks, doggies, trees… I get a few exclamation of “no!” but all-in-all it’s a great afternoon.  Once again I feel lucky to be Lucas’s dad… as he drifts off to sleep reading “Baby Dolphin’s First Day” for the 50th time this weekend.

Postscript – Here’s something else I was working on late last week and during Lucas’s naps this weekend: a website for Eagle Scouts returning their badges in protest of the Boy Scouts of America’s decision to continue it’s policy of excluding gay people.  Lucas gets a mention in my own letter so it seems relevant to this blog:
http://eaglebadges.tumblr.com/post/28355556567/july-25-2012-to-bob-mazzuca-chief-scout

Burke was in New York for a couple days for a friend’s wedding, so it was just Lucas and I (and nurses) here in Seattle for the weekend.

I’m tempted to give a full report of all our recent comings and goings – zoo, friends, parks, beaches, and walks along the lake.  But more significantly than what we’re doing is how happy I’ve been feeling these days.  Some of it is the sun and the outings and the adventure of exploring a new place.  But a lot of it is related to how well Lucas is doing, and what fun it is to be his mom.   Every day I get to explore something new with Lucas, and every day he blows my mind with something he’s figured out, wrapped his own brain around, or latched onto with gusto.  He makes me laugh many times a day – almost as often as Burke makes me laugh.  And he is so passionate about things.  Currently it’s Spanish, so as we walked along in the park yesterday I could hear him chanting to himself, “Red, rojo, yellow, amarillo, blue, azul.”  It gives him so much pleasure to learn, and he’s good at recruiting any willing bystanders to join him on his quest for knowledge.

And I love watching Burke and Lucas together.  Lucas still likes Daddy a little more than me, which I’m OK with.  It’s so fun to watch Lucas’s face lights up and he exclaims with such deep joy, “DADDY!” when Burke walks in the room.  And I love watching Burke hold Lucas gently as they dance to one more round of “Be My Penguin” (his current favorite song).  And then I love watching Lucas convince Burke to dance to the song one more time, even though Burke’s told him it’s the last time already.  Multiple times.

I write all this wishing I could bend time in such a way that I could reach out and hand this letter to myself back in the fall of 2009.  So many of you reading this were there with us, visiting and calling and feeling the intense fear and grief and love that came with Lucas’s entry into the world — I wish all of us could have known what we know now.   Because all of this was unfathomable at the time, at least to me.  A diagnosis of a lifelong disease seemed like a sentence — all the things our baby would never be able to do.  I could never have imagined that there would be days that I’d be grateful for MTM.  I hesitate to write those words, because I know it’s so hard to believe.  But this disease so profoundly affects how Lucas is in the world, and we love Lucas so much, that it feels like splitting impossibly fine hairs to separate loving Lucas from the disease.  Last night when Lucas slowly and carefully, using a precise hand-over-hand maneuver, turned his book around so I could see the words on the page he was “reading” without losing his place, I was overwhelmed with pride at his amazing talent, agility, smarts and determination.  I know all parents are proud of their kids, but I’m not sure I would ever have experienced this particular kind of swelling in my heart if it weren’t for disability.

On days like this (and it’s not every day, of course), I want to reach out to every family with a new MTM diagnosis and assure them that their life, too, will be absolutely joyous at times.  But I know that’s only partially helpful, since the hard, sad, frustrating and painful moments are real too.  And maybe more importantly than reassuring anyone else, I want to record this feeling because things in our life will change — we’ll face transitions, new doctors, inaccessible spaces, intense staring on the street… or nothing new at all.  My mood has been known to swing wildly of it’s own accord, so maybe next week I’ll be back here reading this to remember how fleeting any emotion, even the deepest ones, can be.

I may be extra reflective about how wonderful our life is right now because Lucas appeared to be sick last Monday.  He was listless in the morning, and by afternoon he was fully passed out.  We couldn’t get him to wake up from his long afternoon nap that basically kept going into the night.  He had a slight fever and looked so bedraggled.  So when he woke up looking better the next morning, we breathed a huge sigh of relief.  And we took him to the pediatrician to confirm that all was well.  We are so lucky to have Lucas almost constantly in good health, so the flicker of a reminder that his well-being is still delicate helped put all the good days in even greater relief.

Lots has happened in the last week and a half and we’re excited to finally get a chance to report and reflect.

First, we must acknowledge the significant victory of last week’s ruling by the Supreme Court to uphold most of the major aspects of the Affordable Care Act.  When it passed we wrote that ACA didn’t go far enough – and we still believe that to be true.  But we also understand just how much Lucas and many others like him have already benefited from the changes brought on by health care reform, and how devastating it would have been to see these things reversed.  We’re talking about the fact that the ACA makes it illegal for insurance companies to deny coverage to children with pre-existing conditions (something that will eventually be extended to others), as well as the elimination of life-time insurance caps.   The law also benefits people with disabilities by expanding coverage for mental health and home/community-based services, and by expanding access to Medicaid.  Indeed, many people are sleeping better following the Supreme Court decision, even as we must continue the fight for deeper reform.

On the same day as the health care decision was announced we signed the paperwork on the purchase of a used wheelchair van for Lucas.  Needless to say, buying a mobility vehicle is very different than getting a normal car, if only for the fact that the factory conversion basically doubles the price of an average mini-van.  In the end, the process was much easier than we would have thought, in part because we found a really solid used van — via a special needs list-serve — that has only 41,000 miles on it.  These vehicles are very specialized and this one seems to have been made for Lucas.  It has an easy fold-out ramp (rather than the more cumbersome power-lift which he’ll likely need later in life) and self-retracting straps that cinch his wheelchair in place.  It wouldn’t work for an adult but it’s perfect for Lucas and we’re grateful to the family for selling it at a reasonable price and passing it on in good condition.  We also know other families who have spent months raising money and struggling to find financing to be able to purchase a mobility vehicle.  So we’re feeling extremely lucky to have been able to put a down-payment on the van and secure a low-interest loan from our credit union.  And best of all… Lucas loves it!  He can now face forward and see out the front, and we don’t have to maneuver him awkwardly into a undersized car seat every time we go out.  Big progress!

Just when we thought the week couldn’t get any more momentous suddenly we found ourselves packing up for the first ever Burke-Krista trip without Lucas.  Since he was born Lucas had never spent more than 8 hours of daylight without at least one of his parents at his side.  But in May we secured coverage for respite care, opening the way for us to take an out-of-town trip.  Four different nurses spent time with Lucas over the course of about 48 hours.  Burke’s parents also played a huge role, hanging out with Lucas, bringing Bruno to play fetch, reading countless books, countless times.  They also sent text messages and called to give frequent updates from the home front.  Perhaps surprisingly, we weren’t all that nervous, knowing that Lucas was in good hands… and that, not as surprisingly, Lucas didn’t seem to miss us that much.  According to one nurse, “I hate to say this but he didn’t mention you all day long and seemed completely content.”  Our feelings weren’t hurt in the least; to the contrary, we were extremely grateful for competent caregivers and tireless grandparents, confident that Lucas was in good hands the entire time we were gone.

Oh, and did we mention it was an amazing trip?  Three beautiful hikes in the North Cascades, returning to our northwest roots of spectacular mountains, rivers and waterfalls (check out a few pictures here.)  Our recent good fortunes landed us in a cozy little cabin on the banks of the Skykomish river in the town of Index — courtesy of our generous neighbors Barbara and Sara.  Thanks to everyone for making it possible!

Finally, upon return we linked up with our old friends Daniella and Gabe, along with their son Rafi, who stayed in our basement until leaving to go back to Oakland yesterday.  Lucas and Rafi hadn’t seen each other for over a year, and their second meeting didn’t go quite as well as their first (check out this funny video of the boys in June 2010) as Rafi’s high energy was tough for a guarded Lucas to handle.  But this time they hit it off, as the photos below demonstrate.  From kisses to brushing their teeth together, Rafi and Lucas — despite being about as different as a couple 2-year olds could be — became friends over the four days they were together.  Daniella and Gabe were also amazing with Lucas, patiently figuring out which book he was asking for and reading them over and over again.  And to top it all off, a few friends joined us for a fun 4th of July barbecue on Wednesday.  What a week!!

Today we went to the Seattle City Council to testify in favor of the Caring Across Generations resolution which we mentioned in our last post as part of a broader campaign to push for better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.

Lucas took an early nap and since his nurse was out sick for the day we decided to bring him downtown for the hearing.  The three of us joined over a hundred people from various organizations who were there to wave flags and hold up thousands of postcards signed in favor of the resolution.  Lucas was in great spirits too – he got his own sticker and repeated over and over throughout the testimony “vote yes!”  He also brought along his Elmo sticker book in case they ran out of Vote Yes stickers.

Here’s what we said to the council:

We’re here today to talk about caregiving and our son Lucas.  He was born in 2009 with a rare neuromuscular disease called myotubular myopathy which causes him to have extremely low muscle tone.  He has a tracheostomy, uses a ventilator to help him breath, and receives all of his nutrition through a g-tube.  He’s also an amazing, funny and loving kid, but his medically fragile condition makes his life – and by extension our lives – very complicated.

Caregivers have played an important role in our lives over the last 2 ½ years.  Because of his complex needs and the risk of respiratory failure Lucas needs one of us or a vent-certified nurse to be with him at all times.  It’s hard to imagine not having home nursing and yet its been a struggle to get coverage for it– either through private insurance or support from the state – as well as other services that Lucas relies on.  Meanwhile, in our experience we have seen that the amazing nurses that help care for Lucas do not always receive health care benefits themselves, or a wage that properly values the work that they do.

We hope to someday live in a world where kids like Lucas get the services they need while at the same time the dedicated individuals who do the day-to-day caregiving for people with disabilities are valued and properly compensated.  The Caring Across Generations resolution is one step in the right direction, and we will continue to be part of the campaign for state and federal legislation that both ensures resources for long-term care and brings dignity to caregivers.  Thank you.

Congratulations to Washington CAN!, Caring Across Generations, SEIU, our friend Susie (the lead organizer on the campaign), and everyone else involved!

Big news: Lucas drove himself around our house yesterday!  It was a strange moment – at once monumental and anti-climactic.

Perhaps we should give a little background.  For families of kids who don’t walk, the first time your kid drives around in a power wheelchair is the semi-equivalent to your child’s “first steps.”  It’s something that marks the beginning of a radically different orientation to the world: the ability to go and check things out, to choose where and when and how fast you get there.  Like “first steps,” it’s something you know is coming, that other families (or in our case, therapists) talk it up for months before the occasion.

But, unlike the magical “first steps” that just happen, the first drive is an extremely planned and facilitated undertaking – usually under the supervision of multiple therapists and professionals, often in an institution that acts as wheelchair vendor.  For us it’s been a years-long process that included moving into a wheelchair accessible home, researching the market to understand what chairs might work for Lucas, finding the professionals that can help us fit Lucas to a chair, working with our insurance company to ensure that it will be covered, looking for a wheelchair accessible van, etc, etc.

Three weeks ago we had our first try when a vendor brought a power chair to the house for Lucas to try.  Like many things he encounters for the first time, Lucas absolutely hated it.  He did fine sitting in the chair when it was turned off, but the minute we tried to move it he threw a fit.  We sighed and imagined we were in for a summer of slowly, slowly acclimating Lucas to power chairs so that maybe by August or September he’d be willing to try driving.

The vendor called last week to say he’d found a loaner chair for us.  We planned a time when we both could be here to learn how to use it so that, when Lucas was ready, we’d be able to help him try.   Kevin came with a scrappy looking chair — a kid-sized seat literally strapped to a giant adult-sized base.  It looks funny and awkward, but we figured we’d put Lucas in it just long enough to measure where to put the controls so he’d be able to reach them.

We’ve found that calling something the “Special Lucas —” makes it more appealing (the hammock outside our house is the “Special Lucas Swing,” the newest stationary seating devise is the “Special Lucas Chair”, etc.) so we told him he was going to sit up in the “Special Lucas Car.”  He was not immediately sold, but he repeated slowly, “special… Lucas… car.”

And, miracle of miracles, when he got up in the chair this time, Lucas liked it.  He smiled and recited his favorite book while Kevin adjusted the joystick.  Then – surprise again! – he touched the joystick (at this point the power was still off).  When all the adjustments were made, we figured we’d push our luck.  We turned the chair on and let Lucas touch the controls again.  The chair gave a small lurch, and Lucas was unfazed.  He hit it again, and another small lurch.  And then he said “hummingbird!”

So we helped him drive into the kitchen to look out at the hummingbird feeder.  Then we suggested going outside (since it took just 20 seconds of indoor driving to put the first dent in the wall), and we all went through the door, over the ramp, and ended up playing stop-and-go on the sidewalk.  Lucas did great — he was pretty clumsy, but so were we trying to figure out how to steer with a hyper-sensitive control system.

There we were on a beautiful afternoon, standing in front of Lucas calling “come to Daddy!”  He tried, slowly motoring forward and diagonally and then around in a tight circle.  And before we could revel in the glory of it all, Lucas said he was done.  We helped him drive back inside, took him out of the chair, and turned it over to Kevin for a few minor adjustments.  And then it was time for dinner, and Lucas urgently needed to get back to his current favorite book.

In the last post we mentioned how great it is that Lucas is doing well because it leaves us energy for “other aspects of the transition.”  Well, here’s the blog post about some of those other things.

I’m tempted to just post here our forty plus pages of google doc notes that Burke and I created to track and communicate with each other everything related to the move.  Or share a link to the online database we created just to keep track of the professionals we need to talk to in Seattle about Lucas’s life.  There are the nurses, social workers, home care administrators, therapists, evaluators (Lucas is constantly being evaluated), respiratory therapists, new doctors, advocates, equipment repair people and more.  I’m not really complaining – when you need help, it’s good to have a long list of people who might be helpful.  But the reality is that I wish we didn’t have to deal with all these people.  There are days when it feels like we need nurses in our home to take care of Lucas just so we have the time to talk to other people about coordinating his care.

Probably the single most difficult meeting we’ve had was an appointment with a new pulmonologist when we had been here just three days.  She was young and overly ambitious, and she immediately wanted to make major changes to Lucas’s vent settings.  She went so far as to suggest we admit him to the hospital for a few days so she could “play with his settings and observe him.”  The act of holding ourselves to our seats and acting polite as we declined her totally ludicrous proposal took about all the energy we could muster.   Or really, more than I could muster.  I came home and got in bed and cried.  It felt like there’s just so much in flux right now – the idea that she’d be willing to risk Lucas’s short term health in order to better understand his vent settings felt like too much.  We both suddenly missed our doctors in DC who believed that if Lucas was doing as well as he possibly could be doing, why change anything?  And who trusted us.  And who noticed that we do most of his care-giving and deserve a little bit of credit for how well he’s doing.  Deserve at least a pat on the back for how well we’re all doing.

And for the past few weeks there really have been just so many new people to meet and equipment to learn.  We got a new pulse/oxygen monitor that burned Lucas’s toe and alarmed unnecessarily in the night.  There are all the people that come to evaluate Lucas – measuring and ranking and quantifying Lucas’s abilities and disabilities, a totally messed up process that is a necessary loophole to get things that are sometimes only marginally helpful.  For example, Lucas is going through many evaluation to get us Early Intervention services, which will provide therapies for him that our insurance would pay for anyway.  So mostly what we get out of the many hours of evaluations and phone calls and paperwork is another well-meaning social worker in our life.

The biggest time suck for us over the past few weeks has been the struggle to get insurance to pay for Lucas’s nursing.  It’s hard to know how much to get into here, because the saga is extremely long and complicated.  We’re fighting with our insurance, which is part of an industry that has billions of dollars which it mobilizes to justifying denying necessary services.  I used to naively think that “medically necessary” meant insurance had to pay for it.  Nope.  I’m sure many people reading this will laugh – anyone who’s had serious health issues knows that need has little (nothing?) to do with insurance actually covering something.

We’ve been fortunate to meet some incredible people in this fight – doctors and social workers and now a killer lawyer who are all going above and beyond for us in this fight.  The political moment – with the Supreme Court hearing arguments that it is un-American to try to fix this broken system – combined with the fact that we have to waste our time fighting this rather than hanging out with Lucas, feels like insult on top of injury.  Possibly the most painful part of this is knowing that we have so many resources, and that most families living with severe disabilities have to do this with far less money, time, and space than we have.

So of course we try to find ways to make our fight useful to more people than just Lucas.  We found out that in Seattle, the main home health supply company that provides ventilators to kids does not provide the small, travel lithium-ion battery that we have.  Here they give families what we call the “boat battery” – a gigantic battery that probably weighs 10-20 times more than the small one.   When they tried to hand us the boat battery, I yelled at the (quite shocked) nice home equipment ladies.  They told us they can’t get the lithium batteries, but that simply can’t be true, since most of the MTM kids we know have them.  Burke was out (we’re good at taking turns being the “reasonable” one when the other is too upset to talk), so I just snapped.  “Do you have any idea how much more mobile we became when we got the lithium battery?!  This is a mobility issue for all families!”  They said they’d see if they could find a way to get us a battery – maybe they’d look for a donated one for us.  I said no.  Not just for us.  Everyone with a vent needs this battery.  They need to figure out how to make it happen for everyone.

On top of the stress of all the meetings and appointments and evaluations is the fact that we’ve uprooted ourselves from our friends and community in DC.  I miss having an amazing number of friends who I knew I could call when we were tired who would come play with Lucas, starting with Sha just up the street.  Its not that we even called for the help all that often, but just knowing it was available turns out to have been a major source of comfort.  Last weekend, with Burke gone and the rain pouring down and all this mess of services to navigate, I longed to be back in DC close to our friends there.  And we weren’t even alone for 24 hours – Ashley brought Lucas’s cousins over in the evening and we got some company and a change of pace for a bit.

And of course there are still all the great things about being here.  New friends are already welcoming us in wonderful ways – dinner with Chris’s family, then dinner with CISPES friends, and then two other sets of friends have called to tell us they’re on their way over with food.  It’s also nice to have Burke’s parents close and stopping by to read Lucas his favorite books and join us for excursions to the zoo or aquarium.  So we’re doing great – still endlessly grateful for all our family and friends’ love and support.  But since there are the darker days when it’s just the three of us and our long lists of calls to make, emails to return, meetings to set up, and people we don’t want to need necessarily in our lives… we wanted to find a way to try to write about those moments, too.

It’s been an up and down holiday season for the Stans-Hanson family.  We’ve had some highlights, like the Christmas day walk in the park and the visit by Krista’s family (Burke’s parents arrives tomorrow).  But we’ve also had some big challenges and hard moments.

Burke was gone in mid-December visiting family in Seattle and then doing video at an immigrant rights conference in Montgomery.  In addition to a good time with family he had a few different job interviews while he was in Seattle.  One possibility with a great organization got us particularly excited, even thinking that our move to the Northwest could be imminent if it worked out; alas, it was not to be as they offered the job to someone else.  There are a couple faint possibilities still out there but this setback has us thinking that we’ll have to push back our timeline once again.  Burke is finding that it’s not easy to get the kind of job he wants in Seattle so we’re also getting creative about other possibilities.

We’ve had some beautiful and unseasonably warm days in DC recently, but in general we have felt the weight of winter days that have grown cold and short, with darkness descending all too early.  Indeed, sometimes living in a relatively small basement apartment can start to feel isolating, especially in the depths of winter, and especially given the challenge of Lucas’s health issues.  Over the past year venturing out of the house has gotten easier for us – we’ve become more adept at packing up Lucas and all his accessories, and Lucas is stronger – but on 35 degree days there’s not a lot of allure to go out walking.  With a typically developing kid it would be easy for one of us to jump in the car and zip to a museum, or a cafe, or the library… anywhere, really, to get a change of scenery.  But of course with Lucas such trip involves a lot of planning and preparation, especially because he still needs both of us (or one of us and a nurse) for any major journey out of the house.   Packing up Lucas and his wheelchair, ventilator, suction machine, and emergency bag for a trip, then checking that all the supplies are stocked in the various bags has all become second-nature for us.   But it’s still complicated and time-consuming and all that stuff limits your options of where to go and how long to stay.  So if one of us is working then the other one most likely is staying put in the house with Lucas, hanging out in the same 24 square feet of our living room each day, working hard to make it a fun and engaging place for Lucas.

So despite a few good walks and a party at our friends’ Max and Jess’s place on Sunday, the holidays have done a lot to remind us of our limits.  Flying to the other coast to spend Christmas with our extended families simply isn’t an option, nor is a vacation in a warm place (unless we decide to take a long train ride to Florida).  And now that Lucas’s favorite nurse Florence has taken a new job at a hospital, our options for occasional escapes closer to home are even further limited.  (We’re actually still in denial about Florence leaving so we’re not going to say anything more about that for now.)  Ultimately the winter darkness, combined with the cramped spaces of our apartment, can make the rest of the world feel painfully out of reach.

We don’t mean to complain, and in fact we feel immensely lucky every day to have Lucas with us, and awed by all that he does.  We tend to be pretty positive people (as you can tell by the tone of most of our blog posts) and so we’re also doing a lot of things to make the holidays fun for us and Lucas.  Like making our own refrigerator magnets.  And singing the “birdie song” with Lucas ten times a day while dancing around the living room.  And sitting down to talk about all the amazing organizations that we donated money to over the last week.

Lucas was also made famous on the radio recently… or at least on a podcast :)  Burke helps with a website called The Fight Back and a few weeks ago his friend Pete interviewed Lucas’s favorite radical children’s songwriter, David Rovics. Check out the full post here, and listen to the section preceded by a Lucas-inspired question below:

It’s been a full week and a half since we last wrote on the blog. Lucas has been out a lot lately, to a local library for a Halloween event, back to Occupy DC (Halloween festivities again) and then last night to a CISPES speaking event at St. Stephen’s. Over the past few weeks there have been many beautiful, crisp, fall days and Lucas has being outside, swinging on his homemade tree swing, sitting in the back yard, talking walks around the neighborhood, or hopping in the car for longer journeys.

Sunday’s “Occupy Halloween” gathering at the McPherson Square encampment was a lot of fun for all of us.  A bunch of families with kids showed up – on a sunny, 50 degree afternoon, the day after DC’s first snow of the year! – and we sat out on tarps decorating mini-pumpkins, reading books, and chatting with friends. Despite the fact that Lucas couldn’t participate in some of the activities, the gathering felt inclusive, and indeed Lucas wasn’t the only kid with special needs: our friends Dan and Jaime came with their daughter Claire who also uses a wheelchair, and one of the organizers of the event has a non-verbal daughter with autism. Lucas especially enjoyed reading books with Nadeem, the son of Rami and Crystal who was excited to hang out with him. Burke had to leave early so Sha accompanied Krista and Lucas back to the house after a couple of hours in the park.

The kids’ party at the Petworth Library last Friday was a little more difficult. As promised, the space was accessible for a child in a wheelchair but getting around wasn’t easy, especially with so many little kids running everywhere. Lucas got all done up in his piggy costume which was pretty cute, and there were other farm animals as well. Still, for whatever reason Lucas just didn’t seem that happy to be there. He got upset and cried a few times, and was generally spaced out most of the time, even as some kids came up and tried to engage with him. It was hard to see, and made harder when the time came to trick-or-treat on the two upper levels of the library. We took the elevator up from the basement – after a long wait – only to find that the rest of the kids had already finished on that floor and moved to the next. That portion of the event was clearly set up for kids who run up and down stairs and ultimately we skipped the next level of trick-or-treating and waited a long time again to finally return in the elevator to the gathering below.

There’s a lot we could speculate about why Lucas didn’t seem to be enjoying the library. The thick, heavy piggy costume made it hard for him to move his arms and sign, and that in turn limited his participation. And the general atmosphere of kids running around everywhere was probably overwhelming. Was Lucas sad not to be more a part of it? It’s hard to say… perhaps he was just tired, but the event made us think about some of the challenges that we’ll continue to face when we bring Lucas to children’s activities set up primarily for typically developing kids.