Lucas Camilo

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:

[Note: if you signed up to receive updates when we post to Lucas’s blog you may have noticed that last time it sent out like 6 different emails.  Sorry about that!  It’s fixed now :) ]

Fall is in full swing and lots it’s going on in our world that we haven’t had time to write about.  We bought a house, for example.  It’s a block away from where we currently live and has a great single floor layout for a kid in a wheelchair (and a basement that we’re hoping to rent to a friend eventually) – so that’s exciting!  Lucas calls it “the house with the birds on the walls” or “the house where we speak with a British accent.”  The former is probably self-explanatory; the latter stems from the fact that our real estate agent is British and Lucas REALLY likes speaking with a British accent these days, so having an authentic Brit to do it with made the house quite memorable.

In other good news, Lucas has continued to do well in kindergarten, going from a half day to when he first returned to 2/3 of a day now.  His leg is all but healed but he still has a removable splint on it, and we’re going to wait until we get the go-ahead from the orthopedic specialist (hopefully next week) to remove the splint entirely before trying a full day at school.  The other challenge is that the school still has not provided Lucas with a one-to-one aide, something which is required under his Individualized Education Program, or IEP.  Lucas is accompanied to school by his nurse but she can’t be on top of his health needs (which includes feeding him through the g-tube, changing, etc) and also work with him on academic matters.  At least there is someone coming into the class occasionally to give her bathroom breaks!  Krista put some pressure on the school last week and finally they are moving ahead on hiring a permanent aide for Lucas.  We’ll report more on his life at school when we have more time; for now, its fair to say that despite some challenges, it’s encouraging to see enjoying it and building up stamina for the longer days.

This weekend Krista is at a yoga training and so Burke and Lucas are getting out for some fun activities. He’s currently taking a long nap (something he doesn’t do as much during the week these days since school takes him right through his old nap time.)  Earlier today we made it to Lucas’s cousin’s soccer game and we’re happy to report they trounced their opponent – maintaining good sportsmanship, of course.   Here are a couple shots from the game:

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.

We just sent a letter out to friends and neighbors asking for support in pressuring the good people at the parks department to make some fantastically accessible modifications to our neighborhood park.  (If you missed the previous post about this, see our May 28 post.)  We thought we’d share the letter here.  Of course many of you who read this aren’t in Seattle, so the first and third action items don’t really apply to you.  But action item number two —  learning and talking and helping spread the word about accessibility and inclusiveness — is important to us, and it will impact Lucas’s generation in wonderful ways.  Anyway, here’s that letter.

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Dear friends,

Thank you so much for your interest in helping make Seattle parks, and particularly Mt. Baker park, a more welcoming place to people with disabilities!  We’ve felt really loved and supported by the number of friends and neighbors who have come forward offering to help.  A lot of you have asked us how you can help encourage the Parks Department to make the planned renovations include the best possible access for Lucas and all the other park users who move in unique ways.  (If this is news to you, I can send you background.  The basics are this: the city has about $550,000 allocated to make renovations, some specifically about accessibility.  We’d like to see them make the park very accessible, not just minimally.)  Here are some things you can do!

(1) Write a letter to the parks department expressing your support for the most inclusive kinds of renovations possible to Mt Baker park. (More information and a sample letter is below.)  If they stick to the minimal accessibility renovations required by law, it is likely that Lucas and other wheelchair users will still not be able to play with peers at the park.  We’d like them to be creative and use their relatively large budget to make a few real changes, not just the minimum.

(2) Talk to friends and neighbors about the value of fully inclusive, accessible parks.  I know that before Lucas came into my life, I didn’t think a lot about the kinds of surfaces I was walking on.  Or even scoffed at paved surfaces in nature – gravel is more natural, I thought!  But for a wheelchair user with very low muscle tone, bumpy surfaces are extremely hard on the body.  And the addition of a couple ramps onto play equipment would mean that wheelchair users – and others who have trouble with stairs – could get up on equipment and play with friends or family or strangers.  There’s a good article about this from another parent in a recent NYT parenting blog.  And this inclusion is a benefit to all.  Young children are generally very open to difference.  It will benefit all of us if disabled and non-disabled children can play together starting from very little.  If you meet others who have disabilities or access issues that we can include in our ideas for the parks, please put them in touch with us.

(3) Come to the next Mt Baker Parks meeting to express your support for a fully inclusive park!  The meeting will be Thursday, August 7 at 6:30 pm.  http://www.seattle.gov/parks/projects/mt_baker/

And of course please be in touch with us if you have ideas for other ways to make the park welcoming to all people.  Our dream is to have awesome, welcoming public spaces for all people.  Disability is one consideration, but we don’t want to overlook other communities’ needs.

Thank you for reading this far!  Here is the information for crafting a letter of support.   If you have any questions, please be in touch.

Thanks,

Krista Hanson (in collaboration with Burke and Lucas!)

206-331-4425

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Send your emails or direct your calls to these two folks at the Seattle Parks Department:

 

* Mr Jeron Gates, Acting Planning and Development Specialist, (206) 684-0998 Jeron.Gates@seattle.gov

* Ms. Shwu-Jen Hwang, Landscape Architect, (206) 684-0805 shwu-jen.hwang@seattle.gov

(I would love a copy of the letter, but maybe use bcc or forward me a copy after you sent the email.  My email is kristaleehanson@gmail.com.)

 

Please craft a letter in your own language if you have time!  If you’re not a Mt Baker resident, change that to say “Seattle”.  Or if you or a family member have a disability and want to include that, great.  Or give another reason you have an interest in accessible parks in Seattle.  Here is a rough draft, with some talking points you might use:

 

Dear Mr. Gates and Ms. Hwang,

I am writing to express my support for the accessibility renovations to Mt. Baker Park.  I appreciate that the parks department is prioritizing making the park more accessible to users with disabilities.

As a resident of Mt. Baker, I would like to see the park be accessible to as many people as possible, going beyond basic ADA requirements.  Specifically, I would like to see:

–       Paved or hard-packed rubber pathways from sidewalks to all the play equipment;

–       Hard-packed rubber surfaces as at least part of the surface under play equipment (Seward Park play structure is an example of combined rubber and wood-chip surfacing).  Wood chips alone do not work for wheelchairs, walkers, canes, etc.;

–       Ramps up onto the play equipment so that people who cannot climb stairs can play with family, friends, and peers;

–       Accessible swings, including a yellow bucket swing (good for children with disabilities and fun for all children) and a drive-on swing for wheelchair users;

–       Components on the play structures that are designed specifically for wheelchair users and non-disabled children to play together.  One example of this is the sway-fun glider: http://www.youtube.com/watch?v=u-S3p4h1poo.

–       Collaborate with local architects and designers who have made beautiful, accessible playgrounds in the Seattle area.  One example is Miner’s Corner in Bothell, the first universally accessible park in Snohomish County: http://snohomishcountywa.gov/Facilities/Facility/Details/Miners-Corner-57.  Another example is the Seattle Children’s Playgarden, http://www.childrensplaygarden.org/.

Can you please let me know what your plans are for the park?  Will the new design include these features?

Sincerely,

[your name and neighborhood/city]

Spring has brought a lot of exciting energy and adventure to our lives, and we’ve been feeling incredibly grateful for all our good health and ability to get out.   Just in the past three weeks we’ve gone to the Arboretum, the zoo, the aquarium, three neighborhood libraries, Seward Park, Mother’s Day brunch with all the family… And just over Memorial Day weekend we took Lucas to Folklife, Seattle’s annual folk music festival, and then out to explore Vashon Island.  We recently got an email from a family with a baby who just made it through his first winter with MTM, and they described reading about our travels like “science fiction.”  And I sometimes have to pinch myself — I could never have imagined this much getting out of the house for our lives a few years ago.

There’s so much more to say about all that – including all the challenges and less than picture-perfect moments – but for now I want to tell the specific story of the city park near our home that is slated for upgrades.

There’s a beautiful, huge green park near our house, and recently a sign went up announcing plans for renovations, including increased access.  When I read ADA — Americans with Disabilities Act — my heart jumped.  This could mean more access FOR LUCAS to our neighborhood park and playground.

Here’s a brief description of the park from our perspective: a huge, beautiful lawn lined with giant trees.  It’s a field with grass – not a super smooth lawn – so it’s bumpy and slow going for Lucas.  If we get to the park and see someone on the other side of the lawn, we don’t bother trying to get over to them — they’ll likely be gone by the time we get there.  But we use the lawn nonetheless.  We throw blankets out and lie down and look up at the trees, the sky, and the crows.  We have tried flying a kite, and we sometimes turn it into a baseball field, with Lucas stationary (“pitching”), and everyone else fielding the balls.  This weekend we were there, and Lucas walked Mona, with patient help from friends Earl, Winslow, and Heidi (see picture).

Along the west side of the lawn there is a zip line, play equipment, and a swing set.  We only go to the play structures when we have friends with kids who want to play, but Lucas can’t get onto or even roll up to any of the equipment because of the wood chips around it all.  There is one set of monkey-bars-like things that has a hard rubber surface underneath, and this is by far the best part for Lucas.  If his cousins crawl up, run under, or daddy lies on top of the monkey bars, Lucas can roll up to or under or around the structure.  He can at least get close enough to be part of the action for a minute.  Mostly we just use the paved path that skirts the edge of the park and takes us down to the lake.

So when I saw the sign go up, super-disability-mom fantasies got the best of me.  I emailed the project manager and started to research the most accessible parks in the country.  I polled other MTM families and put together a list of things that would make the park better for wheel-chair users, from what I considered minor improvements (flat, rubber surfaces to wheel along) to dream-come-true ideas (a giant, 12-person swing that kids can walk or wheel onto and play together), and I brought that list to the meeting.  My heart sunk when we started to talk.  I realized that their vision of “accessible” meant meeting some minimum standards: a gravel-packed path from the handicapped parking space to the swings.  Maybe another short path.  Smaller steps on the play equipment.  (“Stairs!?” you might think, like I did.  I think they were conflating ADA accessibility minimums with other safety standards.)  I tried to be inspiring, describing Lucas, telling them I cared about access for all park users and that I would help find other people with access needs to give input, as well.  The project manager was very warm and receptive.  But the main architect just kept asking me if Lucas enjoys the zip line (she asked so many times I almost barked at her), and so when I handed the team my list of ideas I was already feeling pretty deflated.

Jump ahead to the community meeting to give input on the park one week later.  We decided not to rally all the pro-Lucas, pro-access troops we could, but maybe that was a mistake.  As one neighbor observed in his minutes from the meeting, the sentiment in the room was “overwhelmingly conservative.”  People in our neighborhood – at least the people who attended the meeting – love the park exactly as it is.  There were valid concerns about changes that might not be improvements.  Don’t cut down any trees; don’t sacrifice learning and adventure for too much safety; don’t bring in fancy playground toys when kids love the simple structures; don’t cover the playground in plastic.  I get all that.  I was doing OK.

And then one parent spoke up asking them to stop the train on the renovations and please not change anything.  He actually said “I’ve never heard any parent say they had a bad day at the park.”  And then I started to tremble.  Because suddenly someone was verbally erasing my experience of the park.  We have awesome days in the park, but we also have days that are incredibly painful.  We can see all the kids playing together, and their parents chatting along the edge of the play equipment.  On days when it has rained a lot recently, I couldn’t push Lucas through the mud to reach them even if I tried.  And then, what would be the point of reaching the inaccessible play equipment anyway?

There are some fabulous parents go out of their way to bring their kids over to meet Lucas, but plenty of parents don’t.  I don’t mind that — we don’t need everyone coming over to see us.  Sometimes we just want to be alone (as in, just me, Burke, Lucas, and a small bug in a container.)  But there are days we wish so badly that Lucas could play with the other kids that it hurts.

Of course hard packed surfaces and giant gliders that pack kids onto benches next to kids in wheelchairs won’t change everything.  But it will give Lucas the option of playing with kids his age at the playground.  It doesn’t seem like that much to ask, especially given that the city has a pretty big budget to do it.

I tried to breath before raising my hand, but I was still quite emotional when I spoke about the fact that there are really hard days for us at the park.  And that we like the idea of access.  I stressed the importance of hard-packed surfaces as a key piece of Lucas’s ability to be in the play area, in part because the city architect had said to me multiple times that it would be too expensive, so we needed community back-up on this being a priority.  And then I listened.

For a while no one else spoke up on behalf of access.  Just “don’t try to make the zip line less fun by taking out the incline” and “keep our playground natural.”  Finally one person proposed a compromise — the city should focus its funds on some access trails and not on changing play equipment.  But then there was a lot more discussion of the zip line, including one neighbor contending that she and her family moved to the neighborhood just for the zip line.

For what it’s worth, I’ve been down the zip line and it is fun.  And Lucas’s cousins think its pretty cool.  We support keeping the zip line.  But it’s hard for me to imagine what its like to come to a community meeting with a passion for the playground and, after seeing Lucas there and hearing about his needs, staying silent about access and only speaking out about love for the status quo.  Or maybe not.  Maybe that would have been me if my life had been different, not out of ill-will, but not knowing how to talk about disability and access.  God knows I’ve learned a lot of language in the last four years.  But we’re looking for allies, and I wish more of those neighbors were interested in the experiences of families other than just their own – ours and plenty of others who weren’t in the room.  And of course we need to listen to the other families’ concerns.  I hadn’t even thought about the fact that “safety” in the US means preventing lawsuits, so fun things like natural landscapes, or gravel to dig in, get taken away.

The heated community playground input meeting adjourned on a lighter note (the city landscape architect and project manager committed to going strait over to the zip line to experience it themselves.)    And some neighbors who know us came up to me afterward and asked if there is anything they can do to help us advocate for access.  And of course the answer is yes!  I’m going to amend the letter I submitted to the city planner and give it out to neighbors as a list of things to write to the city to ask for.  Because the reality is that at this point, even the minimum hope for hard rubber surfaces will be a big victory.

——————–

Here is the letter I submitted:

May 15, 2014

To Mr. Jeron Gates and the Seattle Parks Department,

As a neighbor in the Mt Baker neighborhood and parent of a child with disability, I am excited to help with the visioning and planning of the accessibility improvements to our park.

Over the last month I have paid attention to the way our use of the park is currently limited and asked parents in other parts of the country who have taken their children to accessible playgrounds for their input.  Here are some of my initial ideas. 

Accessibility additions that would improve Mt Baker Park and playground for wheelchair users:

(1) Follow principles of universal design, taking into account usability of the park by all people including right and left handed people, people with differences in sensory processing, different ways of moving, etc.

(2) Hard surfaces (like recycled rubber) under all equipment.  No bark, mulch or other soft surfaces.

(3) Paved pathways from sidewalks and walkways to the play equipment.

(4) Paved pathway around the park – circling the whole upper field and with access to the stream lower down the park.

(5) Wheelchair ramps onto play structures and accessible bridges between large pieces of equipment.

(6) Sway Fun Glider – equipment that allows wheelchair users and non-disabled children to play together on the same piece of equipment.

(7) Drive-on wheelchair swing and other play equipment that incorporates wheelchair users.

(8) Shade – not specific to wheelchair users, but many people are affected by sun and rain. 

Many of these improvements are specific to wheelchair users, which is my area of knowledge.  However, I am interested in the park being as welcoming and inclusive as possible to all users, so I would be happy to help gather more people with other needs to help give input into the design.

 A few resources I’ve found with great accessible playgrounds include:

• Shane’s Inspiration, creating social inclusion for children with disabilities through the vehicle of inclusive playgrounds and programs: http://www.shanesinspiration.org/playgrounds/

• Aiden’s Place, a fully-accessible disabled children’s playground or Universally Accessible Playground (UAP) is part of the Los Angeles Parks Department. http://www.laparks.org/dos/playground/facility/westwoodUAPRC.htm

• Accessible Playgrounds, a resources on everything from principles of universal design to vendors of accessible equipment: http://www.accessibleplayground.net/2009/09/21/the-7-principles-universal-design/

• 30 Most Accessible and Inclusive Playgrounds: http://www.special-education-degree.net/30-most-impressive-accessible-and-inclusive-playgrounds/

• Locally: Project Orca Playground is a parent and community-driven project to update the Orca K-8 playground.  The school has two classrooms of high-needs special ed students, so the planning is including thinking about accessibility for those students.  Columbia City architects Johnson Southerland are working on the design. https://www.facebook.com/ProjectOrcaPlayground

Thank you for your work and commitment to making the park accessible to all users!  Please let me know how I can continue to help.

Sincerely,

Krista Hanson

We’ve had a ton going on recently.  Among other excitement, Lucas had a visit from Grandma Susan, we went to a Pete Seeger all-ages sing-along, we’ve toured kindergartens, and we had a long weekend visit from our Oakland friends Daniella, Gabe, and Rafi.

Did I say kindergarten??!!  Yes, Lucas turns five this summer, meaning this fall we’ll be parents to a kindergartner.  Seattle schools does school placement in March, so we spent a good part of February figuring out how to navigate this transition.

This transition has been somewhat overwhelming both in terms of time and the emotions that seeing many potential future elementary schools for Lucas.  I ended up touring five public elementary schools – the one Lucas currently attends and four others that are closer to our home.

Meanwhile, we met with Lucas’s teachers, school-based therapists, vice principals of other schools, other parents, and special ed administrators at the district office.  And then hours of reading online, going through the district’s resources and highly trafficked parent listservs, trying to decipher the Seattle School’s special ed language and categories.

All of this to answer three basic and related questions:

A)   What school do we think will best serve Lucas?

B)   What school will the school district place him in?  And as a corollary, what schools won’t the district allow him in?

C)   What is our process for getting Lucas placed in the school we determine is best for him if it’s different than the district’s choice?

It stresses me (Krista) out just writing these down.  Because ultimately we can’t know which school will be best until we try.  But through our visits, it seems like there is a school closer to our home, where Lucas could have a number of things important to us: a welcoming school culture, a general education (ie “mainstream”) classroom placement, and school staff experienced with supporting children accessing education who have physical disabilities.  (As you can imagine, much of special ed is focused on emotional and behavioral issues, autism spectrum, etc.  This is all important, but we need people who can look at Lucas’s wheel chair, desk, classroom set up, paper, and pencil and come up with creative ways for him to do school work along with the rest of his peers.)

The school tours were emotional in part because I was on them with a bunch of parents of typically developing kids, many from over-achieving families.  They wanted to know reasonable things: about the playground and recess times, the computer labs, the fresh vegetable options for lunch, test scores, and whether or not there was a music teacher, art teacher, gym class, etc.  Some of these are things that are important to me, and of course it makes me sad to hear that schools are deciding between having a librarian or a music teacher.  But on the tours, as I watched kids in art class sewing a Harriet Tubman-inspired quilt, saw kids run around a wood-chip covered playground, listened in on a science class planning to clean up the drains around school to protect the salmon, and even smelling cafeteria food (which smells eerily the same as it did 30 years ago!) all made me sad.  I felt all sorts of nostalgia for elementary school – which I loved – and was reminded that Lucas might not experience many of the things that made school fun for me.  I hold out hope that he’ll find his own way to friendship and learning and adventure, of course, but for some weird reason the smell of corn dogs and over-cooked peas made me sad that there are parts of the school experience he won’t have.

Or maybe he will.  It depends mostly on finding staff who are interested and willing to be constantly creative so that Lucas CAN take part in the social element of lunch, even if his comes in through a tube.  It’ll take amazing art or science teachers to figure out how Lucas can help clean out a storm drain or make a quilt even if he can’t get down on hands and knees or sew a stitch.  And this is the hard, stressful, knot-in-my-throat-fearful part for me.  There’s no way to know if we’ve found that school with that staff until we pick a school and give it a try.

There’s a much less interesting, though equally long, story about how we’ve gone about answering questions B and C from the list above.  Fortunately we have the time to research and call and advocate, and it looks like we found someone at the district special ed office who is looking out for Lucas in this transition, and who agrees with us on the best placement for him.  We should get official word of Lucas’s placement in a month – keep your fingers crossed for us.

My favorite part of this whole adventure was taking Lucas with me to one of the schools.  In fact, only one administrator who led an evening tour invited me to come back with Lucas to sit in on a kindergarten class.  So the next morning Lucas and his nurse and I popped in on a kindergarten class.  They were in the middle of show-and-tell, but when we walked in every head turned, and what had been a quiet, orderly classroom turned into small chaos.  “What’s that?” “What’s that?” the braver kids shouted out and pointed at tubes, chair, ventilator.  The teacher did a great job of starting with asking Lucas’s name, giving me a minute to give the kids the words “wheel chair” and “vent,” and then they went back to show and tell.  The teacher asked Lucas what he had, and fortunately Lucas is always ready for show and tell.  He was carrying his T-Rex, and it turned out that about 15 of the kids were big T-Rex fans.  Other kids shared, and Lucas had trouble being quiet as he asked me (loudly) what everyone was doing.  When I explained that one kid – and then a few more – were sharing books they had made, Lucas got really excited.  “They made books!” he chanted, even after we left school.  The last kid who shared told that his favorite animals were the whale shark, the tiger shark, and the Tyranasaurus Rex, which I took to be a small shout-out to Lucas.  This, I hope, is the classroom he’ll be in next year.

Did we mention our latest trip to the aquarium?

Krista and I were talking recently about wanting to write more reflections on this blog.   Many of our posts these days are rather straight-forward updates about Lucas’s life (which people seem to appreciate), complete with cute pictures or videos (which people definitely appreciate!)  But the longer, more thoughtful posts that grapple with disability and parenting have become less frequent… alas, as many of you know, it’s hard to keep consistent with a blog.

Part of the challenge of a parenting blog is figuring out how much to make public.  And then there’s the fact that it’s a shared blog – we’re not always in the same place emotionally and sometimes disagree about what to publish.  Mostly though, it’s a matter of time and prioritization.  We both love to write, though, and we were honored recently that a review of Lucas’s blog was written by the publisher of the new Rad Dad Magazine (which is about to premiere in the next month after having been upgraded from a longtime zine).   So here’s my attempt at getting back into it.

Scenes from the holiday month (note: we just took our Christmas tree down so I feel justified in publishing a fragmented review of “the holidays” on January 15).

** The 3 ½ hour drive from Portland to Seattle isn’t always easy for Lucas; last year he got so tired, uncomfortable and upset that we had to pull over in Tumwater, just an hour from Seattle, and spend the night.  This year we planned in advance and found a quirky “resort” 6 miles off I-5 and decided to stay the night and have an “adventure.”

And an adventure it was.  We were the only people staying at the Silver Lake Resort, and the caretaker had to be pulled from a family gathering nearby to let us in the door of room #2.  But the weather cleared up and suddenly there we were, watching a beautiful sunset at the base of Mount St. Helens on the porch of a run-down hotel overhanging the lake.  After the sun went down we tried to find a place to eat dinner but nothing was open… so we got some supplies at the gas station convenience store a few miles away and whipped something together in our room.  The next morning we got up earlier and took a mile-long hike along a wheelchair accessible boardwalk trail right as the sun was burning through the morning fog.  It was spectacular.

As Krista remarked the next day, our Silver Lake adventure is one of those beautiful things that only happen because of disability.  We’re not big vacationers, but were it not for Lucas’s disability its likely we would have taken a longer journey during our winter break.  Rather, for the fifth year in a row we remained within a 150-mile radius of our home during the break.  And that’s just fine by us.

** We stopped in Olympia on the way back from Silver Lake.  We found a great fair trade café and store called Traditions where Lucas was able to lie down, rest and play with blocks while we got a snack.   Two people started watching us intently from across the room and after a while they approached with a small gift for Lucas.  They asked about his condition and we explained that he has a muscle disease.  One of the two people remarked repeatedly how sorry she was, how bad she felt for Lucas and kids like him, and how they would pray for him.

It’s not an unusual situation, and though on one hand its awkward (and often annoying) to been openly pitied by someone you don’t know, on the other hand I do sometimes appreciate people who actually say what’s on their mind related to Lucas instead of immediately turning away (also a common response).

But here’s what I’m really left with: if the couple had actually been paying attention when they were staring at us they would have noticed how much we smiled, laughed, enjoyed being with Lucas and making him happy.  Instead of apologizing for how hard our life must be they would have been moved by the love that surrounds Lucas.  It’s something that makes me proud and keeps me going even when things related to Lucas’s life get really tough.  We are a happy family.  It’s possible to both grieve what’s difficult in our life – the fact that our son may not live a long life, that his disability prevents us from doing a lot of the things that other families do, etc. – and still bring joy to much of our experience together.

** After lamenting about never being able to take a full-on vacation…  we planned a full-on vacation!  We’re going to Los Angeles for 5 days at the end of the month, the first-time that Lucas will get on an airplane for a trip involving nothing other than pleasure, seeing friends, and leaving cloudy Seattle for sunny southern California in the dead of winter.  (He has flown twice before: once when we moved across the country from DC in March 2012, and a second time to go to the MTM family conference in Minneapolis last summer.  In the latter case we drove 2 miles from the airport to a hotel.  It was an amazing trip, of course, but we never left the hotel conference area.)

I’ve never been much of a vacation guy but its already been fun to plan this trip for Lucas.  We quickly figured out that the Museum of Natural History now has one of the largest dinosaur exhibits in the world… and Lucas currently is obsessed with dinosaurs, not to mention wooly mammoths and saber-tooth tigers which we’ll also be visiting at the nearby La Brea Tar Pits.  Of course, we’ve had to explain repeatedly that we won’t be seeing actual dinosaurs but rather fossils – which Lucas is perfectly happy with as he seems to like the way that “fossils” rolls of the lips.   We’ve also secured a place to stay through my friend Walker that is an accessible bungalow a few blocks from Venice beach and right across the street from a dog park.

I’m looking forward to this as a trip for us, too.  Krista and I haven’t taken a big trip together (other than our hotel-bound Minneapolis journey) for 5 years, since we travelled to Colombia in the spring of 2009 a few months before Lucas was born.    It’s kind of funny, but I’ve been studying up on LA history, loading our Netflix with films about LA, looking at maps and doing research as if we were flying halfway across to the world to explore a new country when in fact we’re going 2 hours to frigin’ Los Angeles!  And who knows, maybe Lucas will get sick or a piece of his equipment will conk out and we’ll have to cancel the trip… it won’t be the end of the world.  But like our one-night Silver Lake adventure last month, I realize once again how being Lucas’s dad has taught me to appreciate the little things, and feel deeply fortunate at how much we really have.  We’re planning family trip to LA – how awesome is that!

Lucas enjoyed spending thanksgiving this year with both of our families up on Whidbey Island.  The weather was great (a rarity for November in the NW) with the snow-covered mountains rising above the calm skyline above the Puget Sound.  We took a few walks around the nearby Greenbank Farm, which Lucas will mostly remember for his fortunate encounter with a 120 pound puppy (“that was a giant puppy!” he kept saying in retelling the story to all who would listen.)

Everyone prepared some food on Thanksgiving including Burke’s famous tofurkey, made from scratch and including a vegan, gluten-free stuffing.   There was a “real” turkey too.  And Lucas benefited from all the cooking by getting some special treats in his tube formula.  Perhaps best of all was watching Lucas and his cousin Madden read together on the couch during our last day on Whidbey Island.  It’s sometimes hard to find ways to get Lucas and his fast-moving cousins interacting, especially without too much coaching or facilitating on our part, so it was awesome to see.

It’s been a long time since we’ve chronicled Lucas’s life — other than our visit to the firehouse on the anniversary of his accident — so here are a few more recent tidbits in no particular order:

• Our friend Sha was in town recently and his visit included a snazzy Lucas haircut and some awesome new Lucas yoga moves that Krista and Sha worked as a team to develop.  (See video at the bottom of this post.)  Sha used to live up the street from us in Washington DC and has known Lucas since he was a few days old, long before he even made it out of the hospital… and though Lucas sometimes doesn’t remember old friends from DC, he definitely remembers Sha, and they always have a blast together.

• On Saturday we tried to take Lucas to the small, local movie theater.  Unfortunately, the show ended up being on the second floor (with no elevator) so we couldn’t watch the film.  Lucas was a little disappointed since we’d really hyped up the movie, and it was one of those hard disability/accessibility moments.  The people at the theater felt horrible and gave us a gift certificate and offered to do a special screening on the main floor just for Lucas the following week.  That was really nice.  But even better was going down the street to grab a beer and some pizza and having Lucas be in the best of moods.  He was cracking us up doing his harbor seal impression, and we decided that it was meant to be that we didn’t make the movie.  And then we went by our friend Scott’s Hanukkah party and Lucas enjoyed that too, and made some new friends.

• The last few times we’ve been to the park we’ve brought Lucas’s baseball bat and a tennis ball and played a game in which he pitches (by dropping the ball over the edge of his wheelchair armrest), Burke hits, and any kids who are around chase down the ball and run it back in to Lucas.  As we said before, its tough to find games that Lucas can play with other kids and so its satisfying when we pull it off.   The only problem is that we’ve seen some tears and squabbling amongst the ball chasers, including Lucas’s cousins.

• As much as Lucas revels in the attention of family and friends visiting, we enjoy it, too.  When Nonna, Papa, Grandma, Aunt Megan, Aunt Ashely and uncle Brandon are around for a couple days, it means we get to step away from constant book-reading/puzzle-fetching duty with Lucas to enjoy a bit of uninterrupted time for cooking, magazine reading, or even starting a knitting project!  Susan and Megan spent an extra day in Seattle with us, and Lucas was very excited to take Grandma to the library to borrow more books to add to his overflowing collection. His current top pick is A is for Autumn.

(Note: These days Lucas often expresses his affinity for something by singing a bar of his favorite song, “Hey Lolly” with the words changed and himself as the protagonist… so that’s what’s going on in this video.)