Lucas Camilo

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.

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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

 

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

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

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

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

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

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

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

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

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

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