Lucas Camilo

"Some cuts don't heal".... "Our homes not nursing homes"

Last Wednesday we were excited to head downtown for the Medicaid Matters rally organized by the direct-action oriented disability rights group ADAPT.  In the days leading up to the rally ADAPT did sit-ins in various Congressional offices demanding no cuts to Medicaid and an end to the “institutional bias” that allows for people to receive coverage in nursing homes but not in their own homes (despite the fact that the latter is much more cost-effective).

Unfortunately, Lucas was feeling sick so we couldn’t make it to the rally in the end.  Still, we’re big fans of ADAPT and it was exciting to see pictures of so many people in wheelchairs taking part in a mass action.  Lucas hopes to make it out next time.

Senator Bernie Sanders summed it up well at the rally:

Right now we are engaged in one of the great political struggles in the history of this country.  On one side we have the wealthiest people in the country who have never, ever had it so good.  On the other side what we are seeing is 16% of our people unemployed and 46 million Americans living in poverty, and that number is growing everyday. So the issue we have to deal with right now is to determine whether [our] government is there to represent all of the people and not just the wealthiest and most powerful.  In America today… we are the only nation in the industrialized world that does not guarantee health care to all people as a right.  Not only should we strengthen Medicaid, not only should we makes sure that children and people with disabilities and low income people are not thrown off Medicaid, we should expand Medicaid and Medicare so that every person in this country regardless of income has health care as a right…

The issues around Medicaid cuts really resonate for us as some of Lucas’s health-related expenses are not covered by our primary insurance.  Having spent the first three-months of his life in the hospital Lucas automatically qualified to receive secondary insurance through DC’s Health Services for Children With Special Needs (HSCSN), a Medicaid-funded program (even though our income is well over the cap).  However, as we plan our move to the Northwest it’s unclear whether Lucas will continue to receive such secondary insurance.

Of course, the possible cuts that Republicans are pushing for (and which many Democrats seem all too willing to accept) will fall mostly on the backs of the poor and working class.  For that reason, we’ve been involved in campaigns pushing for the wealthy and corporations to pay much higher taxes.  This is the only way for the future which Senator Sanders speaks of – where all people are provided with the health care they need – to become reality.

Burke has been working on a series of yet-to-be-released short videos about Medicaid, Medicare, and Social Security that use personal testimony to convey the importance of these programs.  In the clip below, Patricia talks about the enormous impact of Medicaid on her family’s quality of life:

Meanwhile, last Friday was the Washington DC reading for the Rad Dad book (pick up your copy today if you haven’t already – it makes a great gift!)  We were really happy to see a lot of our friends at the event and it felt good to share Lucas’s story publicly.  Burke discovered that his piece “Upside Down Lucas” is not an easy one to read out loud since it’s rather emotional.  However, it does well to express the challenges of disability in a way that (hopefully) encourages others to think more deeply about making the world an accepting place for all people.  In that way, it feels important that the book includes an essay about special needs parenting, and so far it has gotten a good response.

We hope to someday add a bunch of parenting, special needs, and disability rights resources to this blog so any suggestions you may have would be much appreciated…

(Burke writing) Earlier this year we wrote about our plans for moving across the country – from Washington DC to the Pacific Northwest. It’s time for an update or our progress and latest thinking.

Back in the spring we made trips to both Seattle and Portland to look at schools for Lucas, inquire about medical services, and begin investigating the opportunities for special needs children.  Our conclusion at that time was that both places were likely well-situated in terms of Lucas’s needs, and that ultimately we could make a good home for him in either city.

Despite the fact that the first three-syllable word that Lucas learned to say was “Oregon” we’ve been leaning towards moving to the great state of Washington.  In August I made a trip to Seattle to start looking into job possibilities, and met with many friends and colleagues in the organizing field.  As Krista continues to learn and explore new possibilities in the health and healing – from yoga and yoga therapy to Chinese medicine and acupuncture – she’s looking forward to the possibility of studying once we get settled in.  Our priority for now, therefore, if for me to find a job with good health care benefits so that Lucas will have everything he needs in Seattle.  Since our current health care insurance will end once we leave Washington DC this is a necessity – we can’t move until we have a job with such benefits.

Dreaming about ducks, hoping there are more in the NW

This sets up a challenging situation where we’re more and more psychologically prepared to move but have to play a waiting game before specific plans can be made.  If I get a job in the next month we could pack up and move by November; if it takes months to get a job then we could be in DC into next year.

A month into the job search the prospects aren’t great.  Though my research and meetings have given me a better understanding of the terrain in terms of non-profit organizations, as well as new connections, thus far it hasn’t led to any specific job offers.  I’ve only applied for one job  (at a labor union local) and didn’t even get an interview.  Granted, my standards are high – I want to work for a group with similar politics and values as my own (which are far to the left), and one that engages people through organizing.  I’m interested in doing work in communications (or development) because it gives me flexibility to be with Lucas and share more care-giving responsibilities with Krista than if I were to work as an organizer or executive director again.  So, if anyone reading this has ideas or connections then pass them on…

At this point we’re both excited and anxious about the move.  The fact that this week is the 20^th anniversary of the release of Nirvana’s Nevermind album has me waxing nostalgic about growing up in Seattle (not to mention feeling very old), and the hot, humid summer in DC makes us crave the mild climes of the Northwest.   More importantly, we have lots of loving family and friends awaiting us there, and we’re looking forward to starting to build a new community in Seattle.

On the other hand, DC still feels comfortable in many ways, and when it comes to Lucas’s support community, there is much that we’ll be giving up.  Of course, there are the friends – many associated with CISPES and other recent activist pursuits – who have been amazing tias and tios for Lucas in his first two years of life.  But there are also the nurses, therapists, and doctors that we’ve come to appreciate and who have come to love Lucas.  Just the other day we had a great visit with Lucas’s pulmonologist, a hilarious Greek man we call Dr. K who is always thoughtful and illuminating as it relates to Lucas’s respiratory health.  If only we could bring Dr. K, nurse Florence, his therapists Erin, Erica, and Debbie, and a handful of others along with us….

For now we have plenty to keep us busy.  I’m still working part-time for the Center for Community Change making online videos, as well as doing volunteer work for a bunch of great organizations.  Krista has settled in to teaching yoga classes, doing yoga therapy with kids who have disabilities, and taking anatomy classes at UDC.  We could happily stick around for another six months, but we’ve been talking about moving for so long now that it really feels like the time has come.  Alas, we’ll keep you posted on our progress moving forward.

As we blog less frequently, the list of things we could report on starts to pile up. We took Lucas on a big trip into the Shenandoah woods with friends this past weekend. We’ve been going for more walks around the neighborhood as the weather cools. Lucas is learning his colors, and if you ask him what color the trees are, he’ll say “neen.”  One of Lucas’s most devoted blog followers (besides his grandparents) was in town from California last week, and she and Lucas got to meet for the first time.

And disability has felt harder recently. It’s scary as we think about the future; infuriating when people gawk at Lucas when we’re out for a walk; tiring as we go through our limited routine of books, blocks, puzzles, and computer games over and over and over; complicated as we relate to more people about parenting, feeling like most of our experience is happening on a different planet than typical families.

So we think we might write about all of that at some point. In fact we were thinking about writing about some of it today. And then this afternoon, after a year of HATING finger paints, Lucas changed his mind. And suddenly that seemed like the most important thing to write about tonight.

Because for about a year, we’ve tried to convince Lucas to use finger-paints. He’ll draw with markers and crayons, but that’s complicated for a kid who has so little muscle strength. He’s taken to using watercolors recently, which require less pressure on the paper, but that takes precision that he did not have six months ago. Finger paints seemed like the obvious solution – so much less precision needed, so much more color with less brush strokes. But every time we tried, just barely touching his finger to the wet paint, he’d lose it. More than once he got so mad that he turned red and set off his pulseox alarm just at the sight of one of us finger painting and asking him if he’d like to try.

And then today, Krista asked him if he’d like to finger paint. Lucas signed a timid “yes,” and he gave it a try. And then he proceeded to ask for more paint and more paint and more paper and more paint for the next hour and a half. It was awesome.

There’s lots of good stuff to report these days from Lucas-land, especially now that we’ve survived both the earthquake and hurricane Irene.  The latter involved lots of preparation as well as an evacuation plan to a local hotel in case of a power outage.  Alas, the worst we got was some gusty winds and a lot of rain, which was fine by us.

Lucas was unfazed by all the weather madness and has been generally doing well.  His sign language repertoire continues to expand –  though not as quickly as before now that he’s mastered just about all of the animals in the kingdom – and he often combines a sign for something with his attempt at vocalizing the actual word.  For example, he’s become addicted to chewing on bananas and will let us know he’s in the mood (about 10 times a day) by doing the sign for “banana” at the same time as he repeatedly says “an-nan-na!”  We sometimes joke with him – “oh, you want an apple Lucas?” – which he does not find amusing at all.  The response is a rapid side-to-side hand wave (the sign for “all done” which Lucas also uses for “no”) coupled with a curt “nah!” and then the resumption of the “an-nan-na!” along with the sign for banana.  We should mention that the sign involves sticking out your pointer finger and then peeling at it as if it were a banana… so it’s a pretty cute display, to say the least.

Another thing he’s become rather addicted to is his iPad.  We actually got a prescription for one back in December based on its potential as an augmentative communication device.  At first Lucas hated the thing and would cry whenever we pulled it out; later, he would reluctantly play games with his speech therapist but we haven’t yet found good apps to use it for communication.  However, since we don’t have a TV the iPad is Lucas’s one source of animated visual entertainment, and he’s come to love both the Itsty Bitsy Spider app as well as the Wheels on the Bus app.  Recently we’ve downloaded a couple apps that actually have more educational potential and Lucas is starting to both learn the alphabet and identify shapes using them, which is exciting.

Another thing he’s gotten excited about is Skyping with grandparents (as well as other family and friends).  Nonna and Papa (Burke’s parents) and Gramma (Krista’s mom) all love video-chatting with Lucas from across the country, and they have a lot more patience then Burke’s three nieces (Madden, age 6 and twins Tya and Ellody, age 5).  The grandparents read books to Lucas through the video-chat and show off whatever animals they can corral around the house, which is very pleasing to Lucas.  The other day Burke picked up the phone to make a call and Lucas immediately started doing his signs for “Nonna” and “Papa”, demanding a video chat.  We called them and luckily they were home and obliged.  Lucas had previously developed the sign for “grandma” during Susan’s last visit and it may be his favorite person sign after Mommy and Daddy.  Of course, “duck”, “cow”, “cat” and “doggy” blow all us humans away.

Speaking of animals, Lucas now gets occasional visits from Bella, the friendly next door dog.  He beams when she comes into the room and starts slapping his leg and saying “nogey! nogey!”  Lucas still gets a little nervous when Bella puts her head right up to him, but he’s practicing petting and talking to his stuffed doggy, Fuzz.  The other day he was jazzed up following a visit from Bella, and took his energy out on Fuzz, which we captured in this video.  Also note his attempt at saying “elephant”…