Lucas Camilo

Burke and I haven’t written a lot recently about schools here, in part because things have been getting better for Lucas and his peers with disabilities at his school over the past couple years.  Things could be better, but there is momentum toward improvement.  All-school events are now often planned with children with disabilities in mind.  His teachers have been incredible this year.  Lucas has a 1:1 aide who really understands him and is incredibly dedicated.

But there are still moments that are so painfully hard.  Like last Tuesday.  It’s not the first time Seattle Schools has left behind children with disabilities on a field trip while their non-disabled peers went off on adventures.  We are working to make it the last.  Here’s a letter I sent to the Superintendent and board.  If we have a sign-on letter (or a civil disobedience opportunity), we’ll let you know.  Here’s the letter.  And for fun, a picture of this incredible kid (not on field trip day — at a Lucinda Williams concert at the zoo!)

June 21, 2019

Dear Superintendent Juneau and members of the Seattle School Board,

This week my son, who uses a wheelchair, was left at school while his class went on a field trip.  The failure to provide him with bus service was avoidable, illegal, and unconscionable, and I hold Seattle Public Schools responsible.  In order to serve all students under the law, SPS can and must find another mode of transportation for students when the current bus company is failing so regularly.  I want to know what you are going to do to ensure no other kids get left behind.

My son Lucas is a fourth grader at Orca K-8, a Seattle public school with the declared motto “We All Belong.”  For years, I have been part of the hard work with parents and staff to make that motto feel real, especially for families of students with disabilities.

Lucas loves nature and science, so I was happy imagining him and his classmates at Seward Park with the Audubon naturalists exploring our local ecosystem. I felt glad knowing that the Audubon staff had gotten to know Orca’s students over the years, and after learning from some past mistakes, I trusted that they would remember to stay near paved paths and make sure that my kid and all the kids could see and touch everything that their non-disabled friends could get down on the ground to explore.

And then at 12:40 my phone rang and “Orca” appeared on my screen.  And I knew it. I knew that, once again, I was going to hear that my kid had been left behind.

Orca’s wonderful secretary – the one who had ordered the incredibly expensive accessible bus that we have to use – had to explain to me that the bus wasn’t coming.  She had waited until 12:30 to call transportation to check when the bus seemed late, and it was only then that someone told her that the request for the wheelchair bus had been denied.  She told me that my son was still at school playing with a couple other kids from his class – non-disabled friends – who had stayed behind to ride the bus with him.

I felt myself sink into the familiar feeling of nausea and heartache.  Once again, someone had overlooked my kid. As parents we work so hard to make sure Lucas knows that he is valuable, that he feels included, that his disability is a wonderful part of him and that it shouldn’t stop him from doing everything he wants to do.  And we often feel grateful that so many people at school – especially his teachers and his amazing team of aides and therapists – are part of that effort as well. And yet, there have been so many times when all-school activities were planned with no thought for my son or his peers with disabilities and mobility access needs, and each time it breaks my heart.   More often than ever, teachers, parents and staff are getting it at Orca—they are planning events with ALL students in mind.  But then, even when they do everything right, the bus doesn’t show up and my kid is left at school while his non-disabled friends are at the park learning about ecosystems.

I am acutely aware that I cannot protect my child from all the injustices and unfairness of the world, but nine and a half years into parenting, I haven’t given up trying.  When I got that call I dropped everything I was doing and rushed to Orca. On my way, I hastily texted his nurse to ask her to bring Lucas out front so we could race to Seward Park.  I texted with his teacher to make sure we could find the class when we got there. I calculated what to do about the other kids who had stayed back to ride the bus with him. It was a strange kind of relief to know that this time my kid at least wasn’t left behind alone.

But when I got to school, I realized it was too late.  Lucas insisted that he wanted to go home. I tried to convince him that it wasn’t too late, he could still get there in time for part of the field trip.  He said flatly that he wouldn’t go. He didn’t cry or talk about his feelings – in fact, when I asked why he wouldn’t go, he refused to talk about it.  But I am sure that he knows, whether he puts words to it or not, that he was left behind. And who wants to be the kid who shows up halfway through a field trip after being left behind?  So I let him stay at school, probably to play computer games by himself for a couple hours while he waited for his class to finish the field trip and walk back.

(If you’re wondering why he didn’t get pushed to the park – you try pushing a 150-pounds of wheelchair and kid and medical equipment down and back up the hill from Seward Park, picking him up and down dozens of curbs with no ramps.)

Seattle Public Schools has a contract with First Student, a private bus company that the PTSA has to pay $400 for a wheelchair adapted bus for every field trip, even for a 10-minute ride.  It would cost eight dollars in a wheelchair accessible Yellow Cab. It might cost forty or sixty in a medical van. But SPS says that is not an option because the contract with First Student requires us to hire only them. And then, even at this price, the buses don’t show up.  My kid is just one of many students with disabilities – at Orca and around the district – who are often left behind while their non-disabled or ambulatory peers pile on a separate bus and roll off to their field trip.

My partner and I have been able to structure our work lives to be flexible enough to drop everything when our kid needs it.  We have the financial resources to own a wheelchair-adapted van. We speak English fluently and can easily pick up the phone and speak with school staff.  This is not true for many students at Orca and throughout Seattle. While I could at least hurry to school on a moment’s notice that day and offer our van as a back-up ride, most parents I know wouldn’t be able to do that for their kids. That’s why this is not only a disability and access issue but also a race and class equity issue.

And this is also personal.  It’s hard for me to know where the fury ends and the grief begins.  I love Lucas so deeply, and I am sure he is changing the world with his brilliance and humor and unique insights and passions and personality.  He is resilient, and he teaches me every day how to still see yourself as whole even when the world doesn’t. His friends and classmates deserve to know that about him – and themselves – too.  Instead, when he is prevented from going on field trips they learn that in Seattle schools it is OK to treat the kids in wheelchairs as second-class citizens.

It is unacceptable for the Seattle school district to routinely leave kids out of school-sponsored events because of a contract with a negligent bus company.  First Student’s wheelchair adapted buses only hold 2 or 3 wheelchairs, so when we want to take everyone at Orca on a field trip, we have to use PTSA funds to rent four or more First Student buses.  This puts an incredible financial burden on families to make sure field trips include everyone. I am proud that Orca’s PTSA has prioritized accessible and inclusive field trips this year as part of the budget. But I am appalled that — even when we’re willing to shell out way too much money — the district’s one transportation option leaves kids stranded.

I know there have been many other problems with First Student in Seattle, and I realize that all of them need solutions.  For kids with disabilities, one solution would be quick and relatively simple: SPS should contract with multiple companies that can safely transport kids with wheelchairs.  Cab companies. Medical van services. Other bus services. In the long run, all students in Seattle deserve dependable transportation. SPS could solve this problem by simply ending its contract with First Student and running its own transportation service.

I am grateful to be part of a school community that believes all kids have a right to be included.  I am waiting for Seattle Public Schools to show us that they share our values. What will you do to ensure children with disabilities are no longer left behind by the bus?

Sincerely,

Krista Hanson

Lucas has pretty much fully recovered from his surgery last week. His eyes are no longer swollen; he can open them both and see as well as he did before the surgery. It’s still hard to tell whether the surgery has had the intended impact of making his eyes less dry, in part because we’ve been applying goopy antibiotic ointment three times a day. But there is less redness which is a good sign.

It’s now a week later and he still has black eye on the left side. The upshot is that he’s gotten a lot of mileage out of a joke: when people asking him what happened he says, deadpan, “I got in a fight. You should see the other guy.” Then he smirks as the questioner cracks up. I think he’s kind of sad to see the black eye go because he’ll no longer be able to tell that joke.

Yesterday Lucas had surgery on his eyes — a special procedure called a Tarsorrhaphy which essentially involves sewing the upper and lower eyelids together at the outer corners. While he was under anesthesia they also removed a bunch of his long eyelashes through cryosurgery.

Icing the eyes post-surgery

The good news is that 24 hours later he is resting and recovering well. He still looks like a boxer who got his butt kicked… his eyes are partly swollen shut and there’s bruising, especially on the left eye. But the initial pain coming out of the surgery — which was intense for Lucas — is long gone, and he’s fine laying on the couch listening to his favorite 70s rock playlist.

So why did he need this surgery? One of the effects of myotubular myopathy is that Lucas can’t blink much, not nearly enough to close his eyes. His eyes remain partially open when he sleeps, and his eyeballs don’t roll back and up (called Bell’s reflex) when his eyes are closed, a mechanism which helps moisten the eyes. All of this means his eyes get extremely dry and irritated, and some scar tissue has formed on the surface. Ophthalmologists have warned that the dryness and scaring could lead to infection and, if not treated, partial or total blindness.

We’ve tried lots of things (eye drops/ointment/gel, taping his eyes closed at night, a humidifier in his room, dampness goggles that keep eyes moist at night, and more). But the lower part of his eyes was still getting dry.

So they recommended the Tarsorrhaphy procedure–  stitches on the outer edge of the eyelids that will bring up the lower eyelid and (hopefully) prevent extreme dryness. The decision took some time to make; surgery is never easy as there is always the possibility of complications, plus there’s no guarantee that it will solve the problem. But in the grand scheme of Lucas’s health issues it’s a relatively minor procedure, and if it doesn’t work for some reason, it’s reversible.

Lucas has had 4 or 5 previous surgeries for various different things, so the routine is not new for us. But the last time was more than 3 years ago so he doesn’t really remember, and this time he was much more involved, asking questions all along the way. He grilled the anesthesiologist during the pre-op appointment the week before, and because he seemed to feel satisfied with the answers, he wasn’t that nervous going into the big day.

On Friday morning we had to show up at Harborview (not Children’s Hospital, where Lucas usually goes) at 6 am to get checked in. The anesthesiologist was great, allowing me to accompany Lucas into the operating room and make sure that he was comfortable and properly switched over from his travel ventilator to the hospital one. In a previous conversation with the surgeon Lucas had told him about his love of hard rock music… so there was talk of blasting Ozzy Osbourne over the OR speakers. But Lucas decided that might be hard to fall asleep to, so one of the nurses found some classical versions of rock songs. Lucas was still joking with the doctors and trying to “name that tune” as the gas started flowing, and pretty soon he let out a big yawn and was out cold. That’s when I left the room.

An hour later he came out to post-op where Krista and I were waiting. He woke up immediately and was in a lot of pain. It was definitely the hardest part of the whole experience… he cried and demanded that we put drops in his eyes (which was impossible) for what seemed like forever (actually maybe 10 minutes) while the nurses rushed to get a hearty dose of fentanyl into his IV. Finally he calmed down, we put on a good Spotify playlist, and the recovery began. An hour or so later we were getting him back up into his wheelchair, and rolling out of Harborview with a towel draped over his face. We joked that he looked like a zombie and he started making zombie sounds as we traversed the tunnels on the way back to the van. Then he threw on some oversized sunglassed for the ride, and by noon we were home and resting more.

It wasn’t until about 6 or 7 pm that he could actually see enough out of one of his eyes to watch his favorite David Attenborough nature special on Netflix. Today things continue to look up and we are cautiously optimistic that the procedure will ultimately be successful in preventing extreme dryness without limiting his vision in the short-term. We’ll keep you posted.

Yesterday we went to Burien Pride with some friends on a beautiful afternoon. It was a lot mellower than a big-city Pride festival, but still it was sunny and hot so Lucas wasn’t so into the scene…  until all of a sudden he heard some guitar licks emanating from the stage a few hundred feet away. Ida looked over and said “he’s got a Hello Kitty guitar!” And we were in.

Here’s what Lucas wrote about it this morning:

Last night I met my second rock star at a festival.

He was the guitarist from a band called Late September Dogs.

He had a pink Hello Kitty guitar.

He did awesome guitar solos.

There were 2 singers in the band.

They would take turns singing, then they would sing together.

The band was a mix of women and men which I think is rare.

Lucas insisted on getting right up front so that we could check out the guitar solos and appreciate the bands’ rock moves. Since becoming passionate about rock music about a year ago he has developed a very particular taste, and appreciates a good band when he hears one. (We tried to watch the previous band but two minutes into the first song he said “I want to do something else.”) Late September Dogs, said to be influenced by Heart and Aerosmith, was right up his alley.

After the show was over we went up to Dan, the guitarist, to tell him how awesome they were. Lucas was a bit star-struck, but he had enough wherewithal to ask him if their music was on Spotify (which it is.) Then Dan invited us backstage to take pictures with him and the Hello Kitty guitar. Needless to say, Ida was almost as excited as Lucas.

We’ve been fortunate to see a lot of great music lately. Last weekend was the Folk Life Festival at Seattle Center and we saw a bunch of different bands from across the music genre spectrum. His favorite was a hardcore band with an amazing horn section called Actionesse (they refer to themselves as “horncore.”) It wasn;t exactly your typical Folk Life fare — so loud and raucous that Krista insisted that Lucas wear ear plugs. It was 11 am and the band was clearly hungover but they still played a great set.

Then today we went to HonkFest in Columbia City and enjoyed a bunch of great marching bands, samba lines, and other assorted brass instrument-based groups.

Still, meeting the lead guitarist of a hard-rock band shortly after seeing him shred guitar solos on stage was definitely the biggest music highlight for Lucas and something hewill be talking about for a while.