Lucas Camilo

Update: the bargaining teams from the Seattle school district and the teachers union reached a tentative agreement this morning… but it won’t go into effect unless the union votes to end the strike this afternoon.  Stay tuned!

School was supposed to start last week in Seattle, but instead the teachers have gone out on strike.  Lucas is fine with it — he’s lives life so in-the-moment that whatever we decide to do (as long as it involves dinosaurs, a play date, the library, the i-pad, or school) he’s happy.

The strike is making national news, and here in Seattle it feels like a huge deal.  The parents of over 50,000 kids who were supposed to go to school last Wednesday have had to figure out alternative plans (including lunch for the 40% of Seattle kids on free and reduced lunch program).  And its big because its the first time teachers have gone on strike here in 30 years.  But what feels most dynamic about the moment to us is the overwhelming parent and community support that is pouring out for the teachers.  You wouldn’t know it listening to the TV news (they found a parent who actually said “Teachers should get their butts back in the classroom!”), but the support we’re seeing everywhere else is exciting.

On the first day of the strike Lucas made a sign (Be Nice to Teachers, and Therapists Too) and we went to his school to march with the teachers.  We ran into a number of his classmates from kindergarten with their families, and the table with food deliveries was overflowing.  We caught up with people we hadn’t seen over the summer and met his new teacher.  Later in the day we walked over to the school a couple blocks from our house and talked with more teachers.  Although obviously people are putting a lot on the line for the strike, and it is hard on many, many people, the picket line also felt like an incredible opportunity for staff, kids, and families to get to know each other.

The strike is part of a larger crisis in education in Seattle and Washington state, where federal courts have found the state out of compliance in its constitutional responsibility to fund education.  The state is currently paying $100,000 a day in fines, rather than come up with sufficient money to fund education.  So instead of raising taxes (what about a state income tax, so Bill Gates could fund public education instead of funding a foundation that undermines public education?!?), the state is trying to balance its paltry education budget on the backs of teachers.  The teachers haven’t had a cost of living raise for six years, while cost of living in Seattle is skyrocketing.  There’s a great article about how New Jersey got out of the same jam as Washington by passing an income tax.  Somehow we have a school board and superintendent that is fighting against the teachers, when they should be going to Olympia to fight for more funding.

But there is so much more at stake than just salaries.  The district wants there to be more “instructional time” with teachers.  Lucas and his friends already get very little recess and play time – these are five and six year olds! – so teachers are trying to defend recess at the bargaining table.  Caseloads for therapists — speech, physical, occupational, and mental health — are already high or non-existent, and the new contract would add more kids to their plate.  Seattle schools disproportionately discipline students of color — I’ve heard expulsion rates for the same behaviors are four times higher for students of color than their white peers.  The teachers have proposed creating racial equity teams in every school to address this huge injustice.

Today a group of special ed parents, teachers, and staff held a picket outside the district headquarters to specifically call attention to the issues in the contract around special education.  The district is trying to add more special ed students to teacher’s already overburdened classes.  A big issue is ratios — how many special ed students will be assigned to one teacher.  Kids with disabilities are supposed to be integrated – included – in mainstream classrooms as much as they can be.  In fact, “least restrictive access” is a key provision of federal law outlining the rights of kids with disabilities.

But inclusion doesn’t mean throwing a kid into a mainstream classroom without support.  So the district’s proposal to increase the student to teacher ratio seems like a set up to fail students with disabilities.  In fact, one of the therapists we know and love told me that when her supervisor talked to her team about their workload for the year, they were told to focus on quantity, not quality, of work.  We live in a crazy world when the people who are supporting the most vulnerable, needy kids are told that the priority is numbers, not human wellness or success.

So obviously we’re supporting the strike as much as we can.  Sadly, Lucas doesn’t love a picket line (the supporters honking is really hard for him), but he’s really into sign making.  As I tried to hurry out the door to the special ed picket, Lucas stopped me to glue googly eyes on the triceratops that he had drawn on the sign. If the strike goes on, we’ll have to keep coming up with good projects — to stay busy, and support the teachers.

It’s been a great summer for Lucas — not just because of the fun camps, outings, and trips we’ve done together as a family, but also because he’s continued to do really well in terms of his development. We keep hearing from friends and family how much more communicative Lucas is, how they can understand him better and actually have a real conversation sometimes. It’s very gratifying because for so long we knew that a brilliant, funny kid was in there but didn’t often get to see him share his best side with the world.  Now, there are times when we can’t shut him up!  Lately he often yells (or rather uses his loud voice) to say hi to joggers or other passerbys, insisting that they stop so that he can ask them their name.  We’ve even taken to calling him a “social dimorphodon” (which he prefers over “social butterfly.”) We spent 5 days last week at Whidbey Island with family and it was so fun to see Lucas interact in new ways with his grandparents, aunts and uncle, cousins, and of course his little sister Ida.

One of the really exciting things is that Lucas has begun to master the augmentative communication device known as the Dynavox.  We actually first got the Dynavox back in 2011 but realized quickly that it was never going to serve as a form of direct communication for Lucas.  For a while he still preferred sign language, and then as he continued to improve his verbal communication there was no need to switch to a tedious, cumbersome speech device — even if most people have a hard time understanding at least some of what Lucas says.

But in the second half of his kindergarten year, the occupational and speech therapists at school figured out a system for Lucas to be able to type out full words and sentences using the Dynavox.  Taking advantage of the fact that he is such a good speller, they realized that typing would be better than selecting from a menu of pictures and characters.  The challenge was to figure out a way for Lucas’s weak arms to get in a position to type while still being able to see the screen that the words were appearing on.  And the solution was to mount the Dynavox in front of his head while using a trackpad connected via bluetooth to an on-screen keyboard.  It took a while for him to get the hang of it, but with lots of summer practice he’s started to master the system.  Oh, and his newfound passion for composing dinosaur poetry certainly helps as well.  Check out the video compilation of some of his poems:

The other exciting development is that Lucas has his own power wheelchair!  Its been many years in the making — in fact, it was June of 2012 when Lucas first took a spin in a loaned powerchair.  It took a lot of training and the right vendor to find a position that he’s comfortable in and a wheelchair that works for Lucas.  We’re very grateful to all the people that have helped him learn to drive and configure out the right set up.  Most recently, it took a lot of back and forth with insurance and the vendor before we finally got the call a few weeks ago that his ride was ready to roll.

We drove out to Gig Harbor last Monday to fit Lucas in the chair, and after a couple hours of adjustments it was ready to come home with us.  The new chair has lots of bells and whistles, some of which are specifically customized for Lucas.  It has two features that the loaner chairs he employed previously didn’t have.  First, it can fully recline so that he can rest, get a diaper change, etc without being lifted out of the chair; and second, it elevates vertically so that he can almost get high enough to look us in the eye (see video below).  Today we took it for a test run at the community center down the street and then Lucas actually drove all the way home (3 blocks) by himself.  It took a while, in part because it’s been three months since he last drove and he’s still getting used to the new system. Certainly he still has some work to do before he can consistently use the powerchair, but its still quite an accomplishment.

I can’t help but be awed by technology sometimes, amazed at what can be created in our modern era to benefit a person like Lucas who has a severe physical disability.  But even more, I’m awed by my son.  It would have been easy for Lucas to give up after various failed attempts at using augmentative communication or power mobility.  But he stuck with it, and he has been patient yet persistent in getting to a place where he can use this technology to learn, explore the world, and best of all, have fun. The joy and humor he brings to all of this is infectious. I can’t wait to see what comes next…