Lucas Camilo

It’s been a busy fall in Seattle, which is partly why we haven’t been blogging much lately.  We figured solstice was a good opportunity to jump back in… if nothing else, we can now finally answer Lucas’s constant question over the last month – “Is it winter yet?” – with a resounding “yes!”

As the darkness turns to light we reflect on the year that’s been– our first with two children.  Ida is now 10 months old and a pure joy to be around.  When she’s not trying to grab everything in sight she’s often cackling with delight and making sweet faces at whoever looks her way.  She’s developing a devious streak and is often inclined to grab at Lucas’s various tubes and wires, of which there are plenty.  She hasn’t yet pulled his trach out (a good thing!) and Lucas is always ready with a stern “IDA! Not the tubes…” when she gets too close.  He also still enjoys doing “scat” with Ida, which mostly consists of him trying to imitate her high pitched squeals and goofy baby sounds.

Ida remains a large baby who loves to eat as much as she enjoys sitting in the middle of the room watching and smiling at all the people around (and animals, if there happen to be any.) She has been doing really well in her physical therapy, developing new moves and seemingly getting stronger every day.  She’s still delayed — most babies would be crawling by now and Ida still has a ways to go — but she seems determined to move around in whatever way she can despite her low muscle tone.

Lucas started winter break at the end of last week and is happy to get more time reading silly books and writing poems on his new tablet.  Indeed, despite major progress over the summer in using augmentative communication device know as the Dynavox, we were feeling stuck with the slow, clunky old-school nature of the Dynavox.  So we were extremely thankful for the technology experts and occupational and speech therapy team at Seattle Public Schools who set Lucas up with a new Microsoft Surface Pro which works 100 times faster than the old one.  The only problem is that Lucas has also figured out how to surf the web and watch dinosaur music videos, which may end up distracting him from getting his school work done!

Meanwhile, last month we celebrated (again) the victory of Lucas and his fellow named plaintiffs in a class action lawsuit against Regence, the largest health insurance company in Washington state. Regence and other insurers had been denying neurodevelopmental therapies to kids like Lucas (check this link from the blog to learn more) and the case against them was settled last year, and then approved by a judge a few months ago.  We actually got to go into the courtroom on the final day and sit with the amazing lawyer, Eleanor Hamburger, who led the case for four years.  The lawyer for Regence even grudgingly came over to say hi to Lucas!

The reason we celebrated recently is that in late November we received Lucas’s settlement check. We decided to donate the majority of the $25,000 to disability groups, and gave the largest gifts to 3 groups:

• Disability Rights Washington, which helped with the lawsuit
• Open Doors for Multicultural Families, a great organization that Krista is on the board of which supports diverse families who have kids with special needs.
• ADAPT, a group led by people with disabilities and known for its creative direct action protests.  (See this post about the ADA)

We put a call out on Facebook to disability advocates and others involved in disability rights and disability justice movements to solicit ideas of other groups to support, and got some great responses.  We ended up donating to a number of those groups and giving away close to 2/3 of the money, with the rest going to Lucas’s special needs trust.

Finally, we want to thank everyone for the positive response to Krista’s last blog post about parenting advice related to challenges we’re facing at Lucas’s school.  It can be hard to stick with this blog at times – mostly because we have so many other things to do, but also because as Lucas gets older we feel conflicted about how much to share.  But the amazingly helpful responses around dealing with disability makes it feel worth it, and makes us appreciate our friends and family.

So Happy Solstice (a bit late now) and enjoy the holidays!

PS: here are a few of Lucas’s recent ditties:

Walk poem

trpie trip trip .
1 day .
me & my family went on a muy muy grrr 8 walk

dinosaur poem .
my dinosaur’s
t-rex
as in tyranosaurus rex .
pterodacktl .
hadrosaurus .
the end
p.s.
how manny dino’s do i have ?
10000