Lucas Camilo

Some of you have heard about Lucas’s famous video writing/making/performing debut – here it is! The rapidly-going-viral “What To Do and What Not To Do.

We are so proud of Lucas and Mira for creating these videos (with support from the speech and occupational therapy team at school.) This past week Lucas and Mira presented this to their classmates, and then led their friends in role plays to practice the friendship/communication skills. Mira’s mom and I were in the back of the classroom watching so proudly. After watching the videos, their classmates came up and – with all the earnestness, nervousness and goofiness of seven and eight year-olds – they reenacted the scenes. It was fantastic.

And honestly, it was so incredibly exciting for me to see his school therapy team so beautifully and creatively broadening the understanding of “speech therapy” to include coaching for all of Lucas’s friends. He can work and work and work at communication – and he does try hard – but as long as his friends and peers don’t get support in learning how to communicate with Lucas, he’s going to be left frustrated. Burke and I have been sure that the broadening of the “therapy” to include typical peers would be beneficial to everyone, but we weren’t sure exactly how it would look. So it meant a lot to us to see Mira (with the support of her parents) enthusiastically dive into the project. She and Lucas both looked so proud at the front of their classroom when they presented.

And, if you didn’t see it the first time, watch the videos again to see how happy Lucas is. His nurse had been telling me about how much Lucas enjoyed acting. If you can’t see it in his face, watch his hands — they do an almost involuntary flapping that happens when he’s really, really happy.

We’ve been flying kites a lot lately. Lucas loves it, and we’ll built up quite a collection of cool kites which were especially on display at our recent spring break trip to Long Beach, Wa. (We never got around to blogging about that adventure, but you can check out some pictures — which include a lot of kite flying and a visit to the kite museum– below.)

Then last weekend we were up at Whidbey Island and there was a big wind so we pulled out our favorite new kite, the poison dart frog. I’ll let Lucas take it from there:

the story of flying the poison dart frog kite by whidbey island on the
greenbank farm.
we saw 2 horses named diomand and moonlight just FYI .
anyhoo
nooooooooooooooooooooow this is the story:
me & my daddy were flying the poison dart frog kite.
sudenly, the string BURST from our hand ,
skited acros the field ,
then it bumed into a car,
then it skiped acros the pond
finaly its string got stuck in a tree & then it got stuck on the
powerlines .

That’s right, despite the fact that we were set up a couple hundred yards from the nearest powerlines the escaped kite eventually flew far enough that the string got wrapped up in the lines right across from my parents house. We didn’t want anyone to get electrocuted so Lucas stood guard, watching the kite still flying high about the powerlines, and I called the power company to come deal with the situation. Eventually we left and presumably the dart frog was rescued but then confiscated by the power company. Here’s some video of the scene:

It hasn’t stopped us though… more kite flying adventures soon to come!

There is something so acute about life with Lucas – I want to hold on to each sweet moment, knowing life could get harder. And yet, so many amazing and hilarious and dull and tiring and then deeply awesome moments have to slip by without documentation because life keeps moving before we get a chance to sit down and write. Like spring break. It was amazing – we went to Long Beach and flew kites and saw sea lions and once again created an accessible adventure for our family. In fact, these days I am constantly convinced that this moment of parenting Lucas is the best yet. (You may already know this about me, but I am prone to hyperbole. I am also sometimes convinced that parent-caregiving is sapping the life-blood out of me and that I will never get enough sleep to hold a regular conversation. More on that another day.)

One of the most moving things about this moment in our Lucas’s life is that he has become so expressively caring about Burke and Ida and me. When I come home from my yoga class, he asks, genuinely, “How was your yoga class Mommy?” On the nights that Burke or I go to a class or meeting that keeps us out past his bedtime, he asks us about it in the morning. I’m pretty sure he doesn’t actually care about our answer, but that he is asking to demonstrate that he’s paying attention and caring about us as more and more “equals” in the family. It melts my heart every time.

A few days ago Lucas didn’t have a nurse on a school day, so I was with him all day long. I went to school with him in the morning, then brought him home midday so I could take care of him and Ida in the afternoon. I tried to make a little more “learning” happen at home, so I gave him a writing assignment. Creativity isn’t his strength – he likes research and the telling of facts – so I gave him the assignment of writing a list of five things he liked about our spring break. I set him up at his computer and went to the kitchen to clean up from lunch. Lucas proceeded to type in hundreds of nonsense characters (ie: 11111111111//////???11111111111/////, ten time over.) Then he hits the “read” function, and it takes his computer forever to read through it all. I got frustrated with him – this is his classic delay tactic when he doesn’t want to write. I erased it all. Went to the kitchen and he started to write a list. “1. I liked….” Then I saw him erase it and proceed to the nonsense-character-stall tactic again. I went over, turned off the volume and sat next to him and helped him think of three things to write on the list. I walked away, and he repeated his resistance tactics.

I got mad, and we ended up in a power struggle. I rarely get mad Lucas, and I hate to admit that there was something that felt good about the whole situation. I am the adult here! I can set boundaries and force my kid to practice things that are hard-but-good for him! But the truth is it’s not actually how I want to relate to Lucas. Even if it is my job to sometimes push him, I don’t want to do it from a place of power-over and frustration.

We made it through, and we found something of a compromise – Lucas doing the bare, bare minimum to meet my requirements; me enforcing the time limit I had set for his computer time. As soon as he finished writing, I told him it was time to shut his computer down since he had used all his computer time messing around on the writing exercise. He generally only writes on his computer because we tell him he has to before he can play his games, so this level of harshness from me took him by surprise. I could see him get sad, and it broke my heart. I probably would have caved and let him play if we hadn’t had a real-life timelines – I had to get him down and changed and fed at that moment if I was also going to have time to feed and change Ida and get all of us out the door in time for family choir. I could see his chin start to tremble as he tried not to cry. I felt terrible as I disconnected his vent so I could pick him up out of his wheelchair and lie him down on the couch.

In these transitions, when he is briefly disconnected from a ventilator, Lucas doesn’t have the air to speak. We’ve developed a few thumbs up and clicking signals he can make to communicate in these moments – sometimes we tease him about something, then tell him to give one click for yes and two clicks for no. This time, as I picked up a near-to-tears kid and held him in my arms for a second before I set him back down on the couch, he blew me a kiss.

And in an instant, as if he had hit a reset button, he shifted everything. I set him down and connected him to his ventilator. And I gave him a hug. I was so floored and humbled and yet not at all surprised that in a power struggle, my stubborn, determined Lucas was also the more patient and zen of the two of us. He softened and forgave me first.

I worry all the time about how disability plays into all of this. Power struggles are all the more complicated for us, since I am not only the adult, but also the physically able one, the one on whom his life depends moment to moment. Part of me worries that he has to forgive me quicker than a kid who could wrestle the tablet out of my hand and run away. I’m not just his mom in this situation, but also his arms and legs and caregiver. I hope one day he can read this and reflect back and tell me what he thinks of my parenting.  (And I hope I’ll be open enough to listen.)

I am pretty confident that we’re doing a good job holding all this. He knows Burke’s and my love is unconditional, and that certainly our life-maintaining caregiving is absolutely unconditional. I am pretty sure that even though these power dynamics are real and unavoidable, Lucas is confident that he can be fully himself with us. There are times when he is not all sugar and sweetness (his stern “Get out Mommy!” comes to mind – usually when he’s excited to have Burke read him his bedtime story and I joke that I’m going to take over). Anyway, when he blew me that goofy and forgiving kiss, I felt so deeply lucky to be able to know Lucas so intimately. He is truly exceptional.

And he really did immediately shift his mood. I helped him get a book to read on the couch while I did his care and got Ida ready. The three of us somehow made it out the door and got to family choir on time. And Lucas was not just feeling OK by then, he was in a spectacular and goofy mood. He talked more in choir than ever before, joking with the choir director and making up new song lyrics with her. He was so proud of our new lyrics (“This train don’t carry no fuzzy bow-wows”) that he insisted that she tell the band that we had heard play the song about our new verses. He told some fart jokes, talked about dinosaur fossils, and when we sang Lucas belted out – Lucas style – his favorite songs.