Lucas Camilo

It has been over a month since we’ve blogged, so of course it’s hard to know where to begin. But here is some of the biggest news in a nutshell: Ida is crawling and Lucas has a new, wonderful aide at school!

We came back from spring break tentatively hopeful about a breakthrough at school. Burke had been on the hiring committee for Lucas’s new aide, and he had a pretty good feeling about the person the school decided to hire. But it is hard to tell in an interview, of course. We haven’t written a ton about school here because it can be hard to talk about the hard stuff in this intimate-but-nonetheless-public forum. I’ve started multiple ranting, furious blog posts about school that I never posted – about all the times they’ve forgotten about Lucas in planning events, about the ways in which his old aide was mentally and often physically not present (ie. regularly didn’t show up) to facilitate Lucas’s participation in school, about the hesitation in Lucas’s voice this year if someone asks who his friends are at school. It has been heartbreaking to see the many, many ways the adults at school have been failing him. (And his peers, too, I believe. By modeling that Lucas can be ignored and not showing them how to include him, they’re denying Lucas’s peers the opportunity to get to know a totally amazing kid sitting in their midst.)

Lucas dressed up for Super Hero Day (as Super Lucas, of course)

Lucas’s new aide was scheduled to start Monday after spring break, so I was excited to drive Lucas to school and meet this famous Dr. J. (Not actually his name, but our nickname for him.) He had met Lucas briefly as part of his interview, and when we pulled into school Dr. J came hurrying up to Lucas, got down right in front of him, and gave him a warm “Hey Lucas! It’s so good to see you again! How was your spring break?” Maybe it will sound like my bar is too low, but this – actually being at school, being there on time, and meeting Lucas with love – is such an improvement.

And although I was sending Burke “amazing!!!!” texts within a few minutes of meeting Dr. J, the real test was seeing if he could figure out how to help Lucas engage in class – do his classwork, speak up and ask questions of the teacher, and play with peers. Within a few days it was clear that things had drastically changed for Lucas at school. One of Lucas’s nurses said that she thought Lucas had participated more in the week after spring break than the rest of the school year combined. So needless to say, we have been relieved and grateful. And of course we’re still organizing. One of the rants that never made it into a blog post was written post-Dr. J – about the major failings of the school administration. But that’s for another day.

The other major change in our life is that Ida has suddenly become so much more mobile. She had mastered the roll around the house, but given that she is human and lumpier than a rolling pin she does not always end up in the place she aimed herself when she started rolling.   So then she’d push her way back up to sit, re-aim herself at the desired location (often Lucas’s suction machine or some other piece of medical equipment to tear apart), lie herself back down and roll some more. It made short distances navigable, but she rarely made it across the house that way.

A few weeks ago she started doing a few “steps” of a belly-down army crawl, which looked exciting. And then, despite it seeming so far out of reach, she suddenly found herself balanced on hands and knees. There were another couple days of tentative crawling steps, but that time has come and gone. She now crawls everywhere! Through every open door, over the puzzles and books and suction machine strewn about the living room, even around the yard and out onto the sidewalk with bare knees.

Surely a baby’s first crawling is exciting for all parents. But Ida is special. (So are your kids, of course.) She had to work harder than other babies to get here. And she’s older than most crawling babies, so I think maybe there’s more purposefulness in her gaze and glee in her huge cloth-diapered butt moving eagerly across the living room.

On top of all that, she has found her legs and is making some initial attempts at walking. She can stand and hold onto furniture, and she even cruises, albeit clumsily, along the edge of the couch. Lucas has always liked having a table in front of him when he’s lying on the couch, but today when he got home from school I realized the table now serves a new function. I left Ida standing at one end of the couch playing with a book and went into his room to grab something. When I walked back out, a mere 10 seconds later, Ida had scooted over and was standing in front of Lucas, getting ready to poke him in the eye. He of course can’t defend himself, so we’ll keep the table there as a shield, at least until she learns to pull herself up onto the couch. That seems like it is far in the future, but crawling and cruising seemed distant just a month ago, too.

Needless to say, we are so thrilled at how well both our kids are doing.

There’s more to say, as always. Future blog topics include: Lucas’s dinosaur fairy tales and jokes; reports on visits from so many friends; being a stay-at-home mom is hard; organizing parents for better inclusion at school; accessibility home renovations; Ida and the joy of watching her eat; sleep; bugs.

But instead of a to-do list that I may or may not ever get to (the story of my life these days), I’ll leave you with this. On Sunday I was gone all day, so I missed Ida’s first ever pulling herself up from kneeling to standing. But just getting Burke’s text was so exciting. When I got home in the evening, Lucas was diligently working on one of his old puzzles when Ida repeated her trick. Burke and I were so excited for her, and Lucas always gets in on the excitement for her too. Then we noticed that he had finished his puzzle himself – reaching up higher than he used to be able to. And we got excited about that too. The spirit of celebrating swept Lucas up and he declared “We should have a congratulations party!!” So we all put on some stickers, cranked up the music, and celebrated our two, wildly amazing kids.

Ida crawled here (not down the stairs, yet!) to supervise van washing.

Lucas helped Daddy wash the van on a recent beautiful spring day.