We’ve been busy lately – getting unpacked and moved into our new place, hanging out with Lucas and family over the holidays and then getting back into the school routine, and now getting prepared for a baby to show up in just a few weeks (!). But in the midst of all that, we’ve been excited to realize that Lucas is slowly making friends.
Lucas’s social life is hard to describe. With us, and the adults closest to him, he is charming, funny, stubborn, and very fun to talk with if you’re willing to talk with him exclusively about the things he is interested in (read: dinosaurs.) Lately his verbal communication has gained new territory, including using first person pronouns to refer to himself much of the time (a huge shift from six months ago) and using phrases like “I like…” to tell us about preferences. People often assume Lucas is a cognitively typical kid, but the truth is that when it comes to conversation Lucas is not like your average 5 year old, and that is not just because of his physical limitations on speech. We’re used to it and often just grateful that he speaks at all. But there are times when of course we wish so much he had more of a range of conversation so we could ask him about feelings, hopes, desires, etc.
And even more challenging (at least for us) is to see Lucas clam up around most other people, so they can’t even see the smart or hilarious Lucas that we get to see. Often he’ll be cracking jokes with us – making up silly words, coming up with random ideas like “what if we name the baby ‘Dreadnoughtus’!?!” (that would be the most recently discovered, massive dinosaur.) Then, when a friend comes over to visit, he’ll get quiet. And at school we hear he rarely spoke for the first two months.
My biggest fear about kindergarten was that all the other kids would make friends with each other but not Lucas. Part of that was about knowing how little he talks with other kids, and part was knowing that kids’ fear of difference could be a huge barrier for Lucas. But all that worry seems to have been for naught. First, Lucas has never shown or told us that he’s worried about making friends. And secondly, kids have gravitated toward Lucas. If you ask Lucas who his friends are, he’ll consistently name three kids in his class. But then recently he’s started naming other kids – kids who’s names I can’t even connect with faces yet. I don’t know how five-year-old friendships form, but it seems that lots of verbal communication isn’t a necessary component.
Since he’s making friends, we decided in late November to venture into the world of play dates. Lucas has never had unmediated time with other kids, mostly because the only kids who come over are his cousins or our friends’ kids, so all of them come with parents. And if he interacts with them it’s all through us doing a lot of interpreting and helping facilitate play. So when I called the first mom to see if her son (I’ll say “J” since I haven’t asked these kids’ families for permission to write about them) could come over to play, I was as nervous as asking someone out on a first date. What would happen? What if J was indeed into Lucas, but Lucas didn’t reciprocate?
Burke was out of town, so when J showed up it was just the three of us. I had Lucas up in a chair that sits on the couch with a stack of dinosaur books. J came in, said goodbye to his mother, and sat down next to Lucas. He was shy with me in the room, so I wandered into the kitchen. And then he started talking to Lucas, asking him which book he wanted to read. Lucas answered, J didn’t necessarily understand, but neither of them seemed to care. So J picked out a book and started “reading” it to Lucas. Of course he’s a kindergartener, so he was mostly pretending to read. I could hear Lucas correcting him on some of his dinosaur identification, which again J didn’t understand all the time. But sometimes he did, and Lucas seemed to either not care that J didn’t understand all the time, or maybe he just appreciated that they were trying. The amazing part for me was to hear Lucas actually talking to another kid unprompted, and to hear this other kid, who adores Lucas, asking him what he wanted to do. I was elated!
Since then, Lucas has had one more very successful play date – this one over the winter break with one of the girls in his class who loves him most. She also came in asking Lucas what he wanted to do. When he paused, she told him that with her other friends they like to make cards for each other. So we got out construction paper and she cut out a heart and wrote something sweet to Lucas. I helped him as he drew her a dinosaur and wrote “I like you.” Burke helped them play a board game, and then we left them on their own to argue over which apps they’d play on the iPad. Even that — Lucas arguing and negotiating with a friend — was so new and exciting!
And there’s even more evidence that his classmates like Lucas. He’s gotten invited to birthday parties, and the parents tell us it was their kids idea to invite Lucas. This week in PE class the kids have been roller skating, and Lucas has been whizzing around the room with them on his built-in wheels. Apparently today half the kids in the class wanted to hold onto Lucas and his chair while they wheeled around the gym (with his nurse in roller skates pushing!) It was was such chaos of kindergartners and wheels and everyone tumbling over everyone else to be near Lucas (and the stability of his wheelchair) that they had to make a rule that only two kids at a time could skate with Lucas.
I never could have imagined way back in September that they would have to make rules limiting the number of kids hanging onto Lucas at one time. And although I knew I was nervous about him making friends, or even being accepted, the relief I feel seeing friendships form is so huge I can almost feel the worry melting out of me.
Some of this is hard to write about because we know that lots of kids aren’t as lucky, that for many reasons – including ongoing, deep prejudice against people with disabilities – they don’t make friends. And the superstitious part of me wants to knock hard on wood. Just because his kindergarten peers are sweet, nothing is guaranteed for next year. Or middle school. So even given these small but major victories, we’re of course still going to work with Lucas to help him develop social skills for down the road. But for today we are celebrating these awesome Orca kindergartners who have taken Lucas in as one of their own.
(We joined Lucas and his kindergarten crew for the annual Orca MLK march this morning and here are some pictures. We got some cute shots with his friends but figured we shouldn’t share without parents’ permission. But you get the idea… His sign says “Be Nice to All People.”)
A few weeks ago we took Lucas to a birth class for siblings with the great Penny Simkin. In fact, Lucas’s birth owes a lot to Penny, whose birth class for adults we also attended over the last two months. Because Krista went into labor very early with Lucas – and had to go on bedrest just to make it to 32 weeks – Penny’s book “The Birth Partner” taught us most of what we knew about labor and birth the first time around. So it felt like coming full circle to take her birth class and then have Lucas learn directly from her about the birth process.
And Lucas isn’t just interested in the baby — he’s shown more interest recently in pregnancy and birth. Now every time Krista groans when she stands up or complains about being tired, Lucas points out that its probably because she’s pregnant. And then he follows that with “being pregnant is hard work.” Even if he’s just parroting us, he says it with a sincerity that actually feels like he understands some of our current limitations. We’ve even explained to him that Krista can’t pick him up right now because of the pregnancy, and he seems fine with that. (note from Krista: It probably helps that Daddy remains his favorite parent!)
