There was red playdough, clothes-in-cubbies, nervous parents, circle time, bubbles, the ABCs, introductions, teachers chasing run away kids down the hall, and lots more first-day-of-school mayhem. And Lucas seemed to soak it all in. He was cool through the parts he didn’t like (bubbles) and thrilled when the ukelele came out. And right as the school morning ended – a full hour and a half earlier than his usual nap time – Lucas crashed. If it all goes as well as today, or even nearly as well, this school thing should work out just fine.
Here are a few pictures from the day. Pay no attention to the start date on the reader board — we were not two weeks late to school!
Lucas leaving the house with his little red book (Chicken Soup with Rice).
The arrival.
Daddy saying goodbye
Lucas may or may not have been happy to have his parents eager to pose with him.
Monday is Lucas’s first day of pre-school. Needless to say, we’re both excited and quite nervous. As the day gets closer we can’t help but think about what it really means that he’s starting school.
As you can probably tell from our last few posts, things have been going really well lately for Lucas. The number of excursions and new adventures we’ve had in the last 2 months is remarkable, especially for a kid that not long ago said “no!” emphatically every time we suggested leaving the house. We’ve felt extremely fortunate for the beautiful weather in Seattle and some extra flexibility in our schedules over the summer… but that would have meant very little for us if Lucas’s health, endurance or attitude didn’t permit us to actually leave the house very often.
But the fact that Lucas is enjoying going out is important for another reason: it makes us feel like school might really be a good thing for him. Between his weekly music class and a camp at the nearby Children’s Playgarden, Lucas has already been in some school like situations and he’s done pretty well. It’s still hard sometimes to imagine him interacting well with other 3 and 4 year-olds, who have a tendency to operate in a gear that’s too fast for Lucas. One of the things we’re very nervous about is getting Lucas in positions that allow him to be communicative and interactive. For a kid with extremely low muscle tone this is a huge challenge, but getting outside in a variety of situations is great practice for school.
Of course, there’s one big difference: on our recent outings both of us are there accompanying Lucas, and we’re experts at knowing when he’s upset because of a breathing issue, or bad positioning, or just because he’s being an impatient 3 year-old and we failed to chose the right book. And here’s the kicker: when he gets settled into school, we won’t be there.
Yes, it’s true – parents can’t actually spend every day of school with their children! We’ve joked that Burke will be tucked in the corner of the classroom with his laptop blogging and live-tweeting Lucas’s first day of school. Or that Krista will be planted in a tree a block away with binoculars, prepared to intervene should someone forget to put the little oval-shaped pillow under Lucas’s neck when he’s sitting up. In fact, Lucas’s teacher at Lowell made a home visit last week and assured us that one or both of us could in fact be there during his first day of school. But what about the 2nd day?!?
Lots of parents go through separation anxiety when their first child heads off to school, and yet for Lucas there are so many more levels of challenges. A couple years ago, we didn’t even know if Lucas would ever be able to go to school. We had no idea if his immune system could handle the germs, if he’d have the physical stamina to be out of bed for half a day, if he’d have the cognitive and social skills to enjoy school, or even if he’d make it this far. And now, here we are. All signs point to him being ready, but there is still the fact that Lucas has so many very specific medical and physical needs. Of course there will be a nurse accompanying Lucas – two different ones who already know Lucas and will alternate days. They’re good and we trust them, but whereas they’ve spent 8 to 12 hours a week with Lucas for the past 6 months, we’ve spent just about every minute with him (collectively) since he was born. When it comes to a slight change in head positioning that will make all the difference in his enjoyment, we’re not sure they can read the slight fogging over in his eyes as quickly as we can.
And we just have to accept that Lucas’s nurses may not know as fast as we do whether Lucas is turning grey because of a a medical emergency or because he’s throwing a small tantrum. It’s a crazy thing to accept, but if we want Lucas to experience the world beyond the two of us then we have to. Of course we’ve already been trusting nurses with medical/childcare tasks every time we leave Lucas home alone with them. But our house feels like such a controlled environment compared to the chaos of a preschool classroom, not to mention a school bus ride. The first time we leave Lucas at school will be the first time Lucas has been away from home without at least one of us.
So tomorrow morning the adventure begins! We’ll pack Lucas off to school with his cutest first-day-of-school outfit, new backpack, wheelchair, vent, suction machine, back-up suction machine, nurse, and a change of clothes to keep in his cubby. If you’re on twitter check out #lucasfirstday (just kidding).
Ever since Lucas got into Volume 13 of “Signing Times” – the videos for kids learning signing language – he’s been obsessed with the idea of school. He can do the signs for “teacher” and “backpack” (among others) at the same time as he chants the words and grins. So it was not surprising that he got excited this morning when we told him we were getting in the car to go visit an actual school.
The public school in question is Lowell on Capitol Hill. Lots of people have mentioned it to us as the place best prepared to handle kids like Lucas with complex special needs. With his 3rd birthday fast approaching and the process of preparing an IEP (Individualized Educational Program) underway, we called up the person in charge of Seattle special needs pre-school education a few weeks ago. After hearing about Lucas she suggested we visit Lowell and we set up an appointment.
Not sure what to expect, we marched in at 9:15 this morning and were immediately blown away. There was the usual hustle and bustle of preschool/elementary school (Lowell goes through 5th grade), with kids running around the halls and teachers trying to keep them under control. But within two minutes we also saw something else: multiple kids in wheelchairs, or using walkers, also participating in the action. And there were various special needs seats and mobility devices scattered about the halls as well. Here was a rare place where Lucas – trach, vent and all – was not something to stare at but rather just another kid getting ready to learn.
And it got better. All the people we talked to – teachers, aids, therapists and administrators – were welcoming and fun, excited to meet Lucas and aware that he would be a great addition to their classrooms. There are two preschool classes for kids with special needs and we were able to visit the morning class where Lucas got to meet a number of the kids. They crowded around to say hi, and Lucas waved and said hi back. He seemed a little anxious but also enthralled by the attention, and repeatedly showed off his signs for “teacher” and “school”, while also guessing the first letter of everyone’s name that he met.
We spent 20 minutes in the classroom observing and chatting with the teachers. Lucas got to roll up and join the class for a ABC song accompanied by Mr. Chris on the ukulele. He even clapped along for a little while before deciding he was all done and then asking to check out books in the mini class library. Later we visited a class for older kids with special needs and continued to walk the halls and peak in on the therapy room and cafeteria. Lucas met a young girl named Maria who appeared to have cerebral palsy and was working on controlling her power chair with a teaching assistant. He made the “M” for Maria and she smiled.
Lucas’s birthday isn’t until August and he won’t start preschool until sometime in September, so there’s plenty of time to keep checking out other possible places. But as we walked out the door from Lowell we looked at each other and said “That’s where Lucas is going to school!” It felt good all around.
Despite his questionable fashion sense (see previous post), Lucas is doing well these days. He’s added “cat” and “hug” to his vocabulary, and we’re working on “dinosaur” so he can start requesting more books by name. Unfortunately he’s still reticent to perform for the camera (besides waving his arms in the universal “gimme!” sign), but we’ll catch some more video soon.
Although I’ve been back almost a week, I thought I’d write a bit about my adventures in the northwest. (Krista writing, this time.) The trip was meant to be a combination of exploration and information seeking for our pending move, along a relaxing visit home. And somehow with what felt like a dozen meetings scheduled in two cities over the course of 5 days, I managed to make all that happen. Or, I should say, lots of people helped me make that happen.
Building on the research that Burke did a couple weeks ago, I went to check out another preschool in Seattle and met with a special ed service coordinator in Portland. Both meetings were somewhat informational, but like Burke’s visit, they were also hard. I was reminded of how complicated it is to describe Lucas. Often I found myself really emphasizing Lucas’s disabilities, stressing that he’s going to need A LOT of help. He can’t move his torso much. He can’t sit up, roll over without assistance, or lift his elbows if he’s sitting up… It feels terrible to describe Lucas in a list of negatives, but without doing this, professionals picture a more “typical” special needs child. In both meetings the professionals tried to be positive, but their “don’t worry, we’ll make it work for Lucas,” felt dismissive. That’s nice, I thought, but what about the fact that all the three year olds are in the sandbox right now throwing handfuls of sand at each other? Lucas’s chair could not get in the sandbox, and he certainly can’t have sand near his neck. I feel like we deserve more specific answers than “we’ll make it work,” but without having Lucas along side me to show off, I wasn’t sure what more to ask.
Of course I’m glad that the predominant philosophy in education now is to “mainstream” kids rather than isolate or hide away children with disabilities. But we also know that in a classroom Lucas is going to need nursing assistance, as well as creative teachers and aids who can help him and his peers into situations where he can express himself, learn, and play with other kids. Maybe it’s an unrealistic question to ask if those people will be there when we need them. But I wanted to know. Will there be an administration that really values difference, and models which embrace children of all abilities? And will there be wheel-chair accessible classrooms? And music rooms? And playgrounds?
We may be starting along this path of questioning a little bit early, but it feels like we should ask these questions before we choose the school district where we’ll live for the next decade or two. Ultimately, it seems that we’re going to have to trust that wherever we end up we’ll dig until we find the people who care about quality education for all children.
I also met with a pediatrician who we will likely choose for Lucas if we move to Seattle. She’s been in practice for a long time, and she’s worked with many medically fragile children. In contrast to the meetings with schools, she had a very clear idea of things she could help us with – home nursing, therapies, specialists, medical supply companies, etc. She even offered to help connect us with other parents of medically fragile kids, and she said she’s planning on reading My Baby Rides the Short Bus. (For our moms who are keeping the Portland vs. Seattle tally, that’s one point for Seattle. :)
One of the highlights of my trip was meeting Shannon, mom to a 9-year old with MTM. Their first years with MTM were very different than ours – their son was 2 when he was diagnosed with MTM and 3 ½ when he got his trach. But there are many things that felt very familiar and reassuring about meeting someone else who’s walked our path. Maybe most significantly, in light of some of our questions about schools, was hearing that Javad is thriving in his second grade classroom, and that his “typically developing” peers love and include him. It was also great to hear about some of the logistics of how they’ve structured their lives – the layout of their house, their nursing schedule, transportation options, power chairs and communication devises, etc.
Another major highlight of the trip was seeing some of the many people I love in the northwest. My mom and sister and I got out for a short but beautiful hike in the Columbia River Gorge. I got to see my friend Jennie who I’ve know forever, and who is now radiant and pregnant. And Alice, who somehow managed to act sane and hang out with me just days before turning in her dissertation. I was in Seattle for just 24 hours, but in that time I was lucky enough to get to visit with a few old friends as well as Ashley, Brandon, and our nieces. Madden, Ella, and Tya stayed up late to see me, and we read bedtime stories together. It was great to see them, and especially exciting to imagine cousin sleep-over’s that might one day have the girls reading Lucas his bedtime stories.
And it’s good to be back – I missed these guys! Here’s Lucas working on the sign for “go.”
(Burke writing) I made it out to Seattle on Wednesday for a brief trip, the goal of which is to do some reconnaissance for our potential move to the Northwest, as well as hang out with my family, who I haven’t seen all together since last summer. Though we’re still a ways away from starting to pack up and leave DC, we are beginning a process (as we talked about last month) that will move us in that direction. The first step is to figure out if Seattle and Portland – our two options – have everything Lucas needs for a good transition to occur.
In the last few days I’ve visited with doctors, preschools, and parents to learn about what Seattle has available. It’s been an enlightening trip so far, and without making any conclusions or going too deep into details (because I don’t have much time to write), I did want to share a few things that I’ve learned.
First, even at places that are set up for kids with special needs like the Boyer Children’s Clinic and the EEU (both of which I had the opportunity to visit with my mom), there aren’t a lot of kids that look like Lucas. Actually, there weren’t any kids with vents and/or trachs in the classrooms we observed. I guess that’s logical since the most common disabilities that kids have don’t involve severe muscle weakness in the way that MTM does. But it was still discouraging: on one hand, visiting classrooms, seeing 2 year-olds with disabilities participating, and talking with teachers made the possibility of Lucas someday being part of such a classroom real; on the other hand, the absence of medically fragile kids in those spaces made it difficult to actually envision.
Which made the experience yesterday of meeting another family with a child who has Myotubular Myopathy all the more amazing. I connected with the McLaurin family through Facebook (many MTM parents are part of Facebook support groups) and they invited me to stop by their house north of Seattle yesterday afternoon. It was wonderful to meet 3 1/2 year -old Trent and see how well he is doing: using sign language, holding himself up, taking part in the world around him. His special needs are very similar to Lucas – trach, vent, and feeding tube being the most visible examples – but there are also things about Trent that are distinct (“every boy is different”, said his mom, who has had the opportunity to meet a number of other MTM families). From the experience I know that Lucas is going to be excited to meet Trent and other little boys with MTM someday, and I know Krista will be excited to meet his parents. Perhaps the best part of the visit was getting to talk to them and hear how similar we are in our outlooks about MTM, navigating the world of disability, and being strong advocates for our kids.
Finally, I miss Lucas! It’s such an exciting stage that he’s going through right now, developing his ability to communicate through sign language, that it’s hard to be away for even 5 days. I can’t wait to get back on Sunday and see Lucas and Krista and hear about their adventures in the warm spring of Washington DC (quite a contrast to Seattle, where clouds, rain, and highs in the 50s have greeted me – Krista’s not going to be happy about that part of the potential move report…)
Spring seems to be slowly arriving in Washington DC, with beautiful, sunny days still interspersed with cold temps and the occasional wind-storm or freezing rain. We’re excited about getting out outside for some walks with Lucas, hopefully as soon as this weekend when Burke’s parents are in town for a visit. The transition that spring represents also has us thinking about larger transitions down the line: the likelihood of leaving DC in the not-so-distant future and moving back to the Pacific Northwest.
For a couple years now we’ve talked about the possibility of moving to either Seattle or Portland, despite our friends’ great lobbying efforts to keep us here. Both of us grew up in the Northwest, our families live there now, and the mountains, rivers, and Pacific Ocean are in our blood. In the long run we imagine ourselves living in the great states of Washington and Oregon, and as we think about finding a more stable living arrangement – since the mid-90s, neither of us has lived in the same house or apartment for more than 2 ½ years– it’s logical to make the move sooner rather than later.
And yet there is a lot that we love about Washington DC that’s going to be hard to leave. We’ve managed to build a wonderful community of friends and fellow rabble-rousers, and leaving DC would mean leaving that community behind, not to mention some of our favorite organizations in the world. We moved to DC in the fall of 2007 and yet it feels like we’ve been here a lot longer. In a city with a reputation as a transient hub (at least amongst it’s more affluent, white residents), we’ve manage to encounter a much deeper sense of community than we ever imagined when we first arrived. It’s because of such great friends and community that it’s hard to even talk about the possibility of moving.
The other challenge, of course, will be moving with Lucas. We’ve developed quite a network of doctors, specialists, therapists, and nurses who are part of Lucas’s team, and re-establishing that network somewhere else will take time. For now at least, Lucas needs to be in a good-sized city that has adequate resources and support for people with disabilities. We’re confident that both Seattle and Portland will do the trick, but it’s nevertheless daunting to imagine the process of building a whole new medical and therapy team.
So as we start to think about moving, there’s a lot that we need to investigate and have in place. Having sufficient health care insurance in place is essential, and part of the reason we can’t just move next month is that we need to ensure we’re on a family plan that can move with us (at least temporarily) as we transition of from DC to the west coast. Then there’s secondary insurance and the eligibility requirements and waivers necessary to get Lucas on a Medicaid-funded program locally that will cover things like nursing and equipment that may not be covered under our primary insurance. We’ve started to reach out to parents of special needs kids in the Northwest to investigate these things, and are planning trips to Seattle and Portland in the coming months to set up meetings and continue these discussions.
And then there’s schools. Lucas is only 18 months old but we’re already starting to imagine what it’s going to be like for him to go to school. What are the public schools like in each place in terms of their accessibility to and integration of children with disabilities (especially medically fragile kids like Lucas)? Are there other schools specifically for children with special needs that are worth considering? What kind of parent and support networks exist? (And will there be books about disappearing ladybugs, Lucas asks?) These are all questions we’ll be looking to answer in the coming months.
We know some of our blog readers live in the Northwest, while others live in different parts of the country but have a lot of experience thinking about these challenges. We’d appreciate any thoughts, input, contacts, and connections you may have that will help us along our way. We’re excited but also a little intimidated about this process, and would appreciate all the help we can get.
