I have been pretty inspired over on the Book of Faces by all my poet friends sharing incredible, amazing verse in honor of National Poetry month. It reminds of me of Cheryl Strayed in Tiny Beautiful Things writing her advice to all twentysomethings to go to a bookstore and buy ten volumes of poetry, and when the interviewer asked why she replied “because the truth is in there”. And it is.
It’s kind of nerve wracking for me sharing stuff I write, because I write, but I’m not, like, a WRITER. And poetry, the way I do it, is just a sheer blast of me-ness on to the page without the dancing around and obfuscation of prose. It’s very much me. So in honor of the writing practices I’ve been reading about for this month, here it is–very little proofreading, just got it out on the page in the last hour or so.
It is a sequel to a short poem I wrote when I was 7 months pregnant with Bobo, calling him Butterfly Boy, which now hangs in a frame on his room. So I am cutting and pasting that one, followed by the sequel. It’s long, because the last decade has been long, and the ending is rough, because this isn’t over yet. But there you have it.
Butterfly Boy, July 10, 2003
We are waiting for you, my butterfly boy.
You drift without time in your lightless cocoon
I feel you roll over, stretch, nudge your wings against my side
They are damp, still folded in the smallest newness
I like to imagine as the days go by our butterfly dreams grow brighter
Drawing you down to the place where you will unfurl into vivid color and learn the song of who you are
We keep watch over your sleeping, we lean down next to you and add our voices to your growing song
Murmuring mamapapa sounds of welcome and love
The Butterfly Effect, April 6, 2014
And so you fought
Hard and long, out and up
Landing on my chest as a beautiful sodden heap, your wings and eyes still folded tight
You and I both stunned and tired to tears, with barely the time to rest before the next battle
And the next and the next and the next and the next.
But we sang to you, your father and I,
Your grandparents, your aunt and uncle, your chosen family of friends
The teachers and helpers who are wooed by your sparkling
We sing to you still.
And so you came
Swirling the stars to a different order
Pushing the universe so wide and yet still not big enough to touch the edges of what you did to my heart
“I love you more than every cheese pizza ever made, every SINGLE ONE.”, you slowly said to me last week
And I, the girl with a thousand words in her mouth, could only nod dumbly
Agreeing it seems wise to measure the best love in such careful things
Ripping its angry blade through the air, searing the wound with confusion and grief
Has knocked me onto the hard floor, on my knees, gasping for breath
Sometimes after a storm you still fold your lanky boy’s body into my lap
Tearstreaked and exhausted again, your fingers quietly tap across my belly
Maybe hoping to find the secret hollow wall to swing wide and let you back into your cocoon for a while
This world can be so beautiful for you, and so hard.
But you soar on, each day stronger, brighter, higher
You make friends and inventions and the best scrambled eggs
And your butterfly dreams give you giggles in your bunk bedded sleep.
You are full of certainty and joy about the world and your place in its abundance
And your wing winds have changed me too, shearing off walls of cocoons I didn’t know were there
So I could crawl out and feel my wings grow bigger enough to enfold and fly with you.
Yesterday’s acting class at Children’s Theatre was, again, wonderful. But we are working Bobo at the very razor’s edge of his learning curve, and doing that (after a full day of school AND homework, no less) can be draining for anyone. And it showed. By an hour+ in, all the compromising, small group work, waiting, and a sudden change to routine did him in and he melted into a big puddle.
But as I cradled his sad, sobbing body in the hallway a CTC employee quietly dropped a super cool fidget toy in his lap, which was just enough to help him rally and he made it back in the room in time to perform his scene. And on the way home he and his dear friend bent their heads together in the back seat of the van, carefully passing a few Valentine’s candy hearts back and forth as they created their own special hideout on Minecraft–just for the two of them.
Once we got home Bobo spectacularly lost it again at bedtime, and that was hard. But after the dust settled I found myself lying next to him in the dark, his arm exhaustedly draped over me and his face peaceful, while at his request I tapped out made-up lullabies on a tiny McDonald’s Happy Meal-style keyboard. Being there together, I loved him so much my heart hurt.
This road is hard, but these sorts of beautiful moments wash the sweat and grime off the cobblestones.
It has been so long since I wrote here that I forgot my password and had to convince WordPress to remind me of it. This may or may not be due to advancing age or the fact that my mind is so full that things are starting to drop overboard.
It has been so long that Bobo has hit double digits, and I shoved forward another year into my forties.
It has been so long that we are almost halfway through fourth grade, which has been up and down, with lots of successes and lots of hard things. And more people and things have drifted away from him, and some new opportunities have come up, and some old friends continue to stick around, and it is work, hard backbreaking work, all of the time.
Life, in other words, has become more of what it is and will be. Which includes the shifting impermanence I didn’t realize was part of raising a child with special needs, especially one who finds deep solace in routine and in long-lasting individual relationships. This may or may not be also true for his mother.
Our family insurance changed (not by choice) to one with a higher copay and mandatory physician authorizations and restricted networks. In one fell swoop, we lost our GP pediatrician of 9 years and each weekly occupational therapy visit will cost $50. Not that we are even going to OT right now, because we have to wait for an authorization from a doctor we technically no longer can see. And Bobo’s beloved occupational therapist is having a baby in April, so the meter is running. He is losing his beloved long term autism teacher to a sabbatical. And we are being forced by the district to switch schools in the fall-new staff, new routine, new start time, new absolutely everything with no guarantee it will work. Well, okay then. So long, everyone.
I realize these constitute first world problems of the highest degree–we HAVE health insurance, and a viable new school option. But it all highlights the fact that there are many people who are invested Bobo (and they genuinely do; he is quite a charmer) because it is their professional role to do so. Roles change, as I well know from my years in the nonprofit world. And each time they do our family is more and more isolated, and I have to regroup and throw myself into re-engaging with new relationships and new people and scanning the horizon for new services.
I’ve written plenty about Bobo’s emotional issues–how easily his system gets flooded, the fight-or-flight reactions which can make him rigid or even explosive at times. These have inexorably pushed us out of many of the typical ways a family feels connected and in community, including having additional children (we knew fairly early what we were in for and didn’t want to risk compounding or even repeating the problems). I work hard to compensate for that–we have an amazing spiritual community, he does any and all activities we think he’ll thrive in, I personally have a great group of friends and am not lonely or pining for human connection. But none of this kept me from weeping into my pillow last night because my child cannot yet pack a lunch, or remember to brush his teeth, or stay away from a screen without hounding, or do tasks without multiple systems and reminders (which he tries his hardest to buck and get out of), and I can’t yet see his path to making a go of it in the world. It twists into unexpected switchbacks every time we lose some of our helpers. All I know for sure is that the path is so, so long.
Hi, it’s been a while.
So last Sunday, I went to the California Train Museum in Sacramento with my friend and her exuberant 4 year old twins. It’s a pretty fantastic place, and I wish we had gone there when Bobo was younger and was All About Trains. I could write an entire post just describing its various layers of awesomeness, but for the sake of this moment in time will focus on just one. The first floor has this enormous, warehouse-like interior with sections depicting different eras of California railroad history: the effort to reach the coast (with serious attention paid to the groups of immigrants who did the work and got vilified for it, so props there), the elegant Pullman cars (no attention to the Pullman Porters, come on folks), and more. Basically, the floor is like the dioramas in the NY Natural Museum of History with backgrounds and mannequins and scenery….BUT WITH REAL TRAINS. Dudes. It’s very cool. This is the best picture of it I could find.
Obviously, maintenance and updates are a part of regular museum life, and embedded into the floor of the hall are actual railroad tracks (DUDES) so the trains can be brought in and out. As we walked and looked and talked I found myself more than once fascinated by the steel web of tracking at my feet: twisting and turning and overlaying each other constantly, then in place veering far apart so that the cars could be steered to totally separate places.
Is there a metaphor there? Well.
My beloved office partner, who is a friend and mentor and all-around wise woman, talks about child development as being on ‘tracks’. There is Track A, which of course has its bumps but is a pretty solidly typical trajectory, and there is Track B, which is for atypical special needs. Both move forward. Some kids are born right onto Track B, most chug along on Track A, and then there is the big ol’ raft of kids like Bobo. In many ways compared to a lot of Track B’ers the narrative of his life has been pretty regular so far. The years of early childhood and elementary life are kind of like the floor of the hall–unless needs and differences are dramatic all the tracks overlay each other in a happy jumble and kids just play together and figure it out.
The museum made me reflect, however, on how often I’ve been like one of those old-fashioned railroad workers trying to direct the trains onto the right track by hand, pulling levers to shift the bars into a new path. As Bobo has careened off onto Track B with his outbursts, his quirkiness, or his overstimulation, I have always, every time, immediately started scanning for the place where we could divert his train back onto A. I have advocated, brokered, been a diplomat with other parents, smoothed over, hosted, volunteered. My biceps have ached and my hands have blistered and callused as I have pushed and pulled my body weight onto each lever to divert, divert, support and divert. And you know, often it’s worked. We got him through preschool, public school, birthday parties, homework, playdates, afterschool activities, babysitters.
And then, sometimes, it stops working.
Friendships are not easy for Bobo, and never have been. He is cognitively so brilliant, has the deepest desire to connect and a wonderful, playful, often joyful nature. But his equilibrium is easily tipped over into rigidity or frustration, and when that happens he gets mad, or he does things that look really weird. When kids are little, they don’t mind this stuff. Everyone just plays together and backs off if they need space, then come back together, their tracks crisscrossing and braiding together.
But eventually, each train needs to go to its own place in the hall. Bobo has a couple of good lifelong friends, and kids say hi to him all the time at school, clearly interested in him and enjoying his creativity. He is the apple of his teacher and aides’ eyes, and is full of affection for adults. But the rest of his peer group has slowly fallen away–friendships have turned, gone silent. He wanted to have a movie night to celebrate the end of school, and four or five kids he asked yesterday said no, to his face. A couple were really rude about it. Bobo was a little sad and bewildered for about five minutes and then happily focused on the friend who *was* coming for a movie, and the other friend coming over this weekend. I tried to squeak out some unnecessary words of comfort and then drove from school to his Unitarian church youth group meeting as well as I could with shaking shoulders and quiet tears streaming down my face. I can push as goddamned hard as I want, but the levers don’t work right now. The tracks are curving far away from each other, and no matter how much I wish he could be with the brightly painted strong steam engines his little train has another path. It’s another layer of grief, despite knowing that tracks do eventually come together again, and that as he chugs along there will be some big roundhouses (middle school, high school, swim team and choir which are coming up) where perhaps we will find some other little trains on their own journey. Every adult who knows him, including the part of my brain that is a seasoned child development professional, says clearly he will make it and he will find his tribe. I know this is true, and I am careful to separate my own sadness from his experience. Maybe I’ll stop looking for the next lever, hop on his train, and lean back with my head at the window so I can enjoy the scenery.
So I’m not going to do a big summary of 2012 on the parenting front, other than to say it has been full of movement and change–more than most years. Many of the triumphs are ones that would be hard to quantify or describe, but just yesterday we had one which wasn’t.
In October or so a boy I’ll call Sean transferred into Bobo’s classroom; actually both rooms, both special ed and mainstream. The first day he arrived I got a phone call that Bobo had spent most of the day showing him the ropes and encouraging Sean, which was very sweet but we didn’t think too much of it. A couple of weeks later I was chatting with the teacher, and she said, “I have to tell you… Bobo and Sean have, I don’t know how else to say it, FOUND each other.” They are both mainstreamed pretty much all the time but have special ed to provide sensory breaks and support, and they, in a nine year old boy way, fell in love. Not only do they hang out at recess and try to sit together all the time, but they cheer each other on. When one has a bad day, the other does not and offers support. Their friendship is so strong that the teacher has them both earning behavioral and academic points all week in order to have a root beer together on Fridays, and Bobo has only missed the mark once. Sean is good at sports, which Bobo is not but wants to try, and Bobo is good at the arts and is more socially connected, which I think might be nice for Sean.
Bobo had his first playdate at Sean’s yesterday, and it was amazing on a couple of levels.
First, the two of them even look alike, and they spent hours playing–both are easily frustrated, but they are able to calm each other down. Sean apparently told his family that “Bobo is a clone of me”, and the two giggle and wrestle and invent stories and adventures, patiently helping each other and working things out and conspiring to hide Bobo under Sean’s bed so I couldn’t find him when it was time to leave.
Second, I felt an immediate kinship with Sean’s mother. It is rare that we can leave Bobo without that tiny gnawing worry that he will at some point be too much for those watching him, and I could tell this mom knew exactly what to do. But more than that– we talked for twenty minutes before Kevin and I left their house for our sans-Bobo lunch date, because she just knows. It is a rare and beautiful thing to find a parent who just knows about the in-betweener special needs kid, who is successful in some areas but struggling in others, whose development is confusing and wonderful and difficult. She and I both said we were close to tears about the closeness of Bobo and Sean’s connection.
Bobo has quite a few other friends and a couple of other close ones in particular. But Sean, as he says, is his BFFEAWD– Best Friend Forever Even After We Die. I’m under no illusion about kids and their ever-changing world of friendship, but still. In the rough and tumble universe of third grade, it’s good to have one of those.
The pendulum has swung the other way. We’ve had about 5 days on a new class of ADHD medication, and the same amount of time doing the Wilbarger Protocol– an occupational therapy intervention we did back in preschool with good results but hadn’t repeated since then. We (and his school team) use something that looks like a surgical or nail brush and brush Simon’s limbs and back followed by doing compressions on each major joint (which sounds super grody but really it isn’t). The idea is that doing this every 2-3 hours or so for a period of 2 weeks floods the central nervous system regularly with arousal and then regulation, which helps expands its capacity for tolerating input and stimulation. Every time I brush Simon he has no objections (very telling) and then afterwards melts into me like a puddle. This sort of thing makes me think about immediately running back to school to get qualified OT, but then I mentally slap myself and come to.
Anyway, it’s working.
He is so sunny, so happy, and visibly more resilient to terrible awful things like his horrific mother making him wear snow pants. He started to blow at that one but then just looked me in the face and said, “I’m SO ANGRY AT YOU!” and then stomped out to the car and buckled himself in his seat. He did an entire packet of homework in one night. He needed somersaults on the couch in between worksheets, but really, don’t we all?
We feel so much pleasure and relief about this that I can only imagine how he feels. It is a lot of work to be in that little unregulated body, and as tired and frustrated as I get my heart also breaks for him when he is struggling. Just as we kept ourselves afloat when things were super hard Saturday, Kevin and I are taking this new progress and holding it lightly. If we ride this rollercoaster all the way to the top, it will be that much further to come crashing down. But we can allow ourselves to be lifted, to be buoyed up in enjoyment of the moment. So we do.
You know what’s really fun for a lot of kids whose families celebrate Christmas? The decorating, the lights, the holiday events, the month-long traditions leading up to it, the smells, the sights, the sounds.
You know what’s really derailing for kids who love Christmas but have sensory and attentional issues?
We had signed Bobo and his dear friend up for a class at the local arts center–a cool-sounding three hours of homemade giftmaking for family and friends. I had that little catch in my stomach as I did it–the internal soft watch it I get when I know we are trying something right at the edge of his ability, but he said he wanted to and we soldiered forward. Because that is what we do. All was prepared, and ten minutes before his friend arrived at our house for a pre-class lunch it finally clicked for Bobo that the class was to make predetermined projects, not a free for all.
Given what we’ve survived in past years I wouldn’t call what followed a meltdown, necessarily. But his whole body went rigid, there were tears, and he unequivocally refused to go to the class. Ross Greene, who wrote a marvelous book called The Explosive Child, calls this vapor lock–the product of an overactive amygdala that gets triggered into a fight/flight/freeze response by either external or internl triggers. There is no logic to be used, no consequences to be threatened, no bribery to be done (well, occasionally that works, but rarely and it’s not my favorite strategy). Those parts of the brain get shut down by the amygdala, so they aren’t even accessible. And he can’t do it.
So we did what we do. I rubbed his back, tried to convince him briefly about the class (no dice), and engaged him in collaborative problem-solving about another option which was fair to his friend and to him. And his easy going friend arrived and was completely up for plan B, and I had them make a craft list and ran to Target and dropped money I wasn’t planning to spend on craft supplies, and they happily crafted for several hours. Bobo’s friend made carefully considered gifts for each family member, and Bobo did free for alls with clay and pipe cleaners and had to be reminded he had people on his list to make things for. And they had a wonderful time together. And he did it.
Metaphorically speaking, Kevin and I did all this with one hand. With the other, we were frantically trying our hardest to push aside feelings, the reactions to the pendulum swing which we are used to but still happen. Those feelings saying really? He can’t even do THIS? and sadness, and fear about what life will be like for our Bobo, and those little pings of pain about not having a parenting experience with a typical child who can roll with things and participate in the way we would like him to. Not to mention we had to suddenly give up our long-planned afternoon on our own together, without a kid, to just relax and enjoy each others’ company. On a small, whispery quiet level, we each wander around the house at these times trying to soothe ourselves and each other out of mini-vapor locks of grief and anger and depletion. And then we do it.
And the pendulum swings the other way too, as we notice how much better this is now than it has ever been, how much more regulated Bobo is than he has ever been, thinking about all the new information we are contemplating about his diagnostic picture and the new possibilities for treatment. And we dig deep to find energy to do it.