Parenting, No. 785

I went to visit Henry this afternoon at his new job. He's a server at a funky little place in Venice. Maybe I shouldn't use the word funky anymore since very recently, like yesterday, Oliver told me that it was embarrassing. Maybe he didn't use the word embarrassing, but he repeated the word funky in a voice that I guess is mine, at least the voice that both sons use when they imitate me, and while I imagine there's fondness in the teasing, it still takes me by surprise that I'm considered painfully uncool and old. Both brothers have jobs this summer (Oliver actually works nearly full-time all year round, recently opened a Charles Schwab trading account and has bought stocks -- no joke), and I'm very proud of them. It's been a long time since I've included them on the old blog, and just now I was looking for past posts in a kind of nostalgic way, and boy -- some of those posts were damn funny. I sat down at the bar of this little restaurant where Henry works, next to a younger woman who was drinking a glass of wine and eating a salad. Since I'm the chattiest person on the planet and the proudest, most embarrassing mother, I introduced myself to the woman and told her that Henry was my son. She told me that she had a four year old son, and that he was in a challenging stage. I told her that I remember well those challenging stages, but I found those times to be more physically challenging and the teenaged and young adult years more emotionally challenging. I didn't tell her this story, but Reader, I 'll tell you. Just the other night, we were sitting at the table eating dinner -- takeout Vietnamese because making dinner in the summer is just not my thing -- and the usual conversation between The Brothers began, and this entailed arguing about whether LeBron James or Michael Jordan was the greatest basketball player of all time and then something about the baseball player Mike Trout and Teslas and Elon Musk and then you're an idiot and you're an asshole and you don't know what you're talking about, and just when I was wishing that one day we would have a conversation about -- let's say -- the greatest living poet or how much better a film-maker Fellini is than Tarantino, Sophie had a large seizure that I just know was a result of the anger in the air and maybe even how boring her brothers' arguments can be (Sophie and I are the same about these things, I am certain, but she seizes instead of dying a little inside at the general clusterfuckery). I probably said as much, because now that they're 17 and nearly 20, I don't bite my tongue as often as I might have when they were younger. Enough is enough.

But here's the thing. Those boys jumped up and into action helping me to help Sophie, and I realized that I am, perhaps, the luckiest mother in the world.

White Elephants

Last night, the wind was whipping around the Los Angeles streets, cold for these parts. We had been at a white elephant party, a silly affair with beloved friends. Sophie has been good. She can't walk too well but she's seizure-free for the last ten days or so and is preternaturally alert.  Maybe even more but who's counting? I weaned her a bit more from the benzo, so who knows when the withdrawal seizures will kick in. I have also added CBDA to her regimen of cannabis medicine. Maybe she'll never have another seizure and live happily ever after. The boys helped me to bring her in from the car, and maybe it was a let-down from the party and maybe it was how difficult it is to maneuver her around (I mean really difficult despite her weighing only 72 pounds), but one of them had her and one of them worked on hauling the wheelchair from the back of the car and I fumbled with the white elephants and Sophie's bag and then the alarm and the door, and I heard Oliver say Hey Henry aren't you glad to be back from college? and there was rue in his voice and maybe it was the fuckery of the day, and maybe it was the wind but it gave me a jolt and everything everything that I am and made was wrapped in rue for as long as it took me to disarm the alarm and usher them into the house.

Listen to all, plucking a feather from every passing goose but follow no one absolutely, goes a Chinese proverb. 

How We Do It, Part LVII

 

 To engage your humor and your emotions, that’s quite a trick. I’d like to think that I’m able to do that, to keep the reader off balance—is this the universe of the comedy or the tragedy? or some unsettling admixture of the two?—to go beyond mere satire into something more emotionally devastating, and gratifying. If that ain’t art, I don’t know what is. 
T. Coraghessen Boyle 

Spin.

What we tell the siblings of the one with special healthcare needs, despite.

What we tell ourselves about the siblings of the one with special healthcare needs, despite.

What we tell one another about the siblings of the one with special healthcare needs, despite.

What others tell us about the siblings of the one with special healthcare needs, despite.

Spin.

What we tell ourselves

What we tell one another

What others tell us

1. You're really strong and developing your upper body strength! (lifting sibling's wheelchair into car)
2. They are learning resilience! (the countless times they had to leave parties, not go to parties, not go on vacations or otherwise "give up" normal childhood passages)
3. They are so compassionate! (which they've learned by watching their sister seize tens of thousands of times in their lifetimes)
4. They're learning tolerance! (enduring the stares of strangers in public for their entire lives)
5. They're tough as nails and fearless! (see #3)
6. Look how able he is at age three! (learns how to get into and out of a 5-point harness in a car-seat so that mother can attend to disabled older sister)
7. Your boys are so resourceful! (diminished attention at an early age from parents because they're otherwise occupied with disabled sister. See #6)
8. At least she isn't an obnoxious teenaged girl! (she's developmentally disabled and hormone swings cause hideous seizures but no discernible obnoxiousness because she can't talk)
9. You're so lucky that you can dress her in whatever YOU like. (disabled child is unable to make discerning choices and is basically stripped of all power)
10. She's made you who you are.

Dispatch from the Revolution: Cannabis Update and Contortions

New York City, 1996

to Christy

When Sophie got home from school today, I noticed that she'd once again not drunk much of anything. I gave her the afternoon dose of Charlotte's Web and then lay down next to her with one leg draped over her legs, my strong peasant left arm holding her left arm gently down and my strong peasant right arm wielding her sippee cup. I placed it on her mouth and spoke gently but firmly about her need for liquid and dripped a few drops in. She swallowed and then pursed her lips and sucked on the cup. I did this over and over for the next twenty minutes, all while listening to Oliver who was sitting in the beanbag chair in the window chatter about Teslas and the video of a brother and sister singing one of the theme songs to the movie Boyhood. At one point, my position became torturous when Oliver leaned into and over me to show me a video, and because I'm that mother who is aware of the needs of the siblings of the special needs kid, I simultaneously forced the Special Needs Kid to drink and craned my neck into an awkward position so I could respond appropriately to The Sibling. I might have even remarked on the absurdity of it all, and Oliver agreed.

Anyhoo.

I kind of want to back up here, because this post is supposed to partly be an update on cannabis. Sophie has now been taking the Charlotte's Web Hemp Oil at the higher ratio for a bit more than a month. We've also tinkered with the dosage and found something that is working for now. We're still not in the incredible spot we were last year at this time when Sophie's seizures disappeared for weeks at a time, but we might be close. The stuff works for her. We're also continuing the Onfi wean, and just as everyone who's ever visited here knows, the benzo wean is an ugly, ugly process. Today, I had a lovely and very informative conversation with my friend Christy who writes from Maine about her own struggles with her son Calvin's refractory epilepsy at Calvin's Story. As I walked the aisles of Trader Joe's, Christy suggested that the drinking and eating difficulties could very possibly be a result of the benzo wean, that forgetting how to swallow and drooling is a side effect of the drug and can increase when the drug is weaned. I think in that moment I got so excited and distracted that I threw in the chocolate babka and the chocolate cookies and the cinnamon bread, all of which this family does not need. So, later, when I got into my contortionist pose and coaxed Sophie to drink, I felt infinitely more patient with her and far less insane. My mind wandered to the time when Sophie was on another benzodiazepine, the hideous Klonopin and how it caused anorexia. My mind drifted to my helplessness then, how I watched her lose about 20% of her body weight and brought her to an interminable number of specialists who had literally nothing to say or suggest except for the eminent gastroenterologist at a prominent hospital who threatened a feeding tube. To make a long story short, I weaned her from the Klonopin, her appetite came back, she got into tip-top shape with the help of a naturopath and -- well -- here we are.

What's the point of all this? You do what you have to do. Light comes in through the cracks, even from as far away as Maine. I'm going back into Sophie's room to help her learn to swallow by coaxing a bit more liquid into her. Then I'm cutting a big old piece of chocolate Babka and listening to this:

"Science is More Than Equations or Experiments"

Last night a friend sent me a link to a video of a man telling a story as part of The Moth presentation at the World Science Festival last May. The Moth is a national storytelling platform where ordinary people tell extraordinary stories, on the fly, in front of an audience. If you've never heard of it, you should check it out. On the web page, the World Science Festival noted  In keeping with Moth tradition, all stories must be told within ten minutes, without notes. Their stories are a reminder that science is more than equations or experiments; it is a window to humanity, a quest for understanding, and, often, a way of life. The participants included a geneticist who had discovered a breast cancer mutation, the White House chef, an archeologist, a neuroscientist and Brian Hecht, an entrepreneur whose story of planning his bar mitzvah was brilliantly used to convey his life as the sibling of a brother of a boy with severe epilepsy damaged by a vaccine.  

I so needed to hear this, particularly after another bruising incident with people who call those of us with more measured responses to vaccination dumb-assess and immoral.  Hecht's performance is particularly poignant as well because it recounts his own coming out as a gay man. It's about caregiving and the incredible burdens that some are called to bear. What it says about our very human need to control is a profound reminder. I won't expect that those who would call others dumb asses would watch it and be changed, but you never know. In the meantime, I feel affirmed, if not devastated. Thank you, Jill, for passing this along to me.

Post Gratitude

The weekend passed in a blur, really. The boys, Sophie and I drove up to northern California and met my parents at my aunt's beautiful house near Palo Alto. My aunt is very old and very frail, and of the four sisters, only the youngest (my mother) and oldest (Aunt Yvonne) are alive. My Uncle Charles, who lives in Mississippi is also quite old and fragile. My own parents are still so vibrant, and I know that I take this for granted. Our relationship has its ups and downs, but I'm so grateful for their active presence in my life, for their support and for their love.  There's a terrible melancholy in leaving them, seeing how tied they are to my children and my children to them. The relationship between grand-children and their grand-parents is truly a love affair.

I felt grumpy over most of the weekend, precipitated, I guess, by the near 24-hour care of Sophie. I haven't traveled with her in years, and I know why. I had to be vigilant nearly all night because she doesn't sleep well and would have gone careening off the bed if I weren't there to wrestle her back down. It's difficult to not miss what I insist on calling a normal life when I'm out and about with Sophie. You must know what I mean.

I'm filled with a deep gratitude for my boys, Henry and Oliver. They have never lived a normal life, either, yet they help me instinctually and uncomplainingly. I have worked hard to not let them think they are responsible for taking care of their sister, but the older they get, the more understanding they are toward me, to the strains under which I operate. Sometimes I wince at their aide, wishing that it didn't have to be so. I struggle with that old cliche that well-meaning people dump on us. They're learning such compassion! I worry that one day they'll be on a psychiatrist's couch, wailing about their stunted childhoods, their stressed-out mother, their sister who demanded so much attention. Those thoughts make me falter on the tightrope where I've balanced, for the most part, for nearly twenty years.

It is what it is, is another cliche. I can't do much better.

Other than the Night From Hell, though, Sophie was pretty good. She had few seizures and really enjoyed riding in the car up to northern California and then back home. However much I struggle against it, her identity and mine are entwined. When I surrender to that fact, I really do feel bathed in light, filled with gratitude for having the honor to care for her.

Sibling Story: Meet Dylan and Her Brother Bear

A good friend sent me the following short essay written by Dylan, an 11 year old girl whose 8 year old brother has autism.  The essay accompanies an appeal for donations to the upcoming Autism Speaks walk in Los Angeles. Siblings of those with autism and other developmental disabilities are sometimes lost in the shuffle for obvious reasons. Statistics indicate higher rates of depression, anxiety and other mental health issues for siblings of the disabled, too. It's something most of us who extreme parent are painfully conscious of, I'd venture to say, every single moment. Those of us who parent "typical" children are often told that they will grow up to be more compassionate because of the relationship, and while I find this somewhat comforting, I subscribe more to the who the hell knows how we all turn out mode of thinking. That being said, I found Dylan's essay so profound, moving and authentic that I asked whether I could share it here. This is an extraordinary child, a sibling of another extraordinary child.

My little brother is autistic. It doesn't bother me much. He's different, but in a way, just the same. I don't ever find myself wishing he wan't who he was. I would not be myself if he was someone else. My parents say they were devastated when they were told that he was autistic. I most likely wondered why they were crying. What about this was bad? Of course, I was too young to understand. I didn't notice he acted somewhat different than others until I got older. One way I could tell was because some people stared at him, or gave him strange, sometimes rude looks, and some people still do. Not many understand. Luckily, my friends have accepted his differences, and are able to have nice conversations with him, despite his disabilities. 

We like to play together, my brother and I. Sometimes tag, hop-scotch, hide-and-go-seek, or any game that siblings enjoy. We have a great time. It is within these moments that I realize: he is not at all different from anybody else in the world. There are many stereotypes that claim that anybody who is different is bad. Back in ancient Greece, the government would leave children who were weak or different out far away to die. It is not only wrong that different is bad, but the way they are using the word "different" is wrong, too. Technically, nobody is exactly the same. There is no "normal" human being. Everyone is different.

There are some things about him that annoy me, some things that make me laugh my guts out, and some things that just blow my mind away. It's annoying when he throws tantrums (which is rather often), and when he hums and moans for no reason. Well, maybe, there is a reason, just one that none of us know of or think is particularly important. It's also not that pleasant when he breaks things. I feel like he only ruins my stuff, but I'm sure I'm wrong. And when he pauses and rewinds movies when I'm trying to watch. But, it is very funny when he sometimes says sentences or words incorrectly. "Come for here," or "I was born until 2005." "Yesterday, for longer time ago," means a while ago, or sometime in the past. Every once-in-a-while, he'll say to us, "What the fu-heck?" He used to call the ocean the "ochin", and tells my pregnant aunt, "You have a full tummy." His enthusiasm is hilarious, too. It's like putting a thousand exclamation marks after a sentence. Even though it makes me angry, it cracks me up when he scolds me. "If you don't do homework, you get no [devices], Dyl-wan." I keep telling him he's not in charge, but I don't think he will ever stop scolding me. His memory is amazing. He can easily memorize addresses. If he ever doesn't remember, he'll ask, "What's that's number for?" Dates are also very easy for him to remember. His drawing skills are definitely incredible. 

If a cure for autism was ever created, I would refuse our offer. My brother is the best brother anyone could ever ask for. I would never change him for the world, but I know I will change the world for him.

-Dylan

If you would like to join us on walk day, please click the link below and search for Team Bachman:

www.walknowforautismspeaks.org/losangeles

I

Chickadees

My chickadees

My friend Michelle Wolf wrote a great piece today over in Jewish Journal, highlighting a terrific blog called Sibs' Journey: Broadening the Narrative. Here's what the three young college students have to say about their summer project:

We are three college students embarking on a cross country journey this summer to learn more about what it is like to be a sibling of someone with special needs.  We plan to interview siblings of individuals with several types of developmental disabilities.  The age range of  interviewees and diagnoses of their siblings will vary.  On our journey around the United States, we hope to collect more information and narratives about how living with a sibling who is neurologically atypical (e.g., having autism, Down’s Syndrome, or any other type of intellectual disability) affects the social and emotional development of the sibling.

I've been lying on my bed in a laundry and post-having-to-give-Sophie-rectal valium-haze, reading these posts and have alternately smiled and cried through nearly all of them. This section really got to me, of course. Here's an excerpt from Our Greatest Cheerleaders:

In an effort to make sure our views are completely clear, we want to provide a page that focuses on how incredibly passionate, strong, brave, selfless people our parents are. Though this blog puts a strong emphasis on a sibling’s role in a family, we in no way want to denote the merits of which we commend our parents.

There's also this, written by Claire, a sophomore at Princeton and one of the trio who author the blog:

Then, slowly but surely, I started to discover other people who were also playing the role of the “normal” sib. These people “got me” more than even my most well-meaning friends. They allowed me to have a space where I could freely talk about how I felt about my family and specifically my relationship with my brother. As I have gotten older, I have become more and more interested in what we as sibs have in common. I started to see the potential for a new narrative about disability, coming not from parents or doctors or psychologists but from sibs like us. 

It's important reading and watching (videos included), and I hope that you all will do so!

Thank you, Ellie, Renee and Claire. What beautiful, intelligent and strong women you are.

Happy Easter and a Sibling Story, in the Vein of Jesus Wept

We decorated.

We glared.

(at our brother while coloring eggs)

We threw.

(our brother's shoe, where it miraculously wrapped around a branch and got stuck)

We yelled.

(to get that shoe out of the tree, immediately)

We tried.

(over and over with a basketball, to get the shoe out of the tree)

It stuck.

(the basketball, miraculously, in a fork of the tree, above the shoe)

We climbed.

 (the tree) 

We screamed.

(the mother did, while the boy climbed)

We retreated.
(The mother went inside)

We succeeded.

(We defied gravity, used an orange picker)

Beautiful

(He looked, despite the shenanigans)

Staggering Abundance

Irish Sea Cliffs - via intangibility.com

So, it "rained" yesterday in Los Angeles and today is glorious. The sky is impossibly blue and the sun is warm. When I traveled east along Venice Blvd, I knew the beach was behind me, only five miles away, and the mountains ahead were dappled with snow, crystal clear behind the glittery skyline.

That's why we pay the big bucks to live here, reader. Just in case you thought otherwise.

I woke this morning to a beautiful email from one of my oldest friends, a friend who lives by the Irish sea with her little children and Irish literature-loving professor husband. I'd copy the whole email here, but that seems weird. Instead, I'll tell you that her words were like bobbing buoys in the ocean at my back, turning my thrashing in cold to a calm and lazy, stationary float. Thank you, Missy, thank you.

Those buoys have been evident everywhere I turn these days, but Missy's email made me realize that I must recognize them -- and praise what appears to be staggering abundance in my life. I locked eyes with a green-eyed woman named Morningstar during a Tantric meditation in my yoga class on Monday and floated out of it restored. Thank you, Morningstar. A writer friend responded to my cabinporn post by offering me her own cabin near Yosemite whenever I'd like to get away. Thank you, F, thank you. Someone told me about a parenting book that addresses sibling squabbling. I immediately downloaded it and read the first few chapters last night. While I generally hate parenting books (don't get me started on the latest French people make better parents thing), those few chapters were like reading a script that someone had written for a reality show about my boys! Thank you, Anonymous, for this tip. Thank you. The mysterious Radish King, who's also a published poet -- an incredible one -- wrote me and Sophie a poem. I'm not sure whether to publish it on this here little blog, because it's so amazing and powerful and wild that I feel certain the whole blog would go up in a burst of flame and I'm not ready for that. Thank you, Radish King, thank you. Another friend emailed me about a possible job opportunity that would fit my schedule perfectly and seems almost an embarrassing answer to my prayers to the universe for prosperity. Thank you, M, thank you.

Alertness is the hidden discipline of familiarity.

The stairs are your mentor of things

to come, the doors have always been there

to frighten you and invite you,

and the tiny speaker in the phone

is your dream-ladder to divinity.

from David Whyte's poem Everthing is Waiting for You

Boys

As you know, I adore my sons. They are truly knights, warriors and sweethearts in nearly every way. With each other? Not so much. Their squabbling and fighting drives me nuts, drives me to nearly cursing (but I don't), makes me want to run for the hills with poetry, think about military school (for them), and wonder why, why, why are boys so aggressive and simple-minded? I just sat them down in their bedroom (they share) and hollered at them for:

1. letting horseplay on the trampoline degenerate into spitting (both of them), screaming (both of them), crying (the younger one), laughing hysterically (the older one)
2. banging on the front door with a broomstick in a frenzy (younger one)
3. dissolving in a puddle of condescending laughter (the older one)
4. saying he started it one too many times

Would I prefer the clever, diabolical and mean machinations of the female mind that my friends with daughters talk about? Sometimes. I'm crafty and witchy/bitchy enough to go head to head, I think, with any girl. I grew up with sisters and know what fighting with one is all about (thanks, Melissa, for schooling me in sibling strife). I think it's the primitive nature of the boys' fighting that gets to me. It's so physical and annoying -- and usually stupid.

What comes to mind is the great children's book No Fighting, No Biting by Else Holmelund Minarik and illustrated by the great Maurice Sendak. Here the siblings are brother and sister, but I identify with the older sibling and her growing irritation.

Reader, how do you handle sibling bickering?

Special Needs Sibling Saturdays

Varda, of the wonderfully named The Squashed Bologna: a slice of life in the sandwich generation, features me on her blog today for Special Needs Sibling Saturday. The post is titled "Hilarity and The Mermaid's Brothers."

Please hop on over and check it out. We love comments, too!

Popcorn

The other night I took the kids to see the homeopath in Santa Monica. We had a 5 o'clock appointment and rather than battle the west to east traffic, instead of driving home we went to see Despereaux, the new animated children's' movie. I haven't taken Sophie to the movies in ages -- she's generally really antsy and uncomfortable in them, makes a lot of humming noises (mmmmmmmmmmmmm)and just doesn't appear to enjoy them. But it had been a really long time, and I thought this one wouldn't be the frantic, frenetic spectacle that so many kids' movies are these days. I had read the book to her and to the boys when it first came out and knew that it was a sweet story, and the previews made it look beautiful. This was what I told myself along with the requisite it will be nice to go to the movie with all my kids, not just the boys. Something normal. And it was fun, in the beginning, before Sophie started to get restless and started humming her monotonous mmmmmms and wiggling around and then I just got up with her and walked out to the lobby for a while. The boys were avidly eating popcorn and watching the movie and barely paid attention when I told them that I'd be right outside.

Sophie and I walked up and down the lobby for a few minutes and then she wanted to sit down on the floor, but I didn't let her. I thought that since she seemed tired, we could go back in the theatre. When we walked in and sat back down, she was quiet and I turned to watch the movie. Within seconds, though, Sophie stiffened beside me and began to have a HUGE seizure. The kind where she yells loudly, a guttural groan and stiffens and jerks. My impulse is to hover over her, protect her, almost wrap my body around the space that surrounds her. I think it's an instinct to shield her from enquiring eyes, and when I do it I am aware of those around me but I almost consciously deny them. I will everyone to disappear so that I can exist there for her and so that she can have her seizure and be done with it. I create a bubble of sorts or at least I do in my mind. For a brief second I glanced over my shoulder to my right, at the boys and saw their profiles illuminated in the movie light. They were what I can only call stuffing their mouths with popcorn, raptly looking at the movie screen. They didn't appear to notice, but it was only a second that I even noticed them and that is what I saw.

When the movie was over and we walked out, I asked them whether they knew Sophie had a seizure. One of them said, "yeah, it was a big one." I asked whether they heard her groan and one of them said, "yeah, it was loud." I asked whether anyone else had heard and one of them replied, "yeah, everyone turned around."

I've been thinking about this for three or four days (through Christmas and the aftermath), feeling guilty that I brought her to the movie and that it somehow caused her to have such a big seizure, and feeling sad that we really can't go to the movies right now all together. But mostly what I'm wondering is this: are Henry and Oliver so used to Sophie's seizures that they are able to simultaneously know that one is occurring and that I'm taking care of it and therefore can continue to toss popcorn casually into their mouths and pay attention to the movie AND know that people are staring and looking? In the same way that I create this figurative bubble around myself and Sophie but their own?

Or are they just eating popcorn and watching a movie?