Thursday, November 13, 2014

My Greenlake in November


At no other time (than autumn) does the earth let itself be inhaled in one smell, the ripe earth; in a smell that is in no way inferior to the smell of the sea, bitter where it borders on taste, and more honeysweet where you feel it touching the first sounds. Containing depth within itself, darkness, something of the grave almost and yet again wind; tar and turpentine and Ceylon tea. Serious and lowly like the smell of a begging monk and yet again hearty and resinous like precious incense.

― Rainer Maria Rilke, Letters on C├ęzanne


Monday, November 3, 2014

pumpkin


We've had a full month: a pumpkin patch field trip, chest colds, school IEP meetings, lots of work travel for Erik, baseball, a halloween zebra, and the return of Seattle rain. I love this time between when school starts and when the holiday madness begins. 











Monday, October 20, 2014

His privileged life

Here was my pre-kid parenting fantasy number 124: Erik and I would pull our elementary-aged children out of school for a year and take a work sabbatical to travel the world, simply and mindfully, to show the kids what's what in the grand scheme of things and how privileged they are. The year would be pivotal, especially to the kids, whose views of others would be profoundly changed and softened.

Okay, that trip will probably never happen. Setting aside the logistical nightmare that it would be with a special-needs kid, there's the big issue that I don't think that my fantasized perspective shift would sink in for Soren intellectually. But I'm well past the stage in which I feel like Soren's life is a tragedy because I don't "get" to do the parenting bucket lists items that I had dreamed about. This life is our Normal, and sometimes I forget that it's so different from everyone else's normal. And you know what? It's a life full of privilege, even, and especially, for Soren.

Yes, he has profound autism, anxiety, a sleep disorder (now on hiatus!), some funky GI things, and behavior challenges. But not a day goes by that I don't remember that he has so much that makes his life and our lives with him just so easy. We don't need an (elitist and expensive?) trip around the world to understand this. It's ridiculous just how much he was just born into (and we his parents were born into). We've done nothing to deserve this. He's done nothing to deserve this. But he is privileged. And his autism just magnifies this privilege. He is:

  • White. African-American children tend to be diagnosed years later or are often misdiagnosed.
  • Male. If he were a girl with autism, he probably would have been diagnosed even later, since providers know more about males with autism and therefore tend to look for those male-specific symptoms.
  • In a financially comfortable family. We can afford treatments that aren't covered by insurance. For example, Soren's language therapy--using an iPad to communicate, which is a critical skill--doesn't get compensated by our popular insurance plan because he's "aged out" of that benefit (at seven!). 
  • North American. Most research on autism is focused on more affluent western or Asian countries. Treatment is often scarce in developing countries, and there may be a more prevalent public stigma about the disorder.
  • In a stable home life. He's not homeless, a victim of abuse, or impacted by substance abuse. He lives with two present parents. We are all physically healthy.
  • Supported fully by an understanding family and community. He has an extended family that gets it, and a community that (generally, at least) doesn't blame him or us for difference.
  • Living in an urban setting. We have ready access to evidence-based autism resources. We don't have to drive an hour for therapy.

Yes, autism can be challenging for us, and for him. But I've seen what happens when you don't have this privilege that we have, and disability can be so much more impacting and even devastating. I've seen a single mom with cancer struggle to keep up with her autistic kids. I've seen parents with what is probably untreated mental illness try to manage complex behavioral outbursts and feeding disorders in their autistic kids. I've seen a little boy ceded to a state group home because his parents just couldn't handle his profound autism. I've seen so, so many kids who don't get private speech and occupational therapy, let alone enriching summer programs--kids who could really flourish if they had a little extra support. There is simply no money.

We are lucky, and I am increasingly disturbed by this privilege. This parenting journey is hard enough with all that we have. I grieve for the families whose lives are so much more difficult, through no fault of their own. I am furious at medical and educational systems that don't take care of our most vulnerable people. 

If Soren were typical, I wonder what kinds of conversations I would have had with him about his privilege. In my fantasy parenthood scripts, I imagine that I'd regularly tell him and show him how his privilege is completely unearned. We'd have dinner conversations about what his obligation is to his community because of that privilege and the damage it has exacted. There would be weighty decisions about what school we'd choose to make sure he operates fully aware of the diversity in his own city. And then there's that trip around the world. 

But none of this happens. Our conversation about privilege can't happen with Soren.

At least I don't think it can. Maybe, though, Soren is getting a message about how to treat people. About how being an Other feels. About never, ever making assumptions about a person's abilities or thoughts or feelings. Assuming best intentions. Seeing someone as an individual, not as a representative of a community.

I wish I could explain to him more about his fortunate and unearned place in this world. But maybe he already knows so much more than I do about privilege, expectations, and being an outsider. I continue to be humbled by how much this child teaches me about my assumptions.

Friday, August 29, 2014

Comparing

A child of one of my friends plays chess. He's seven.

Soren's cousin paddleboards. At seven. Another cousin learned to ride a bike at two.

At seven, Soren is making progress in putting on his socks. He can almost trace the letter S. He's sitting at the table to eat. And I am so proud of him.

What's interesting to me about knowing these tidbits about others is that I feel absolutely no resentment or jealously. These are just facts about other kids. For some surprising reason, I don't immediately jump to comparing and contrasting other kids with Soren.

Is this equanimity just growth as a special needs parent? Have I just moved along in the journey, well past grief and then comparison, to a sort of peaceful mindfulness? Perhaps. But what strikes me is that I can be this non-judgmental about Soren when this lack of comparison is so foreign to me.

As long as I can remember, I have judged myself and oriented myself in comparison to other people. Other people helped me know where I stood in the world, and whether to be proud (college grades) or ashamed (high school PE) of myself. My self-image is totally wrapped up in comparison. How far off the norm am I? Once I find out, I know how to think of myself.

I got good grades in high school and college. But it wasn't because I had sparks of understanding or creativity. It was because I figured out what the other students were doing for their term paper, for example, and I did just one notch better. I knew how to do that paper only by comparison. There was no passion about the subjects, just a sort of formula to do well. Is it any wonder that I remember very little about my college classes, even in my major?

But with Soren, I compare him only with where he's been. There is no timetable. There are no typical developmental milestones. I've thrown these out, along with the brand-new but outgrown underwear that Soren is just not ready to use.

And what fun it is to have pure joy and pride in something Soren can do. It's just about him, not about how he stacks up. He can put on his pants now! He ate a bite of chicken! He went to school without crying!

Man, I wish I could experience this independent view of myself the way I view Soren. Could I give a speech, write a blog post, dress for a party without comparison? And what if this freedom allowed me to make grander life plans that I'm so hesitant to make because I don't have models of such activities?

I'd love your feedback about this comparison issue. And I'm going to really work on not molding my thoughts in response to yours.






Wednesday, June 11, 2014

coffee man

For years, he trudged down our street. Tall, paunchy, and stooped, he walked like a two-year-old walks: a little too much scuffing the sidewalk, and as much side-to-side movement as forward movement. As if he was begrudgingly following his mother. But he was always alone. I couldn't say how old he was. Definitely past his 20s. But 30s? 40s? 50s, even? His idiosyncrasies made it hard to tell.

He walked to get coffee. Every day. I saw him at the local coffee shop, both hands around his paper cup. I was never around when he spoke, but he must have told the barista his order. He sat in the same chair at the same table, looking at something invisible a few feet in front of him.

I watched him with a disengaged bemusement, perhaps even a little disdain. How odd he was. How could one man walk so slowly? Was that paunch getting bigger? Was it safe to walk so near him? I remember crossing the street to avoid getting too close to him on the sidewalk.

We moved away from that area three years ago. But today I stopped in the grocery store near that neighborhood. I ordered an iced Americano at the in-store Starbucks. And then I saw him at the small set of bistro tables. The same glassy stare, the same sloped shoulders, the same gripped coffee cup.

But a different flash of recognition startled me. He's now familiar to me in another way. I see it now: He is probably on the autism spectrum, perhaps with some intellectual disability. This could be a glimpse of Soren's future.

I surprised myself by how different my view of him became in a split second. I wasn't filled with disdain; I felt compassion, even a weird camaraderie with him. And I felt ashamed of the way I viewed him for so many years.

I'm mad at the person I was. She was judgmental and haughty and as much of a bully as any seventh-grade tormentor on the school bus.

People like this, like I was, are probably all over my community--in stores, Starbucks lines, watching out their homes' picture windows. They stare, judge, maybe internally mock my Soren. They wonder if he's violent and cross to the opposite side of the street. I can feel their judgment. I pray that Soren doesn't pick up on it.

And then I know there are others in our community who take the time to see us--not just the flapping, the wiggly body, the grunts of protest as we wait in lines, but the whole picture. They acknowledge us as a family that might be having a hard time navigating public spaces, or maybe as just a family that is a bit different. They may feel pity or maybe just empathy, but their first thought isn't disdain. I know that there are these kind people because once in a while I see their smiles or knowing nods. I can feel the difference; I know they see us, not just our quirks.

Coffee man, I'm so sorry about the old me. I see you now. You must live close to here. I bet you like coffee as much as I do. This coffee shop makes the best cup, don't you think? Man, you're tall. I have a little boy who is tall, too. Maybe he'll be as big as you some day.

I left the grocery store with this plea, to no one in particular: Please, dear stranger, be bigger than I was. Be better. See our children--and the adults they will become--with gentle eyes.

Tuesday, May 13, 2014

Just a snack

A vignette from an after-school snack on a sunny day. Sometimes I forget to notice how beautiful this boy is.














Sunday, May 11, 2014

Getting to solutions, insisting on the means

Years ago, when Erik and I were both working way too much, we had a messy house situation. Neither of us had the time or desire to clean in our infrequent free time. You should have seen the kitchen sink. Oh wait--we couldn't.

Erik's solution: hire a cleaning person. As soon as he mentioned this, I hated the idea. Oh, it was probably because it came wrapped up with issues like gender roles, money stuff, time management. But I think the main reason the idea was offensive was because it wasn't my preferred method of achieving a clean house. I wanted us both to do the housework equally. In my mind, this would have shown the ultimate love and respect from my husband while also resulting in a clean house.

In the end, we hired a cleaning person. I gave up my fantasy about a 50-50 weekend cleaning partnership because the real problem was the dirty house. It wasn't (and shouldn't have been) about my chores-as-respect hangup. Because I can't both bitch about the problem and then reject the clearest path to its solution. I can't choose the method of getting to the result if I want to claim that the result is what I'm truly seeking.

This issue has cropped up again for me, this time with Soren. He's been getting floppy, resistant to my dressing him or combing his hair or brushing his teeth, and this sometimes leads him to some aggressive hair-pulling and scratching. I find myself getting so mad about this. I know that his aggressive behavior is probably about something other than his disliking me, but my gut reaction is to be hurt. I can't believe after all nurturing, dealing with bodily functions, and just general, well, parenting, that he can be so aggressive with me.

I know that preventing the aggression is my ultimate goal. But I want Soren to feel contrite, too. I want him to feel something like regret or shame or even a little pain about consequences for pulling my hair. Again, I want to dictate the path that we take to get to the solution. And you know, that's just not fair. Because the path involving his regretting his behavior is not the path that's going to lead to eliminating that behavior. As many parents of autistic kids will tell you, the whole idea of a time-out to reflect on undesired behavior is utterly lost on their kid. (And some critics question the impact of time-outs in general.)

Eliminating the aggressive behavior requires me to figure out why Soren is finding my managing his dressing, tooth-brushing, and hair-brushing so taxing that he responds the way he does. I have a feeling it's about control, especially of his own body, and maybe some sensory overstimulation of some sort. It's my job to figure out the cause and how to either reduce that stressor or help him gain the skills needed to deal with that stressor. My hope for him to feel crappy about hurting me should not be part of the equation. It's my fantasy, and I'd feel a great sense of resolution if it could happen this way, but that can't be part of the mix when it comes to parenting this child. And really, dictating the steps required to achieve a resolution with any person just isn't fair, is it? I'm learning this lesson very slowly.

Friday, April 25, 2014

Cabo break

We were lucky enough to spend a week in Cabo with dear friends, their two great kids, and Lindsay, our former nanny/therapist. It was such a treat to be with fabulous travel companions who are patient, fun, and great cooks. I'd like to write a bit more about the trip, but really, it can be summed up like this:

Erik: Swim, eat, drink
Jenny: Sleep, eat, drink
Soren: Swim, iPad, eat

And that's really all there is to tell. It was such a rejuvenating trip for all of us (aside from the flight down and the immigration line on the Cabo side, which I am willing out of my memory). What fun it is to see Soren so very happy. 

can't. stop. smiling.

Soren learned to do somersaults, even with his life jacket on.



The beach was a bit overwhelming. 

And there's that whole sand-eating thing.

When you need to decompress, try an iPad under the covers.





Wednesday, April 2, 2014

My take on autism awareness & acceptance

Confession: I've never understood autism awareness.

Today is World Autism Awareness Day, and there are a lot of blue lights flicked on and puzzle pieces being thrown about. You may have seen  blue profile pictures on your Facebook feed. But this day and this emphasis have always seemed short-sighted to me. Be aware of autism? OK, done. Lots of people know about autism. Now what?

Some autistic people and their families have altered this to be a day of autism acceptance. That's better. But still something about the term "acceptance" rubs me the wrong way.

On their own, without the commercial and feel-good baggage that we've tacked on to them, awareness and acceptance of autism are fine goals. But they are not enough, and I find a day dedicated to either one of them lacking and maybe even offensive. Here's why.

Autism awareness isn't sufficient, and it probably makes little difference in the lives of today's autistic people and their parents. So you're aware of autism--the statistics, the symptoms, the latest news stories? Good for you. This doesn't change anything for us.

I'm uncomfortable with the way Autism Speaks has co-opted this day as its most public-facing campaign because of what awareness really means to that organization. Its purpose is to make the public aware of the "public health crisis" that autism is (presumably to gain political and financial support for prevention?). Autism Speaks' Call to Action read just last year, in part:
"This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future." Puh lease. Spare me the panic and the life-is-over narrative.

I don't think that a so-called crisis has anything to do with current autistic children or adults as individuals.  A "crisis" speaks to prevalence numbers, trends, and costs to society. Cures. Prevention. Oh, and all the prenatal ethical issues that prevention brings up. You know what I'm talking about there, don't you?

I don't want or need a cure. Maybe because a cure is too late for our family, or maybe because I'm still not sure where autism ends and Soren begins. Maybe because I don't know what I would have done if I had seen an autism marker during Soren's amniocentesis. Maybe because it doesn't matter.

Autism awareness wasn't started to make the public aware of your child or my child and how we can make this a more humane place for them to live. It's not about how to include autistic individuals in everyday life or how to see their unique strengths. Until recently, Autism Speaks' version of autism awareness used scare tactics ("1 in 88 can't wait!") as way to encourage funding, and that funding goes primarily toward research--future stuff, not ways we can make a difference today.

So, many in our community have broadened this awareness to be acceptance instead. At first this seems like a great move, one focused on present autistic individuals and incorporating them into society. But is it really our place to accept them? How condescending--apparently it takes acceptance by the non-autistic world to grant a place at the table to autistic individuals. What if we had a day to accept African Americans? or female pilots? or lesbians? Do you see how this is paternalistic? Who says we get to be the ones to deem other people acceptable? How pompous.

And what does acceptance mean, really, without context? Accepting the existence of someone else doesn't mean working to integrate them fully into our community. Just accepting African Americans isn't the same as ensuring they have full access to education, housing, and workplace advancement. Just accepting the existence of female pilots doesn't mean that you don't make a snide remark to your seat mate when you realize a woman is flying the plane that you're on.

We need a day, an effort that goes one step beyond acceptance. I don't know what that word is, but it looks like making an effort to include autistic people in all aspects of our community life. It's making accommodations when it can make life easier for a huge part of our population. It's about making education and job opportunities a priority. It's about planning now for housing issues for autistic adults and autistic seniors.

So that's why awareness and acceptance are not enough. We can do better. And here's what I do want; here's what a day dedicated to autism could emphasize, just to start:
  • Softening of your heart. Yours. And your kids'. But it starts with you. I want you to embrace the quirk, the anxiety, the difference that you see. Actually, I'd love to see a gentleness toward all difference. And this means putting pity--for autistic individuals and their families--on the back burner so that you can see people in all their dimensions. It's fine to feel compassion about the difficulties that autistic individuals and their parents face. Yes, this road is daunting. But remember that we love our children as they are, and we want you to love them that way, too.
  • Funding for and focus on special education--groundbreaking, out-of-the-box thinking about what our kids need, how they learn, and how they can be integrated into our schools. And that's what we want for all our kids, isn't it? Too often special education is driven by lawsuits or threats of them. I'd love to see school district administrations lead the way in making educating our most vulnerable children a priority. (Just so you know: In Seattle, 14%+ of public school students are eligible for special education.) 
  • Funding for long-term care, occupation, and housing of our children--and as those children become adults and senior citizens. This would mean that parents don't have to worry about trusts and wills and faking that our child is destitute so he can draw from state and federal funds when he's an adult and/or when we're not longer here. 
  • Respite care for parents, paid for by the state in a timely manner. (Washington's DSHS has a significant waiting list for its individual and family supports program.)
  • Reasonable wait times to get autism diagnoses. Wait times are typically 3-12 months long in the Seattle area (!).
  • Self-reflection. How are your judgments about acceptable behavior, valuable employment, and what's normal in general impacting others? 
Maybe we can change this day to Autism Advocacy. Or Autism Action. That's what I'll be working for.

Thanks for listening. I welcome your feedback on this issue.



Wednesday, March 5, 2014

The group at the mall

“Invisible threads are the strongest ties.” 
― Friedrich Nietzsche

I knew the moment I heard him that the boy was autistic. Was it the cadence, the sing-song quality to his voice? Did I even hear any words, or was it just babbling? I don't remember. I just know that it sounded so much like Soren. I knew in an instant.

I was at the mall today (don't judge). There was a group of ten or so people: special-needs kids who were maybe 10 years old and their aides. They were having lunch in the food court of the mall. And I knew right away that this was a group like Soren will be in in a few years. Probably from a self-contained classroom, with quite a few aides and lots of happy but decidedly different kids.

I'm impressed that this was the destination. It was chaotic: lots of people, stores, lights, new experiences. Way too many mall-walkers. One young man in the group really needed to pace, so his aide followed him around the perimeter of the food court, holding his hand, looking like she does this stress release with him a lot.

I was shocked that I found myself staring at the group. Yep, staring. I couldn't believe it either. I can't stand it when strangers stare at Soren and me when we're in public places and maybe making a little too much unconventional noise. But I was staring in a different way--with recognition.

I felt immediate camaraderie with this group, like these were my people. It's the same way I feel toward Soren's classroom peers. It's almost maternal, this affection for the kids that I see in his class every day. There's such a soft place in my heart for them; I swear I'm their favorite aunt. I wonder if this is what their teachers feel, too.

Of course I stared in defensiveness, too. I was just waiting for some random mall teenager to make a snide comment. In my mind I dared someone say something or practice their best eye-roll. I was ready with a little condescending lecture (which didn't need to happen, thank goodness).

And I stared out of curiosity, frankly. I was so intrigued at what Soren and his cohort will look like in a few years. Ah, so this is what a 10-year-old Soren will be like. The tics and sounds are a little more awkward, perhaps, to others. The difference is more obvious. That was a little sad to me--the fact that my child will be that much more noticeably different and subject to ridicule (or just staring). But the similarities to Soren and his peers now are striking. The kinetic energy, the sounds, the rhythm of these kids are just like Soren's. And frankly, I don't have many chances to see what older Soren will be like. So I stared. Or rather, I tried to stare without being noticed.

I wondered what I would have said if one of the aides caught me staring over my Americano. Maybe "I have a kid like this too"? Nah, that sounds offensive and condescending. "I get it"? Perhaps. Or maybe just a knowing glance would have covered it. I think such softened eye contact would mean everything to me when I'm in a public place with Soren, being brave and feeling out our differences.

Friday, February 14, 2014

Shards of anxiety

Anxiety is love’s greatest killer. It makes others feel as you might when a drowning man holds on to you. You want to save him, but you know he will strangle you with his panic.
— Anais Nin

For two days this week, Soren's anxiety has been rubbed raw. He's had meltdowns in the mornings like I've never seen; "meltdown" is not even the right word, since it sounds like a kid's naughty response to not getting what he wants. This is a panic attack, with deep sobs and gasps and stomping of feet. He is deeply anguished by or terrified of something, and I don't know what or why. Like his anxiety was in the past, this has come out of the blue. And he's inconsolable. He seems to want to be totally alone in his pain.

Here's what I'm doing wrong about it: I'm panicking. I'm going to the worst scenario. I'm assuming this will be a constant. And I am taking on his anxiety as my own. My inner dialogue goes something like: 

i knew it would come back. so much for his easy transition to school. why can't i figure out the cause of this? i'm completely ineffective as his parent. this is awful. my heart is racing. god i feel like i'm suffocating. 

I know I look shocked and stricken when he's in the midst of an attack. It's because I feel his anxiety viscerally. It's become mine. I notice I'm not breathing. And oddly, because nothing I do seems to help (and talking to Soren often exacerbates his crying), I have moments of complete dissociation. 

How do I balance empathizing deeply with his pain while not becoming enmeshed in it? How do I care for him without letting his anxiety become mine, too? Because of his challenges, I've always felt like part of my job is to speak for him, to interpret what's happening to him or what he may be thinking or feeling. Another special needs parent friend says that she feels like she is her child's executive function. It's hard to unlink ourselves enough to see where we end and our children begin. And it's so hard to work on helping Soren with his anxiety without over-empathizing. I need to remind myself that this is not my anxiety. I don't need to feel all the pain for him.

As a footnote, today was a good day with only a few minutes of quiet crying. So maybe this was just a fluke. But I'm still thinking about ways to keep my emotional health if and when this crops up again.

Wednesday, January 8, 2014

What I learned this Christmas

We had a wonderful, busy, crazy, family-filled Christmas break. Erik and I flip-flop which family we visit for Christmas each year, and this year was my family. After a bit of a late start because of car issues, we ended up staying four nights in my hometown in Idaho. Both sisters and spouses and all the grandkids were there (6 kids 6 and under!).

Overwhelm was on my mind. We overdid it with Soren at Thanksgiving. I misread his hyperactivity as joy, when I think it was a sign of overstimulation. The days after the holiday were rough for Soren, with increased aggression and a bit more crying than usual. I vowed to take better care with Soren's arousal level for Christmas, knowing that potentially it could be really overwhelming, with tons of family, no routine, lots of demands (eating with others is a big deal right now), and his parents' attention shared with cousins.

But I think we did some things right, and if we missed a few things, we learned some good lessons. Here's what I'll take away:

1. Staying in a hotel with a pool while visiting extended family is worth the cost. There's room service and quiet time. And a POOL. Have I mentioned that Soren loves swimming? Erik took him in the pool at least twice a day, which really helps his moods and sleep.

2. I tell people I need to give Soren a break by sometimes leaving a social gathering early (which is true), but sometimes I need breaks, too. I'm a true introvert in that regard, so downtime helps us both recharge for more social time. I'm in charge of identifying signs of overstimulation in my child, but how often do I watch for similar signs in myself? When I've started acting ornery or sarcastic, or if I'm zoning out on conversations or relying a bit too much on that wine glass, then I know I've hit my limit and it's time to recenter with a bit of alone time. Having a gym at our hotel was a perfect refuge (and a great way to counterbalance my mom's amazing cooking).

3. We are getting great about thinking outside the box for gifts for Soren. I need to continue to emphasize to everyone how loosely we define "toy" for him. For example, food is something Soren will welcome, usually way more than a traditional, age-appropriate toy. (And really, wouldn't you rather get a box of your favorite chocolates instead of, say, warm socks or a tool or kitchen accessory?) My sisters and sisters-in-law are fantastic at finding nontraditional gifts for Soren. For example:
  • chattering teeth wind-up toy (a huge hit, as Soren is obsessed with teeth lately)
  • Slinky
  • squeeze toys
  • dinosaur anything (another recent obsession, perhaps because of the teeth factor)
  • a big bag of marshmallows 
  • exercise "peanut" ball
  • candy canes
4. My family is a riot. Here's a shot from our sans-kids Greek-themed dinner from last week (um, we're not Greek). There were surprise costumes, a reindeer trivia contest, a Greek god trivia contest, and delicious food and retsina. We crack each other up.


I hope your holidays were peaceful and just a bit ridiculous.

PS: Thanks to Daniel and Dad for the great pictures while our camera acts up!

Happy boy

Helping Soren open presents, with lots of help from the 18-month-old twin cousins.

Erik with one of our three nephews and two nieces (on this side of the family). He's a fabulous uncle.

Gosh, I love this one. Pure love.

 

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