A typical unschooling day, +autism

People are always asking what an unschooling day looks like. The answer of course is that every single one is different. And with autism? Of course every kid on the spectrum is so, so different. But here is one of our days.

The day could be said to start the night before. At night with just her dad my daughter relaxes. She watches movies and plays games, her dad reads her books or plays a board game, but most importantly she eats. Somehow she doesn’t fully wake up and calm down, settle into her hunger and feel comfortable, until about 8:30pm on the couch. She’s sometimes up past midnight, but gets two good meals in between 9pm and midnight and one-on-one time with dad.

Then she wakes up at 10am or 11am (which prevents us from doing a lot of younger kid library events or socializing. Just as well since those are often very stressful for her and involve a lot of travel and stress for 5 minutes of interaction).

Lately, she’s been afraid to walk on the floor of the house. This has been incredibly hard and we’re still working on it. I get up at 6am with the baby, so by 10am baby has already napped and woken up, and I hear her in bed upstairs calling for me. We snuggle and laugh and tickle baby, then I pick them up, one on each hip, and carry her down to the spot on the couch where she feels comfortable.

The next hour is quite tricky. Sometimes a bowl of oatmeal set next to her while she watches a movie is just the thing. Sometimes she won’t even respond to questions about food for an hour or two after waking up. She likes it if I can sit with her, and we play a game on the tablet together or watch a few movies. Lately it’s been the PBS kids WordWorld games, which involve all sorts of letter recognition and spelling. She’s been seriously interested in reading and can read a couple short words.

She usually eats a little breakfast, and warms up and starts doing acrobatics on the couch. That’s her safe space, and she manages to get quite a lot of physically activity doing headstands and jumping on the couch. The majority of days around 11 or 12 we head out, so I’m usually busy packing up snacks and diaper bags all morning. The other tricky part, and again this is where autism comes in, is that she may not relax enough to pee (since going to bed the night before) before we leave. Her doctor is not concerned about this, but the day is much better if she can go before leaving. So even when I’m packing I try to make things as relaxed as possible, while still attempting to be some places on time.

On this particular day once we’d packed up we made a quick stop for a donut “because I’m sad to leave my WordWorld game.” Then we swung by someone’s house to pick up some cheap used toys from a swap group, then swung by another friend’s house to pick lemons. Since the baby was screaming the whole way in the car, my daughter chose to stay in the car while I picked lemons. She used the quiet to make recordings of Raffi songs on her tablet and record herself talking. She covered her face while my friends said hi the first time, and I told her she doesn’t have to say hi if she doesn’t want to. When they said goodbye, she was happy to smile and wave at them.

Next stop an awesome park, where we met up with a friend on the spectrum. He was totally different in play personality, all over the playground and up and down and not minding the other kids at all. In the meantime I was carrying the baby and acting as my daughter’s “lifeguard,” helping her when a kid got within 6 inches and she screamed in fear. But she still had fun, climbing and searching for treasure and truly enjoying the water sprayers, which is the first time in a while she hasn’t been afraid of them. It didn’t seem like she and the other kid would play, but then we ended up on the swings together and she was cracking up as he kicked of his shoes while swinging. He enjoyed the attention and was telling her jokes, and she’s happy to have a friend.

Then dad met us for a dinner picnic, but after two restaurants were closed we ended up at a different park waiting for him to pick up food. We had asked her each time a restaurant fell through if she still wanted to do this dinner picnic or go home and she said do the picnic. I’m glad because it was lovely. She danced around a tree and rolled down a hill and played with the baby. She ate very little but had so much fun.

On the way home she fell asleep, but woke up as soon as I brushed her teeth thinking she might go to bed, and stayed up again with her dad, finally eating two sandwiches and playing WordWorld games some more and reading books.

There was no coercion in this day, there were no screen time limits, there was no yelling. I probably got annoyed trying to get out the door but only because I had told friends I would stop by their house at a certain time. There was exercise and being outdoors and learning and socializing. There were probably more academics than a typical preschool day because she’s so invested in reading right now. The exercise involved tons of sensory twirling and rolling and swinging and water and turning upside down. The socializing was coordinated by not pressured–if the two kids who we wanted to be friends didn’t choose to play with each other, that was okay. And eventually they chose to play with each in their own way, their personalities clicking together in this unique way of telling and enjoying jokes. There was family time–my husband and I even got to talk to each other over dinner! And bonding time with baby for everyone. It was a beautiful day.

Recently I’ve been on a couple unschooling forums where there are heated arguments about screen time. That’s why I’m writing this, because I think the arguments over studies or about whether this particular ASD kid should or should not have limits miss all of the nuance and rhythm that makes unschooling work. Unlimited screentime with autism at such a young age is controversial, but we’ve been doing it for a couple years and it’s a tool. It helps her calm down, eat, have fun, and learn. It’s a piece of the day.

I think good unschooling advice is to look for the fun. But more than the unschooling parents of neurotypical kids who make fun the goal, my goal is to lessen stress. Having fun is always there, but to get to the fun we need these broad transitions, we need a couple shows in the morning, we need to be in agreement about what’s next, we need the tablet in the car if I want to stop and talk with my friends while I pick lemons. If we’re going to do two stops for errands that involve talking to people we need a relaxed morning and a tablet in the car and a donut along the way.

I know the rhythms of my child and my primary goals are fun and relaxation, with the secondary goals of learning, exercise, sensory time, eating healthy, socializing, and time for me to talk to other adults. The way we meet these goals on a day like this is so distant from a day structured around school. This day would be shattered with school in the middle or heaven forbid early in the morning. Not only would the day be shattered, but I feel strongly that her reading and socializing would get worse. Sometimes when there’s a stressful incident–on this day an 18-month-old decided to play with my daughter and she’s terrified running away screaming that he’s chasing her–I hold her with tears running down her face and I’m so, so glad I’m always there.20160628_184422.jpg

 

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Going Out

My best day last week was the day we went to the beach and Costco. The day that found me a long gas line at Costco turning off the car so that I could pull my screaming infant out of his carseat and breastfeed him half in and half out of the car. The day I carried an 18 lb baby and 30 lbs of beach stuff then frantically tried to both supervise water play and keep the baby from swallowing fistfuls of sand.

My worst day was the day we stayed home. My daughter is currently afraid of the floor so she does not get off one small corner of the couch all day. Of course everyone tells me to just ignore her and force her to walk on the floor eventually, starve her or leave her alone. Aside from that being against our unschooling philosophy, I know she is truly terrified. She wants to visit her brother when I nurse him on a different chair so she scrambles across the room and leaps on me, gasping for air with her heart pounding.

I love her, I want to help her through this and we’re doing all we can–occupational therapy, drawing worry monsters, special shoes, pillows on the floor. But this is exhausting. I have a kid who isn’t potty trained exploding with energy on the couch, jumping and twisting and hanging upside down but terrified to move out of that spot, suddenly unable to do anything she used to do for herself–go to the kitchen and pick out snacks, go to the dining room table and draw, go to the other side of the room to get a toy. And I have a baby who never sleeps by himself, and if I don’t remain perfectly upright and bouncing with him in a carrier–no bending to change a kid’s diapers, no screaming from his sister–he won’t sleep at all.

Not to mention all the adult stuff I’ve had to give up–writing time (which I’m stealing in between shouts for “MOMMA!!!” and baby whimpers); dairy, chocolate, and soy because they irritate the baby; exercise because even with two parents at home we can barely handle it; cooking, gardening, having anything be clean, any project ever; movies (other than her three “not scary” shows), podcasts, or any kind of talking that makes my daughter scream “too much talking!!!”; and no time alone with my husband except once every six month dates or the rare 10 minutes the baby sleeps in past me.

The thing about going out is 1) I can carry and nurse the baby wherever, and doing so outside is much more pleasant most days. And 2) the ambient noise and wide spaces seem to calm everyone–the baby sleeps better, my daughter takes naps sometimes, I feel better. Finally, and most importantly, when we are out, I see that we have the world at our finger tips. We have the world at our finger tips in many ways at home, with internet and enough food and books. But when we are out the newness of the world is just enough to break my daughter out of her ruts, her fears. She maintains a safe space–her stroller with the shade pulled down–but there is the world, just on the other side. There are books at the library and sand toys at the beach and leaves and sticks at the park. And they have so many more possibilities than the ones that seem to be narrowing further and further at home.When we are out I am her source of food and safety but not only that–not only “MOMMA” screamed over and over all day. I am also her guide, I can point out something new, I can explain or find out. We are still finding out together how the world is instead of her screaming insistence that it be a certain way.

When we were still thinking of preschool, I would look at the preschool near our house and think about all the toys and the other kids she could be familiar with, and wonder if that might be the right thing. But I would do this while we waited at the bus stop, getting ready to go somewhere. I know from years of work on socializing and stories from other autism parents that the school socializing isn’t necessarily effective, that some kids just never talk to the other kids in their class. I know the demands and pressure and chaos just of organizing 10 kids in a circle throw my daughter into incoherent meltdowns. And I know that the the preschool’s very nice play yard also looks like a cage. I know that when we step on the bus my daughter is amazed, that the world is hers, that she wants to know about every street and every sign, and why the bus makes that loud noise when it lowers down, and how you get a transit pass. I know she’s learning, and even though it’s hard I think we’re making this part of her life as easy on all of us as we possibly can.20160626_123857.jpg

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Normal Normal Normal

I’ve had a fresh dose of family this week trying to convince my husband and I that my daughter is not on the spectrum. I’m trying to take this in peace instead of getting angry. I’m not happy with the idea that saying my daughter is “normal normal normal” is a compliment, not when it invalidates my experience, not when it feels this need to hammer it in over and over. So still at midnight I lie in bed composing angry emails between nursing the baby, mostly along the lines of “if you don’t want to learn about this than F*$& off.” The infuriating thing is that they want me to do something different to “fix” the things I see as autism–usually some discipline-based practice like screentime limits or ABA.

The sad thing is they don’t know her as well as they could. They don’t know that when she screams “stop talking!” it’s an achievement in self care. She’s learned that silence will allow her to recover from a meltdown and she can communicate that without hitting. They don’t know how she laughs and laughs at the same jokes day after day, her particular thrill in the fact that something “wrong”–in the sense of incorrect, something that can trigger a meltdown for her–can be funny and forge a connection. They don’t know that her nearly non-verbal friend on the spectrum has much better social awareness than her, that he notices when her imagination takes her far away and tries to draw her back in to play. And they don’t know the amazement and joy I feel after her birthday party because three kids with autism and eight without all had fun together.

Autism is a huge chunk of our world and the insistence on invalidating it simply puts up a wall.

Luckily in the last few weeks I’ve also found unexpected avenues of support. The facebook group Unschooling Special Needs has been a haven where this double isolation of autism and unschooling turns into community. People reject the line seen too often on unschooling forums that labeling hurts your kid and high-functioning autism is just a sign you’re not unschooling right. Instead, everyone offers support: giving radical unschooling advice while also acknowledging that some kids will have needs far beyond our expectations, needs that use all of their parents’ energy.

Then a close friend recently told me she’s going to alcoholics anonymous. She explained how huge and unexpected that support network has been, but how some family members tell her she’s not an alcoholic because she doesn’t fit their idea of what an alcoholic looks like. What can you do in this situation? List off all the times you’ve blacked out? And what do I do with people to not only don’t believe me, but push for me to believe my daughter isn’t on the spectrum? Describe how the day before she sat on my lap panicking about the wind and stimming? Why would I do that when that story is not all of her, not all of autism. It’s also the jokes and the joy and the thrill of figuring out this world. IMG_2852

 

 

 

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Response to “toxic death cream”

As far as I can remember, I have always loved reading and gardening. I’ve always been interested in plants and what they do. I want new plants, I want to do the work to grow them, easily and naturally, much more easily than anything else I’ve forced myself to do in life. And ever since I was 17 and realized I could, I’ve had fun cooking. And every year of school, I wanted to be a teacher for that year. I used to joke about being a stay at home parent, but then I realized it is my idea of fun. Not always, but I enjoy the fundamental tasks.

Which makes me believe strongly that no one should be a stay at home parent if they don’t want to be, because it can be so hard in terms of stress, loneliness, and physical work. I couldn’t do it if I didn’t enjoy some of it for my own sake, not just for my kids. And if you don’t stay home, I  can’t imagine how you’d have time to research sunscreens, pesticides, chemicals in a baby bath soap, and all of the other things that I end up researching. That kind of research isn’t really my job as a stay-at-home parent, let alone physically or mentally possible for a parent that works.

Which means that I completely relate to this post, “Excuse Me While I Lather My Child in This Toxic Death Cream”–even if I live the opposite. Sarah Kallies writes about the stress of trying to be a good enough parent with so many rules and recommendations and guidelines, but aims in particular at the Enviornmental Working Group’s guide to safe sunscreens. She bought $30 of sunscreen deemed unsafe, and can’t afford to throw it out after reading the guide, so now she feels guilty about putting something toxic on her kids and concludes that she’ll push aside these guides, writing:

Post all the scathing articles. Share the latest revelations. I’ll pass for now. Life is hard enough. I’m going to live and soak in each moment with my boys instead. When I see, “10 Things you had no idea were in the air you are breathing right now,” or, “Did you know that opening your eyeballs can be fatal?” I am going to shut my computer and go to sleep. And dream about our next camping trip. Or hiking adventure.

The thing is, the Environmental Working Group (EWG) is one of the only organizations providing this information, and our government is doing nearly nothing to protect kids from chemicals in everyday products. The thing is, this isn’t about judging moms as individuals. I make tons of stuff–organic food, diaper balm, lotions, my kids entire education really–in order to avoid the toxic chemicals and repressive systems that I disagree with politically. But this does NOT make me a better mom. Sometimes I feel I should be doing more personally–putting my kids and myself on a gluten free diet, cutting out more sugar. Sometimes I feel I should be doing more politically–going to protests, writing letters, putting my body and career on the line like Sandra Steingraber. I feel guilty everyday for some mom failure but I don’t want to do these things, I want to work in my garden and read and go hiking and read stories to my kids. I feel very uncomfortable when people tell me I’m such a good mom because that term is so loaded and creates a whole group of “bad moms”–usually people in poverty or facing personal crises who don’t have the time or energy to research everything or make every meal or battle their kids over junk food. It takes either a lot of energy or a lot of money or both to get your kids out the front door for the day with a complete snack bag or a stop at a healthy restaurant or bring the right sunscreen, and not just go through a drive-through McDonald’s or put on the sunscreen you already bought on sale.

But the Environmental Working Group is not about mom guilt, it’s about making information available in an easily accessible way. No parent has time to do an independent literature review of all the science behind each chemical in each sunscreen. The EWG does it for you. And that is so powerful that it’s been causing plenty of backlash, with agriculture front groups accusing the EWG of making people less healthy by telling them not to eat fruits and veggies, and others accusing them of profiting from natural cosmetics companies. The thing is parents need their lives to be easier, and they need someone–a nonprofit like the EWG–to figure out how to limit exposure to the hundreds of chemicals we are exposed to everyday, chemicals that either aren’t regulated in any way or that are studied by themselves, not for their effects in conjunction with the other several hundred potential endocrine disruptors, potential carcinogens, and potential allergens deemed to be safe in isolation.

It is hard, so hard, to stop the production and use of chemicals known to cause cancer, just read this story about perfluorooctanoic acid (PFOA). Let alone get it out of our environment. Which is why a group like the EWG is so important, at least making  it easy to know which chemicals we’re using and what limited studies have shown about them. Still, I agree with Sarah Kallies that even that knowing is often too hard. As Dominique Browning of Moms Clean Air Force puts it,

The SYSTEM needs to change, so that we don’t have to worry about having toxics in our stuff, in our air….so we don’t have to feel personally responsible for fixing climate change. Instead, this is the job of the institutions designed to protect us. So–for those of us who have more time, because we aren’t dealing with toddlers–we can unite to fix broken laws. And fight corporate polluters. Meantime, we do the best we can in our everyday lives. And we do it with love and good intentions.

The Environmental Working Group is essential to my peace of mind. Knowing about these chemicals feels like the only thing I can do when I hear about yet another friend or relative getting cancer. This knowing and researching is not our job, but the EWG enables us to ask again and again for our government to make public health and safety a higher priority than corporate profit. What sunscreen you use doesn’t matter as much as supporting organizations and people fighting to keep everyone safe from toxic chemicals.

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Froodle, by Antoinette Portis

My daughter’s autism diagnosis process involved piles of paperwork, doctor visits, and a visit to a central observation office where we did more paperwork and hours of observation. The day before that visit I was nervous. I had spent a year wondering and waffling, and I felt extremely anxious about labeling her, about how that would impact her for the long term, about whether everyone would just say I’m crazy and making it all up. So that day, and really the whole year, I dealt with this stress by searching the internet for information so that I could diagnose myself, so I could walk into these offices fully confident. And I always doubted and wondered, until that day I found a video of a child with autism laughing.

I think it was this one, but I’m not sure. It doesn’t matter. What matters is that I watched it over and over and I was very sure that my daughter was on the spectrum. Because this was her same explosion of silliness, her delight in being ridiculous.

Ever since, it’s the fun side, not the delays and frustrations, that make me know not only that the autism diagnosis is certain but also that it’s helpful. It’s the modified, autism-friendly library story times that are miraculously better for us, or the movies that are “sensory friendly” with the lights on.

Antoinette Portis’ Froodle is about delight in being ridiculous. It’s about play, variation, and how what doesn’t seem normal can be the way we deepen our friendships. It’s about birds who want to say silly words and not just “chirp” and “peep” anymore, and the crow who first tries to straighten them out and then learns reluctantly how to have fun. It is by far my daughter’s favorite book.

The random outbursts of silly words in Froodle remind me of those moments when my daughter is having so much fun and bursts out with quotes from a tv show–like The Octonauts or Paw Patrol. Other kids and adults find this disconcerting, but it’s her way of saying that she’s happy to see you or loving what you are doing together. She loves these two shows, both of which focus on a set of friends who work together and joke together. In real life that kind of social interaction is really hard for her. So when she quotes these shows to you, it means you’ve really connected.

I had been getting frustrated in the past six months with the fact that we barely watch anything other than Octonauts. I can’t suggest a new tv show, pick a movie, or even listen to or watch something myself without frightening my daughter or making her anxious because of the noise and my distraction. I love narrative, so not being able to watch anything new is very frustrating. I was trying to be patient and understanding about how overwhelming a new show is, but then I ran into Amethyst’s “Ask an Autistic” series on youtube, and this video on scripting:

Her joy here is so clear, and instead of just being tolerant I’m trying to find ways to be part of that joy with my daughter. This morning, the first thing she said when she woke up was that Peso (her imaginary friend but also a character on The Octonauts) was a baby but was growing bigger. And Captain (Barnacles) remembers being a (polar bear) cub. And I replied “oh, like when he was little and played with his sister Bianca.” And she smiled this sweet, joyful smile, tucking her body deep in the couch, and replied “I know it, with his sister Bianca.” “Then they get their badges, right? What kind of badge? I don’t remember” I wondered. She didn’t remember the name of the badge either, so we turned on that episode.

We’re together in this and it’s so much fun. The moments when I join her in her passions, when I know about Captain and his sister Bianca and show her that I’m really paying attention, that I too care about these characters and love them, those moments are beautiful. She sees so much value in my words in those moments and listens, looks, pays attention and feels safe.

Froodle skerpoodle!

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Can you die from baby screaming?

Or at least feel assaulted. When it seems like there is no reason and you will never be able to move on your own, or do any movement other than holding and bouncing. Sometimes I lay on the floor and just set the baby on my stomach, because my arms can’t do anymore. Or just rock in the rocking chair because rocking is more what I need than even what baby needs. I hold him and the screaming is ringing in my ears afterward for hours.

Of course there are reasons–spit up, vomit, just tired again. And I remember from my first eventually patterns set in, you get better at guessing and their own bodies just get more comfortable. This week has been hard because I thought that those patterns were settling a bit, and now they are all off again and I keep thinking I might do something, then the baby screams.

Yet, despite the past few days, we still manage. Yesterday my arms were writhing from holding the baby all day. Soon as dad got home I handed him off and was ready to take off on a walk. But my toddler starts yelling no, and I realize she hasn’t had any time with me all day and really she hasn’t complained. She did watch videos all day except for a short stint outside. So I invite her along, with the firm promise to walk the whole way because I cannot carry her. And then we have fun. We sing–skid-a-mar-ink-a-dink-a-dink and Baby Beluga–skip, run, race, pick flowers, play hide-and-seek, play tag at the park. Which ends in a meltdown because another kid at the park joined in and tagged me. And even after all that fun, in that first moment of meltdown my first reaction is, why can’t I have a kid who will just play? Why is a small amount of the unpredictable–just another kid playing too–a disaster? When I feel that way I know it’s my own stress, not her, and that stress stayed incredibly high all night and through this morning despite the fun of the walk.

And then, magically, the baby stays happy for a half hour then stays asleep for an hour. And then I’m helping her with a new app to breed birds, helping her figure out the numbers and instructions which ends up being fun for both of us. Then we are doing stickers, drawing “instructions” for our next project: mixing rice and food coloring and glue and seeing what happens. And I’m even cleaning up a bit and cooking! And the baby is cozy and relatively Photo3572calm. And then we’re rough-housing and baby is smiling and watching in wonder as we tickle and tumble.

A homeschooling friend just posted a schedule of her day. It’s funny coming at homeschooling somewhat backward, starting with unschooling, never intending to do school at all. It looks so pointless, honestly, and miserable on both ends. Everything scheduled down to the minutes, projects assigned, singing timed. After the emotional misery of the last few days it looks utterly miserable. I can’t imagine having the energy to instruct and order. I know that ritual and patterns can be comforting for some kids. But when the baby is finally asleep and my daughter and I are giggling about some pretend fish, when she decides on her own to turn that off and walk over to pick Mr. Wuffles from the bookshelf so we can giggle about aliens and cats, then we’re doing art projects and then she pulls out the yoga mat and starts doing her own versions of yoga, and now back to a video which gives me a minute to write. . .then I can’t imagine it any other way.

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Fragmentation

My children are challenging. I can say that with full confidence now that the baby is two months old. As babies they are so touchy, they won’t sleep unless held perfectly upright and close, bouncing. Then if you bend or twist, they wake up! True for both kids now. The result today has been that while I attempt to take care of my toddler at least a little, I wake up the baby at every 20 minute sleep cycle. He’s awake for about 10 minutes then mad again because he’s tired. Then we struggle through tears to get him back to sleep, and the cycle begins again.

It’s really easy to get angry. My husband takes the baby in the evenings to keep him to sleep, and gets so frustrated never being able to sit still, to constantly need to bounce sitting on the exercise ball to keep him asleep for an hour or so while I eat dinner and get ready for bed. I watch him and it breaks my heart that he’s angry at this poor little baby. Then I have him during the day and get angry too. I get angry because he’s asleep and I think I might read a two-page article, but he wakes up. Or he’s awake, and I think I might just put away dishes, but then he’s crying again.

Somewhere in All Joy and No Fun Jennifer Senior talks about fragmentation, how women tend to take on the chores and household duties where your time is constantly fragmented. One task or one thought never gets finished, and Senior references studies about how this raises stress levels. In the meantime, my stress levels go up because all of this makes me question my parenting. For the baby, am I doing everything I can about diet, sleep, etc. to try to make him feel better? For the toddler, I am not able to engage with her about the DVD she’s watched 5 times in a row today, I can’t really offer to do much. I offered to go outside but in our second round of hide-and-go-seek the baby was crying again and she was soon finished. On the days when I do take the toddler out to visit a friend or go to a park or class, I feel like hell because the baby hates the car seat and screams in terror the whole way.

Meanwhile my house feels like hell because there are mountains of messes piling up and I cannot do one single thing to begin cleaning. Not one dish without tears and screaming. There’s food on the floor and I can’t do anything about it without waking the baby up or letting him cry alone for an extra five minutes (after the first ten minutes he’s cried alone so I can eat and go to the bathroom).

I think these are the days my parent friends are afraid of when they marvel at how I can homeschool. Indeed. I wonder why I don’t see these days on unschooling blogs and books. But for the sake of writing what’s real, and not just trying to promote an ideology or lifestyle, here I am with two people screaming sometimes so that my ears are ringing and piles of stuff mounting in every corner.

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