When Well-Intentioned Comments About My Children With Autism Hurt the Most


I have two children, now adults, on the autism spectrum. They are amazing and wonderful, smart and sweet, but they are different. That’s OK with me, and it’s OK with them. Most of the time, the outside world doesn’t get to us, but now and then, it does.

I’ve encountered many different types of people on our journey through life with autism. Some are supportive and accepting, some are cruel (intentionally or not) and then there are those seemingly well-meaning people who unintentionally fall somewhere in between.

Those are the ones who can sometimes hurt us the most. They can be loving friends, family or complete strangers. It doesn’t matter who they are; what does matter is what they say.

Please do not tell me you understand. You do not. There is no way you could.

Please do not tell me your typical child does the same things. Trust me, there is no comparison.

Please do not tell me it’s just a “boy thing.”

Please do not tell me it’s a phase or they will grow out of it. It’s not and they will not.

Please do not tell me I need to discipline more. Discipline does not “cure” autism.

Please do not look at me or my children with pity. We do not need it, nor do we want it.

Please do not ask me if I wish they were different. I don’t.

Please do not give me advice unless you walk the same walk we do.

Please do not tell me what worked for your child unless your child happens to be autistic.

Please do not tell me they do not “look autistic.” That is ridiculous.

Please do not tell me they do not “act autistic.” People on the autism spectrum don’t all act the same.

Please do not say things like, “If that was my kid, I would…”

Please do not accuse me of letting them get away with things. I certainly do not.

Please do not ask me what I did or did not do during my pregnancy. That has nothing to do with it.

There are more, but I think you get the point. I hope so. I spend every minute of my life trying to teach my children coping skills, daily living and social skills. So sometimes you will see them like they are any other young person their age, and other times you will see them in all their autistic glory.

I discipline my children, maybe not the same way you do, but I do. Everything is a teaching moment, and there’s a difference between discipline and punishment. You do not punish a toddler when he falls as he is learning to take his first steps; you help by teaching him how to pick himself up and try again.

When someone asks if I would change them if I could, it infuriates me. Would you change your child? The fact is, personally, I wouldn’t, and the fact is, I can’t, so why ask such a silly question? I believe God, in his infinite wisdom, gave me these amazing children as they are, and I accept and love and cherish them without question. The first time this was asked of me it broke my heart. From the moment I laid eyes on them, the moment I realized they were different and every moment since, the thought has never crossed my mind that I would want them any other way.

What you say and how you say it leaves a mark, an impact on the very heart and soul of me, of every parent with children with special needs. I know it’s impossible to put yourself in our shoes, to imagine what life is like, but if you could just stop and think about how you would feel if someone gave you a backhanded compliment, belittled you or judged you for something they do not truly understand, you might choose your words with a bit more care.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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8 Dos and Don’ts for Friends and Family of Children With Special Needs


We are blessed to have some incredible people in our lives, but since our differently-abled addition to our family was a unique component, not only for the family at large but also for our small community, it took a great deal of time for people to act and talk in a way that helped and not hurt us. I know it wasn’t a lack of caring but simply a lack of knowledge of what they should or should not do. Here’s quick reference list of eight dos and don’ts that I think would be helpful for friends and family members of children with special needs:

Please DON’T:

1. Don’t avoid us.

I know you have most likely never dealt with anything like this before, but by pushing us off to the side, you’re not only sending the message that a person with special needs is less valuable, but you’re also robbing yourself of the richness that accompanies loving and getting to know someone “different.”

2. Don’t judge us.

I know you might think your success in different areas might make you an authority, but the truth is that until you have walked in our shoes, you have no idea of what we go through on a daily basis. Yes, your child might never have experienced a meltdown in public, but I’m almost certain you would also never have celebrated the day when your child was finally able to verbalize why he had the meltdown.

3. Don’t offer parenting suggestions.

I know you honestly want to help, but since you don’t know what we’re dealing with — something you can only know if you’re walking in our shoes — suggestions of how to prevent our child from having a meltdown or advice on how to make our child act like “other” children won’t do a bit of good and will only cause us to feel frustrated, not helped.

4. Don’t encourage others to think there’s something wrong with us.

I know you may very well be frustrated with your interactions with someone who doesn’t fit your definition of “normal.” However, when you — a person close to us — shares your concerns or observations with other people, you’re inadvertently spreading the message we should be avoided. That only hurts us. It hurts even more when we hear you saying these things or find out you said them from other people.

Instead, please DO:

1. Do show us we matter.

I know it might be hard for you to know how to do this, but believe me, if you ask us how you can best support my child with special needs and myself, I promise you we’ll have some suggestions for you. Just like everyone else, we want to know we’re valuable and that we are valued by you.

2. Do tell us you care.

I know the fact you’re in our lives means you do care, but just like everyone else, we need to hear it spoken once in a while. If you love us, please say so! I promise you that even if it doesn’t look like my child with special needs heard you or processed what you said, those words are absorbed and we’ll both know that you care.

3. Do be patient.

I know it must be frustrating when a child with special needs may not understand what you’re trying to teach or tell them. Yes, I know you have shown them something over and over, countless times, causing you to think your efforts are being wasted. I promise you that they’re not! It might take a child with special needs a little bit longer to figure something out, but when they do and are able to succeed, it’s an awesome feeling not only for them, but for the people who have helped them.

4. Do be understanding.

No, a child with special needs may not always understand what you’re saying or respond to you in a way that you might understand at first. They might also have a meltdown in public (it happens!), need to have a particular object always with them or constantly be in motion. If these things happen, they’re just a part of how they’re wired. Just like everyone else, they just need someone to understand who they are and the unique components that make them who they are.

Marybeth Mitcham the mighty.1-001

To the Person Who Laughed at My Daughter With Down Syndrome


I had someone laugh at my daughter, Lily, on social media for the first time. I wasn’t expecting it, and it shocked and sickened me. I sat there looking at my Instagram page and saw those seemingly innocent letters: “lmfao.” I peeked at the user pic and wanted to vomit. I knew once I clicked on the profile I’d be upset, but I did it anyway just to confirm my suspicions. The entire feed was horrible, awful pictures making fun of people with disabilities, and I felt a little like my innocence had been shattered.

We live in a bubble where everyone we know loves Lily, and we had yet to experience anyone being anything except kind, loving and supportive. And now there was this person laughing at my child – my child who has worked so hard and overcome so much and still spends all of her days smiling and giggling. So, because it’s the Internet and I was angry, I typed a quick, angry response and blocked them. For a moment I was happy, but it was fleeting when I realized I didn’t fix anything. I didn’t do anything except react angrily, and that’s not the type of parent I want to be. Because sadly, this will probably happen again. While we live in our bubble and try only to let good, kind people into it, the world sometimes has other plans.

There will be other people who sneak in: people who will say things without realizing the hurt or the harm they cause, or people who do realize and don’t care. I want to be the person who stays calm and tries to use that moment not only to remind Lily of how incredible and amazing and loved she is, but to show the rest of the world that as well.  So, this time I’m a little too late, but next time I will get it right.  Today, though, I can only say what I wish I had:

Dear Sir (or Ma’am – I don’t want to make assumptions here),

The photo you took the time to look at and laugh at today is of my daughter, Lily. I’m sorry you weren’t able to look past your own prejudice and see the incredible kid in that picture, because let me assure you, she is incredible. I wish you would’ve had more opportunities in your life to get to know people with disabilities, because perhaps then you’d already understand they are, beyond anything else, people. My daughter is probably no different than you were as a child: she loves music, giggles when I pretend to fall down and hates it when we make her eat green beans.

But maybe she is a bit different: she’s had to work a little harder to be able to do those things, but frankly I think that makes her more like a superhero than a regular kid. Because really, think about it, is there anything that you have spent three years trying to learn, or did you give up when it got hard? Lily doesn’t give up.

Maybe your perception isn’t entirely your own fault. Maybe it’s how you were raised, or your friends are the type of people who think it’s funny to laugh at something different. I honestly believe you’re not a bad person. Maybe if we met in a different way, in a different time and a different place, we’d even be friends. I don’t think someone making fun of people with disabilities is inherently mean-spirited. It’s possible they haven’t had the chance to think otherwise. I really, truly believe that if you had the opportunity to get to know my daughter, you’d walk away thinking she’s pretty awesome. I think you’d begin to look past her almond-shaped eyes and the fact that she’s only learning to stand up, and you’d see her incredible smile and hear her giggle, and everything I’m saying to you would sink in.

I think you’d finally understand why your words and laughter were so hurtful, and you’d feel ashamed because you’re generally not a hurtful person. And while that would, honestly, be somewhat satisfying for me to see, I hope it would be just enough for you to see things a little differently. Because, like I’ve been trying to say to you all along, different isn’t bad – it’s incredible.

With love,

Lily’s Mom

Follow this journey on Giggle and Hugs.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

4 Lessons My Child’s Epilepsy Taught Me


image (13) Epilepsy has changed my life. There are days when epilepsy is a nasty monster haunting my dreams, clawing at my soul. He’s laughed at me while I lie awake at night. He’s sneaky, relentless and violent. Epilepsy challenges me. He’s filled me with self-doubt. He’s questioned my strength. Epilepsy and I wage war. I will not succumb. I will grow out of this struggle. Epilepsy has taught me some important lessons.

1. Create a nurturing circle of support.

When my son’s first seizure struck in the early morning, I had no idea what was happening. I called 911, and the operator told me, “You need to calm down so we can help your child.” And they did. The EMT team and the staff at two hospitals coached me through the most gut-wrenching 48 hours of my life. Since that seizure almost four years ago, our circle of support has expanded. It includes not only specialists and service agencies but also the dedicated staff at my son’s school and the compassionate people in our local community.

I built this circle of support to care for my son, but I also soak in their love. We all need to surround ourselves with this kind of light, open ourselves to others’ compassion and sustain those relationships that encourage us to become our best selves. Remember that one plus one is often greater than two.

2. Carry a big purse.

The neurologist who diagnosed my son’s epilepsy also showed me the MRI of his brain. Although the technology behind this imagery is fascinating, I was in shock. She then instructed me that I must always carry an emergency medication in case a seizure raged for more than five minutes. Later a different type of seizure emerged, and the doctor added a second emergency medicine. On long days I also carry three bottles of daily medication and syringes so I can administer doses in a timely fashion.

Recently my school principal told the faculty that the the police dogs would be visiting our school.  I clutched my big purse and said, “I carry drugs.” If I dump out my purse at any given time, I may also have crayons, comic books, a deck of cards, my journal, a favorite type of tea or a bottle of essential oil. My mammoth bag gives me space to carry treasures, and they remind me to carve out moments to nurture myself. What gifts can you give yourself? Take exquisite care of your soul. We all deserve to savor simple joys throughout the day.

3. Ride the wave.

My son’s epilepsy was well-controlled for 18 months. Then the storm surged again. I consulted with the neurologist. She adjusted his medications. I held my breath anticipating the day when all would be calm again. My life became unglued. I scribbled page after page of notes in my seizure log. I took an extended leave of absence from teaching. When will they fix this?!

Six months later the neurologist explained that my son’s epilepsy is intractable, meaning they’re uncontrollable. This is our new normal. I cannot brace myself and wait for the seizures to disappear. We travel this life with epilepsy. We sail through the peaceful moments with gratitude and acknowledge the power of chaos. Epilepsy is not my enemy to control. It is my experience; I need to grow. We are human. We feel a panorama of emotions. We breathe in our wild experiences. This is our journey.

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4. Chase crazy, big dreams.

Here we are dancing with epilepsy. Sometimes it’s dangerous. Tomato soup plus a seizure equals second degree burns. It’s often clumsy. My son spills water, clunks into furniture and drops the cell phone. Some people have auras, unique sensations prior to seizures. Not my child. A friend suggested researching service dogs. Some dogs are trained to smell chemical changes before seizures. They alert their owners and protect their loved ones during events. My son disliked dogs. He shuddered at loud noises and dreaded anything that was too rambunctious. Fundraising with the service dog agency demanded thousands of dollars. This idea was too crazy, too big. Or was it? We played with sweet, gentle dogs, and they’ve won my son’s heart. And generous souls have donated every single cent needed to transform this crazy, big dream into our reality.

There’s a freedom to facing adversity. We can forget the shadows. We know them so very well. We can reach out towards the enchanted future. There’s magic within all of us. We must always keep hope.

I’m not the same person I was the morning my son had his first seizure. I’m wiser. Remember to surround yourself with light. Soak in love, and let it comfort the tired parts of your soul. Be open to the healing grace that others shower on you. Be mindful of the simple things that resonate with your heart. It may be a cherished note from a friend, a gorgeous flower or a luxurious lotion. Carry these gifts with you, and they will help you find your center. They will remind you to linger in a peaceful moment just a little longer. Be brave when you dance with darkness. Dazzle it with your beauty and laughter. Hold onto your best self even when demons haunt you. Listen to your wild, lavish dreams. They may be as simple as an idea that frequently bubbles up until you’re ready to grab it. Embrace your aspirations, and try to enjoy the adventure.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

How to Survive an Inpatient EEG (Like a Boss)


So, confession.

We don’t do anything like a boss around here. We’re not that cool.

Also, I don’t typically write advice posts. I suppose that’s because I consider myself more learner, less teacher. Or maybe it’s just that know-it-all types drive me wonky? At any rate, after surviving yet another inpatient EEG, my hubby and I thought it’d be akin to sin not to share some things we’ve learned over the past eight years. This is in no way an exhaustive list. Nor do I claim to be an expert. It’s just my list. My credentials being that I happen to love a little guy living with severe epilepsy. Believe me when I say, we’ve been around the inpatient EEG block.

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1. Be Prepared to Wait

Unless you’re one of those people who should totally play the lotto because things just always fall your way, you can expect to wait. On the front and back ends of your hospital admission. We’ve had the joy of visiting four rather large children’s hospitals (Boston, Detroit, Providence, Orlando), and one thing we’ve learned is that admissions are, as a general rule, a pain in the you know what. Gotta love bureaucracy. It never fails. No matter how many months in advance we’ve booked our overnight EEG, no matter how many reminder notices we’ve received in the mail, when we arrive at admissions everyone seems shocked that we actually showed. We’ve waited upwards of five hours for a “bed to open.”

The only thing worse than waiting for a bed is waiting to escape it. The discharge process is a form of cruel and unusual punishment! When the attending gives you the go-home green light (usually during early morning rounds) you’re giddy with joy. Oh, the sweet smell of freedom! You’re mentally imagining yourself munching a relaxing brunch on your own couch. Taking a long, stress-detoxing shower and getting in your jammies all by noon. But no one else seems to be in much of a hurry to let you out, and it’s absolute torture, I tell you. I’ve tried all the techniques too.  Begging, pleading, befriending nurses, firm I-mean-business conversations. But at the end of the day, bureaucracy moves like molasses. And if you’re a control freak like me, it’ll save you so much stress if you just go prepared to wait.

2. Hooking Up = Unhappy Camper (and Staying Hooked Up Ain’t Any Better)

If you’re coming in for an overnight EEG chances are your child has already been EEG-ed before. You probably know the drill. For those who might be first timers here is a great social story that shows you (and your child) what to expect. Keep in mind, I see everything through the filter of life with my son Trevy. His first EEG was at 7 months old, and he’s had at least one each year since. I thought it would get easier. Yeah, for us, not so much — although he’s matured to a place where he’s more easily comforted with words and social stories. I find that siblings are also an awesome resource. Still, you can expect some tears and fears. I know it’s not easy for me. I can only imagine how scary and intense it feels for him.

Unhappy Camper

Be sure to have your child wear clothing that doesn’t need to be pulled off over their head. Otherwise, once you’re hooked up… you’re stuck. I love the shirtless overalls look because it makes for adorable pictures. Zippered sweatshirts and button down jammies are other faves for us.

Don’t be embarrassed if your child rips everything off and you have to call the techs to schlep back over and re-wire him. Something about being mummified and imprisoned brings out the Donnie from “The Wild Thornberries” in Trevor too! Oh, and two words for ya – chin strap!

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As much as I gripe about our local hospital, at least they have someone to monitor him through the night so we can sleep. We’ve been to some facilities which require a guardian to stay awake all night long. You’ll have to flip a coin or arm wrestle to figure out who wins that honor! Actually, I usually take the day shift (so Hubster can go to work) and we swap for night duty. I married a good man.

3. Press That Button

Where the hooking up happens varies from hospital to hospital. We’ve been hooked up in different wings and then transferred (through super fun secret hallways) to our room. We’ve also been hooked up right in the room. Either way, after you’re glued, wrapped and settled in your room, it’s time to get down to business. There will be a camera, which should be on your child at all times. You may have to manually control the camera yourself. We find this easier because it allows him more freedom to move. Some hospitals have staff at the controls and require your child to stay in a designated area (think pack-n-play size) so they’re always center stage. We like to bring our own mini backpack to put the portable machine in, but most hospitals have their own as well. There will be a cord with a handle. On the handle lives the magic button. You will be told to press that button any time you see “an event.” Do not be afraid to push that button! Any and every thing that makes you worry is a reason to push the button. It’s so, so, so important to push that button. The button helps the neuros (or epileptologists) read the EEG data by marking a few minutes before and a few minutes after you pushed it. The easier it is to read the EEG, the sooner you get to go home. And the sooner your heart can digest whatever information comes from the report. Also, do you really wanna do this all again?

I didn’t think so… so… PRESS THAT BUTTON.

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Been There Done That Hint: Most of video monitoring systems also record audio. So if you’re gonna (and trust me, you will) have a blow out with your spouse, I suggest doing so in whispers or code!

4. Bring Your Own Meds

Seriously. If your child takes seizure meds bring them with you. Some of the most stressful moments during inpatient stays have been over meds. It boggles my mind how doctors can be so flippant about seizure medication orders, but we’ve literally given Trevor’s 7 p.m. dose as late as 11 p.m. After a crazy-mommy meltdown moment, we decided to start bringing our own. It is so much more peaceful to administer meds on time.

5. Make Yourself at Home

You’re gonna be there for at least 24 hours (possibly longer) so you might as well feel comfy. Ask the nurses to show you where to find clean bedding, pillows, towels, etc. Not only will you enjoy feeling more independent, they’ll appreciate not having to run to your room every time you need a washcloth.

Our local hospital has a Ronald McDonald House room which provides coffee and snacks for parents staying in the hospital. A coffee cart comes by in the mornings too. Ask the staff about what your hospital might offer.

If your child is out of a crib and in a big kid bed be sure to ask for padded siding. Not only will it make the bed more comfy cozy, it will also cover up the bed control buttons. Out of sight – out of mind!

6. Pack Favorite Snacks

Hospital food isn’t always groady, but when you’re craving an Oreo, you’re craving an Oreo.

7. Distract-ify

See above – because yummy snacks are a great distraction. But some other things that have helped us navigate the hoooooooours of being trapped in a cell hospital room:

  • Child Life – many (if not all) children’s hospitals have Child Life programs which exist to help make your child’s stay more comfy by providing toys, books, coloring pages, movies, video games and sometimes even super cool things like music or animal therapies. Use them. In fact, ask for them to visit as soon as you meet your nurse.
  • iPad/Pods/Phones (you get the idea) – load it up with new apps (I post freebie apps here and have a list of our faves here). Some of our can’t live withouts are: Netflix, Pandora, FaceTime and YouTube. I love our iGizmos because they’re small and easy to pack which means I don’t have to bring everything plus the kitchen sink with me.
  • Comfy Faves – I know he’s 8, and I should totally be weaning the binky more aggressively… but during an inpatient EEG it’s all about making him feel safe and comfy. I packed an arsenal of binkies and blankies. Whatever things comfort your little one, be sure to bring them.
  • Visitors – if you have friends/family in the area, ask them to visit. I even asked if Trevy’s home-based therapy could be done at the hospital, and guess what? They said yes!
  • Virtual Visitors – FaceTime is so wonderful! Trevy was able to see and chat with his brother, sister and Grams on our iPod.

PicMonkey Collage

8. Prepare Yourself for the Hospital Hangover

If at all possible, try to take (at least) the day following your discharge off to recoup. Even if nothing super dramatic happens during your stay, there’s just something emotionally, physically and spiritually draining about spending the night in a children’s hospital. And it will hit you (probably your whole family) like a ton of bricks. You’ll feel like you’re slogging through mud for days afterwards. My hubby and I affectionately refer to this phenomenon as Hospital Hangover. Be ready for it. Plan to spend a day or so decompressing in jammies and Netflix marathons.

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Again, this is in no way an exhaustive list of ideas… it’s just our list. Filtered through our life with Trevy and his epilepsy journey. If you have an overnight EEG in the works, hopefully some of these tips will help make it more bearable for your family.

This post originally appeared on Happy Being Trevy.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

After Losing Both Parents, This 6-Year-Old Is on a Mission to Make Others Smile


Jaden Hayes, 6, is on a campaign to get others to grin. His aunt tells Yahoo Parenting: “You can see the power of the love that he feels from these people sharing their smiles with him.” (Photo: Mstashers/Instagram)

The last thing that anyone would expect of Jaden Hayes — who recently lost his mother only two years following his father’s death — is a smile. But that is what the 6-year-old is giving strangers all over the city of Savannah, Georgia, and getting in return.

On July 22, Jaden kicked off a “smile experiment,” as he’s calling his campaign, to get grins from grim-faced strangers. His plan: simply asking for a smile and giving out small toys. Jaden’s goal is 500 smiles, each of which he documents by taking a picture. In the first two days, WSB-TV reported, Hayes already had 275 photos in his collection, bringing a ray of sunshine into what is otherwise an understandably dark time for him.


STORY:
 Late Teen’s Bucket List Inspires Others to Do Good After Her Tragic Death

“At first, he was hesitant, but once he got that first smile, he was off like a firecracker,” Hayes’s aunt, Barbara DiCola, tells Yahoo Parenting of the boy whose mother’s death at age 48 was a shock to the family. (They are still awaiting a toxicology report to determine what may have caused her to pass away in her sleep, DiCola says.)

“When he smiles, he has a glow,” she says. “And for a young boy who’s been through so much to be able to walk up to complete strangers and give them something to make them smile, then hug them like he’s known them his whole life, that is a gift. You can see the power of the love that he feels from these people, too, who share their smiles with him.”

(Photo: Mstashers/Instagram)

STORY: Sheryl Sandberg’s Poignant Letter About Her Family

Trying to get people to grin was entirely Hayes’s idea, DiCola told WSB-TV. “I was getting him ready for bed, tucking him in, and he says, ‘Auntie, I’m so tired of everybody with frowny faces,’” she said. “‘We need to make people smile. … Can we do that?’” DiCola agreed, and then told him they’d discuss ideas in the morning. “I’ll be darned if that boy didn’t wake me up at 5 in the morning with ideas,” she said.

By Jennifer O’Neill

STORY: ‘Hero’ 12-Year-Old With Down Syndrome Saves Sister From Drowning

(Photo: Mstashers/Instagram)

Read more from Yahoo Parenting:

Man to Teen’s Father: ‘Your Son Just Saved My Life’

Tattoo Artist’s Incredible Disney Villains for 8-Year-Old

Mom’s Inspiring Selfie: ‘Today My Son and I Overcame a Huge Obstacle’

 

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