Autism Watch: 2007

Posts Tagged ‘temper

BB has a new friend. Well, not entirely new — they met each other a year ago in organized sports we’d signed him up for and they’ve seen each other at school here and there, but it has ramped up a lot in the last few weeks as they’ve seen each other for various events, mainly BB’s friend taking him somewhere. Today, we invited his friend over to spend the day, and wow, is it better than Disneyland and the zoo and a computer game store all wrapped into one.

BB has some social skills. Now, that doesn’t mean they’re good social skills, but he’s trying. He plays well for a while, taking the lead, and when he doesn’t get his way anymore or he’s just overwhelmed, he heads back inside to play on his computer. Alone. He wants to have his friend, so after I remind him that leaving him alone out back won’t generate return visits, he heads back out. After a sigh. But I think I made a dent.

His friend is being picked up any minute now, and it’s probably just about time. BB’s mood is wearing thin, the kind of thin where we almost are at a loss and don’t mind if he finds that spending some time in front of his tv watching his DVR’d episodes of Dragon Ball Z and Pokemon is what he wants to do next…for an hour or so. It’s the kind of thin where we’re afraid he’ll offend someone by his impatience or he’ll be rude under the guise of being ‘honest.’ Still working on that one.

Our next step is probably Cognitive Behavioral Therapy, in addition to more advanced social skills training and behavioral therapy at school. And for me? Other parents to talk to, those who can understand what we deal with daily and talk to me without judgment. Oh boy, do I need that…

Monday’s looming large now, and with that comes an early morning. 6am rise and shine and at school by 7:15 in time for his new ‘job’ helping the school on a special project. Just like any parent of a school-aged child, there’s the regular routine, and there’s the feeling of not looking forward to the next five days of rushed mornings, packing lunches, signing notebooks and listening to him vent the entire ride home each day about every.little.thing that occurred. (Who needs a tape recorder when you have BB? I get the perfect play-by-play minus the video, except his explanation is pretty detailed and I can usually envision his stories.) It’s only 6:22pm and I’m already tired just thinking of it. Or maybe that’s just the twitch in my right eye coming back.

As our kids grow, in some ways things improve. In some ways, things get worse. When I can’t hold him and restrain him enough at 75 pounds, what happens at 85? Years ago, I went to a parent support group not long after BB was diagnosed. What I expected was everyone talking about their experiences and people nodding and then going on to the next person. What I needed was being able to hear other moms of kids BB’s age talk about their situations and confirm we weren’t on our own or that we weren’t the only ones who had to make nothing but dairy-free pancakes cut in perfect squares with 3.5 tbsp of maple syrup in order to prevent a pre-school meltdown. What I got was a room full of people all dealing with spectrum kids from severe to mild, sharing their stories while others commiserated, laughed or gave advice. Sounds great, right? It was, until we got 1/4 of the way around the room and reached the parents with kids in high school. Their stories were scary. I was so busy getting through one day at a time that the future hadn’t occurred to me, so when I heard more and more parents talk about how things were just getting worse, how their child wouldn’t get into the car for school (or get out when they did manage to cajole him into getting in) or how their child yelled and they had to call the police to stop a rage, I was devastated. The cookie I ate was boiling in my acidic stomach as my eye twitched a little faster. I think I stopped breathing for a several seconds too long, and I wanted to run to the bathroom, the foyer, the car, anything to get away, except I was in one of the seats that allowed for no escape without disruption. So I sucked it up and let my mind boggle and ‘go there’ while I listened and realized that it was all just beginning.

So many things are better since that day. I have a boy that’s often indistinguishable from his peers for a while, unless you look close, and he’s no longer hurting himself…often. But that doesn’t mean I don’t worry about the future. I know the mantra is to not worry beyond today, as each day brings its own worries, and to let go and let God, but that’s a work in progress. I too am a lot better since that day, but I’m still Mom, and I still have to remind myself that worrying doesn’t help, action does. Each day, more action to attain more improvement, and the end goal? Happiness for BB. And not just on days we visit Disneyland with the coveted passes I’ll be buying within the week we move back, but all days.

Sometimes, when things are good, we can go days without really thinking about it. The word “autism” doesn’t even enter my head on a level where I have to focus on it, because so many days, that’s just how BB is. I don’t see him as autistic or see his odd behaviors or problems as autism, it’s just BB. But some days, it hits you. Bam, the kick in the stomach that reminds you: my son has a disability.

Autism.

It hits you hard and you almost have to remind yourself to take a breath, because you hadn’t thought about it that way in a while. Maybe it’s just me – maybe I compartmentalize and some might say that’s a bad thing. Some might say “Well, how bad can he be if you are able to forget,” so let me clarify — it’s not that I forget, it’s just that I see him as his own person, just the way he is, and I’m so used to his eccentricities, his sensory problems, his OCD behaviors and the meltdowns that I don’t focus on him being a child with autism. I just see him as a child who needs my love and attention in some different ways.

Yesterday was one of those days. On the heels of last week, when BB refused to go into the school in the morning, and he was a stressed, anxiety-ridden little boy who visibly shook when we mentioned school over the weekend, I didn’t figure yesterday morning would go easily, but I also didn’t expect it to go like it did.

Long story as short as possible, we went to school, with the homework the assistant principal had given him, basically a list of all the things that bothered him, things he wanted to discuss and have fixed. It was a well-written list, big words, proper grammar and spelling, but it still wasn’t pretty. He was candid, almost brutal, in his explanation. He doesn’t like it when someone touches him unasked, so he didn’t hesitate to name names of those who didn’t abide by this rule. (But I have to say, if you have a child with autism in your class, you should also know enough to not just touch them unbidden, so I didn’t feel sorry for those whose names were listed. If you haven’t taken time to learn about autism, knowing you have a child with it in your class, you aren’t being fair to yourself or the student.)

BB handed the list to the AP, and turns to head back to the car. Uhm, no, baby, you have to go into the building. All heck broke loose from there. Reminding him, as quietly as possible, that he wants to be seen like everyone else, so falling to the ground and trying to run away will make him stand out didn’t work. Four staff/administrators later, we were still there. Cars had all gone, and this was when it was a blessing that I have no friends here and neither does he. (Small towns? Not always friendly to newcomers beyond the hello, how are you. And if you’re different? The stares and actual “wow, I’ve never seen someone like you before” comments abound. My daughter’s blue streaks in her hair for Autism Awareness month? Mouths would drop open.) Because of our lack of attachment to anyone here, we were just another group of people on the sidewalk thankfully.

However, when we were still there 45 minutes later, BB in the car after us having given up, my stomach was in knots. My left arm had no feeling, as I’d used it mostly to hold him to me rather than running away. The AP doesn’t believe in dragging children into class, nor do I. If he’s going to be miserable outside, what happens inside? Is it fair to him, and if it escalates, we put him into the position where he could get even more in trouble. So back to the car he went.

This afternoon, we have an emergency IEP. Plans for what to do to make him willing to at least go to school for a modified schedule, for social purposes mainly, will be formulated. We’ll be discussing things that will motivate him to go into school, even if it’s computer-based projects or helping someone out. Then we need to work on friends. How to get him to make friends without the adult intrusion he doesn’t want?

Then we get to discuss ABA and social skills services. We aren’t signing anything that doesn’t include both in writing. Now that they’ve seen the good, the bad, and the ugly, they are aware that a lot goes on behind the surface. They realize that while he may look ‘normal’ quite often, there’s a whole new world in his brain. His thoughts and feelings aren’t obvious, but they matter, and we have to not only help him adapt, but we need to teach him to adapt, and make some adaptations for him as well. Medication is a consideration, but if the problem is mostly happening at school, I’m hesitant to biochemically change his behaviors and/or personality when there’s other options to approach first.

Think happy thoughts for us. Not only is our house not sold yet — four weeks and not one showing — which makes me discouraged and sad, being stuck in a place where we have no friends and don’t want to live anymore (for new readers, we’ve only lived here about 14 mths and we have no close family here either) but now our son is showing signs of major regression and I’m just seconds away from developing a tic again in my eye. It’s not about me, and I don’t want to make it about me, but we could really use a break. BB needs help, and he needs love and acceptance. We can shower him with love, but I can’t buy him the acceptance and the help relies on others.

I hate saying “my son has a disability” but yesterday’s issues really drove it home. Whatever else is going on in our life (such as planning a move that we’d hoped to still make this year) can’t be the focus. BB has to be the focus. Kind of a kick in the pants, and maybe we needed it.

My son’s got autism. He is extremely smart, is verbal and can speak clearly, and is in a regular education class, but he also can’t tolerate certain textures in his foods, doesn’t like eye contact, flaps his fingers, can’t deal with loud sounds or sudden changes in his schedule, lacks social skills, has personal space issues and a strong need for sameness and repetition, as well as difficulty monitoring his moods and anger, can’t stand tags in his clothes or seams in his socks, has to have everything a certain way or he could flip out, and sensory issues ebb and flow. Yet, because he can speak and is so smart, the autism isn’t the first thing you see, or even the second. As a result, some people that don’t live with us — those that haven’t seen him lick everything in sight, flip light switches on/off, line up chairs in waiting rooms, drop to the ground and strip, run away with no fear, meltdown from rage that fades into apathy — don’t get our concerns. They don’t understand why we push so hard for services in school, why we keep things on an even keel no matter what else, or why we treat him any different. Well, uhm, he is different, and the reason you can’t always tell it at first glance is because of all that we’ve done for all these years.

There was a couple of years early on that we barely left the house, and if we did, it was rarely as a family, so few people aside from our closest and most supportive friends saw the ordeals. We could show videos of the worst of the worst, pictures of the vacant stare, or reports from the nine diagnosing doctors and double-digit therapists and other professionals who worked with him. But why should we have to?

What do you do when you run into people who insist on him just being like everyone else, as though better discipline or a spanking or taking away privileges/possessions could just fix it? What do you do with those people who feel like you just need to have it pointed out that he’s not ‘that bad,’ or that if you just throw him out there and let him learn, he’ll do just fine.

Or do we really need to do anything at all? Is it their problem, or something we need to work on?

What are your thoughts?

My little guy’s last couple of weeks have been rough. Not sure why — it started before the aborted camp attempt, and it was after school was out, by a couple of weeks, so we can’t figure out what’s up. He’s just more edgy, more easily irritated, and he yells a lot more. A lot. So, I shouldn’t be surprised that today was no different.

Before I go further, let me just say I’m getting over a nasty case of the stomach flu that I thought was going to kill me. The kind where someone’s stabbing your stomach back up through your throat and out your mouth with about 30 sharp spears. The kind that leaves you dry but still nauseated, exhausted but unable to sleep, with joint aches and pains that should only come with a three-story fall. (Not that I know what that feels like, but I can guess now that I’ve had this flu.) It started after ingesting a yummy dinner of chicken tortilla soup that seven of us — I feel the need to specify that only three of us got sick, and not all right away, so no, it wasn’t food poisoning. (I made the soup, so you can see why I’d want to specify that.) A few hours later, I was down for the count. I’m still not feeling myself, and I’m sure it’s affecting my mood.

That said, I let ds play outside today while I sprawled on the couch. I can hear him playing with the kids, but wasn’t prepared for when he ran in screaming, sobbing, red-faced. “She yelled at me!” Initially, I wanted to go have it out with “she,” but reason kicked in..that and my husband reminding me that the little guy has his own perception of reality and we needed to get the story from someone else first. In the end, we learned that the situation was handled with less harshness than he saw, and was nowhere near as bad as he understood it to be. But, that’s the problem, in a nutshell.

For one thing, I can’t expect other people to know my son has different ways of seeing things, that he takes things literally, that for him, it’s ALL A BIG DEAL. Others don’t necessarily know how to handle him, or that he even needs any special handling at all. And I can’t go around telling everyone — it’s not like I can put him in a t-shirt that says “I Have Autism,” but yet we put him out there and expect him to learn how to deal…when in reality, few people let him be around their kids long enough to learn, whether or not we tell them. In this particular case from today, he’s still able to play with the kids, but then we have the second issue: how to get him to understand? He’s abrupt and says what he’s thinking and feeling, he can’t always communicate his feelings appropriately or gently enough, and he doesn’t understand give and take. It’s all just so difficult and leaves me feeling, again, like I can’t do enough.

So what do you do? How do you let them out in a world they’re not prepared for, or that’s not prepared for them?

When I picked up ds aka Barnacle Boy from school, he walked out of the gate, in his “I feel naked in this” Tony Hawk tank top and shorts, sporting a face that said he was upset but didn’t want it to be immediately obvious, only slightly obvious. On the brisk walk to the car (which happened to be down the road and across the street…long story that maybe I’ll convey later) he explained how upset he was with this particular girl in his class. Let me preface that by saying the girl does bully him, it’s been reported, and it’s being handled. Yet, looks like she’s either really sneaky, getting away with it somehow around his aide’s increased supervision, or he’s exaggerating. Hard to say.

Anyway…we get to the car, and on the one-minute drive home, his speech is coming faster and faster. We make it home, and he continues. I warn him that he’s dangerously close to his five-minute limit on complaints about a specific topic, and he continues, taking every possible second to get it out of his system. Then, BOOM. It hit the fan. Just as dh walks in the door after picking up my car (my new car, mind you, which needed a new windshield already) and the bank (we’re attempting an out-of-state move, so property has been chosen but needs to be bought)  to hear ds explode in anger. It escalated to self-injurious behavior and overall, it was a good hour to calm him down.

And, it was out of the blue. He’s been better lately, at least in terms of this type of meltdown. He still gets upset, but social/control issues have taken top billing lately. His headaches virtually disappeared when he was out of school and on vacation, but he had one yesterday and is reporting one now.

He’s still not okay, but dh has it under control. He just sat with him while he did his one homework assignment, and we gave him some pain reliever. So why am I blogging right now? I’m completely and totally unnecessary at this moment, other than getting dinner finished. And I’m okay with that. I do Meltdown Control, referred to as “MC” in the future, every day until he gets home. Fortunately, he’s home early, able to pick up BB from school, and be here the rest of the night with him. They look pretty darn cute cuddling on the couch, and I’m darn happy to let them stay that way. MC is exhausting.

A few months ago, I chronicled a visit to the dentist from a different perspective. Here we go again, since it’s the easiest way to fully describe how hellacious routine things can be.

Ds, or Barnacle Boy, has always had a difficult time with haircuts. After dh developed a steady routine with me after his first haircut at age 3.5, it got a little better, but only if the routine was followed each time. It included time to adjust to the chair, the tools, patience during the cut, and a balloon and treat after. Fast forward five years, and BB has long hair. It’s a combination of not liking haircuts, wanting to have cool hair, and wanting to be able to hide his eyes behind his hair like it’s a curtain. We promised him no haircuts (other than rare trims) if he washed it and brushed it; in other words, it had to be clean and no knots. This past week, it came time for the second of trims, and he was really not happy with it. It took a couple of weeks to get him to the point of readiness, and dh insisted I take him so I could direct the stylist. I think that was the first mistake.

I drove him early on Saturday up to the stylist, expecting a wait of at least a few minutes since there were already others in the waiting room. That would have given BB some time to adjust to the sounds and smells and not feel rushed, but they had an immediate opening and he was called right in. Autism needs an adjustment period to any new environment, and that didn’t happen. Autism doesn’t like different odors, lighting or crowds and the accompanying sounds without prep time. To make things worse, I’d forgotten my cellphone in the car, and BB wanted pictures taken so I had to run to my car to get it. (It didn’t help that I park my new car way away from mainstream traffic, so it wasn’t a two-second jaunt.)  I returned quickly, thank God for stamina from running daily, but then the problem was, he didn’t tell me where he wanted the pictures taken, or of what, specifically. I shouldn’t have assumed it was just typical pictures of him getting his haircut. That would have been too easy, and nothing’s easy with BB. Autism doesn’t like to be out of control and have a curveball thrown at it.

The stylist already looked put out by BB’s behavior, wanting to know what was up with him. I whispered to her what it was, and that patience was her best tool. Autism needs a chance to speak its mind and control the environment a bit. I meant my pointer in a helpful kind of way, for her benefit as well as his, but I’m not so sure she cared for my advice. (But, too bad, he’s a paying customer and I’m asking you nicely.) He started to flip out over the white piece of fabric that gets wrapped around the neck to prevent hair from getting inside the collar; autism doesn’t like tags and tight things, so the stylist said no problem and didn’t put it on. But, by then, the damage was done. Autism was out of control.

The salon was fairly crowded for early on a Saturday morning. People were staring. I was trying to quiet him down, and apologizing to the stylist at the same time. “Don’t take it personal.” He wasn’t saying anything bad to her or about her, but he did make sure everyone knew that he liked the “other” place better, he didn’t like this place, and didn’t ever want to come back. Stylist would say “head this way” and head went that way. Stylist would say “hold your head up” and head went down. Autism was mad.

Finally, he was done. Fastest haircut he’s had yet, though I don’t honestly think the stylist needed to push it that fast. She let her personal feelings, e.g. “get this kid OUT of here” get in the way. So, he’s right. I won’t take him back there. The manager approached me at checkout, while BB was trying to escape, I said “no, stay here” and he ran anyway. People were staring. One guy in particular looked flabbergasted (okay, there are other words but that one’s just fun to say) that he said no and ran out. I focused on the fact he didn’t run away, just outside the door. I can live with that. The manager asked what was wrong, and I explained to her. She was very nice, and didn’t seem thrown at all. But, still won’t go back there. He may be a handful, but he’s a child, a human with feelings, and a paying customer.

We went straight to the car, didn’t pass Juice It Up and didn’t collect a prize from the game machines at his favorite pizza parlor next door. Straight home. He complained all the way home about how his hair was too short, how everyone could see it, talk about it and not like it. Autism was on a roll. We pull into the driveway, dad’s walking out front just in time to watch BB slam the new car door. BB decided he was not going to go see the Easter bunny for a picture; in fact, he was going nowhere. Really. Two hours later, we were getting into the car to get our annual bunny shot. He smiled. The bunny was patient. The line was short and BB bought a stuffed monkey he named Butterscotch. It was a promise to us that he would stay at school all day, every day for the month of April. Do you want to know how it’s gone since? I will update that story tomorrow. Right now I have to go see if the school has answered either of my emails. The nurse and I are bonding, and I’m on her speed dial. Monkey see, monkey do? NO way.

First, today is World Autism Awareness Day. I wish there was a way to roll the word ‘advocacy’ in there, but a website url can only be so long and be remembered. Bumper stickers only so big. Headlines only hold so many characters. Check it out at: http://www.worldautismawarenessday.org. It isn’t the end-all, be-all for autism, but I’ll take it. If it gets just one more person to learn about autism, that’s a success in my eyes.

So much going on lately. No, no major illnesses, traumas, situations, just a lot of stuff. Just a ton of stuff. I bought a new car; I figured driving an 8-seater SUV we bought when we had all the kids younger with us regularly no longer was necessary now that I’m driving just a couple around. I also hated parking The Tank on regular errands, and my dh either took pity on me or got tired of hearing about it, so he decided the time was now. I got my ‘dream car’ for all intents and purposes and in today’s economy, got one heck of a deal that makes it completely affordable all the way around. (And to fill a tank on $35 — who knew you could do that??) Getting the alarm/bluetooth installed took FOREVER to get resolved, but the dealership was spot-on solid about customer satisfaction, so thumbs up to them despite me having lost almost a week of my life that I’ll never get back.  We also went camping and half of us ended up with the stomach bug. Work got busier, and the cockatiel noisier. (You’ll see why that matters later, I promise. I may be weird but I usually make sense.) And there’s ds.

The last few weeks, something’s been off. He’s had a lot of headaches over the last six weeks, resulting in the need for a panel of blood tests and an MRI. (Or as he keeps calling it, an “MRD.”) He’s been tic’ing a lot, this gulpy breathing tic that bothers me more than it should, way more than it bothers him. His temperament is completely unpredictable; he’ll be great one minute, inordinately angry the next, and crying a few minutes later. Then there’s the lips. And that’s where the problems get worse.

With the headaches/migraines, ds has had a hard time finishing a full day of school without a visit to the nurse. We try to get him to stay the whole day, but if his head hurts, he can’t. Yet, if I keep bringing him home, he’s got too many absences. We’re waiting on our follow-up neuro. appt., but that’s not for two more weeks. There’s no way to get him in there sooner, and even that will require him to miss some school time.

Attendance at school is not as important as we’re led to believe. As a past homeschooler, this I know for sure. I may not know everything about autism, but I know that autistic kids interpret stress and other things they can’t identify in ways we don’t understand. A headache could be anxiety from having to sit still too long while waiting for other kids to finish their work, a problem he tells me about frequently. (He chose to up his RSP time to help with that.) A tummy ache, that could be stress from trying to get along while the buzz of the fluorescents and the breathing of the bumping child next to him distracts him. We all get these things, but as non-autistic people, we find ways to get by. Our kids? Not so much. These are things not easily remedied in a school setting, but if we bring them home, not only are we showing them they can get out of an unpleasant situation and skip learning proper coping skills, but we have the dreaded lengthy list of absences.

So it puts the parent in a difficult situation. Unwinnable. You can’t necessarily make their illness go away while they’re at school, but if you bring them home, where they will feel better, then you have a whole different problem. What to do?

I’m giving my son a pep talk every morning. “Don’t go to the nurse’s office unless you are completely sick and can’t stay.” I don’t want the poor thing struggling through a day with a migrained, but where do you draw the line? How do you know? And how do you improve communication skills so the real problem shows through and isn’t masked in some aching body part?

Lately, he’s complaining about his ‘friends’ at school again. I say the word ‘friends’ lightly, because, in my opinion, friends invite each other to their birthday celebrations. Friends don’t ignore you when you call their name, and I’m not sure if it’s even called ignoring when the kid looks directly at your child and then keeps going. Friends don’t play right in front of you and pretend you aren’t there. I feel sorry for today’s kids in sort of a big picture notentirelymybusiness kind of way. (And if this doesn’t apply to you, disregard.) Kids won’t necessarily have manners, compassion and know how to treat a friend if they’re not taught. This is where parents come in. It’s not the school’s responsibility. (But, I would expect teachers to address it when they’re seeing it.) Parents need to teach their children how to not treat someone else badly just because they’re different. Not to ignore someone who calls their name. To be nice to someone when that person’s not harming them. How is a kid supposed to learn if mom tugs the little girl’s hand away as fast as possible when your child says hello? How is a kid supposed to learn if mom says “stop!” to her own child (and worse, yours) when they are playing nicely, for no other reason than she doesn’t want her perfectly neurotypical child playing with your non-infectious ‘different’ kid.

See, here’s where I differ from a lot of people. I haven’t shared my son’s diagnosis with the classroom and students at large. I don’t feel I should have to, nor do I feel it’s in his best interest. I’ve considered it. (Well, “we,” as in dh and I, but I’m the blogger, so I’m going to talk about me. It really is all about me.) But, the judgmental attitude I experience with some parents wouldn’t magically disappear. Many parents would just change from “you poor kid, you don’t have to subject yourself to playing with the different little boy” to “you poor kid, I won’t force you to play with the kid who can’t control himself.” Yeah, I have a bad attitude…today. Or often? Hard to say, but I am still wondering how my son is supposed to fit in, or learn to fit in, with other kids his age when few give him a chance? We expose him to as many groups of kids his age (and older/younger) as we can, but his differences make him stand out, and few people want to take responsibility for having to deal with it voluntarily. So, he’s been invited to two birthday parties in the whole last year, and two friends have him over. And I know, we are more blessed than many by having those two friends. Thing is, my son’s not that much of a handful. He is a handful, yes, but there are times when he just needs to be a regular little boy. But, I digress. See? So much to say, so little time..and room.

It’s after 1pm my time, and no call from the school yet. He has an awards ceremony in an hour, and I will be there in the front row, or I’ll have to show someone else out of my reserved (ha) seat. He’s getting two awards. I can’t wait to see the smile on his face! People often underestimate the importance of praising a job well-done. They don’t realize that so many autistic kids want to do well, they want to be a part, to be accepted, and to be proud of what they’re doing. They’re proud of it, so they don’t see why others aren’t. My son will float for getting awards. Such power in saying “good job.” Such positive motivation to say “I like the way you xxx” instead of saying “Why did you xxx.” If only we could teach everyone that.

So what did you do for World Autism Awareness Day? There’s still plenty of daylight ahead, so what’s your plans for the rest of the day? My respite nurse has a sick child, so I won’t be using my respite tonight, which scratches out my plans, but on the other hand, I’m going to take my little guy to Borders to buy Jenny McCarthy’s newest book, Healing and Preventing Autism, and we’ll hit up Seattle’s Best while in there. (Grab her book if you can! She and Dr. Jerry Kartzinel did an amazing piece on GMA this week, despite all GMA’s “experts” refuing what they said. The proof is in our kids though.) Then we’ll come home, make some pizza, and snuggle as the clouds and rain rolls in. Works for me!


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