Autism Watch: 2007

Posts Tagged ‘tantrum

Back when BB was newly diagnosed, our social lives took a major hit. At the time, we didn’t care — we were too worried, too overwhelmed, overextended and exhausted. It got better as years went by, with us having a smaller, more focused group of friends and a new idea of what was ‘fun.’ Our priorities shifted and we adapted to the new way of life.

Now that BB is older, we can leave him with an older sibling sometimes. We don’t do it often, but it’s nice to know that there’s the option if something’s a big enough of an occasion, so we’ve got the ‘time out as a couple’ problem covered.

The other problem though, perhaps the bigger issue, is getting the day-to-day, run of the mill, routine errands and outings covered.

Today, BB had a homeschool event. Since we live in a small town, we take advantage of being ‘out in the big city’ to get things done. I had a list in my purse of things I needed to do: another shot at the podiatrist office, Petsmart shopping, a certain candy mold at Michael’s, prescriptions at the drugstore, book dropoff and pick-up at the library, and the gas station. I dreaded the list, so I could totally get that BB would, too, but what choice is there?

As we drove home, halfway through the list (as a few things were here in town), I was thankful I’d been able to accomplish as much as I had on top of the science class, but worrying if I’d be able to finish the rest. They were non-negotiable: books were due, car needed gas, and the prescriptions had been sitting at the pharmacy for days. Each one should have been just a few minutes, but a few minutes here, a few there, and before you know it, you have a kid so anxious and overwrought, you wished you’d scrapped the very idea of taking him along.

Luckily…or maybe because I reminded him that I didn’t push him to stop and have lunch with me so he needed to do this for me and so I wouldn’t have to go back out later…he did fine. Now, fine is relative. It’s “fine” if you think him leaving my car window down and locking it (?) while I was waiting for the pharmacy to fix one of the prescriptions to find me in the store is “fine.” It’s “fine” if you think him yelling at me to hurry while putting gas in the beast is “fine,” and it’s “fine” if I don’t mind him telling me “You know, you could have just dropped your books in the slot and not gone inside.” (Yes, that would have partially worked, but what about the book I had on order? Another autism book, though he didn’t know that part.)

Let’s just say it was successful in that I got my errands done and he didn’t have a meltdown. It was neither fun nor relaxing, and by the time I walked in the door…dogs jumping at me and mail falling out of my hands…I was beat. I piled the purchases, the bags, the purse, the receipts all over the counter as I calmed the Yorkie. Got BB settled in his room. Grabbed a beer…no, not really, but I may have wanted to. Maybe. All the while, I’m feeling slightly resentful that I didn’t get to pick up a decent lunch and that I again had to head home, hermit-style, because BB wouldn’t acquiesce to head into the deli for a sandwich.

I contemplated the resentment as I was balancing the checkbook from the day’s expenses. Maybe not the best time to have a serious thought discussion going on, but I realized that though I’d saved $20 and not endured a miserable lunch out in public, worrying that he wasn’t behaving, I was still having to craft the time around him a lot. Some things are vastly better, and this area is, too, but there’s still a ways to go.

Add ‘Handles social outings with ease’ to my list. Or at least with a semblance of tolerance? How do you do it? How do you meld your acknowledgement that pushing your child too far isn’t fair to him with your need to get out of the house?

 

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.

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

Can I scream that any louder?

Maybe I’ve been dealing with autism for a long time, or maybe I’m just hanging with the wrong people, but there are days I want to block myself from anything and everything that is autism other than something related directly to my son. Ever feel that way?

What inspired my rant is when a parent I have known forever has an adopted son with autism, and he’s not enjoying ESY. (Extended-school year.) I don’t blame him, is what comes to mind. If he’s that unhappy and throwing tantrums each day, grabbing onto mom as he goes out the door and there’s no real ‘school’ during the summer, maybe staying home with mom is more beneficial. But I don’t say this. I can’t say this to this particular friend, because she is mired so deep in her child’s mild autism that she doesn’t realize that each and every conversation is about her son. His tantrums. His sensory issues with bright lights. His hate for clothing tags and his dislike for food that is square. His obsession with neatening up all the books on her office shelf every day. You know, the same types of things most of us deal with every day, so I can relate. But what I can’t relate to is her incessant negativity. I can’t tell you the last time I’ve heard anything positive about her beautiful red-headed green-eyed boy who, like BB, has a vocabulary that stumps some adults and who can tell you each and every thing about military aircraft. I don’t hear about how he just had photos accepted into a gallery in their town (as dad shared his photos one day with the owner, so his son is the youngest artist on display there ever!) or how his school teacher is cooperative and easy to work with, or how he can dive off the diving board into the pool barely making a splash. If you talked to her for a long while, chances are you wouldn’t hear any of the above unless you talked to her husband too, as I did to learn all the above, but you’d know how he’s still not potty-trained completely and how he doesn’t sleep at night. Oh, and he has an obsession with flicking his nose. (Not picking, flicking it in this odd way that’s completely eccentrically cute though I don’t know how his nose isn’t sore! Thing is, she sees it as one more thing she has to fix, and while I relate, come on, give the kid a break already.)

He’s her son, not mine. I don’t know what it’s like in her house 24/7, and neither of us know what he dealt with the first 18 months of his life before he was hers, so I am here for support but one day, I may just either bite the tip of my tongue off or lose it and ask what good thing he did today since I don’t want to have to call her husband to find out. (And in case you’re worried, she isn’t on the internet so she won’t find my bloggy story. In this day and age, it amazes me that I know three people who still really don’t participate online in any way. No email, no blogging, not even internet research or online bill paying! How does one do that?)

Next time BB’s having a bad day, I know I’ll likely have a lot of venting to do or I’ll share my displeasure in some way, but if I make an entry where I say nothing good about BB, let me know. My son is way more than autism. He’s a musical savant. He can do math far better than me. He knows HTML and designs video games. He’s drawn up a business plan and knows what he wants to be as an adult and how many kids he wants. He makes me laugh with his outrageous questions, and has far more wisdom than many of my peers, and even more than I have some days. When you talk with me, you probably won’t hear about autism unless you bring it up. He’s BB, and BB just happens to have autism. He also happens to be the cutest, most adorable, and most amazing kid I’ve ever met, and that’s what I focus on every single day. Even on the rough days, when I’m exhausted after he goes to sleep, I watch him and am thankful for what a gift he is.

Recently, I had a discussion with someone about how my advocacy style was so different from hers. She’s gung-ho about telling everyone she meets about autism, blogs about it frequently and does it without the protection of anonymity, and most conversations end up including autism to some extent. Me, on the other hand, I don’t mention it so much. Not only does my husband not care for it when I tell a random stranger, even for the purposes of perhaps helping one more person understand our kids, but I am tired of getting the ‘huh? uhm, yeah, okay’ response. I blog with anonymity, referring to my beautiful son as Barnacle Boy, a childhood nickname due to his attachment to me (still) and don’t want him ever reading this when he grows up. I also don’t want the people that I run into to feel like they aren’t going to be open with me for fear of showing up in my blog someday. (I know people who’ve found themselves the subject of a negative blog entry or comment, and being the social outcasts we autism moms already frequently are, why up the number of people who don’t know how to talk to us?) I also try to not include autism in every conversation — let’s face it, after almost seven years of a diagnosis, my friends know what life is like, they understand when I’ve had a bad day, and I only need a few words to convey what’s really going on. Saying “school called again” with a sigh is enough. Or just saying “it’s been a long day” suffices. They get it.

I think a lot of it has to do with the fact I’m not immersed in treatment 24/7 right now. I used to be. I had to be. My BB would bang his head on the floor in pain and/or anger and frustration, and he’d pull out his eyelashes. He’d bite himself, and us, tags and normal clothing textures made it hard for him to get dressed — and stay that way — and crying babies would throw him into a tailspin. His communication skills were off, he had no eye-contact, and the random stranger touch freaked him out. And then there’s the running away, the sensory issues, the other behavioral issues, and the social skill deficits. In many, many ways, there’s been vast improvement. Most people would look at him now and wonder why we’re so worried. But those would be people who didn’t see where we’ve been. They didn’t see us with bitemarks and bags around our eyes from lack of sleep or worry. They didn’t have to sit with us through a blood test to check his blood sugar level that was too high during last month’s physical (which was a wreck itself, because he hates being touched by strangers and of course, the doctor wants him to be almost completely undressed and that doesn’t fly with BB) nor go with us to the dentist, which was only two months ago that we had to switch because he bit the guy and caused him to novocaine his own hand.

But we know. And that’s why I continue to advocate, but in my own way. I focus on educating those that have direct interaction with BB, or those that ask me because they want to know more or know another family dealing with autism. I still throw out info to the random stranger sporadically, but I figure that unless there’s a reason, I don’t need to necessarily give them our story when I don’t know what they’re dealing with at home. Years ago, a woman felt the need to chastise me in public for telling my kids, while I was writing a check in a crowded store, to quiet down.  “You are so blessed to have them, you should remember that.” Uhm, okay? “Yes, I am blessed, I know that because of fertility issues that required a lot of fight to get my family size to where it is today, which isn’t your business anymore than telling me to not tell them to quiet down. Thanks and have a nice day!” Moral of that story? You never know what that other person already has dealt with, or is dealing with, so pick and choose who you give the autism story to. My feelings are that advocacy is most successful when used judiciously. Sometimes we are advocating for ourselves — it makes us feel better, but just makes the other person feel worse, and it is no longer advocacy.

My goal is to advocate for my son in a way that helps him, and the autism population at large, but without constant intrusion or sounding like a broken record. I have three other children, a full-time job, and a husband. I only have so much time and energy to go around, and for my sanity, I need to move on to other topics. My friends need me to move onto other topics. They need my listening ear, and to do that properly, I need to be able to focus on them; the time will come when I need them, again, and the friendships I’ve kept while on this autism rollercoaster are more valuable to me than I can possibly ever convey to them. The few strong solid friends who I will call friends forever are worth more to me than the many that I lost because they couldn’t understand why I couldn’t get through a five-minute phonecall without hearing BB cry or get upset in the background; they couldn’t deal with my being unable to go out to their house without BB having a meltdown or they’d get freaked out when he’d hide under a table; they couldn’t risk their child having to witness mine crying because he was again left out of a game or because I wouldn’t let the other kids call him names; mainly, they refused to understand autism and my son’s odd professorial-type of vocabulary fooled them into thinking he was just a brat and we were bad parents, with the fact that we had three other children, all older, who weren’t ‘brats.’ The list goes on, and there are times I wish I could really give those people a trip through time to show them what life was like, what we’ve been through, and most of all, what my amazing brilliant son has gone through, and how far he has come.

Our children are the epitomy of courage. They don’t give up. They are examples and should be seen as the brave people they are and that’s where I want to focus my advocacy efforts for now. I don’t want to raise money to go in some administrator’s pocket or tell me what gene my son has that’s not right, nor tell me some other reason why it’s my fault he has autism. Sure, I want to know the reason so we can prevent other families from going through this, but I also think money rarely goes to the families who need it the most — those dealing with it now. One-income, two-income, ‘rich,’ poor, it doesn’t matter. It’s too hard to get help, and as a result, we learn to do it ourselves, and that’s advocating for our child in a way no one else can do anyway. So even when we’re not publicly advocating, we’re privately advocating, and that’s enough for me.

 

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?


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