A brush with autism

I was at the playground with my children yesterday: the six-year-old Peanut was scootering like a madman and two-year-old Butter was swinging on his tummy. I sat next to the little guy on an empty swing and…just sat.

I hate swinging. Nauseates me and make me feel out of control. I know…you’d never know how treacherous a playground could be for control freaks.

Anyway. I saw, out of the corner of my eye, a boy walking too close to another swing and a woman calling him.

“Roland! Roland! Too close. Roland, back up.” He was miming pushing the swing where a teenage girl was going about as high as the swing allowed. Each time the swing got near him, he got as close as he could without touching.

“Roland! You can’t push the swing! Roland!” He didn’t change his motions at all.

“Roland! You can’t push the swing. You didn’t ask her.” He moved back at this. And I stopped watching, convinced he was now safe.

“Why don’t you push someone who would say yes? Let’s ask someone. Let’s ask a mommy.”

I braced my stomach. I knew I’d be asked. I knew I’d say yes. And I didn’t want to puke if he pushed me high.

Roland walked beside me and looked away. “Ask her.”

“Mommy,” he said to me.

“Do you want to push the swing? I would like that,” I said.

So he carefully, and slowly, climbed on my lap facing me.

It was clear the woman who suggested asking me did not intend that. She started sputtering “Roland, let’s push the swing. Roland, that’s not….Roland, you can’t…”

“I don’t mind,” I said to her as I checked to make sure Butterbean was still swinging. I looked into Roland’s eyes, which were searching my face. “Are we swinging? Swinging is nice.” Roland is almost ten years old and weighed so much that I had to keep my toes on the ground as I rocked us back and forth. “Swinging,” I smiled. He kept looking at me. I looked back.

“Roland, why don’t you push her. Get down and go around and push her swing. Get down, Roland.” He paused to process that request, then did as she asked. And walked around behind me.

He stood, trying to get his hands right. He moved my hands on the swing’s chains first up, then down. He got just the grip he wanted. And he leaned against me. Then kissed me on the head. Four times.

It felt like pure love.

And the woman, his nanny, spent a while telling him why he couldn’t kiss my head.

But he can. Anyone else would have gotten an earful about boundaries and acceptable behavior. But in my book Roland gets to have different boundaries and has my permission to kiss my head.

I have no idea what the caregivers and parents of differently developing children go through. Not at all. I can’t imagine what childhood, puberty, and adulthood mean for the caregivers of children living with autism, Down’s syndrome, and other developmental differences. (And obviously I haven’t the faintest notion what it feels like to the people inside those very broad and sometimes limiting labels.) But I do know enough about autism to know that I was very, very lucky that Roland knew what he liked and could express his joy. I’m lucky Roland knew about “yay” and about “thank you” and about kissing. I’m lucky Roland made eye contact with me.

Roland wasn’t inappropriate. He was glad we got to swing. He was glad he heard “yes.” He was enjoying the day. And he told me that the way he knows people say “yay.” He kissed my head.

That was hard for his caregiver, because that’s not what people are supposed to do. Her job is to tell him “no, we don’t do that. You’re not supposed to kiss a stranger when they’re nice. Kissing is too much for a thank you.” I know she chose a mommy for him to push because other kids don’t understand and aren’t used to making accommodations. Moms are expert in accommodating.

I wish Roland never had to hear that kissing is too much for a thank you. My wish is that the whole world decides, effective immediately, to cut people with differences some slack. Empathize, understand, appreciate. If someone is too physical because they have processing or sensory or developmental needs you don’t understand, let go of your personal space boundaries for a minute and accept their physical version of a polite conversation. If someone who has trouble with eye contact won’t look at you, for heaven’s sake, dismiss your social mandates for a while and talk with them on their terms. If someone who doesn’t understand the rules of society gets too close or touches your car or talks too loudly or smiles inappropriately, just relax a bit and meet them on their level. Have some compassion, world.

Please.

My wish is that we all learn a bit more, and empathize a bit more, so people like Roland can have nice days at the park.

Because I would never speak for Roland, but I had a damned fine day at the park.

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95 thoughts on “A brush with autism

  1. I could hardly get to my computer fast enough to comment on this. It actually made me cry. Being the older sister of a brother with Down Syndrome, you hit the nail on the head as far as one of the hardest issues we have all dealt with (in my family) as far as acceptable social behavior within our society and how those boundaries are to be taught to a glorious being who has more cuddly, pure love to offer than anyone we know. Those with Down Syndrome, especially are very physical beings, in the most beautifully innocent way. As a child, this aspect of him was easier to handle and mostly welcomed by friends, acquaintances and strangers. Most, like you, found him soul-filling and a breath of fresh air. While I still find him to be that way (especially with the voice mail he just left me 20 minutes ago saying “Hi, em. Just calling to say I love you. How are you. I miss you. that’s all. come home.”) it’s a different ball game now that he is a man of 28. He feels no different than when he was an adorable little blonde eight-year-old boy, but he isn’t that little boy anymore and people respond to him differently. I must admit, even I break away from some of his hugs a bit earlier than he would like. It’s tricky. Very tricky. But, I am thankful, as is the rest of our family, for people like you, who are open to making loving connections (if not a bit awkward) in the park. These moments mean more than you know.

  2. I’m in tears – what an amazing moment. And I love everything you said here. Yes, we can’t expect everyone to play by the same rules, especially when some of them aren’t even in the same field or court as us. Great piece!

  3. Roland’s caregiver said that he was severely autistic, and I have no right or place to doubt her. Except his affection and ability to make eye contact meant, to me, it wasn’t as severe as numbers or scores or diagnoses might say.

    I have to say, I feared autism more than any other difference for my children. I have no idea what families with health issues go through, and I don’t want to minimize anyone’s issues when I’m speaking from a place of ignorance and gross luck. But autism terrifies me as a parent like nothing else does. Just. Terrifies. Me.

    I just don’t know what I’d have done if Roland were a grown man. We have a group of very different adults who visit a playground near us; my youngest doesn’t notice but my oldest is just starting to stare. The men in that class/group have a variety of processing differences. Most seem very sweet, but we tend to leave the playground because the men get (understandably) agitated when other people are on the swings. I don’t want my boys to think we’re avoiding these men; and we’ll have a talk soon about respecting their needs and differences sometimes means giving them space.

  4. @Emily my sincere hope is that I made Roland and his caregiver just a little happier. I have no idea how their lives feel, but I think they deal with more and need more and experience more so they deserve more.

    @matt thanks. don’t tell the people we know that I actually have a heart, okay?

    @justine thank you. I have to admit to quite a few tears while writing it. Life’s just so shitty sometimes and life’s just so lovely sometimes.

    @subWOW thank you. This is the kind of issue that just makes me want to stop the world. Animal cruelty, women’s rights, children’s safety, toxins, and overall human kindness make me want to bellow from mountaintops.

  5. A friend of mine had a brother who was developmentally delayed, six feet tall, and big. And it was scary to come to the house sometimes, because the brother would grab hold of people unexpectedly, bellow, and not want to let go. Usually the family would try to keep him out of the way, but it wasn’t always possible.
    I hated how uncomfortable it made me feel, being grabbed, but it was scary. I was glad my friend trusted us enough to keep inviting us over, because it had to feel isolating, wondering how the brother would react to strangers. I didn’t know what else to do than to restrain myself from shrieking or pushing him away. I hope it was enough, because he never hurt us, and the family obviously had a lot on their plate.
    I’m so glad that Roland had a chance to act _so appropriately_ with a stranger. And that the stranger was you, able to take it for the gift that it was.

    • Hi, Tiffany. I still remember how nice it felt. Because he really meant it, and wasn’t thinking anything else at the time. There’s a purity to concentration so hard won, isn’t there?

  6. I saw this posted on FB again this morning and cried again when I read it again. Both of my boys, 6 and 4 were diagnosised on the autism spectrum in the last 8 months. One I had suspected for years, and one that rocked my core because I was so busy trying to focus on the first, that I didn’t see the signs. Here’s the thing for us. My boys are loving and want to be social, they just don’t always know how. They make eye contact with those they are comfortable with. You wouldn’t know right away that they had autism, but you might think they were quirky and cute. God knows I certainly do. Somedays I fear for there future, fear that they won’t be able to navigate through social situations the way society dictates they should. Other days, I don’t worry. Somedays I hear myself saying to others that they have autism, then I’m disgusted with myself because its not a disease. You can’t catch it. It’s a developmental delay. And with help and therapy and patience, I hope that the both of them go on to lead the lives that they dream of. I feel lucky, blessed and humbled everyday. And I’m sure that Roland felt lucky that day to stumble upon someone like yourself who let him be himself.

    • I wish you and your boys every happiness. I genuinely believe most people are good and kind, and they will be as gentle as your boys need. OT is amazing and can do wonderful things with young men like yours who need skills. Our social structures are complex, and learning them sometimes requires extra.

      I just wish we could wear a button that says, “yes, I understand. Feel free to abdicate a few of the rules while you’re with me.” Because it seems so daunting to explain all the ins and outs of whom to trust.

      Thank you for caring so deeply for your boys. You’re changing the world.

      • You humble me. I’m
        Not changing the world, I’m just loving my boys and being a parent. They are a gift. And your ability to answer every single one of these comments with grace and elequoance astounds me. Thank you!

        • All children are a gift. And a one-way ticket to crazytown, if we’re honest.
          I said to my husband earlier this year that I’ve never, ever been able to achieve grace, though it sounds like the best state of being ever. I shall now frame your comment and consider my life complete. ;-)

  7. I have an autistic 5 year old. I do always worry that when he goes to hug the say Maytag repairman that comes to our house that he might be taken aback when my son run’s to him and hugs him. Sammy doesn’t care if he is filthy and covered in grease in his mind this person needs a hug and some lovin. We recently built a house so we had a lot of people back and forth working on things. I can’t think of one worker that wasn’t touched physically and emotionally by my baby. I have seen more sweaty workers kneel down to accept his hug then you would believe. I do try to teach him that hugging everyone isn’t really necessary but he just likes to hug. I am so glad you recognized the love behind those kisses.

    Kindness isn’t something a lot of people are born with. We learn it from our parents, friends, relatives and neighbors. There is an autistic young man in my neighborhood. Some people shun him or roll their eyes when he comes around. I have made sure to hug him and talk to him with respect and I make sure EVERYONE See’s this. They don’t realize that’s MY child. That’s a lot of people’s children. It’s so easy to be kind. Why aren’t more of us like you?

    • A whole family addresses autism together, don’t they. People often forget how difference changes everyone in the family and how they see the world and interact with it.
      So we’re just making the family global. :)

  8. I’m crying here. I have to say. I’m a mom with children on the spectrum and just that moment of kindness, of acceptance, of love you showed for Rowland is what I want the world to show my children. A friend posted this on Facebook and I have to say, it touched me. Thank you for not shunning Roland and not walking away. The lives of our children are not easy but there are so many wonderful and sweet moments that just take your breath away. This, this, this post took my breath away. Thank you again.

    • I think shunning difference makes the world cold. Pretending there isn’t difference hurts all kids. There’s a group of differently processing adults who play at one of our playgrounds and I talk to the boys about them. About how some brains are different, and how we don’t have to be scared. That if you watch for a minute, you know what people need. Then you can choose to play side by side, or move away, or play together. But that being scared of difference doesn’t help anyone.
      Good luck to you and your family.
      I’m glad to know you.

  9. Thank you SOOOO much for writing this. I am sharing this far and wide. I am the mom of two sons, ages 5 and 6, that have autism. God bless you! I am so thankful people like you!

  10. This had me in tears. If some people would just be more receptive, listen, and not judge it would be such a better place. Being kind to someone can change everything ! My son is 15, Autistic/ADHD/ Tourette’s , I would say moderate, his sitters say extreme, but they haven’t seen how bad it can be. He’s a hugger, he remembers names, it’s one of his “talents”. If we met you next week and saw you again in a year, he would know your name, me…. not so much lol He politely asks for hugs, however he’s 5’6 , 145lbs with the booming puberty voice so it’s kinda creepy. I get it, and have been curbing this with handshakes, and just say “hi, you can smile, smiles are nice. But for every one person that says Sure Buddy I need a hug ! WOW his whole day can change. Makes us adults put things back into perspective huh ! I went to my sons school and they were doing a walk through about fire alarms and where to go etc.. Of course here comes my son’s class, can’t just sneak in ! It was like an assembly line, Josh was first, gave me a hug and I explained he wasn’t coming home with me , I had a meeting, be good !! Then his classmate hugged me and the next and the next. Meanwhile the teacher is like uh…no let’s go, okay, no more huggin…Let Josh’s Mom go ! come on !! lol I hugged every one of them, they’ve been in school together for 9yrs, they know me, no harm, heck that made my whole week better !! I made every one of them smile ! sometimes it’s okay to bend the rules !! :)

    • Rules are meant to be bent, especially for hugs!
      I often think about how much harder difference gets after puberty. We have a group of adult men pretty far on the spectrum who play at a local park. It’s very challenging for me to be as open with them as I can with children. I want my boys to see me being kind and accepting, but I also want to teach them not to hug most strangers. So we talk about processing differences. And how when people seem different you need to figure out if their differences are friendly or worrisome. There are a lot of homeless people in our town who have significant processing differences, and some are probably genuinely dangerous. So I have to teach context and perception. Some kindnesses are hazardous and some are just necessary to being human. And with kids, they’re always necessary kindnesses.
      Hug away!

  11. This made me cry. As a parent of an autistic 7 year old, an autistic 7 year old who loves swings, an autistic 7 year old who shows affection with little drive-by kisses, thank you. When we meet parents like you on the playground, it gives us more hope than you can probably ever imagine. Hope in that parents like you, who are accepting, caring, and kind, teach your children through example..and in turn, they will be accepting, caring and kind when my son enters their classroom or sports team or play group. Thank you.

  12. Ah, this was amazing. What a read. As a teacher, this really affected me. Making accommodations is so, so integral to being good at what I do…thanks for the reminder that not all of these accommodations are academic! Some are personal/emotional.

    • It’s tough to teach society that everyone has the same rights but that doesn’t mean they get treated the same. Rules need to be different and children need to grow up seeing that. Equality is not about fairness; it’s about some people needing something different and most people needing to learn critical thinking about difference.
      Thank you for being a teacher. What a gift to the world.

  13. As the mom of a little girl who has been “Roland” at many a playground, I thank you – from the very bottom of my heart – for what you did. You have no idea how hopeful this makes me feel.

  14. Yes! Thank you! Yes! Can we be best friends? Can you follow my little girl and I around and educate those that cross our path, give the looks, “politely” give us “space”, or try to pretend the don’t see us? That’d be great!

    • I’m so sorry that people are hurting your feelings. I wish people didn’t fear difference. Let’s play together and show everyone that coexisting means overlapping and engaging and asking and smiling.

  15. I’ve never visited your blog before another Autism mom friend of mine posted this on Facebook. I now sit here with tears streaming down my cheeks. Thank you. Thank you so very, very much. We need a lot more people like you in this world.

  16. Hi! I have never seen your posts or read your material…I found this on good old Facebook!! So I read your post tonight and well as others have said…I also cried!! My husband and I are now raising his 14 yr old grandson who is Autistic, ADHD..ADD and now dx with Tourettes! He may be 14 in age..however, he is still a small 6 or 7 yr old. He is now 5ft 7 inches and weighs in at a whopping 110. Its so hard to get him not to hug others…we dont want others to make fun of him at school. However, since reading your article…I have made a huge decision…let him hug!!! He does not use eye contact very often…but he does love to hug! Who cares if its not appropriate…who doesnt need a hug!! As others have said here if I could kiss your head I would!!! Thank you and I will NOW be following you!!! Hugs off to you and everyone else!!

    • What a challenge when love comes in a different package. Everyone needs a hug. Of course you worry that his size will frighten people or upset some people. The heartbreak of autism is that the rules have to be set…either there’s hugging or not. He can’t read cues or judge by reactions.
      Good luck!

  17. Thank you for writing this. My four year old son (who is not formally diagnoses but has ASD) at times approaches people he is barely acquainted with and gives a huge bear hug and smiles at them. It warms my heart that others are okay with this while I sometimes cringe that he is generalizing hugs to people that are not “supposed” to get hugs. People like you make it just a little easier to be a mom of a kiddo with special needs. Thank you.

    • Oh, Julie. There’s just nothing easy about it, is there? I feel so inauthentic posting about autism when I’m raising typically developing children, but my moment with that little boy was so real to me.

      Many four-year-olds hug wantonly. They learn to read cues and hug more appropriately. Maybe your son will, too. Or maybe he’ll surprise people with the joy of a hug for years and years. :)

  18. you are a beautiful person inside and out. you have touched my heart. i have an 11 yr old son with autism. he is very loving. he hugs and kisses me all the time. i treasure every moment of this. he is so pure and honest. i wish everyone could be so open and accepting as you were. we all are different -with special needs or not- and we all need acceptance
    thank you for your kind heart.

    • Thank you for taking such loving care of your son. That’s all we can really do, right? Do our best to give our children the love they need to give others love. And sometimes that looks different. Good. Life is a spectrum, so I hope we all appreciate that people exist on one, too.

  19. This was perfect. As a mom to 2 boys on the spectrum who are both super inappropriately affectionate…..thank you. :) who wouldn’t want kisses on their forehead. What a gift.

    • I’m sure there are some people who don’t want those kisses, but they’re the ones who need them most.

      Super inappropriately affectionate is taboo in our culture because we have so many issues. I can’t imagine the challenges of parenting a child on the spectrum, but I guess that your children’s lack of cynicism is wonderful.

  20. Thank you so much for this post. As a mother of a two year old daughter with downs, I really appreciate your perspective – especially after a day where we had to wait hours in a specialist’s office. My husband and I tried to entertain our daughter without allowing her to bother others. We tried to allow her opportunities to explore like a typical child without apologizing or making excuses for her. She’s already been through five surgeries, countless tests, etc. but is beatng the odds. We want others to see her for her potential, not her limitations – although we know that will most often not be the case. Today, two young but mature children were in that lobby – willing to adore and interact with our sweet girl while they waited for their sister. They had perspective – on accepting and celebrating the challenges their sister had faced head on. If only we could all accept others so willingly and appreciate their unique gifts as just that – gifts and not limitations.

    • What an articulate and lovely sentiment. So glad your daughter had a good experience with other children today. I hope that happens again and again, for the sake of all the children involved.
      I don’t know anything about raising a child with Downs, but I know it often includes visual markers that prepare strangers for difference. I hope that helps children and adults alike take the time to get to know your daughter. She deserves to have friends who treat her with love and kindness. We all deserve that.

  21. Thank you so much for this post. My son with very low functionining autism is 35. JR still loves to go to the playground and swing. He has never offered to seing anyone else but if he likes you, he will bend your head down and nuzzle in your hair. Needless to say, this has taken some folks by surprise and their reactions vary! I so appreciate the few who understand that these actions are a compliment and appreciate them. No matter how old our children are, they are still our babies and it still warms a moms heart when the rest of the world sees beyond the obvious and into their sweet heart.

  22. As a mom to 6 year old triplets (my son is non-verbal autistic and he LOVES to swing) THANK YOU. Thank you for swinging with Roland. Beautiful.

  23. You have no idea how touching your post was for me. I have twins on the autism spectrum who are considered high functioning and there are so many days I wish – just pray – that we can make it through a store without getting looks. Yet you went above and beyond with compassion and I promise you, though I don’t know this family, I know that you blessed them with a gift that is irreplaceable – acceptance. Thank you, on behalf of all special needs families at the park and elsewhere!
    I also write a blog. In a recent post I shared one of my experiences at a park. I hope you don’t mind that I put the link here; I think it’s good to have as many of these testimonies floating around the internet as possible :) http://www.lifeasarinnagade.blogspot.com/2013/03/dear-mom-at-park.html

  24. So beautiful. Reminds me of my own young grandson with developmental delays and Autism, we are always saying “this will be awkward when he’s 40!” I hope that people continue to be kind and accommodating to him even as he grows into an adult. (of course, gently letting him know he can’t sit on their lap!) :)

    • That made me laugh, Donna. He might well want to sit in a lap when he’s 40. I can tell you Roland was pretty darned heavy, so when he’s an adult he might squash me. ;-)

  25. Tears here. My 5-yr-old is on the spectrum, and (to my distress) he hugs and kisses strangers too. They usually seem pleased enough and tell me it’s OK, but I worry about the “inappropriateness” of his actions. Thank you for putting into words for me what someone might be thinking as I hurry my sweet boy away.

    • I wonder if a few strangers who gently tell him “thank you but I don’t like hugs and kisses” would help or hurt. Horrified response would be terrible, but what about a kind definition of boundaries? Probably take a lot repetition.

      I hope there are that many kind people on the planet. Maybe there are!

  26. As a mom of a 7 year old autistic boy, thank you. Really, thank you. These small connections like Roland had with you are huge for our children. I have one of those, although verbal, who doesn’t understand social boundaries at all. And he is loving and affectionate. Will hug anyone. And for the most part, we’ve been blessed so many times by the reactions of strangers. One of the things I love most about being a special needs mom is seeing the goodness it brings out in other people. And most of them are good. Thank you for confirming by belief in the goodness of mankind.

    • So happy to make you feel that there is hope in the world. I often think there might not be any.

      I do think, often, about what people will accept from children but not adults. About non-typically developing kids as they reach puberty and adulthood. It’s a huge parenting challenge, I’ll bet.

      But the hugs probably help a lot. ;-)

  27. As an autism mom, I can’t thank you enough for letting Roland be Roland. I have tears. I hope every NT parent reads this post. Thank you thank you thank you!

  28. I am the mother of an almost 8-year-old who is so tall that people think she’s 10 or older. She is autistic and greets people by patting them on the belly, which catches people off guard. I could certainly relate to Roland’s nanny, and I thank you for writing this.

    • I know this is the wrong response, but patting people on the belly is adorable. I’m sure people are not always sure what to do, and I’m sure you want very much for her to modify her greeting to something more typically appropriate, but I think it’s ferociously cute. I do hope that doesn’t diminish your experience. I mean it in the kindest way possible.

      I could use a good belly pat. :)

  29. Thank you for this! I am the Mother of a 5 yr old little boy with Autism…Thank you for your patience and understanding and compassion for Roland and his caregiver. The world of Autism is not always easy or fun and sometimes we get a little lost, and sometimes it is even a little heartbreaking when adults scowl at you and children turn and wont play with little ones like mine but at the end of the day we have our kids and people that don’t take the time to understand will never see or experience the sheer joy that our kids bring….On behalf of me and all of my Autism Mommy friends Thank You!!!

    • It seems as though parents of typically developing children would want desperately to do something to help. Anything they can. I know I do. Families living with autism have challenges and they also have a lot to teach typical families.

  30. Thank you for sharing, but mostly bless you for understanding! I pray your kindness will filter and shine on many more!

  31. I am a mother of a severely autistic 15 yo boy, and your blog left me in tears. My son is special, sweet and loving. I truly appreciate your response to Roland, and your candor of your concerns of older developmentally delayed people. I, too, have concerns on what will happen when my son grows older. Yet, I hope that there will be people like you…and me…who will respond to them in a respectful way. I always make a point of doing so, and hope that somehow my response will have a positive effect on society, even if a small bit, for more tolerance and acceptance.

    • Thank you, Karen. That transition from child to teen to adult is so intensely different for humans who don’t process typically. I can imagine the shift is slow and challenging, as with all children. But the results are quite different, aren’t they. I wish you all the best in surrounding yourselves with the very best people to accompany you on that journey. You and your son deserve respect, tolerance, and kisses on the head.

  32. Oh my goodness—as the tears fall, I can only say, how I wish more people like you could interact with my precious, beautiful, 9 year old son who battles Autism in the best way he can, every day of his life. Most of our family members don’t “get it” like you have…..Thanks for posting your encounter and sharing your experience with that most precious and special child…..

    • I think the world needs to stop, for a few minutes at least, to think about how their lives would change if they were parenting a young person who tries his very best every day in a world often seems to think his best is good enough.

      It’s just a really big deal to me.

      You’re welcome. Thank you for doing what you do every day, all day.

  33. Christine: I am even more honored to have met you this weekend at #BlogHer13, and to have spent the time getting to know you and your beautiful heart. You can add totally geeked out new fan to the new friend designation!

  34. Hi Christine, I really enjoyed your article. I would like to use it in a classroom setting (I teach high school at a private school, and would like to use this in a morality class); however, I need your permission to do so because you’ve exercised your rights to hold the copyright. Please let me know if I have your permission to use it (with proper citation) or if you would like to know more before giving permission, or if you deny permission. Thank you.

  35. This was just so beautiful. Having worked with people with intellectual disabilities for ten years I sometimes feel like I want to reach out to carers. I want to say I understand. I get it. Let Roland be himself with me because I accept him. Not everyone will afford you the courtesy but I will. Just as you did. Love it.

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