tag:blogger.com,1999:blog-62840643164576255462024-03-14T04:16:56.843-04:00Monkey Bear and BuddyElenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.comBlogger247125tag:blogger.com,1999:blog-6284064316457625546.post-12637704432806392832017-06-02T09:47:00.003-04:002017-06-02T09:48:31.019-04:00the endI started this blog in 2009 so I could express everything I was feeling about Down syndrome and parenting. Basically free therapy. I loved writing. I love reading back over the old posts. I love watching my photography skills grow. But something changed. Those darn kids got older.<br />
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I still have all the feelings and like to talk about it, but it seems like my stories (that are really their stories) belong more to them and less to me now that they are older. There is a fine line between sharing cute/hard/emotional stories about a little kid and airing your big kids laundry in public.<br />
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So with that in mind, I am ending my blog. I will never stop sharing photos on Facebook and talking your ear off in person. But I just don't think I can do the open to the public blog anymore.<br />
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Thank you for your years of support and for listening to everything I had to say. Here are a few last photos to enjoy.<br />
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<img />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-57628529965709180262016-12-20T17:01:00.002-05:002016-12-20T17:01:09.312-05:00holidayThe holidays are so much fun yet so stressful at the same time. The kids love all the traditions - getting the tree, decorating it, seeing Santa and driving around looking at Christmas lights. They all really love to give gifts. My buddy's favorite time of the year is when he walks all around school handing out his holiday thank you cards and gifts.<br />
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The stress of the holidays is not to be denied. For my buddy, the most stressful thing is the big family holiday party. I try and talk about the good and the bad parts of raising a child with special needs with extra stress on the good. I don't like admitting there are things that my buddy just can't handle but big gatherings are so hard for him.<br />
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<img a="" actually="" always="" and="" any="" are="" around="" as="" at="" basically="" be="" behavior="" being="" buddies="" buddy="" but="" by="" car.="" charms="" conversations="" could="" cousins="" day="" doesn="" don="" drop="" everyone.="" express="" feeling="" following="" for="" frenzied="" giving="" good="" goodbye="" have="" having="" he="" headphones.="" him="" his="" hitting="" home.="" how="" hurt.="" i="" if="" inevitably="" ipad="" is="" it.="" it="" kicking="" know="" least="" leave="" little="" longer="" loses="" make="" more.="" my="" near="" not="" of="" off="" once="" one="" over.="" over="" overwhelmed="" p="" pack="" play="" possible="" prolong="" quickly="" regret="" rest="" s="" saying="" says="" scared="" simply="" src="</p><p><br></p><p>The minute we turn off the highway exit heading to the party, my buddy clutches onto big sis and starts to cry. He just says, " start="" stay="" stimulated.="" stressed.="" t="" that="" the="" there="" think="" throwing.="" thrown="" time="" to="" try="" up="" walks="" we="" were="" whatever="" where="" while="" whole="" will="" /><br />
This year, despite the hurt feelings it will cause, we decided to do what is best for our family and skip the big party. My job is to make sure my family is safe and happy. Even big sis ends up with a tummy ache every time we go to a big gathering... the curse of an introvert. I wish things could be different. Usually it's just our immediate family that has to live our life based on what my buddy can handle. It's hard as a mom who is desperately trying to change how the world sees my son, to have to spell out his shortcomings and ask point blank to have his needs taken into consideration.<br />
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This year we start new traditions and selfishly do what makes our family happy. This is our one life and we are choosing us.<br />
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<img />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-30431760425502700102016-12-13T09:30:00.003-05:002016-12-13T09:30:59.965-05:00lookI've often said how grateful I am that my buddy has a disability that is right there in his DNA. We don't have to prove anything in order to get the services he needs and people can look at him and not expect him to be like every other kid.<br />
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It makes some things easier - like when a couple of kids build a huge tower out of foam blocks and my buddy body slams it before I can stop him - the dad isn't mad. Of course my buddy has to apologize and see if they want help fixing what he ruined. The kids are still pissed but the dad can see my buddy's disability all over his face and I am relieved not to have him be angry with me. <br />
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Or when my buddy goes right up to the two skateboarding dudes and stands right between them. They can't understand anything he says, but they are so patient with him.<br />
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It also makes some things harder. The lower expectations make it harder to live up to your potential. I want my buddy to be a shining example of what a child with Down syndrome can be when we are out. I want people to see how funny he is and how loved. My buddy is rarely at his best in public. More often than not, he is growling at me or shouting 'NO'.<br />
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Then I get 'the look'. Man how I hate that look. Sometimes it's pity. Other times relief that he's not their kid. It's the one time I am grateful I can't read people's minds. I know I can't make everyone fall in love with my buddy and I can't single handedly change how everyone perceives people with Down syndrome. I just hope that somewhere along the way, my buddy can win over a heart or two.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-86058764584908985822016-11-01T20:56:00.002-04:002016-11-01T20:56:34.411-04:00HalloweenSometimes after my buddy has a birthday, I get caught up in the cycle of all the things I thought he would be doing at this age. Like how my 8 year old is still mostly unintelligible to strangers. Or how he still pulls his CPAP mask off 4 times a night forcing me to wake up and put it back on him so neither of us is sleeping through the night. And nothing gets me more depressed than every single time I change his pull-up. I also flash back to all the time he spent in the hospital when he was born.<br />
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Halloween always seems to turn things around. For one, that is the day he came home from the hospital. Plus Halloween is fun! This year, I celebrate the positive milestones. For the first time ever, my buddy told me what he wanted his costume to be and had an opinion when we picked it out. He also anticipated the big night - asking to put on his costume, or go in the car, or simply say, "Halloween please?" He LOVED trick or treating. My buddy was perfectly age appropriate - trick or treating like a pro. He always just took one candy and said Thank You every time. He wasn't scared of the decorations or costumes. He seriously loved the entire evening.<br />
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My buddy is also having a good school year. He is maturing and they are reaping the rewards at school... not that he is perfectly behaved or anything. One thing that I've seen this year that has never happened before is work has come home marked with '100% independent'. This is a HUGE milestone. My buddy is listening to instructions, focusing on what his task is, following the directions and actually doing all the work - reading the question and circling the right answer. I don't care what level the work is. He is actually doing it. I couldn't be more proud of him.<br />
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My last story really shows his maturation. The kids love to use my keys to unlock the door when we come home. One day after school, I was the last one into the mudroom and I heard my buddy ask for the keys so I handed them to him. Rara started crying saying how she asked first. I told her I was sorry and I didn't hear her. She still cried. Normally at this time my buddy would shout at rara and say, "No crying!! Go to your room!!" But this day, he walked over to her, handed her the keys and said, "OK rara?" I almost fell over in shock. It was the single kindest selfless act I've ever seen him do. I praised him so much and gave him ALL the attention.<br />
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I think 8 is going to be a good year.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-23565852978274621292016-10-18T17:26:00.000-04:002016-10-18T17:27:12.235-04:00loveThis school year has been hard for big sis. I hesitate to tell her story now that she is getting bigger, so I'm not going to say too much. Only that the transition to a new school has been a challenge. It's hard for 9 year olds to express their feelings, but one thing that big sis has said is that she misses being at the same school with my buddy.<br />
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When you are my buddy and school is extremely hard work, you get some special treatment - like sensory breaks, motor breaks, 'jobs', etc. All these things gets you out of sitting in a classroom for long periods of time. During my buddy's wanderings about school, he often ran into big sis typically greeting her with a big hug. Sometimes she walked with him. Sometimes she helped encourage him to do what he was supposed to. Sometimes they just shared a hug and went on their way.</div>
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Big sis, up until this year, has been at the same school as my buddy. He was in PreK when she started Kindergarten. He is her security blanket. He helps her feel brave.<br />
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To the casual observer, watching big sis take time out of her recess to walk my buddy into school may seem unfair. It also seems unfair to leave a fun activity just because my buddy has had enough. The list of things that are unfair is long.<br />
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What big sis knows, that the casual observer doesn't, is the depth of his love. There are no words to describe how it feels. My buddy doesn't hold back when expressing himself. He is all in. Sometimes he's expressing dislike which can be hard to deal with. But when he snuggles in tight and murmurs your name, there is nothing like it. My buddy and big sis love each other more than any one else. Big sis sees it as a privilege to help him when he needs it. She gets paid in love. <br />
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Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-54115650152832012832016-09-26T14:31:00.000-04:002016-09-26T14:31:39.313-04:00trustI unintentionally took a break from writing. I just couldn't find the time. I had nothing to say. I was chin deep in mothering and adulting. At the end of the day, all I had left was just enough energy to sit in my favorite corner of the couch watching shows I'd seen before. But then I had this dream.<br />
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This dream was weeks ago and it still haunts me. In my dream, the 'experts' had decided that my buddy would benefit from a three week intervention. They would take him for three weeks and fix all his behaviors they didn't like. Every fiber of my being thought this was a bad idea, but everyone kept telling me that I was being too overprotective and I needed to let him go. So I was packing his bag and just weeping. I kept thinking of all the ways they wouldn't love him the way I do and how scared he would be. Then I woke up. (or most likely a small human woke me up)</div>
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I can't stop thinking about all the experts in the past that told moms that their child with Down syndrome would never grow up to be anything and told them to put their children in institutions. I can't stop thinking about the millions of ways we have to trust what others tell us. Trust others to care for our children at school, playing a sport or as a babysitter. Trust that doctors know what they are doing. Trust that the medicine we chose is the right one. The list goes on and on but I'm already starting to sweat.</div>
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The urge to keep my kids by my side 24 hours a day is strong. I know that my job is to help them find their way into adulthood and extensively sheltering them will do more harm then good. I know that school has so many benefits for all of them. I choose my battles. There is only one problem - how do I know I made the right choice??<br />
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I spent a fair amount of time this summer trying to change how I respond to my buddy. I accept who he is and I've learned more about how he works, so in changing MY response I am hoping to increase the number of positive behaviors he shows. It's not easy to change. <br />
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All this trust and change. It's so hard. I try to listen to my gut, but sometimes it's very quiet. Every time I blink, time seems to jump and they get bigger and bigger. I hope that a good balance of hard work, laughter and hugs will do the trick.<br />
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Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com2tag:blogger.com,1999:blog-6284064316457625546.post-72885860346973390432016-08-01T08:54:00.001-04:002016-08-01T08:54:23.286-04:00unknownWhen my buddy was first born, I joined facebook and read every blog I could find because I wanted to know what life would really be like. I didn't know much about Down syndrome and I didn't actually know any people who had Ds. I was scared of the unknown. I learned about the medical side of things from pamphlets and doctors. I craved to hear what moms had to say. I couldn't imagine this life and I just wanted to know what to expect.<br />
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There were two bits of information that I learned that I had never considered and I harped on in my mind. One was about potty training and the other was about speech. When I first stumbled across information that some 5 year olds weren't potty trained and wore diapers to kindergarten... it rocked my world. I have no idea why this hit me so hard. Then I heard about kids who were nonverbal. This word wasn't even part of my vocabulary. I remember whispering into my buddy's baby ear, "please just talk some day."<br />
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Fast forward 7 years and I have a son who is not potty trained and is mostly nonverbal. And you know what? It's not a big deal at all. The potty training business is just part of life and I only notice it when I have to change his nervous poop standing up in the dentist's tiny bathroom or have to cancel the afternoon at the pool because he's had some loose poops and I don't want to be responsible for the 'code brown'.<br />
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While my buddy can name objects, say hello to friends, ask for food and get his basic point across he is very hard to understand and often can't answer simple questions. He can't tell me how his day was. He can't tell me if someone was nice to him or mean to him. He can't tell me his favorite anything. Even with all those verbal limitations, my buddy is hysterical. No one makes his sisters laugh more than him. And when he does say something unexpected, it's that much sweeter.<br />
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I don't know why I had those fears. Probably just because they were unknowns. I couldn't imagine what it would feel like or look like. While life with my buddy will never be described as easy, it is full of joy, laughter, love, acceptance and happiness... and that is worth a thousand easys.Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-63724298860811775772016-06-21T20:46:00.000-04:002016-06-21T20:46:28.594-04:00friendsWe're already 2 weeks into summer. I promised myself I would be on top of home schooling with my buddy, but I've yet to start. We've spent tons of time swimming. I have enforced the no iPad during the day rule and that has led to lots of playing together. I am amazed at how well my buddy and rara have been playing.<br />
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My buddy will say, "Rara play?" She always responds, "Yes. But you have to remember that I am little and you need to be gentle with me." It's super cute. Rara has gotten a little better at getting out of his way when he starts to get upset, but she's still stands her ground often... and often ends up getting hurt.<br />
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It warms my heart to watch them becoming friends. It took 4 years, but they're starting to build a solid relationship. They make each other laugh. I can let them play alone in his room without fear. I wasn't sure this day would ever come. I am enjoying it as much as they are.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-64069945162747344522016-06-13T07:12:00.002-04:002016-06-13T07:12:20.013-04:00fourTomorrow little rara turns 4. She is something else, that girl. She is brave and funny yet sensitive. The first time she meets you, she will act shy. The second time she meets you, she will climb onto your lap or ask you to pick her up because she assumes anyone that knows her even a little wants to hold her. She will hug and kiss everyone. She makes friends wherever she goes.<br />
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At least ten times a day, she will come tearing across the house calling your name with this urgency as if the house were on fire. When you ask her what she wants, she simply says, "I love you!"<br />
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When she needs comfort she will rub her hands all over your arms. She has done it since she was a baby. When I asked her why arms, she replied, "because they are soft."<br />
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She loves wearing a costume because of all the attention she gets. But her favorite character to pretend to be is Britney from Alvin and the Chipmunks. When she dresses as someone else, she will say she is Britney pretending to be Hazel.<br />
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She can play by herself but really prefers it when someone else plays with her. She never backs down - even if her brother is about to squash her. She makes just enough trouble, then turns on the charm. When she does get into trouble, she is genuinely sorry and quickly tells you so. She is sweet and caring and a great little kid.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-35515799792342078392016-05-26T16:29:00.001-04:002016-05-26T16:29:50.000-04:00unapologeticI've joined a few self portrait groups in order to help my photography skills grow. Since I'm always available and willing... I've turned out to be one of my best subjects. I love looking through other posts and appreciate all the creativity and sweet shots of moms and their kids.<br />
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Unfortunately I've noticed a trend - especially in the momographers. They apologize for the fact that they are in the picture. Sometimes their body isn't what they want it to be, or their face looks funny to them or the photo isn't "perfect". They point out all their perceived flaws... leading you to notice the flaws when you wouldn't otherwise.<br />
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The women taking these photos are photographers of some sort and the shots are beautiful. They are capturing moments and their kids are going to be so grateful when they grow up to have the memories preserved.<br />
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Why as women do we feel the need to apologize just for being there? I say - put yourself in that photo. Keep it to yourself if you want or post it so everyone can see. But don't you dare say one bad thing about it. I have never once looked at a self portrait and thought, "Geez. She really should NOT ever be in a picture." Women - all shapes, sizes, colors, etc - are beautiful. Capture those memories for your kids. Don't let them think for an instant that you weren't there. Your kids will thank you.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-13417582734093374492016-04-30T14:10:00.000-04:002016-04-30T14:10:22.113-04:00funkI'm in a bit of a funk, as I like to call it. I think it's a combination of too many funerals, not enough photography and writing, and the general exhaustion that comes with being a parent. I'm sure I could use more laughs with friends and less worry about my buddy's behavior in school. I don't often fall into the comparison hole, but lately it seems like everyone else has more friends, is thinner, takes better pictures, has more fun, etc. The reality is that we are all human and we are all hot messes. I know better than anyone that a picture may say 1,000 words... but they all might be misleading.<br />
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Take this one for example:<br />
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I could write something poignant about sadness but the reality is that he was all congested so his eyes were watering.<br />
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I am lucky that my funks don't ever turn into depression. Plus I have these crazy kids to entertain me and bring my spirit up. So I will force myself to find things that I enjoy and throw myself into them. What do you do to break out of a funk?<br />
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Here's a small selection of moments that bring joy.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/011_zpslbb4uxyy.jpg" width="800" /><br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-18067288796300076612016-03-22T16:45:00.001-04:002016-03-22T16:45:28.754-04:00personalityMy self portrait topic this week was Childhood Me. As I started thinking about what I was like as a child, I realized that I'm the same way as an adult. I had my dad build a little ladder and seat into a tree in our front yard. I used to sit up there with a book and watch the neighbors mill about. I still love trees and books and solitude (while being close enough to others as to not feel lonely).<br />
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I think parenthood is the perfect way to study personalities. Kids are their own distinct people. Their personality comes across at a very early age. Looking at pictures, it's so obvious to see who they are. Of course, I don't photograph the hard times - I'm in there elbow deep. And there is a lot of personal growth in the hard times but I like to focus on the every day.<br />
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Big sis was mothering before she could even walk. She shies away from the camera and takes a while to warm up to people. She is loyal and kind.<br />
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When my buddy is doing his own thing, he is in it 100%. He loves an audience and wants you to share in the fun with him. He wants to run with you, but only if he is in the lead.<br />
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Little rara has a big personality. She stands up for herself and all that she believes in (usually by shouting at her big brother and shoving him in the face). She is silly. She is sweet. She is sociable and outgoing.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/007_zpsjyasrrn8.jpg" width="275" /> <img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/016_zpsrkuhsu7n.jpg" width="525" /><br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-14207950761378127352016-03-14T10:12:00.000-04:002016-03-14T10:12:07.107-04:00that kid can't even talkThe other day we were at the park and my buddy was in the sandbox headed for a truck when another boy swooped in a grabbed it. My buddy shouted at him for a minute following him around, but then decided to walk away. As I followed my buddy, I heard the boy laugh to his friends and say, "That kid can't even talk!!"<br />
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My heart broke a little. I wanted to say something, but even days later, I don't know what the proper response would have been. We were already walking away and I know my buddy didn't hear him. Even if he did, I don't think he would have cared. I can picture him saying, "Dude. I can talk... YOU just can't understand me."<br />
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It's amazing how 2 seconds of life can sit in your gut and fester. It almost makes me forget all the kids who actually know him and like him.<br />
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Every day when I pick the kids up from school, at least a handful of kids will go out of their way to say hello to my buddy. Once kids understand who he is, they accept him and even learn to understand him.<br />
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Last week when the weather was nice, we stayed after school to play on the playground. One afternoon, when it wasn't too crowded, my buddy had two friends at the playground. They were so amazing with him. They did what he wanted them to do, being so patient when he was getting frustrated. They kept on encouraging him to play with them and never once got upset with him. He talked to them and they understood him. It was perfect.<br />
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Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-29531836216364695982016-02-23T14:53:00.001-05:002016-02-23T14:53:07.942-05:00storiesI've been wanting to write lately and I've started a few times, but my thoughts all seem to be just fragments. Like the sadness I feel when I hear people talk about their rowdy, full of life teenage boys and their friends crowded in the kitchen. Or the heartbreak of our little friend who has been in the hospital for three weeks straight battling leukemia. There's always the daily grind of life with my buddy and two girls who can tap into teenage angst in the blink of an eye.<br />
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Maybe it's just the winter glums. Or the lack of sleep blues.<br />
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So I'll cheer myself up with stories of things that make me smile. My buddy loves YouTube Kids. There is a search bar and he usually taps it and asks me to search for his favorite videos. Lately, I've been telling him which letters to push so he can spell it himself. Wouldn't you know the other day, he independently typed in eggs and found the surprise egg videos he loves! Little victories.<br />
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We've been trying hard to get all the kids to try different foods. Believe it or not, my buddy is the best at this. The girls complain and gag and let me know that I am the worst mom ever. But my buddy pops whatever it is right in his mouth. He chews (washes it down with milk fast if he doesn't like it) then says, "Mmmm. Yummy." After I praise him and ask if he wants more since it's so yummy, with perfect comic timing he says, "Nope."<br />
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Big sister goes through these phases where I see what life will be like when she is a teenager. Even at her most challenging, she is still so kind to her brother and sister. She lets her brother have a turn on her bike and helps push him. She cuddles rara when she feels sad. It can be hard to remember sometimes, but she really is a fantastic kid.<br />
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Most of all, I'm grateful for those days when we are all together making memories and laughing.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-70408852839128885932016-02-05T15:10:00.001-05:002016-02-05T15:10:07.469-05:00light bulbThis week I brought my buddy to a Down syndrome clinic and we talked with a geneticist. She said something that really stuck with me. (I am paraphrasing and I'm sure not very well) I had an endless stream of questions about different behaviors. The doctor told me that changes in the 21st chromosome present themselves in the brain. This is why individuals with Down syndrome have cognitive delay. She continued on to say that there are a lot of other ways it can affect the brain like OCD, impulsivity, depression, stubbornness and spectrum disorders.<br />
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It was like a light bulb went off in my head. I've always understood that my buddy would have cognitive delays. While I encourage him to learn as much as possible, I never felt a pressure to do everything in my power to raise his IQ to genius levels. I accepted that about him from the beginning.<br />
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Yet all these years later I am still trying (unsuccessfully) to alter his behavior. I fight against the impulsiveness and try and cajole the stubbornness out of him. I have felt the heavy weight of guilt over failing to get him to 'behave properly' in public. I have been holding my buddy up to a standard that he just can't attain. I need to truly accept this about him and stop seeing his behavior as my lack of success as a mom.<br />
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I will never stop encouraging my buddy to be the best he can be. I just need to acknowledge that my preconceived idea of best may not be realistic for him. And there is nothing wrong with that. He is who he is.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-48866135128397974972016-01-04T09:46:00.001-05:002016-01-04T09:46:43.700-05:00lower the barShortly after my buddy was born, I stopped all the parenting magazines. I just couldn't take the pressure to be a perfect parent when my child would never measure up to their idea of perfection. Once in a while, I'll be in a waiting room and I will flip through one. I can't help but feel like they make parenting so much harder then it has to be.<br />
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'Turn your afternoon walk into a nature scavenger hunt!' For me, just surviving a walk outside with the kids feels like I should be awarded a gold medal. Let's lower the bar a bit. No food that looks like amazing works of art. More than one food group on the plate? You just won at parenting in my book.<br />
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If creating elaborate crafts makes you happy, then by all means craft away. I refuse to feel guilty shoving some broken crayons and scraps of paper at the kids and calling it a day. I say we should all ditch the Mommy Guilt.<br />
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Go out there and be the best you that you can at that moment. Maybe you are having a kick ass take no names kind of a day. Yay for you! Maybe it's more of a hide under the covers day. Own it. Give yourself a break.<br />
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I was starting to worry that I did not do a single thing with my buddy this break that will help him transition back to school. I will not fall down that rabbit hole. It was a break for us all. No guilt involved. We laughed and made memories. (and fine ... we played a lot of iPad games)<br />
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Please, join me in lowering the bar and getting real about this parenting stuff. It's not a competition. So open that closet that is a huge disaster. Grab a cup of tea (or a glass of wine) and watch the kids fall in love with every piece of junk in there. Entertainment with minimal effort!<br />
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Oh and for the love of peaches, don't dress your kids if you don't have to. Just let them throw a dress-up dress over their jammies and marvel at their creativity.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/026_zpsjztstf5j.jpg" width="800" />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-58351035376361550112015-12-16T11:34:00.000-05:002015-12-16T11:34:23.176-05:00more behaviorThere is a great new show on A&E documenting a group of adults with Down syndrome called Born This Way. I've been watching it with the intensity of a scientist gathering information on an illusive animal. I want... no I need... to know that my buddy will mature someday.<br />
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I realize that he is only 7 and the behaviors he has today won't last forever. But the thing is, every phase can last so very long. My buddy first started throwing food over 5 years ago. While he no longer throws full plates of food, he's been known to shove a full bowl of milk and cereal (that he just asked for) with such intensity that it goes flying. That is 5 long years of cleaning up food that has intentionally been thrown on the ground.<br />
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I am willing to bet that my buddy has the biggest behavior challenges out of all the students in his school. It is so hard to imagine a time where he just does what he is supposed to. I'm not asking for a miracle. Maybe stand in line for 10 minutes without kicking the person standing in front of you. Perhaps walking down a hallway without throwing yourself on the floor. Not biting people. Sitting and working for more than 30 seconds.<br />
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Some day I hope to look back, laugh and say, "Remember how you couldn't leave him alone for even just 10 minutes? Like that time he pulled off the heating vent cover and filled the duct with cars?"<br />
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I expend so much energy always knowing where my buddy is and what potential victim is near. Worried if he's going to lose his mind in the middle of the outing. Feeling stress every time we go out. Just wanting to get things done around the house and not be in a battle zone. The anxiety when I read the log of how his day was at school.<br />
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I have a hard time explaining just how hard it is to be constantly redirecting unwanted behavior. Unless you live it every day, there is no way to fully understand. I think that's why parents of special needs kids tend to rely so much on each other (even just virtually).<br />
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I know my buddy has come leaps and bounds. He's learned not to run off into the street which is a huge deal. He has a good sense of what is physically reckless and will carefully climb down if he is up too high.<br />
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Most importantly, he has learned how to butter me up. He climbs into my lap, hugs and kisses me, snuggles in for a moment or two, then very casually says, "iPad??"Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-20358548210459010822015-12-14T14:10:00.002-05:002015-12-14T14:10:33.443-05:00three and a halfI joke about waiting for the day when all the kids are in school full time and I finally have a moment to breathe. The truth is that hanging out with rara all day is a breeze. She is independent enough to play by herself - and still loves me enough to want to play right by my side. With no big kids home during the day, there is no one to start a fight with... because that little face is cute but she's an instigator. Rara has helped with the Christmas decorating and loves the story I tell about how this Advent calendar was mine when I was little just like her.<br />
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Rara talks all day long and makes me laugh all the time. She's rarely shy and loves to do things like shout, "Hey Mama! That guy right over there looks just like Santa!!" She will approach strangers to ask if she can pet their dog. She will run up to me out of nowhere just to give me a hug and a kiss.<br />
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The most painful part of the day is when she says those dreaded words, "Will you play with me?" Rara will spend about 10 minutes explaining who I am going to be and exactly what I am supposed to say. Inevitably I get it wrong. Then she spends another 15 minutes explaining it all over again... slightly differently this time. I am not allowed to say what I want or choose who I get to be. It's a bit of a dictatorship where rara is the supreme leader. I try to distract her with different fun activities like Play Dough or stickers or making a mess playing in the bathroom sink just so I don't have to play her game.<br />
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Rara asks every day if it is Christmas yet and tries to pry out of me what I bought her for Christmas. She was so excited to see Santa. She was the first one to climb up on his lap and the last to hop off. There was't even a moment of hesitation when he asked what she wanted for Christmas. She was thrilled to be talking to the big guy.<br />
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I love how little three and a half year old brains work. There is still enough magical thinking where things are never their fault. She doesn't always love to wash her hands yet she knows that by touching them I can tell. So she says, "I definitely washed my hands but I just don't want you to feel them." Every day rara comes to me with an ornament in hand and says, "This ormament accidentally came off the tree by accident." Just today I saw her do this:<br />
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Maybe in some other life these little things would make me mad or worried that she would grow up to be a liar. But in this life, she just makes me laugh.Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-80515328835042741322015-11-30T09:42:00.000-05:002015-11-30T09:44:11.687-05:00ambitionI've never been a person with lofty career ambitions. For a while in college I pretended. I love houses so I thought I could be an architect. I'd read a Jackie Collins novel and thought I could be a business woman and wear power suits. I fell in love with astronomy and physics and thought I could be an astrophysicist. But the truth was that I was floundering and had no idea who I wanted to be. My parents even suggested I take a year off. I decided to just pick a major I liked and go with it.<br />
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For about 6 months I used my Earth Science degree (sort of) when I led Spaceship Challenger missions for third graders. Then we moved and I worked in an office which sucked the life out of me. While looking through the Yellow Pages one day (yes it was a long time ago) I randomly came across nanny agencies and the rest is history.<br />
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Once I got over the look people would give me as they said, "You have a college degree and you're just a nanny?!" it was the best job I ever had. I worked as a nanny for 9 years. I loved all the kids and spent my days playing... plus I got to go home and sleep through the night.<br />
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<span style="font-size: x-small;">Turning cream into butter at school.</span><br />
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I used to think it was my biggest character flaw... this lack of ambition. Now I see it as my greatest strength. I never thought I was destined for greatness, so I don't feel let down by life because I didn't win an Oscar or become a great American novelist or win a Nobel Peace Prize. I think the grass is plenty green right where I am. I hope to teach my kids to appreciate what they have and enjoy the every day moments.<br />
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Taking just one picture that I love feels like an accomplishment. Raising three loving, kind humans - an amazing feat. Raising awareness about Down syndrome and increasing acceptance will be my crowning glory. Even if just one person was changed, it will be enough.<br />
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Live life. Enjoy life. Where you are right now can be wonderful.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/002_zpsrhblmmqb.jpg" width="800" />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-88468383337163611852015-11-16T11:15:00.000-05:002015-11-16T11:15:27.460-05:00schoolI think it's safe to say that my buddy doesn't like school. If you ask him, he'll choose home over school every time. I wish I could blame school but I'm pretty sure it's not them. He has an amazing team that works tirelessly to keep him focused and engaged. The problem is he just doesn't want to.<br />
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My buddy sees school as an endless day of doing what other people want him to. Plus it's a lot of work. He has a classroom teacher and a special ed teacher both demanding that he learn. Then there's the speech therapist, OT, PT and psychologist all pushing him to be his best.<br />
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On his progress reports over and over I read things like: He requires consistent encouragement to succeed with tasks. He can complete 4/5 assignments within a session when he feels healthy and the reinforcer is meaningful to him. Unable to cooperate with this activity. Fluctuates significantly depending on behavior.<br />
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I know how smart my buddy is. I know that he is performing way below his potential. It's really frustrating. Will he always be so unmotivated at school? Will he ever want to have a job? Is there something I could have done better - pushed him harder, made fewer excuses?<br />
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I remember loving elementary school and looking forward to seeing my friends and learning new things. School should be something that puts a smile on a child's face. I hate that is's such a struggle for him. I wish I could observe him all day without him knowing to see what it is really like for him. I get a call at least once a week from the nurse that he was really mad and kicked a wall or hit his head or hurt himself in some way. It both breaks my heart and makes me want to shake him and say, "Buck up. Life is full of hard work"<br />
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Not knowing how to help your child is so hard.<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-8152194600721659692015-09-29T12:02:00.000-04:002015-09-29T12:02:32.414-04:00styleOnce upon a time, I had a very specific parenting style. Mostly before I became a mom, but even when I had two little ones just 15 months apart, I had ideals and high hopes. I made baby food and read them books every day. I had a schedule for cleaning and cooked meals. We attended play groups and story time. I bathed them daily.<br />
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Somewhere along the way, exhaustion, bickering and constantly being needed beat the standards right out of me. Now my parenting style is more of I Don't Wanna. For example, I think rara would love to take a dance class with her little friend, but when I think about signing her up, paying for it and then having to be somewhere at a certain time every week... well I just don't wanna.<br />
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For me it all comes down to time. For the past 8 years almost all my time has been given to my children. Newborns are needy. Newborn plus toddler - forget about it. Then there was Birth to 3 and endless doctor's appointments. Then kids in different schools at different times. Then another newborn and a long drive to school. There were nap times and snack times and early bedtime. So many demands on my time.<br />
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Now I drop off the big kids at school and have 7 hours to fill. I find that I'm feeling selfish with my time. I am more than happy to drop the laundry and meet a friend at the library, but I don't want many commitments. I want to choose if we just take the dog for a walk and hang around the house or maybe we have a bit of an adventure.<br />
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Of course that guilt as you scroll through Facebook and see all the kids and their sports, theater or art classes. Am I holding my kids back? I was involved in gymnastics and soccer. Are my kids missing out on something? But I don't want to spend my weekends driving here and there and watching a sporting event for one while trying to entertain the other two. I just don't wanna.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/009_zpsvfjus3z3.jpg" width="800" /><br />
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The weekends are the time we spend together as a family. To me that is more important than anything else. There will come a day when my kids are going off with friends and no longer want to spend all weekend just hanging out together. Plus they are getting a happy relaxed mom. So until the eye rolling starts when I suggest we all go pick apples together, I'm sticking with this parenting style.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/015_zpsuu5ydrbb.jpg" width="800" /><br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-65334561675166466122015-09-21T08:00:00.002-04:002015-09-21T08:00:30.714-04:00joyTurning 40 brought me a surprising dose of clarity and confidence. I lived a good part of my life feeling insecure, not wanting to stand out and being worried what others thought of me. I wore the clothes I thought I should and kept opinions to myself. I was making choices based on what I thought I <b>should</b> choose and had no idea I was doing it.<br />
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Then I heard this organizational guru talk about how you should surround yourself with things that bring you joy. For example, you pile all of your clothes on the floor then one by one, you touch each piece and ask yourself if it brings you joy. Plain and simple, if it brings you joy then keep it.<br />
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I realized that none of my shirts brought me joy. I wore them but hated the way they felt on my body. So I bought the shirts I really wanted - ones that felt good to put on and left me feeling confident. I feel like this little change has seeped into all parts of my life.<br />
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I'm a big fan of a daily phone conversation with my BFF just complaining and getting it all out. But I think there is a fine line of getting it out and laughing over it (because laughing brings joy) versus focusing on the suckiness and giving it power. The times in my life where I threw pity parties for myself were times I wasn't happy.<br />
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Photography has brought me such incredible joy. In the past I tried sketching, crafting and painting. I could do them all, but they left me stressed and produced no joy. For years I had no creative outlet. Finding one little thing that I can do just for me has made such a powerful impact. I don't have the luxury of a lot of time without little ones to look after, so finding something that includes them has been perfect.<br />
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Plus being able to look back at their little faces - joy to the thousandth degree.<br />
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Of course I believe in moderation and sometimes life just sucks. There are times when you just need to hide and wait for it to pass. I believe that if you focus on the joy in your life and actively search out things that make you happy, it can only help.<br />
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Here are a few moments that bring joy to me. May you find something today that brings you joy.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/019_zpsq8kuaksp.jpg" width="800" /><br />
<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/022_zpsrkxpkutt.jpg" width="800" /><br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com1tag:blogger.com,1999:blog-6284064316457625546.post-56218969670886783932015-09-14T08:30:00.000-04:002015-09-14T08:30:44.751-04:00schoolA new school year has started. Just like with everything else in life, I totally misjudged how the change would affect each child.<br />
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My buddy worked so hard all summer - between home school and summer school that he has had his best transition yet. Sure, there's been some testing of new people in his life. I had to send in the book I made so the teacher could read it to his classmates. It talks about my buddy and Down syndrome and why he is the way he is. I guess he knocked down some block towers that the kids were building and they were understandably upset.<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/020_zpsoepxfunb.jpg" width="800" /><br />
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Big sis, however, spent many nights in tears. Her teacher last year had a personality that really meshed with big sis plus her two BFFs were in that class. This year is really different. Big sis is slow to warm up and has been keeping it together at school then completely losing it at home. It's been really hard on all of us. Hard enough that I took a book out of the library about highly sensitive children.<br />
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I volunteered to be room mom (which big sis loves) and now I'm the official class photographer (which I love). My first official business was a head shot of all the kids. They all look a little like this:<br />
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<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/_MG_5082_zpswm3jfgfw.jpg" width="800" /><br />
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I know that big sis will adjust soon enough, it's just so hard to see your kids upset.<br />
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Rara, on the other hand, LOVES school and wishes she could go more than twice a week. She is equally happy at home with just me and some peace and quiet. The fighting this summer was so out of control, I think everyone is happy to have a little space. Watching rara so excited when she gets to be a big kid then just running into school is the best. (And yay for a teenie bit of me time)</div>
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Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-27091390551485459962015-08-31T09:28:00.001-04:002015-08-31T09:28:25.908-04:00the other dayThe other day I shouted and every little thing made me mad. The other day I made excuses for why I was being so mean. The other day I went to bed hating how I behaved. I worried all night that you would remember the worst part of me and forget the best part of me.<br />
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Today I want to talk to you about being human and feeling all these feelings. How some days it's hard not to act like a jerk. How you can see yourself acting like a jerk and not be able to stop. I want to talk about emotions and how difficult they can be to control.</div>
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But I don't have the answers. In fact, I may change my mind tomorrow. Being a human is complicated. Trying to figure out how to be your best while raising little humans to be their best is extra challenging. </div>
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Today I will work on my nice skills. Talking to you the way I wish you would talk to me. Listening a little closer. Finding things to make me smile. Doing my best to erase the other day. Because part of being human is to forgive. While I'm sure you've already forgiven me, I still need to forgive myself.</div>
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None of us are perfect and some days we're not even on the same page. But we are in this crazy life together.</div>
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Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0tag:blogger.com,1999:blog-6284064316457625546.post-23860948916478876632015-08-24T09:53:00.000-04:002015-08-24T09:53:53.983-04:00hello againI unintentionally stopped writing this summer. It was a bit of a challenging summer with an insane amount of fighting between all the kids. I home schooled my buddy almost every day. We made attempt number two at potty training and are back in pull-ups - so that's how that went. There was a week of summer camp and then summer school. Every day seemed so long, but it all went by relatively quickly.<br />
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Here are a few of the highlights of summer and hopefully I will be back to writing soon.<br />
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tushies in bathing suits<br />
<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/016_zpsbfkdqmr3.jpg" width="800" /><br />
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sun dresses (and the Special Olympics medal she wears all the time)<br />
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rock throwing<br />
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inflatable pool in the backyard<br />
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mismatched outfits and favorite dolls<br />
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adventures with the whole family<br />
<img src="http://i346.photobucket.com/albums/p414/Elena_Rodrigues_Pendell/013_zpsahmnkyn6.jpg" width="800" /><br />
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convincing the hubby to take some pictures together (even if I don't love any of them)<br />
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no glasses!!!!! (the highlight of the summer for sure)<br />
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rare photo of her smiling (and not scowling at me)<br />
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<br />Elenahttp://www.blogger.com/profile/02953125997086831625noreply@blogger.com0