tag:blogger.com,1999:blog-77122844170085233132024-02-07T05:30:50.772-08:00What a Team!Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.comBlogger207125tag:blogger.com,1999:blog-7712284417008523313.post-66861449382611492452015-10-01T21:25:00.000-07:002015-10-01T21:25:26.321-07:00Down Syndrome Awareness Month Begins<div class="separator" style="clear: both; text-align: center;">
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I like this kid so much!<br />
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I am going to write about Down syndrome this month ... but it'll probably be more pictures than anything else.<br />
<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-43951360737282712752015-07-02T15:20:00.003-07:002015-07-02T15:20:36.877-07:00Bragging on Ben (End of April)*** I wrote this draft back at the end of April. I'm posting it now because I don't want to forget. ***<br />
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Ben is getting big and he's learning so much. I want to remember the ways that he's grown this year.<br />
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I dropped Ben off for preschool this morning and watched him walk in the classroom. He sat next to his teacher and she told him that this week they are working on the letter "X." She showed him an X, then gave him a piece of paper with 9 letters on it (3 or 4 were Xs) and told him to find all the Xs and circle them. He did. He found the correct letters without help, and circled them (widely - he can't quite manage a small circle yet).<br />
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This morning, he signed the alphabet to me - in order - on his own. Because he wanted to.<br />
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He can JUMP.<br />
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On Tuesday at Little Gym, he chose to climb the stairs to the balance beam, and then he walked all the way along it (with me holding his hands). This is big because when we started these movement classes, he would avoid the beam at all costs. Balancing takes a lot of core strength, and it's hard for him.<br />
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He can also hold himself up and swing on the bar. <br />
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He's no longer afraid to do a forward roll (although he still needs support to do one).<br />
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He can make toast. (With supervision!) Ben really wants to do all the cooking. He loves to crack eggs and stir them for scrambled eggs, and he wishes that I would let him use the spatula (by himself) <br />
to move them around in the frying pan.<br />
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He loves mirrors. Anytime he sees his reflection, he has to stop for a smile and chat. <br />
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He loves to stop and smell flowers.<br />
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Ben is doing all sorts of stuff, but this is what I want to remember from the last couple of days. <br />
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<span style="text-align: center;">Here's a photo of Ben admiring his reflection at Easter. I think he's about to open a miniature Snickers. Note the chocolate already on his shirt. :)</span><br />
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And just for kicks, here are all 3 kids at Easter. This is pre-chocolate.</div>
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<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com0tag:blogger.com,1999:blog-7712284417008523313.post-36553631950087044522015-06-29T15:11:00.000-07:002015-06-29T15:11:05.772-07:00Beginning of Summer Vacation 2015For the last two years, we have taken our family vacation at the very beginning of summer - either immediately after the last day of school ... or we've taken the kids out a couple of days early. We drive 6 hours to Houston, stay in a hotel, and have Ben attend some kind of doctor's appointment. Last year, it was cardiology (where we got the amazing news that the hole is closing and surgery is not exactly off the table, but teetering way on the edge). This year, it was a visit to the Down syndrome clinic.<br />
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Ben did great. It's always a little discouraging to hear the results of evaluations ... especially in expressive language. But ... it's OK. The therapists and doctors there are very good. They enjoyed interacting with Ben and had lots of good things to say about him. They also gave us a referral for a sleep study and an ENT. I just have to decide if it's worth it to drive 6 hours to Houston or if we should do those visits locally.<br />
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As a side note: we totally got stuck in Houston traffic on the way to the appointment and Ben threw up his breakfast in the car. It was an exciting morning. Fortunately, I had brought a change of clothes for him, and we managed to arrive on time. Whew!<br />
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And then - off to Hawaii! <br />
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Another side note: it's probably not a good idea to fly with me. I keep encountering delays! This time, we got stuck at LAX for an extra 4 (5?) hours. But we made lemonade: we met some other families with little kids and had our own mini preschool camp at an empty gate.<br />
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Finally, Hawaii:<br />
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We stayed at the Disney Aulani Resort for the first several days and had a wonderful time! We played beach games, paddled a kayak, swam in beautiful pools, and just enjoyed hanging out as a family - including Emmett's mom and dad, plus Emmett's sister Jen, her husband and their boys. The cousins had a pretty good time together.<br />
<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-86059600508518903292015-04-16T23:15:00.001-07:002015-04-16T23:15:04.642-07:00Six Snapshots<span style="font-family: Trebuchet MS, sans-serif;">I thought I should reboot the blog with a couple of pictures from my phone. I just picked some from the past few months that make me smile.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">(1) Kids at the doctor's office. They are a goofy bunch.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">(2) Brothers snacking on the couch and watching TV together. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcShNr6gblsFRRL8l0RES85rBWUgjZ8pRHqTI3xb3PQ1XtqWgIvsUxjGUxq-Kp_LXCy-ZeqoCB_CTs90f5k1KE3YYRX95LX4m22BI-kINFcCBzTP_0sgzfBibNnmQkDYeVsJjQx1zhwBM/s1600/10256760_10154929629855511_577351194288958552_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcShNr6gblsFRRL8l0RES85rBWUgjZ8pRHqTI3xb3PQ1XtqWgIvsUxjGUxq-Kp_LXCy-ZeqoCB_CTs90f5k1KE3YYRX95LX4m22BI-kINFcCBzTP_0sgzfBibNnmQkDYeVsJjQx1zhwBM/s1600/10256760_10154929629855511_577351194288958552_o.jpg" height="300" width="400" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(3) Ben keeps changing the photo settings on my phone. We took pictures after school the other day, and he kept making faces. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVaXxMrPHvDjDraSOYQNoi1wjgWPCHPUkx7B_FAPYFzhOzvH1c0ZItWplR2RTYEBFg9HcSNr-xn9IBuGEed4vB5ntWwUBY4DIQ9rRMkSGYrlLTXKcDTJIaFYShoJaz1by8qGQ4Ooau85I/s1600/10633880_10155451853140511_718155340777069913_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVaXxMrPHvDjDraSOYQNoi1wjgWPCHPUkx7B_FAPYFzhOzvH1c0ZItWplR2RTYEBFg9HcSNr-xn9IBuGEed4vB5ntWwUBY4DIQ9rRMkSGYrlLTXKcDTJIaFYShoJaz1by8qGQ4Ooau85I/s1600/10633880_10155451853140511_718155340777069913_o.jpg" height="300" width="400" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(4) We had a big movie in the gym (it was supposed to be at a park, but it rained) for World Down Syndrome Day. Super fun.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN6KOJUydbCpKQGE7GdrU4wJ8Ll9f17xto77hEPafcRyvv02nBcxuf88ck3VTNIdX2ozObpSI6h1Ce8egSiZ7WdONrWjTaBGpjTDQcLnt6vKgfETjSU9qSGcqpvmfAKUzSqKn8b1FniF8/s1600/11081133_448508201984546_783477168445746990_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN6KOJUydbCpKQGE7GdrU4wJ8Ll9f17xto77hEPafcRyvv02nBcxuf88ck3VTNIdX2ozObpSI6h1Ce8egSiZ7WdONrWjTaBGpjTDQcLnt6vKgfETjSU9qSGcqpvmfAKUzSqKn8b1FniF8/s1600/11081133_448508201984546_783477168445746990_n.jpg" height="225" width="400" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(5) This boy loves to smell the flowers outside the therapy office.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(6) Corrie has decided that she's into wizards lately. She's wearing her own wizard clothes - Emmett's tshirt and shorts (cinched REALLY tight around her waist). On the table behind her, you can see all her nail polish bottles - otherwise known as potion ingredients. She also devised a wizard costume for Ben - knit hat, Dad's tshirt, and a paper Gandalf beard.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We've been busy with many things - and enjoying most of them. :)</span>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com2tag:blogger.com,1999:blog-7712284417008523313.post-23441401795054700262015-01-11T21:36:00.001-08:002015-01-11T21:36:34.422-08:00Two Good Weeks<span style="font-family: Trebuchet MS, sans-serif;">School let out on Friday, December 19th, and the kids have had the past two weeks off. We had our own personal Christmas on Friday night. Our little family does a celebration together every year before we travel. It's too hard to take big gifts with us in the car, and it gives us the chance to read the Nativity story together and have our own mini-tradition before the chaos of travel and activities with extended family and friends. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then things kicked things off with a bang at the RGVDSA Christmas Party on Saturday the 20th. The plan was to go to the party all morning, go home, load the car, and take off for Mississippi on Saturday afternoon.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">No go.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Evan started complaining about his head while we were at the party. Emmett took him home while Corrie and Ben and I stayed for the fun. By the time we got home, Evan was burning up with fever and knocked out on the couch - not the ideal condition for a cross-country drive. So instead of starting off for Mississippi, we took an extra day at home. Surprisingly, it was awesome. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Not for Evan. He had a fever and a headache and chills and pain. But the rest of us felt good. I made delicious sugar cookies and brownies and white chocolate cranberry cookies. We watched Christmas movies and soaked up the downtime together.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">On Monday, Evan's fever was gone and we finally drove to Mississippi - made it there around midnight. Best part of the drive was listening to our "Kids Playlist" on the Ipod - lots of Disney and Phineas and Ferb, with a surprise right in the middle: we all rocked out to Bon Jovi "Livin' on a Prayer" and it was EPIC.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The next few days were full of fun:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Games! Men (Emmett and my brothers Derek and Mark) versus Women (Mom, me, and Arthi). The only game the women could win was Sequence. The guys killed us at Cranium, Pictionary and Poor Man's Taboo. Highlight of Cranium: my brother Derek imitating Zsa Zsa Gabor, "I zink I have an accent. Zis is not the accent." </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Cousins! Jake and Corrie explored all of the area around Grandma's house. They formed a Nature Explorers Club and wrote essays about all the foliage they collected. Olivia followed them around, and Evan would go running up and down Grandma's hill. South Texas is flat, so Mississippi's rolling hills and tall trees are super exciting for the kids.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Christmas! Evan has been asking for a BB gun for a few years now (just like A Christmas Story) and this year he got THREE. All Airsoft - he has some friends who play in our neighborhood and he's been wanting to participate. It was sobering to see him all loaded up with guns.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I wish we lived closer to family. My brothers are some of the funniest people I know, and it would make my heart happy to see them more often.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">*** More posts about Christmas to come. Those posts will include pictures. ***</span><br />
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<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com0tag:blogger.com,1999:blog-7712284417008523313.post-23515261991051738672014-12-12T23:09:00.001-08:002014-12-12T23:09:18.271-08:00A Photo Post<span style="font-family: Trebuchet MS, sans-serif;">Now that two months have passed, I've decided to start blogging again. It takes some effort to exercise the writing muscles after a break, so I'm stretching first. It's hard to find the words when I haven't written in a while. So ... here are some photos from the past couple of months.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Corrie and Ben waiting while Evan got a haircut:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Corrie and I hosted a party for the adults in the Down Syndrome Association. Corrie wanted us to match, so she put on jeans like mine, found a necklace, had me put her hair in a ponytail, and told me to wear my apron.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Evan crashed a photo before the DSA party. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwQ9QO0Agf3Z40ruUstCxHo3k-h6dtdzllHx89YIQKfcRVcQ9_UhBY2vJqw02MyWXTXKl1me58NmDqROXxkQ3OfWqDgDN9JdllXReoexldiKyX8UtQnPFqJh34K3PMC3GeLo335mDmG_I/s1600/evancorriemomselfie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwQ9QO0Agf3Z40ruUstCxHo3k-h6dtdzllHx89YIQKfcRVcQ9_UhBY2vJqw02MyWXTXKl1me58NmDqROXxkQ3OfWqDgDN9JdllXReoexldiKyX8UtQnPFqJh34K3PMC3GeLo335mDmG_I/s1600/evancorriemomselfie.jpg" height="300" width="400" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Corrie and I went to a glamorous birthday party - she had makeup on, and her hair and nails done.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOyzumgzrr2gyXolPcn-hrduXj84LZfQDsXRuIf-1NT4M3Ij-tdGSgQPAAe6naSlNzmmgen3wNPtso-fUC97pL5pGlpVi8is6QaeC23jNaCJTOYeXfYWz533RRxCocFUHOUKlA91HsFEE/s1600/glamorcorrie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOyzumgzrr2gyXolPcn-hrduXj84LZfQDsXRuIf-1NT4M3Ij-tdGSgQPAAe6naSlNzmmgen3wNPtso-fUC97pL5pGlpVi8is6QaeC23jNaCJTOYeXfYWz533RRxCocFUHOUKlA91HsFEE/s1600/glamorcorrie.jpg" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Here's another one from the haircut day. Corrie sang Laurie Berkner's song "I'm Gonna Catch You" and Ben danced. Here he is doing the "I heard a sound" line.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2kmmkmfAP3aZZiDFTkej92qEWa9cENGhwX7x1VYjWQl_Zp-Wh_OLkDb1l-K8UxA-maK_gF1xBudp-nD7rni2K9B9j_aABcJpOCWEacocJX2KxSZ3I7P6kSj5cdY_9JAYuCNrfAeMG8L0/s1600/imgonnacatchyou.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2kmmkmfAP3aZZiDFTkej92qEWa9cENGhwX7x1VYjWQl_Zp-Wh_OLkDb1l-K8UxA-maK_gF1xBudp-nD7rni2K9B9j_aABcJpOCWEacocJX2KxSZ3I7P6kSj5cdY_9JAYuCNrfAeMG8L0/s1600/imgonnacatchyou.jpg" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Shopping at Target on a drippy day. Ben pulled his shirt over his head since he didn't have a hood.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWj5huSJSVmcXHcVbjHrp2kbI1MgpAl4-CEFmn1f5xVHbti4ewp_1sU6FNLtii_081LwW4bPmeq0RXOnYOayZ1ka8c3lIvXZAs8aHY5VOmLDw3TY3uma-tND0w8SjAUGNrJ2VH5-IM280/s1600/shirtbecomeshood.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWj5huSJSVmcXHcVbjHrp2kbI1MgpAl4-CEFmn1f5xVHbti4ewp_1sU6FNLtii_081LwW4bPmeq0RXOnYOayZ1ka8c3lIvXZAs8aHY5VOmLDw3TY3uma-tND0w8SjAUGNrJ2VH5-IM280/s1600/shirtbecomeshood.jpg" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This was around Thanksgiving (note the headdress). This is one of Ben's new expressions. Makes me smile.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsolfvLidwnrGS9qRTfOUtXSuLEQhhMsTRZxvIpSxDKSrN55wsu9U507RrxxyfVYGxlE6INvwOp84XtUgDYQurquXUgnY5cI6iDInbjvynaSz4nGBacsbddQXUohK8CvzeGtsmTrQ6tl4/s1600/thoughtfulben+-+Copy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsolfvLidwnrGS9qRTfOUtXSuLEQhhMsTRZxvIpSxDKSrN55wsu9U507RrxxyfVYGxlE6INvwOp84XtUgDYQurquXUgnY5cI6iDInbjvynaSz4nGBacsbddQXUohK8CvzeGtsmTrQ6tl4/s1600/thoughtfulben+-+Copy.jpg" height="400" width="300" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Corrie and Ben while we were reading books before bed one night. They are very sweet together. Also, I don't take photos when they are yelling or complaining about each other. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Evan and Ben eating pears and relaxing on the couch.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'll try to write more soon.</span></div>
Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-40260132852213465232014-10-05T23:05:00.002-07:002014-10-05T23:05:33.209-07:0031 for 21: Day Three of Five: Seven ThingsI've noticed other bloggers posting 21 things about their child with Down syndrome. I think that is a great idea! I'm going to break mine up into three posts, since I am not keeping up with my daily posting goal for October. <div>
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Seven things to know about Ben:</div>
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(1) He's a music lover. He started with Signing Time, then fell in love with Laurie Berkner, then it was Elmo and the Sesame Street<a href="https://www.youtube.com/playlist?list=PLD3FFF50EEAF0BCB0" target="_blank"> celebrity songs</a> on youtube. For a while, Mother Goose Club intrigued him, and now ... he likes the music from Frozen. If I have a chance, I'll try to video his interpretation of "Let It Go." He doesn't really sing at all, but he knows all of Elsa's moves. You can't help but smile.</div>
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(2) Ben has over 200 signs. He's been slow to speak, so sign language has been a great help! </div>
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(3) He is Mr. Independent. I appreciate that Ben wants to do things himself (get dressed, walk up/down stairs, take the bottle of juice out of the fridge), but it also makes me a wee bit crazy. I'm learning patience.</div>
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(4) Favorite food: pizza.</div>
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(5) Ben is fascinated by doors. He LOVES the automatic opening doors at our church. Every time we are in the lobby, he has to go in and out of the automatic doors. He walks out, then moves to the right to stand next to the building while the doors close. Once they close, he steps up so that they'll open again, and then he strides in again. But he's not particular - he likes regular doors, too. Emmett and I used to joke that if we could only find a toy (kind of like <a href="http://www.toysrus.com/buy/interactive-toys/fisher-price-laugh-learn-learning-home-playset-c6327-2265260" target="_blank">this one</a>) that was just a door to go in and out of, Ben would play with it all day long.</div>
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(6) Ben's got a little Russell Westbrook in him. If we're outside playing basketball, Emmett will pick him up so Ben can throw the ball in the tall hoop. Once Ben's on the ground again, he has a whole taunting/celebration act that he does - lots of arm waving and yelling. We're perplexed, because our house is tuned into Spurs basketball, and we know that Duncan and Leonard don't go on like that.</div>
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(7) Ben has been saying more words. His first and most reliable word is "up!" accompanied by a finger pointing in the same direction. Otherwise, he says "bubble," "mama," "dada," "papa," and just this week busted out "blue." Preschool has had a huge impact on his verbalization.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuSc1odBUWhCis7-sMXGgrHfj3IBVlCr4pOewgkz4hTCI_RIPNzN3WIml4lqOv9IN5s-dNYdogezV-yVy0Puada51UV1yfbzK6_dEpm8wK_uu2egWQ1GuDI2pf3Stub57zeO9yHulPHss/s1600/DSCN1125.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuSc1odBUWhCis7-sMXGgrHfj3IBVlCr4pOewgkz4hTCI_RIPNzN3WIml4lqOv9IN5s-dNYdogezV-yVy0Puada51UV1yfbzK6_dEpm8wK_uu2egWQ1GuDI2pf3Stub57zeO9yHulPHss/s1600/DSCN1125.JPG" height="480" width="640" /></a></div>
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This is a photo from last summer. He looked so little then. </div>
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Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-34235147746396303502014-10-03T21:26:00.001-07:002014-10-03T21:26:14.934-07:0031 for 21: A Busy Week<span style="font-family: Trebuchet MS, sans-serif;">One of the best things about participating in the 31 for 21 blog hop is that you don't *have* to talk about Down syndrome, you can talk about anything. You're just supposed to try to blog every day.</span><div>
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<span style="font-family: Trebuchet MS, sans-serif;">I've been talking about Down syndrome to people in real life all week long! We're gearing up for our second annual Step Up for Down Syndrome walk, and I have been consumed by the details - Tshirt distribution, last minute vendor additions, layout for the walk pavilion, meetings with city officials. I have a persistent uneasy feeling that I've forgotten something.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In the meantime, I also spoke to my MOPS (Mothers of Preschoolers) group about Down syndrome awareness month, and I spent today at a conference booth talking to medical professionals who do perinatal care. The moms in MOPS were incredible - the last five years in that group have been some of my most challenging and rewarding as a mom. It was a real privilege to present for them.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I keep telling people that it's a wonder that I can speak in complete sentences. My brain is fried!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Evan, Corrie and Ben have been incredibly patient with me. I have dragged them from one end of town to the other while I'm running errands and making phone calls, and I'll keep carting them around for the next week. McDonalds and Chick Fil A are getting a lot of business from the Tomai family.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We did manage one family fun night last week. Here we are:</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjEu_DxKXIEW6krgljQ4vV_7VQFFV3gL8t6FwVS5RXK6G-jli_NH7yQYQQkbC9csVZg2fQoTkVHStIeiZRJ33fJbpoa-OsnFnf_LfRnsHj6IQjJ5RBhYBJuj1Et9lEJgwOLDpwjmNPWZU/s1600/boatwatch.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjEu_DxKXIEW6krgljQ4vV_7VQFFV3gL8t6FwVS5RXK6G-jli_NH7yQYQQkbC9csVZg2fQoTkVHStIeiZRJ33fJbpoa-OsnFnf_LfRnsHj6IQjJ5RBhYBJuj1Et9lEJgwOLDpwjmNPWZU/s1600/boatwatch.jpg" height="400" width="300" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcfomWZlYwV3tYrUvw6Omdpy7u8XDNlZFGSDINj1W3iHrv0kP1ljfWC78qMCgvBNbNEeafG4PdVRsYhOZX5_txs-3AGAnQ0yC9bStkj78sttUzwz4bs16W8oYsFIpuFt1YD5RxIVOSHJs/s1600/corriewatch.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcfomWZlYwV3tYrUvw6Omdpy7u8XDNlZFGSDINj1W3iHrv0kP1ljfWC78qMCgvBNbNEeafG4PdVRsYhOZX5_txs-3AGAnQ0yC9bStkj78sttUzwz4bs16W8oYsFIpuFt1YD5RxIVOSHJs/s1600/corriewatch.jpg" height="240" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis7V5MpP81rHGZxr5mN4Z-ZGIcFmiVc-i0kz1Jc4cUvAtd4WWOfnhyphenhyphenxF_xGagaxL6Am8MSGfGkz3lXjnBhmUSSGKrRHohf97TiQZxnOAQkaJnhKM8PHV6EUJ3sOLj8sFV7E7wpgZW6LR4/s1600/bendadwatch.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis7V5MpP81rHGZxr5mN4Z-ZGIcFmiVc-i0kz1Jc4cUvAtd4WWOfnhyphenhyphenxF_xGagaxL6Am8MSGfGkz3lXjnBhmUSSGKrRHohf97TiQZxnOAQkaJnhKM8PHV6EUJ3sOLj8sFV7E7wpgZW6LR4/s1600/bendadwatch.jpg" height="238" width="320" /></a> </span></div>
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Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-69018181591171860532014-10-01T22:41:00.002-07:002014-10-01T22:41:46.537-07:0031 for 21: Day One!<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">I have many plans for this October, and one of my plans is to post every day in recognition of Down Syndrome Awareness Month. Since it's already after midnight on the first day, I'm clearly not getting off to the best start.</span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">So ... meet Ben! </span></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Ben and I enjoy taking selfies together. I finally got an iphone,
and now I'm going crazy with the selfies. I try to control my posting
on facebook, but I may indulge on the blog this month.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-sEdclDTBscD8aTtdfqfS2-3V8KhyphenhyphenNgZ8otd4CplursP3vYcc-BxcHKtyQquMyHRFwU1lwJFC6Iv9RjDxUfCXLRm02nuO7tIZJs_vPeRVCGoT_ibUVrOjM5KTbUjlBHhY820fP2AQ4Jg/s1600/IMG_0608.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-sEdclDTBscD8aTtdfqfS2-3V8KhyphenhyphenNgZ8otd4CplursP3vYcc-BxcHKtyQquMyHRFwU1lwJFC6Iv9RjDxUfCXLRm02nuO7tIZJs_vPeRVCGoT_ibUVrOjM5KTbUjlBHhY820fP2AQ4Jg/s1600/IMG_0608.jpg" height="400" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEfClgSGQH2jOsgB9bmlXLDoLqYDOLtvdiYJfM1llaQI_M_kaS4OwuA3y9VUmdXKQlI6aE8vXn9_KpBVYZJvFYAP0dmkSgsAuz-XDChTBy4r86rcY8KljHT1PzFvlBYD6WvB23ZN3Q3ak/s1600/IMG_0607.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEfClgSGQH2jOsgB9bmlXLDoLqYDOLtvdiYJfM1llaQI_M_kaS4OwuA3y9VUmdXKQlI6aE8vXn9_KpBVYZJvFYAP0dmkSgsAuz-XDChTBy4r86rcY8KljHT1PzFvlBYD6WvB23ZN3Q3ak/s1600/IMG_0607.jpg" height="240" width="320" /></a></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="color: #0b5394;">He's such a cutie! </span></span></h2>
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<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com2tag:blogger.com,1999:blog-7712284417008523313.post-92029395334340245342014-09-01T08:00:00.000-07:002014-09-01T08:01:14.405-07:00Let's Talk Preschool (1)<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Oh, the drama! Before having Ben, I was completely unaware of the process that children with disabilities go through before starting school. Now I know (and we are only at the very beginning). </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">To put it simply ... <b>it's complicated</b>.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"> </span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">The federal government provides Early Intervention (EI) services until a child turns 3. If a child has a demonstrated need (or diagnosis), <b>the school district becomes responsible for providing therapies and services for the child on his/her third birthday.</b> In order to determine what services the child should receive, the school district evaluates the child. For Ben, this involved three separate sessions (one with a speech therapist, one with an occupational therapist and one with a physical therapist). I also had an interview with a diagnostician, and then filled out a separate evaluation form. Ben's current EI therapists (OT and PT) and his case manager submitted evaluations as well.</span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">After the evaluations, it is time to determine what services the child will receive. I do NOT understand all the complexities of IDEA (<i>Individuals with Disabilities Education Act</i>), but basically, it provides for each child to have an IEP (<i>Individualized Education Program</i>). </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">This is a formal document that directs educational services including </span><br />
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<li><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">therapy (what kind, how often, etc) </span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">supports (a one on one aide, modifications to curriculum, etc). </span></li>
<li><span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">location (in the resource room, in a typical classroom in the special education classroom)</span></li>
</ul>
<span style="font-size: small;"><b><span style="font-family: Arial,Helvetica,sans-serif;">It is intense! </span></b></span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCsHXD1JUWN3m7BLDoWT2dj_Pd5zVZzb3CSwdlacNXRhXf7jmfxHaH_XUmxjSnzmDIzQ-0LhLVjFwMyU5aYxcFTBwdQIVQs4bT-KfZMRaBzyb-TC9-T3C9T3tOJWTIC2yXq6F0i-zR1qI/s1600/10450239_10154555691295511_7322328903070500787_o(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCsHXD1JUWN3m7BLDoWT2dj_Pd5zVZzb3CSwdlacNXRhXf7jmfxHaH_XUmxjSnzmDIzQ-0LhLVjFwMyU5aYxcFTBwdQIVQs4bT-KfZMRaBzyb-TC9-T3C9T3tOJWTIC2yXq6F0i-zR1qI/s1600/10450239_10154555691295511_7322328903070500787_o(1).jpg" height="400" width="300" /></a></span></div>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Since Ben turned three in July, we've been trying to figure out what his school year might look like. Here were some of our driving thoughts/concerns:</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(1) Evan and Corrie both went to a <b>small Christian preschool</b> 3 mornings/week when they were three and four years old. I stay home, and that was just the right amount of time for them to be in the classroom, have fun time with other kids, and still get lots of time with me. And it's a wonderful school!</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(2) The school district provides a <b>5 day/week special education preschool</b> with a great teacher/student ratio. Right now, there is one teacher, two aides, and less than five kids.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(3) Ben is predominantly <b>nonverbal</b>. He has one definite word: UP! He also knows 200+ signs and is a pretty effective communicator, even without words. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(4) Ben scored <b>near</b> <b>average</b> on the assessments. There were some distinct areas of delay (notably, speech) but other areas where he is close to his age in cognition. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(5) We haven't really started <b>potty training</b> yet.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(6) Research shows that <b>inclusive classrooms</b> (with typical kids and kids with special needs) produce better results for ALL the kids.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">(7) Ben, Corrie and Evan would get a kick out of going to school <b>together</b>. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">In anticipation of Ben's third birthday, those thoughts have been rocketing around my brain for the past year. We want to get Ben off to a good start. What does that look like?</span><br />
<div style="text-align: center;">
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">To be continued ...</span><br />
<span style="font-size: small;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGo-B9nYYoI-VxCCqnIYfOPz76qI43Dx2vD2lQz31d1nqf-y280vVJbiQt6ZEDRpI2BaRe4DjoGUNCLIYXoUDaGF5Vu_StxxcGAt-0KHGrDUE6ARjAkiToQrJBTtHXCIlc65xF2ZnZL6M/s1600/10539164_10154528450300511_7945116492981668860_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGo-B9nYYoI-VxCCqnIYfOPz76qI43Dx2vD2lQz31d1nqf-y280vVJbiQt6ZEDRpI2BaRe4DjoGUNCLIYXoUDaGF5Vu_StxxcGAt-0KHGrDUE6ARjAkiToQrJBTtHXCIlc65xF2ZnZL6M/s1600/10539164_10154528450300511_7945116492981668860_o.jpg" height="240" width="320" /></a></span></div>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"> Dropping the big kids off on their first day ...</span><br />
<span style="font-size: small;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFg38gisZILrq8kvPBiF4hSW_1_LRz01roDUD-xloHtzDYZDBZcFRBJ7TRfGIEAJe8vkXWFFwxrx9onIfB7OY2F-UUsEkODV0JiUfgzOHENDaibSXclhHvwMfJTn5niXPv8_ihNAzmOqA/s1600/10560576_10154555692675511_8096916913424199356_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFg38gisZILrq8kvPBiF4hSW_1_LRz01roDUD-xloHtzDYZDBZcFRBJ7TRfGIEAJe8vkXWFFwxrx9onIfB7OY2F-UUsEkODV0JiUfgzOHENDaibSXclhHvwMfJTn5niXPv8_ihNAzmOqA/s1600/10560576_10154555692675511_8096916913424199356_o.jpg" height="240" width="320" /></a></span></div>
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"> Putting shoes on with Corrie before she leaves for school.</span></div>
<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com3tag:blogger.com,1999:blog-7712284417008523313.post-42792542707694970172014-08-01T01:32:00.000-07:002014-08-01T01:32:48.405-07:00Rewriting the Story
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<br />
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">Three
years ago Wednesday, I had a baby boy.<span style="mso-spacerun: yes;">
</span>My doctor held him up and announced, “He’s beautiful!<span style="mso-spacerun: yes;"> </span>Perfect.”<span style="mso-spacerun: yes;"> <i> </i></span><i>And I will be forever grateful for her words.</i></span>
<br />
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<br /></div>
<br />
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<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">Later,
as I waited to hold him, I noticed some sideways glances and head nods among
the nursing staff.<span style="mso-spacerun: yes;"> </span>And when I finally
held my son, I thought, he has Down syndrome.<span style="mso-spacerun: yes;"> </span>I waited for someone to say something, to confirm what
seemed obvious to me, but no one did.<span style="mso-spacerun: yes;">
</span>So I wondered – am I wrong?<span style="mso-spacerun: yes;">
</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQPawalYOpYtiZh9ybieXUgZUaF0TogqmzZAng6-dV5PL7xNYbCi6aRuGUwFRjnE_PdGA3AesfKp4xdOMkDwoKTkOJNoIev_T1Bx0MMQ1F40OGAUzVu1dM-fSVpIbNINJ_OKXd6fye47I/s1600/ben-hat.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQPawalYOpYtiZh9ybieXUgZUaF0TogqmzZAng6-dV5PL7xNYbCi6aRuGUwFRjnE_PdGA3AesfKp4xdOMkDwoKTkOJNoIev_T1Bx0MMQ1F40OGAUzVu1dM-fSVpIbNINJ_OKXd6fye47I/s1600/ben-hat.jpg" height="213" width="320" /></a><span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">They
took him away, and I remember lying in the hospital bed overnight, just
wondering.<span style="mso-spacerun: yes;"> </span>Praying.<span style="mso-spacerun: yes;"> </span>Waiting for my husband’s flight to get
in so that he could wonder with me.<span style="mso-spacerun: yes;">
</span>I felt fear.<span style="mso-spacerun: yes;"> </span>Worry.<span style="mso-spacerun: yes;"> </span>And the most protective love I have
ever felt in my life.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
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<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">Eventually,
the hospital pediatrician peeked his head into my room.<span style="mso-spacerun: yes;"> </span>“You know about the Down syndrome,
right?” </span></div>
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<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">And
that was it.<span style="mso-spacerun: yes;"> </span>No information.<span style="mso-spacerun: yes;"> </span>No local contacts.<span style="mso-spacerun: yes;"> </span>Just a casual comment.<span style="mso-spacerun: yes;"> </span>My feelings of ignorance and isolation
lasted for months.</span></div>
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<br /></div>
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<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">Fast
forward three years.<span style="mso-spacerun: yes;"> </span>I stood with
two of the other women from our local Down Syndrome Association – an
organization that didn’t exist when Ben was born – in the conference room of
that hospital.<span style="mso-spacerun: yes;"> </span>We were there to do
a short presentation for the OB/GYNs who deliver there.<span style="mso-spacerun: yes;"> </span></span></div>
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<blockquote class="tr_bq">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">“We
are here to help.<span style="mso-spacerun: yes;"> </span></span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;"><a href="http://lettercase.org/bookstore/" target="_blank">Here</a> is a
pamphlet about how to deliver a Down syndrome diagnosis …</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;"><a href="http://lettercase.org/get-the-booklet/" target="_blank">here</a> is an excellent booklet with accurate information about Down syndrome …</span> </blockquote>
<blockquote class="tr_bq">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;"><a href="http://www.easterseals.com/rgv/our-programs/childrens-services/early-childhood-intervention.html" target="_blank">here</a> is information
about the Early Intervention program …</span> </blockquote>
<blockquote class="tr_bq">
<div class="MsoNormal">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">and <a href="https://www.blogger.com/goog_892839901" target="_blank">here</a> is information about our
organization.”</span></div>
</blockquote>
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<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">Before
any of the doctors arrived, I walked around the conference room and
prayed.<span style="mso-spacerun: yes;"> </span>I thanked God for the local
relationships that exist now for families of children and adults with Down
syndrome.<span style="mso-spacerun: yes;"> </span>I thanked Him for the opportunity
to talk to doctors about how they deliver the news, and I thanked Him for
Ben.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">After
the doctors heard our spiel, they had good questions about prenatal diagnoses,
about the DSA, and they asked us to bring more information for the hospital
social workers and staff.<span style="mso-spacerun: yes;"> </span>The
physicians commended our organization and requested extra packets for their
colleagues.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">It
was surreal to be in that place, to remember the fear and loneliness of those early moments, and to
contrast them with the sense of hope and community that I feel now.<span style="mso-spacerun: yes;"> </span>Ben is a great kid, an essential element
of our family, and the Down syndrome community (local and beyond) has been a
gift to me.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">I
may not be able to change the story of Ben’s birth and my fear, but I hope
that what we did on Wednesday will help other new moms and other babies to have
a better start.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;">Look at my 3 year old! Isn't he something? </span></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcXUDWm2l4DFFStuUPhEKb3T8wCAhiNIRIMIF4Ly5kCTaOj0kyJNZq_1VNmCDjm7ojjK80Hwnae4vjrncwbP4qO9EvAlrk6egaEq9FWdfa4OSoiqO11EJPBFEQ0E2FOXFfku5oUMrfa04/s1600/happyBen.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcXUDWm2l4DFFStuUPhEKb3T8wCAhiNIRIMIF4Ly5kCTaOj0kyJNZq_1VNmCDjm7ojjK80Hwnae4vjrncwbP4qO9EvAlrk6egaEq9FWdfa4OSoiqO11EJPBFEQ0E2FOXFfku5oUMrfa04/s1600/happyBen.jpg" height="400" width="300" /></a></div>
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<span style="font-family: Arial; mso-bidi-font-size: 10.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com6tag:blogger.com,1999:blog-7712284417008523313.post-33510764078989740902014-05-12T05:00:00.000-07:002014-05-12T05:00:00.109-07:00Corrie's Summer Plans<span style="font-family: "Trebuchet MS",sans-serif;">Our family is ready for summer! We have big plans: a trip to Hawaii, a trip (for me!) to Chicago and Indianapolis, possibly a Mississippi visit, lots of pool time, sleeping late, and more.</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS",sans-serif;">I asked Corrie if we could make a list of fun activities that she and I could do together - just us girls. She ran with that idea, and now I have a list of 49 fun mother/daughter activities. </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
<span style="font-family: "Trebuchet MS",sans-serif;">Highlights include:</span><br />
<ul>
<li><span style="font-family: "Trebuchet MS",sans-serif;">travel ideas (Disney Land, Disney World and Kansas) </span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">cooking (bake cookies, cakes, pies, pancakes, waffles and pizza)</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">napping on the couch</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">relaxing on the couch</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">entertainment (the Nutcracker and Rio 2)</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">crafts (flowers and bracelets)</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">make a video</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">puddle stomping</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">eat popcorn</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">eat candy</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">eat apples</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">eat pears</span></li>
</ul>
<span style="font-family: "Trebuchet MS",sans-serif;">She even added some self-improvement goals:</span><br />
<ul>
<li><span style="font-family: "Trebuchet MS",sans-serif;">jogging and exercising</span></li>
</ul>
<span style="font-family: "Trebuchet MS",sans-serif;">And a few things that we don't know how to do:</span><br />
<ul>
<li><span style="font-family: "Trebuchet MS",sans-serif;">play guitar together</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">sewing</span></li>
</ul>
<span style="font-family: "Trebuchet MS",sans-serif;">And she recognizes that even chores will give us time together: </span><br />
<ul>
<li><span style="font-family: "Trebuchet MS",sans-serif;">cleaning the house</span></li>
<li><span style="font-family: "Trebuchet MS",sans-serif;">grocery shopping </span></li>
</ul>
<span style="font-family: "Trebuchet MS",sans-serif;">But my favorite item on the list is "a wedding." So if anyone I know is getting married this summer, I have a 6 year old girl who would like to be my date to your wedding. </span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">I don't think we will manage to do everything on the list. I'm pretty sure Disney (on both coasts) is out. And I doubt we will even attempt to master the guitar in the next two months. Jogging is questionable, too.</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-family: "Trebuchet MS",sans-serif;">But I look forward to eating pears and relaxing on the couch with my favorite girl.</span> </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>
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<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com6tag:blogger.com,1999:blog-7712284417008523313.post-13157012778572892372014-04-24T00:44:00.002-07:002014-04-24T00:44:57.494-07:00Work/Life Balance<h4>
<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Here's a piece of advice: don't ever ask me for advice on work/life balance. I don't know how to do it. I've been pulled in multiple directions lately, and the whole family is feeling it. </span></span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"> </span></span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Ben is starting preschool next year - in a private church-based preschool 3 days/week, and in the public school's special ed preschool class 2 days/week. Ben has to undergo some evaluations, and then Emmett and I will sit down with representatives from the school district to figure out Ben's IEP (Individualized Education Program). We'll have these IEP meetings at least once a year until Ben finishes high school. I've been researching Ben's rights and thinking/praying about how to advocate for him in this situation.</span></span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><br /></span></span></span></h4>
<h4>
<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Meanwhile, Evan and Corrie are both excited about the church Mother's Day musical. Just typing those words reminds me that <i>we totally missed rehearsal tonight</i>. Oops. We ran errands instead. I took all three kids to the grocery store, Hobby Lobby AND Wal-Mart, plus we picked up milkshakes from Sonic and visited Emmett at work. Then I fed them frozen pizza and put them to bed <i>- we skipped baths</i>.</span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">And Evan is still playing soccer. Note to self: don't forget practice tomorrow! </span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Plus ... we have exciting plans for the RGVDSA this year, and I have a long to-do list. It has been wonderful to see the organization grow, but there's a lot of time and work involved. And my vision feels bigger than my abilities.</span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Ben and I drove up to the school district this morning to drop off some paperwork, and I realized that sometimes it is just hard to be a parent of a nonverbal kid. Ben babbles - he's very expressive - but he has no reliable spoken words yet. He has tons of signs, so if I'm looking at him, we can have conversations. But in the car, I can't see his signs, so it's easier to just turn on the radio or talk to someone on the phone. </span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Part of me is grateful to have one quiet kid (Evan and Corrie talk <i>all</i> the time) but it's not fair to Ben for me to view his silence as my free time. When I would drive with the other kids, we would sing in the car or point out the windows at trees or machines. And I remember to do that with Ben some of the time, but I often find myself just forgetting to interact with him. My mind goes straight to that to-do list.</span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">I have similar moments with Evan and Corrie. "Just wait ..." I say, while I type one more email. "Instead of running in the race, will you sit with me at a table to hand out info about Down syndrome?" I ask. They lose some of my time and attention so that I can be an advocate for Ben and for other individuals with Down syndrome. It is their sacrifice. </span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">So ... tonight while the kids and I were running errands, I asked all three of them, "Do you mind? Is it OK that I do stuff for the Down Syndrome Association? How do you feel about it?" I want them to know that they are the most important people in my life.</span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">They responded </span></span><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><i><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">immediately</span></span></i>. </span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">"It's great, Mom! You do a walk, and then there's cotton candy! And popcorn!" exclaimed Corrie. "And it helps the best baby in the world - Ben!"</span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">"It's the right thing to do," said Evan. "You help people."</span></span></span></h4>
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<span style="font-weight: normal;"><span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">And Ben smiled and waved and signed a song.</span></span></span></h4>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="font-weight: normal;">I think this will be a long journey - figuring out the balance between family and service. For today, I am just thankful that these three (and Emmett!) are on my team. </span></span></span></h4>
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<span style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><br /></span></span>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com4tag:blogger.com,1999:blog-7712284417008523313.post-74437920721558554862014-04-21T22:17:00.002-07:002014-04-21T22:17:22.672-07:00March and April in Five Photos<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">I'm a terrible blogger! I have so much to say in this space - and I barely say anything at all! I'm throwing this post together just to get my mind back into a writing zone.</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">For inspiration, I checked out the photos from the last MONTH AND A HALF. I can't believe it's been that long since my last post.</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">Here's what I've been up to:</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">(1) Meeting - and sledding with! - one of my <a href="http://thebatesmotel3.blogspot.com/" target="_blank">favorite kids from the blogging world</a> (and her awesome mom and dad).</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">(2) Showing some Chicago love by getting Ben a football hat with Bears colors. Yes, I know we live in south Texas and he will probably only wear this a couple of times next winter. (Corrie actually stole it from him and wears it around the house occasionally - pretending she has beautiful braids).</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">(3) World Down Syndrome Day! This is the third time our family has recognized this day. The first year, we had a potluck dinner with 7 families. The next year, around 100 people came to a celebration at Chuck E. Cheese. This year, we had 250 people meet at a park for hot dogs, games and a balloon release. I'm amazed every time I think of it. </span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"><i>Note: We took this picture first thing in the morning - right before the kids headed off to school. Ben's not normally dressed and ready to go at that time. He looks a little sleepy still. Ha!</i></span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY02ytfumoUR8zLeWv4EQl2UTQB02iDqSzyVzHuxefwXpjJovnLyMhzRSr9IvlHo_Fh40HjCCZpmlus288l4iZAZ3xcSbp9waBq8zbewVHo6Qc3ubxzLYBzJOERA6T9rj9zkekk6PfAuY/s1600/DSCN2470.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY02ytfumoUR8zLeWv4EQl2UTQB02iDqSzyVzHuxefwXpjJovnLyMhzRSr9IvlHo_Fh40HjCCZpmlus288l4iZAZ3xcSbp9waBq8zbewVHo6Qc3ubxzLYBzJOERA6T9rj9zkekk6PfAuY/s1600/DSCN2470.JPG" height="480" width="640" /></a></span></span></div>
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">(4) We celebrated something else ... but I can't remember what it was. This is why I need to blog more often. Corrie got to go to Build A Bear to make her own Rainbow Dash (from My Little Pony) - she's been saving money, and we've been hoarding gift cards. Then we all enjoyed root beer floats!</span></span></div>
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">(5) Emmett and I went on a cruise to celebrate 15 years of marriage! OK, so our anniversary was back in November ... and this was actually a work-related thing for Emmett (he had a conference onboard) ... but still, a CRUISE! My mom took care of all 3 kids while we vacationed for 5 whole days. I napped. And read books. And napped some more. It was so <i>restful</i>.</span></span><br />
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<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;">And we had a wonderful Easter, but I plan for that to get its own post. Possibly in June. :)</span></span><br />
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Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com3tag:blogger.com,1999:blog-7712284417008523313.post-56373151608029571022014-03-06T13:38:00.001-08:002014-03-06T13:47:09.876-08:00Advocating for the ABLE Act<span style="font-family: Trebuchet MS, sans-serif;">Guess where I went last week?</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidEIe7zVHhwZWXSGZC-QkRDLdzplCzbFxq1WVA2xyqHZQ8dMl6msmrNiBqSJT75RsV3HMsdH8mhoBg3eJ_fkbG1HFmWROILnNQOaNKihyEiKpzSX7DYkWk09wCnTHP0GONJ9DEHV9flsc/s1600/DSCN2386.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidEIe7zVHhwZWXSGZC-QkRDLdzplCzbFxq1WVA2xyqHZQ8dMl6msmrNiBqSJT75RsV3HMsdH8mhoBg3eJ_fkbG1HFmWROILnNQOaNKihyEiKpzSX7DYkWk09wCnTHP0GONJ9DEHV9flsc/s1600/DSCN2386.JPG" height="480" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">To Capitol Hill! </span></div>
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<span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif; line-height: 26px;">I joined a group of advocates from all over the United States to talk to our senators and representatives about the ABLE Act. The current version of the Achieving a Better Life Experience Act was introduced in February 2013 and would allow individuals with disabilities or their families to open a tax-sheltered savings account to pay for certain long-term expenses. </span></div>
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<span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif; line-height: 26px;">I'm terrible about remembering to take pictures, but I visited the offices of Senator John Cornyn, Senator Ted Cruz, and Representatives Stockman, Granger and Hinojosa. I met several other parents from Texas, and had a meeting with David Egan, an amazing self-advocate.</span></div>
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<span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif;"><span style="line-height: 26px;">I even got to meet Sara Wolff, the woman with Down syndrome who has collected more than 200,000 signatures on Change.org in favor of the ABLE Act.</span></span></div>
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<span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif;"><span style="line-height: 26px;">It was inspiring to spend a day on the Hill talking to people about the ABLE Act. </span></span><a href="http://www.washingtonpost.com/news/parenting/wp/2014/03/06/how-the-proposed-able-act-will-help-parents-of-children-with-disabilities/" style="font-family: 'Trebuchet MS', sans-serif; line-height: 26px;" target="_blank">This article</a><span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif;"><span style="line-height: 26px;"> explains the legislation a lot better than I can, but I'll try to share how the ABLE Act will impact our family. As the law now stands, </span></span><span style="color: #2c2c2c; line-height: 26px;"><span style="font-family: Trebuchet MS, sans-serif;">people with disabilities are only allowed to save $2000 before they lose eligibility for needed governmental services, like Medicaid and SSI. As a parent, this means that I can save money for Evan and Corrie under their names (for college, or a car, or whatever) but I can't save any money in Ben's name. He's forced to remain in poverty in order to receive services. Keep in mind, he doesn't receive any of these services now. He's on our private insurance, and we pay a monthly co-pay for Early Intervention.</span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">This was my message to our congressional representatives:</span></div>
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<span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif;"><span style="line-height: 26px;">Ben has gifts, strengths, talents and opinions. I have hope and confidence that he will want to participate in our community life - and that he will be a valuable member of our community. Ben has so much to offer, and the ABLE Act will allow our family to save for his future just as we are saving for our other children. We have high expectations for all three of our kids, and I promise that we will do our best to give all three a great start.</span></span></blockquote>
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<span style="color: #2c2c2c; font-family: 'Trebuchet MS', sans-serif; line-height: 26px;">Over 400 members of Congress are signed on as co-sponsors of the ABLE Act. If it came to a vote today, it would pass. We just have to get the bill to the floor.</span></div>
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<span style="color: #2c2c2c; font-family: Trebuchet MS, sans-serif; line-height: 26px;">I was astonished by the amount of people wandering the halls of Congress to talk about different causes. There were ladies from the Garden Club discussing environmental issues, young people addressing the need for suicide prevention, and more. I'm grateful to live in the United States and have access to our elected officials. Never in my wildest dreams would I have imagined that I would go to D.C. to advocate for my child and others like him. And yet, here I am. </span></div>
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<span style="color: #2c2c2c; font-family: 'Trebuchet MS', sans-serif; line-height: 26px; text-align: left;">This boy - and his future - are worth it!</span></div>
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</span> <span style="font-family: Trebuchet MS, sans-serif;">It has been a long time coming. When he was a baby, I used to try to pull him to a stand. He flat out <b>refused</b> to put any weight on his feet. I would lift his arms to pull him up and Ben would remain in a sitting position - just sitting on air instead of letting his feet drop down to touch the floor. He learned to roll over before he was a month old, but it took forever for him to get on all fours. He army-crawled for months. And then instead of crawling, he developed a silly way of scooting on his bottom. Man, was he fast! If the kids left the garage door open while I was distracted, Ben would be in the garage, across the driveway, and halfway down the sidewalk to the neighbors' in a flash - all while scooting on his bottom.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I knew that he would learn to walk eventually. And I didn't really mind the wait. The scooting was funny, and when he figured out crawling, it was great to watch him motor across a room.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">There were pangs, though. Moments where I realized how hard he was working to feel comfortable on his feet, and times when I saw other little ones striding across a room while Ben sat comfortably in one spot, not ready to move or explore.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">I wrestled with my expectations. How much should I push him?</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">We built in a little walking and exercise time every day. He saw (and still sees) a physical therapist once a week. Big brother and sister called "walk to me, Ben!" as he took tentative steps from a couch to a sibling. We laughed as he applauded himself. A friend brought over a great walking contraption made out of PVC pipes. Ben did laps.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">What made the difference? I'm not sure. It could have been the tubes in his ears. Maybe he had some balance issues that were remedied by getting tubes. It could have just been the right time; he was finally ready. He got more standing toys (like this sand table), and his stamina increased. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">But I think a big part of Ben walking more now has to do with me and my willingness - finally - to slow down. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">It takes a lot of patience to hold his little hands and walk together down a sidewalk. </span><span style="font-family: 'Trebuchet MS', sans-serif;">My back ached from bending over to hold fingers. And honestly, I am often in a hurry. Impatient. I have things to do and places to go. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Life is much simpler when you can swing a baby onto your hip and tote him around. Or stick him in a shopping cart while picking up a few items at the grocery store. I got in the habit of carrying him everywhere because (1) he's my baby and (2) it was just plain easier.</span><br />
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</span> <span style="font-family: 'Trebuchet MS', sans-serif;">Over the past month, I have deliberately given Ben opportunities to walk. I have slowed myself down to walk with him from the parking lot into church. I have let him out of the cart at the grocery store so that he can help me push. I have left the stroller in the trunk while Ben and I mosey around the park. </span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">This kind of practice is fun for him even if it feels painfully slow to me.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">But it has been good for both of us. I need the reminder to slow down, to spend time on the important things, not just the urgent. To give my attention to the significant people in my life. To let my loved ones have a say in how we spend our time together.</span><br />
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</span> <span style="font-family: Trebuchet MS, sans-serif;">And now Ben is walking. Ironically, this is probably going to speed us up all too soon.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">To see him walk, check out this <a href="http://youtu.be/awYE6YVefUY" target="_blank">video</a>.</span><br />
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<a href="https://www.blogger.com/%E2%80%9Dhttp://theartofsimple.net/bluebike%E2%80%9D"><img border="”0″" src="”http://theartofsimple.net/wp-content/uploads/2014/02/bluebikeblogtour.jpg”" /></a>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com3tag:blogger.com,1999:blog-7712284417008523313.post-26408444852254853092014-01-29T21:26:00.002-08:002014-01-29T21:26:46.618-08:00Thoughts on Sign Language, Speech and Communication<span style="font-family: "Trebuchet MS",sans-serif;">Ben knows many, many signs. I really should make a list. I know he's got more than 100 words, but I haven't bothered writing them all down. Maybe he has 200! Or not. :) </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">For a long time, it seemed that Ben would rarely begin a conversation himself. He would respond to questions (ex. "Would you like something to eat?") with appropriate signs ("banana," "eat," etc.). He clearly understood what we asked, but he rarely made the first move.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Lately, he is using sign language more effectively - and he is initiating conversations. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">When we were sitting in the living room on Friday, Ben pointed out the window and signed "outside. slide." Of course, it was 32 degrees, so I told him that we could not go slide outside, but I loved that he requested something that wasn't food or Signing Time.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">If I'm attempting to put him in his crib (and he doesn't want to go to bed), he will point at the door to the bedroom, signing "Go. Please. More." </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">He signs "book" when he's ready for storytime. He will often sit with a book and sign all the words to himself. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Corrie loves to play with Ben, but she often provokes him. They will play in some rough and tumble way, and he will communicate his displeasure by grunting. She won't stop, and <i>then</i> he responds by pushing her. Now it is not right for Ben to push or hit, but I can see how it
frustrates him when he is "telling" her to stop and she continues the
behavior. We have had several conversations about how Corrie and Evan have to pay
attention to the ways Ben communicates - even if he doesn't have spoken
words yet. Well, the other day, she was messing with Ben, and he
grunted a couple of times, then he stopped, looked at her very
deliberately, and signed emphatically, "STOP." It was great to see him
use a sign at the right time, in the right context. And she knew what
he meant.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I hope and expect that Ben will learn to talk. He can make lots of noises (you should hear him when he "talks" on the phone) and he moves his lips into the appropriate places for sounds (Mmm, Bbb, Ppp), but he hasn't managed to connect the sounds with the lips yet. He just got tubes in his ears, so I'm hoping that we'll see an improvement in his speech. I don't hear him use many consonants, and I wonder if that has to do with his hearing or fluid in his ears.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Lately, I've been thinking about preschool. Ben turns three this summer, and he will start preschool in the fall. In my ideal world, he will attend a local church-based preschool 2-3 mornings a week, and go to the public preschool the other 2-3 mornings. I have great confidence in Ben's ability to be part of both preschools. His receptive language is on track for his age, so he should do fine following directions for circle time, songs, crafts, etc.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I'm not sure how preschool will work with Ben's signs. I want him to be able to communicate with the other kids and teachers, and the best way for him to do that right now is through sign. However, I also want him to talk. I wonder how that transition from signing to speaking works. We use sign and speech together, so I'm hopeful that he will do the same thing - learn to say the word while he makes the sign. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I spoke with a mom of a teen with Down syndrome the other day. Her child has wonderful speech, but even so, the mom said that that her daughter will sometimes get frustrated because she will think the words faster than she can say them. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">It is easy to think of speech as an indicator of intelligence, but I begin to understand that it is not. Low muscle tone and poor motor planning can create a physical barrier between the words in the head and the words that come out of the mouth. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I want Ben to be able to communicate in a meaningful way. Right now, he does.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com6tag:blogger.com,1999:blog-7712284417008523313.post-13206836637974647042014-01-26T21:40:00.001-08:002014-01-26T21:40:30.513-08:00Weekend Update (mostly Evan)<span style="font-family: Trebuchet MS, sans-serif;">This was a big weekend for our family. Emmett and Evan share a birthday: January 24th. On Friday, Emmett turned 40 (!) and Evan turned 9. </span><div>
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<span style="font-family: Trebuchet MS, sans-serif;">We celebrated all weekend long. On Friday, Emmett and I saw the second Hobbit movie while the kids were at school. A sweet girl from our church came over to hang out with Ben while we had our matinee date. Immediately after the movie, I stopped at the elementary school to pass out cupcakes and juice boxes to Evan's class. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Evan's party was Saturday afternoon. Emmett managed to borrow Minecraft accounts from several friends and family members, so that Evan and 10 of his closest friends could play a massive Minecraft game in one of the university computer labs. They had a GREAT time. We took a short break for pizza and ice cream cake, and then they dove back into the computer game. Afterwards, several parents hung out on campus while the kids ran around playing freeze tag. I think this was the easiest party ever ... and now I have several elementary school boys asking me about when they can have another game day. We might have to make this a regular event.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Emmett had his own game night on Saturday. He played XBox online with several friends from around the country, and they played until after 1 a.m.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">On Sunday, we finished the weekend by ordering Chicago-style pizza from a local restaurant. It was yummy, but not quite as good as Lou Malnati's or Gino's East. :)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It's hard to believe that Evan is nine. That sounds so grown up! Only one more year until double digits.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Things I want to remember about Evan at this age:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(1) He loves to read! This year, he has devoured the Percy Jackson series, the Chronicles of Prydain by Lloyd Alexander, and he's just diving into Harry Potter. I loved reading when I was a kid (and I still do!), so his fascination with books delights me.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(2) He is a Two Square and Four Square fiend. I don't remember playing these games at all, but they are all the rage in our neighborhood. The kids play Two Square or Four Square at recess, and then they play in our driveway for hours after school.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(3) He still loves hot sauce. He douses his rice, eggs, tortilla chips, etc. with Tabasco or Louisiana Hot Sauce every time he eats. I worry about his stomach.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(4) He roots enthusiastically for the Seattle Seahawks. We will be a divided house when the Seahawks and Broncos play in next week's Super Bowl.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I have more thoughts about the person that Evan is becoming - his commitment to training and practice (in math, sports, and more), his sense of humor, his growing friendships with kids at school and in our neighborhood, and his strong sense of justice ... but all those things are more difficult to explain.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I am thankful that I get to be his mom.</span></div>
Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com0tag:blogger.com,1999:blog-7712284417008523313.post-81150327440114554062014-01-21T20:03:00.002-08:002014-01-21T20:03:33.438-08:00Blog Hop: A Truth, A Tip and A Photo<span style="font-family: Trebuchet MS, sans-serif;">Truth: I'm not sure what truth to share here. Do you want facts about Down syndrome? Here's one: <i>30-50% of individuals with Down syndrome have a congenital heart defect.</i> Ben has a moderately-sized ASD - an atrial septal defect. It's a hole between the two upper chambers of his heart, and we will probably eventually have it surgically corrected. When Ben was born, I worried more about his heart than anything else.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Tip: Join a local group. When Ben was first born, I didn't know anyone near me who had a child with Down syndrome. I found a lot of information and helpful advice on the internet, but I felt very isolated from the people around me. Now I know several great families in my town (and even in my neighborhood!) who have children with Down syndrome. We go to playdates and birthday parties together. We share advice about doctors, therapists, schools, etc. I love that my kids will grow up knowing people of all ages who have Down syndrome.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Photo: Ben likes to <i><b>help</b></i> with the laundry.</span><br />
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<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com2tag:blogger.com,1999:blog-7712284417008523313.post-47610088229105179542014-01-19T21:33:00.002-08:002014-01-19T21:33:20.385-08:00A Few Days Without Daddy<span style="font-family: Trebuchet MS, sans-serif;">My husband has been out of town for a few days. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">He doesn't travel often, so when he does, the kids and I bumble around a bit. We miss him. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This week, we have eaten lots of chicken nuggets and fries, frozen pizza, popcorn and M&Ms. The kids also ate fruit, but I'm honestly not sure if they've even seen a vegetable since Tuesday.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">On Wednesday, I took them to school ... late. I was overly ambitious when I made breakfast - scrambled eggs and toast. By the time we got to school, the teachers and crossing guards had left their posts and there were no other cars at all in the dropoff lane. Oops. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Wednesday afternoon, Ben had to see the ENT before I pre-registered him at the hospital for ear tube surgery.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thursday, Ben had surgery to put tubes in his ears. The procedure itself was simple and short, but I was still nervous. Anesthesia! Fortunately, my friend Beckie came to hang out with us at the hospital. And Ben was a rock star. In and out, mostly happy. The nurses kept saying how cute he is. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We picked up lunch for the big kids and met them at school. They both enjoyed showing Ben off to their classmates. Evan's class know Ben pretty well; they have seen him at school for programs for the last 3.5 years. Corrie's classmates got to meet him for the first time. Ben basically spends his time at school crawling or walking around the gym surrounded by a dozen other kids, who are all trying to give him a high five or throw him a ball or something. He's quite popular.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Our other daddy-less activities included: two Star Wars movie nights and the Run or Dye 5K. (And a couple of facetime chats with Daddy, Gamma, Papa and Auntie Jen).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Originally, I thought I would run the 5K with Evan. He loves to run, and I didn't think he would have any trouble doing 3.5 miles. However, I didn't realize that Emmett wouldn't be there to watch the other kids ... and then I did absolutely no training after one initial run with Evan in early December.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So ... I walked with Corrie and Ben. Evan ran ahead and finally walked us for the last kilometer or so. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Evan felt that dodging the color would demonstrate how fast he was, so he tried to avoid the dye as much as possible. The blue guys got him the most.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">Corrie got lots of color. After our first dye-ing experience, she sighed, "Mom, I got a LOT of color thrown at me. It's because I'm so adorable." No self-confidence problems here. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgVSu_IR_wfOvAht6dZbAUCXgOiU4bVhb-2gfdruz1WWq4qCQhgzTRpubZXvTjG4qM_TWagWlys_58Ck5PU6a-5Nhhs2gXHq4pDEjZOET7xx-xgJoIT7lWOGjookOhyphenhyphenkHLo0lYmwnxnxM/s1600/DSCN2194.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgVSu_IR_wfOvAht6dZbAUCXgOiU4bVhb-2gfdruz1WWq4qCQhgzTRpubZXvTjG4qM_TWagWlys_58Ck5PU6a-5Nhhs2gXHq4pDEjZOET7xx-xgJoIT7lWOGjookOhyphenhyphenkHLo0lYmwnxnxM/s1600/DSCN2194.JPG" height="400" width="300" /></a><span style="font-family: 'Trebuchet MS', sans-serif; text-align: -webkit-auto;">Ben ended up with more color than the rest of us. Every time we went through a color station, the volunteers would squeal, "A baby!" and gently throw color at him. </span><span style="font-family: 'Trebuchet MS', sans-serif; text-align: -webkit-auto;">It occurred to me during bath time after the race that I might should have protected Ben a little bit more. He wasn't bothered at all, but his ears are still tinted blue and yellow. Maybe it wasn't a good idea to throw powdered dye at someone who just got tubes put in. Live and learn.</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_GK-59McTDsg-tVQ9HKjhYscFl2MCWwyWsmbh3QIpkbnXdsfeU8xOf0oOxHx_zjO8ROG2mIWp0hdccCFxwP1XdAXrDW8f6hhvAGktaEtnhBsfXoQf55AVT5qhVFyjh7bP80s9y35yzYI/s1600/DSCN2193.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_GK-59McTDsg-tVQ9HKjhYscFl2MCWwyWsmbh3QIpkbnXdsfeU8xOf0oOxHx_zjO8ROG2mIWp0hdccCFxwP1XdAXrDW8f6hhvAGktaEtnhBsfXoQf55AVT5qhVFyjh7bP80s9y35yzYI/s1600/DSCN2193.JPG" height="480" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">All in all, we survived pretty well without Dad. We failed on healthy eating and boy did I get impatient at bedtime, but we did manage to navigate one surgical procedure AND a 5K run/walk. I'm satisfied.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thankfully, Emmett arrived home this morning, and we have been relishing his attention all day long. He has danced with Corrie around the living room, listened to Evan recap the latest Minecraft adventures, and shared his dinner with Ben. We watched football and napped on the couch. All is right with the world.</span><br />
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Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com2tag:blogger.com,1999:blog-7712284417008523313.post-77614284703542489632013-12-31T19:57:00.000-08:002013-12-31T19:57:19.200-08:002013 In Review (From the Kids)<span style="font-family: Trebuchet MS, sans-serif;">For the past couple of years, I have read and considered the New Year's Eve <a href="http://theartofsimple.net/new-years-eve-reflection-questions/" target="_blank">reflection questions</a> from Tsh at The Art of Simple. This year, she included 10 questions for kids. For quiet time today, I gave Evan and Corrie a list of questions to answer. Tonight, we talked about them before bed. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Their answers:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"> 1. What was your favorite thing from this past spring?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: My favrite thing in spring was school ending.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: I started dance balay. (ballet)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">2. What was your favorite thing from the summer?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: Going to a ranch.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: We went to swimming.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">3. What was your favorite thing from this past fall?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: Football.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: Start Canterbury (She started kindergarten this year).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">4. What was your favorite thing from this past winter?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: Watching Frozen.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: Frozen.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">5. What was the hardest thing that happened?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: UIL was the most challenging thing this year. (Math competition)</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: Spilling a deeck. (drink) - She spilled a drink about half an hour before answering this question. We had friends over, so she was embarrassed, and she had to change clothes. There were many tears.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">6. What were the best books you read this year?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: Percy Jackson and Lloyd Alexander</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: The Lion, the Witch and the Wardrobe</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">7. Who were the most important people in your life?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: My family, then David and Aidan</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: Blue blankie</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">8. What was your favorite thing that you learned this year?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: Math</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: To Read</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">9. How do you hope this year will be like this past year?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: More books</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: School</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">10. How do you hope this next year will be different for you?</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Evan: Less writing.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Corrie: New dance class.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Emmett and I were talking about Ben's possible answers to the questions. I think Ben's favorite thing in every season is Signing Time, plus he loved our trip to the ranch. Ben hasn't had too many hard things ... he did fall into the coffee table when he was practicing walking a few weeks ago. Favorite book: probably Eric Carle's From Head to Toe. He also loves to read the Signing Time books and sign to himself. Most important people: I think he would say his mother. :) His favorite thing he learned: the feelings signs (happy, surprised, grumpy, scared, etc). We hope that next year will be similarly fun for him and his siblings - they enjoy each other very much. And we hope that next year will have Ben learning to walk - and hopefully saying (not just signing!) some words.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have many editorial comments about Evan and Corrie's responses. For example, Corrie has been learning SO MUCH this year - riding a bike, reading, math - it's amazing to see all the ways she's grown in just the past few months. However, I will use this space to record and remember <i>their</i> responses. And maybe later I will post my thoughts about them. :)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-37606159913545922082013-11-28T21:52:00.000-08:002013-11-28T21:52:11.565-08:00Happy Thanksgiving!<div class="tr_bq">
<span style="font-family: "Trebuchet MS",sans-serif;">Thanksgiving morning ... the kids woke up early. Evan headed downstairs to the computer. Warcraft 3 was calling his name. The other two snuggled in bed with me and their dad for a while. Corrie read books to Ben, and they practiced signing together.</span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"> Cookie.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCgcdXKWqVtEwiO9L3roFQzjK99MA3gVqufTgs9zAYQw8GxRvDTjik6e_7yZykgNUrGfK-g7i968dxH3MHZVIBq1mBxVXbu7unARzqw2_wKzPbnP1HF8_Yc6dRfbBziaJ1XLZsuQQKB-U/s1600/DSCN1900.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCgcdXKWqVtEwiO9L3roFQzjK99MA3gVqufTgs9zAYQw8GxRvDTjik6e_7yZykgNUrGfK-g7i968dxH3MHZVIBq1mBxVXbu7unARzqw2_wKzPbnP1HF8_Yc6dRfbBziaJ1XLZsuQQKB-U/s320/DSCN1900.JPG" width="320" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Cheese. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpRZn1pFdf0ltJXp5muk4Bq6uUnUTgovrWWInxCe1huInIKZZiQulHLQbcs7OUjX0lZWmw3xKlhsKewbF2p1Nq-77xeLwnWPIh3yOUc5K4xD1Oc4mlB3_P_LaN_v0Qf9YJRfgPiLM4MTs/s1600/DSCN1904.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpRZn1pFdf0ltJXp5muk4Bq6uUnUTgovrWWInxCe1huInIKZZiQulHLQbcs7OUjX0lZWmw3xKlhsKewbF2p1Nq-77xeLwnWPIh3yOUc5K4xD1Oc4mlB3_P_LaN_v0Qf9YJRfgPiLM4MTs/s320/DSCN1904.JPG" width="320" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Doll. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Bike.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Book. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrnw3A3nXV-kdrCmd9PWgddEP8lR75LP-XwdecMr1nuCvfUVJFrVBNHGop71prDvEyDf_CBVsi6oB_bcpfczRY11-wKLwUAZ_Rr2wT_5eHz2nBQ0k7mor2Jul4mbYNmjc3MklIHD2NgyE/s1600/DSCN1909.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrnw3A3nXV-kdrCmd9PWgddEP8lR75LP-XwdecMr1nuCvfUVJFrVBNHGop71prDvEyDf_CBVsi6oB_bcpfczRY11-wKLwUAZ_Rr2wT_5eHz2nBQ0k7mor2Jul4mbYNmjc3MklIHD2NgyE/s320/DSCN1909.JPG" width="320" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">I have been falling behind on Ben's signs lately. I'm sure he knows over 100, because he's got the first three Signing Time books completely figured out, plus many words from the other videos. The problem is that I don't always watch the videos with him, so he starts signing emphatically at me ... and I don't always recognize the word. Groan.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">We cooked yesterday and today, and made enough food to feed an army. This is the first time we've had Thanksgiving with just the five of us - usually we are with family or we do a big potluck with friends. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Today's menu:</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">smoked turkey (made by H.E.B.)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">spiral sliced ham (also H.E.B.)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">cornbread dressing (my grandmother's recipe, with some edits from my mom and my Aunt Alice)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">green beans (cooked forever, in good Southern style)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">creamed corn (my mom's recipe)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">sweet potato casserole with pecan topping (Nan Smith's grandma's recipe)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">broccoli casserole (Mrs. Grayson's recipe)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">cranberry sauce (the jellied kind from a can)</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">homemade rolls (made by Emmett and Corrie, with a little support from the bread maker) </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">pumpkin pie</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Tarheel pie (mostly chocolate and pecans, Pat McNair's sister's recipe)</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I noted all the recipe origins because I felt so close to home today ... even though we are hundreds of miles away from family. We used recipes that my mom has used for years, from women who were faithful members of our church in Mississippi. There is something special about Thanksgiving - about the traditions of food and giving thanks, and remembering church communities and loved ones near and far. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Corrie is a super pie baker. Before starting her work in the kitchen, she needed to model her apron in front of the mirror for a few minutes. Note the obstacle course of chairs and assorted tables behind her.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAmW81ajf18Yzc8y-_6UrnLanfz4z0wCPMxlvFOPkxldEXCYYvcsKPv6sMXT63rvjwC6PXB6NvzVvGvmw6I0V6X9EiOGgrrWz1X25Cw1NlcnQpr3YLehI2QXPTBZzFP3n0hulC7rhgsrY/s1600/DSCN1877.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAmW81ajf18Yzc8y-_6UrnLanfz4z0wCPMxlvFOPkxldEXCYYvcsKPv6sMXT63rvjwC6PXB6NvzVvGvmw6I0V6X9EiOGgrrWz1X25Cw1NlcnQpr3YLehI2QXPTBZzFP3n0hulC7rhgsrY/s400/DSCN1877.JPG" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3n3eXzvBsq9GqCkIBLcU6bmynarbqt3ufifnj1Q47joa7U7q9I1Ttqgo-_74-qzalaA3reaNlXQ3OCez0CHNtqODjCPsbCr3ABp9zjCnLN0v6AyQiRcahj9gHc08UzgUgtZzPpcSGbj0/s1600/DSCN1874.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3n3eXzvBsq9GqCkIBLcU6bmynarbqt3ufifnj1Q47joa7U7q9I1Ttqgo-_74-qzalaA3reaNlXQ3OCez0CHNtqODjCPsbCr3ABp9zjCnLN0v6AyQiRcahj9gHc08UzgUgtZzPpcSGbj0/s400/DSCN1874.JPG" width="300" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">While Corrie baked, Ben climbed.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNVc7PLkPtH7vvQX-DV3fDspLIjcG4TQNfnac3ER5qGPEPSLfpsXtVWSmZgdUGKEs0uugUz85eJuerVjakCEbBe_P2GPgSvAUr-gfmobaK4BpvSO2JJ26_qCxu7TBi3orD44i1AoBWm_0/s1600/DSCN1898.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNVc7PLkPtH7vvQX-DV3fDspLIjcG4TQNfnac3ER5qGPEPSLfpsXtVWSmZgdUGKEs0uugUz85eJuerVjakCEbBe_P2GPgSvAUr-gfmobaK4BpvSO2JJ26_qCxu7TBi3orD44i1AoBWm_0/s400/DSCN1898.JPG" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoBYd-lY7juFqpLVQjP-wImwmE0TELFIMuZ7dGWpCtWKHPLE3htG9RGs3keyI26ZYELOfcbuOK_eLKYkCldfJePij1Zx-MwYb4-H-_jpBZEhlE2iF3tn49vpfEBvuullW2QIXyZdka_cU/s1600/DSCN1886.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoBYd-lY7juFqpLVQjP-wImwmE0TELFIMuZ7dGWpCtWKHPLE3htG9RGs3keyI26ZYELOfcbuOK_eLKYkCldfJePij1Zx-MwYb4-H-_jpBZEhlE2iF3tn49vpfEBvuullW2QIXyZdka_cU/s400/DSCN1886.JPG" width="300" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">He navigated his way from one side of the room to the other, climbing on the chairs or the coffee table most of the way. Proud boy!</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And here's a photo of the food:</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;"> </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiae6g_rPaJ0zHz65LxsQYz49DodkkLDag6OkAdxhl65XbS9LmQS4rmq6UWUz4WvAPAPWt0LQ_ZnzcJefCrBUW-5Gz5jtXfNeSbG2DFje6XRCyXULTYHX3Cu6wU5XXiNv5BzYy3xrpE2Eg/s1600/DSCN1910.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiae6g_rPaJ0zHz65LxsQYz49DodkkLDag6OkAdxhl65XbS9LmQS4rmq6UWUz4WvAPAPWt0LQ_ZnzcJefCrBUW-5Gz5jtXfNeSbG2DFje6XRCyXULTYHX3Cu6wU5XXiNv5BzYy3xrpE2Eg/s640/DSCN1910.JPG" width="640" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">We got out the good china, and Corrie found different Thanksgiving decorations to put on the table: a cornucopia and a mini flower pot turkey. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">The next picture makes me laugh. For those of you with young children, you'll see how we arranged Ben's seating and the food. Maybe next year, we'll use the whole table. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmu-Uicq_dKbzso6OkivtYiveFdL7x8TndkF78KbaSA_3p1m3jiipXqg7VqvKhjuXGzoU3sViR3KeGvtThVvvAB31cPuLNS-wqCCb4_VRk-18xeiWoPvzLLEBXEIeMEygbgylAp86DZtg/s1600/DSCN1911.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmu-Uicq_dKbzso6OkivtYiveFdL7x8TndkF78KbaSA_3p1m3jiipXqg7VqvKhjuXGzoU3sViR3KeGvtThVvvAB31cPuLNS-wqCCb4_VRk-18xeiWoPvzLLEBXEIeMEygbgylAp86DZtg/s640/DSCN1911.JPG" width="640" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;">Bless his heart, Ben was so hungry by the time we ate! He took a nap before dinnertime, and kept signing "eat!" "please!" "more!" but we tried to hold him off until everything was ready. We put him in his chair as we got all the food out, and he started praying by himself. <b><i>Let me give thanks so I can eat! </i></b></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgszsFzhfBy_9slbLZJZySmfCBvmSV_qxQcP1iuYiUAlXc4hDc1VkP16vL-A4u-tRlPjTl1IEwSVzSEqiye0EUHJDPthYsxFQI9EzxMLwfa60Y1ocP1vexGLU_XzFanzMpsRFeP_KHJwpU/s1600/DSCN1912.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgszsFzhfBy_9slbLZJZySmfCBvmSV_qxQcP1iuYiUAlXc4hDc1VkP16vL-A4u-tRlPjTl1IEwSVzSEqiye0EUHJDPthYsxFQI9EzxMLwfa60Y1ocP1vexGLU_XzFanzMpsRFeP_KHJwpU/s320/DSCN1912.JPG" width="240" /></a></span></div>
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<span style="font-family: "Trebuchet MS",sans-serif;"> By the way, I hope everyone saw the left side of Evan in that next to last picture. We didn't take any official family photos today, and he spent a lot of his free time enjoying computer games. :) He did shuck the corn for me, though. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">And we all hung out together a lot today: while Ben was napping, the rest of us played a game (7 Wonders - it's a German game, lots of fun). Then after dinner, we took a family walk/bike ride through the neighborhood, then talked to family in Hawaii and Mississippi on FaceTime.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">We have much to be thankful for: family, friends, health, home, church, community, and God's great faithfulness and love.</span><br />
<blockquote class="tr_bq">
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<span style="font-family: "Trebuchet MS",sans-serif;"><i>The steadfast love of the Lord never ceases; <br />his mercies never come to an end;</i></span> <span style="font-family: "Trebuchet MS",sans-serif;"><i><br />they are new every morning; <br />great is your faithfulness.<br /><br />"The Lord is my portion," says my soul,<br />"therefore I will hope in him." </i></span></blockquote>
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Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com0tag:blogger.com,1999:blog-7712284417008523313.post-58331337559760909442013-10-06T20:39:00.002-07:002013-10-06T20:39:34.217-07:00Quick Post (31 for 21:6)I'm still not quite recovered from the Walk on Saturday. I had a great time, and have enjoyed reading people's facebook posts, and seeing pictures and videos. I need to think about it a little more before I write about it.<br />
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Let me send you to one of the 31 for 21 posts that I have really enjoyed this week:<br />
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<a href="http://www.mystubbornmiss.com/2013/10/31-for-21-day-five.html" target="_blank">How to celebrate Down Syndrome Awareness Month if you don't have a child with Down syndrome</a><br />
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There have been so many more excellent posts, that I couldn't decide which other ones to feature!<br />
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If you want to read more about families who have a child with Down syndrome, please check out this <a href="http://mdbeau.blogspot.com/2013/09/7th-annual-31-for-21-blog-challenge.html" target="_blank">great list of blogs</a> that are participating in 31 for 21. Maybe you will find a new favorite blogger.<br />
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And here's a quick picture of me and my silly guy at the Walk yesterday. He's such a ham!<br />
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<br />Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com0tag:blogger.com,1999:blog-7712284417008523313.post-76543403646253444852013-10-05T20:09:00.002-07:002013-10-05T20:09:40.984-07:00Step UP! (31 for 21:5)Today was the Step Up for Down Syndrome Awareness Walk. We had 1000+ people come out to walk, to dance, to cheer, and to party. My heart is full!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5fFaFSSPaNdq0DUSK2hRPoIbi_zAigU_WAIddnAOW9uflNIJqCKRLLnu9WNCc00ZZHngcjXrL7l1fPWFFWWp3aQThMJEtLNDzcCuQ7udqq-BbjZCBOg8y6E2JEyb4qQZUlupOzlo0mos/s1600/SUDS_ben_poster.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5fFaFSSPaNdq0DUSK2hRPoIbi_zAigU_WAIddnAOW9uflNIJqCKRLLnu9WNCc00ZZHngcjXrL7l1fPWFFWWp3aQThMJEtLNDzcCuQ7udqq-BbjZCBOg8y6E2JEyb4qQZUlupOzlo0mos/s400/SUDS_ben_poster.jpg" width="400" /></a></div>
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Just a couple of pictures from the day! I will add more tomorrow. :)<br />
Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com1tag:blogger.com,1999:blog-7712284417008523313.post-25032345703993455012013-10-04T05:41:00.000-07:002013-10-04T05:41:06.115-07:00ACK! (31 for 21:4)<span style="font-family: "Trebuchet MS",sans-serif;">I am going to be away from the blog today. Why?</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Do you remember <a href="http://whatateam.blogspot.com/2013/09/this-big-new-thing.html" target="_blank">my post</a> from a few weeks ago? Remember how I was so amazed and excited that we were going to have 275 people at our very first Step Up Walk?</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;"><b>The Walk is tomorrow, and there are officially 968 people registered.</b></span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Praying friends, please pray! I think everything is going to be AWESOME. But, oh, it is a bit terrifying at the same time. Every day I get calls from people who just found out about it and want to register, and every day I am delighted at the prospect of meeting more local families who have a loved one with Down syndrome.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">We are kicking off Down Syndrome Awareness Month in a big way!</span>Deborahhttp://www.blogger.com/profile/09211537058262061608noreply@blogger.com2