tag:blogger.com,1999:blog-69881472150450520042024-03-13T06:18:51.126-04:00My Boy MaxAmyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-6988147215045052004.post-56872206221699672822014-07-17T19:01:00.001-04:002014-07-17T19:01:40.327-04:00Glimpse: The Importance of Community<div dir="ltr" style="text-align: left;" trbidi="on">
When I walk into the cafeteria at the school where I work I'm often struck by how the students select their seats. Almost fifty different nations are represented in that sea of heads arranged into little groups, each with something major in common. Most often, and sometimes most visibly, the magnet that pulls them together is their ethnicity and/or native language. Sometimes, though, that magnet is a common interest. Look a little closer to that sea of heads and you'll find a table or two of skaters, a couple for the artists, several full of athletes, and others for the goth kids, the actors, the politicians and any other group you might think of. <br />
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This separation isn't self-<i>segregation</i>--it's not truly exclusive. But it is clearly self-<i>selection</i>, and it has an important function in a diverse society: self-<i>preservation</i>.<br />
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It's a scary world out there and people find comfort in what they know.<br />
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The same is true for families touched by Down syndrome, or autism, or cerebral palsy or cancer or diabetes. The ability to spend time with people who already "get it" is invaluable. "Baby" is 12 months old and not crawling...big deal. "Toddler" is two, 30 lbs. and not walking...get a handicap placard for the car. "Preschooler" is almost 4 and still in diapers...relax my dear, it'll come. No explanation and certainly no justification necessary. Just mutual understanding, and more importantly, support.<br />
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<b>They speak the same language</b><br />
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Last Saturday was my day to indulge in this self-preservation with my little T21 Club. We were a small group--summer is a busy time for everyone--but we enjoyed ourselves nonetheless. While our kiddos played we mommas discussed the usual: milestones, Early Intervention, IEP's, potty training, communication supports, sleep studies and specialists.<br />
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We watched little Xavi, not quite one year old, crawl on all fours. We laughed when Max and Nathan pulled all the toys off the shelves in the walk-in closet effectively blocking their exit and then started hollering when they couldn't find a way back out. Tiffany soaked up the all the extra hugs she received that afternoon, and Bonnie and I both teared up when our boys, about four months apart, played with a ball <i>together </i>(milestone) and began to takes turns babbling. Full on conversation style. Bonnie and I, astonished, looked at each other and she said, "Oh my gosh! They speak the same language."<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-CTalWkcfA-M/U8gwUTV2IVI/AAAAAAAADQ4/WEbdJA4-CiY/s1600/20140712_145224.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-CTalWkcfA-M/U8gwUTV2IVI/AAAAAAAADQ4/WEbdJA4-CiY/s1600/20140712_145224.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The closet before about five minutes before the hollering.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Just seconds from crawling.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">You just can't see the ball.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">In between hugs.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Pensive.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hard at work.</td></tr>
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-40137415572828884902014-06-06T13:39:00.001-04:002014-06-06T13:40:47.632-04:00Friday Laugh: Max Sleeps Folded In Half...Literally<div dir="ltr" style="text-align: left;" trbidi="on">
Of all of the physical characteristics that can come with Down syndrome, Max's low muscle tone seems to be the one that continuously makes the biggest impression on Sean and I. <br />
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Sean sent me this picture today.<br />
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That's Max in our back room, asleep, folded completely in half. Notice the feet protruding from either side of his head like a set of on tiny antlers. He does this most nights after sitting bolt upright, still asleep, and then slumping forward. I've never known him to <i>begin </i>sleeping this way.<br />
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I think we are raising a future contortionist!<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-76572036197291349092014-06-05T14:41:00.000-04:002014-06-05T14:43:13.759-04:00Glimpse: Remembering How It Was<div dir="ltr" style="text-align: left;" trbidi="on">
I just received an email letting me know that someone rated my post on <a href="http://www.circleofmoms.com/mothers-of-special-needs-children/possibility-of-down-syndrome-questions-616976?trk=em_rated_post&email_enc=ocOq0NiUZ87cy8bUoc3OlKKgkJva1w%253D%253D&email_src=1401828514813933e321de6e4e216b823312a77329&template_name=thread_post_rating#post_5108457">Circle of Moms</a>. I didn't remember ever posting there so I clicked and this is what I found:<br />
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<blockquote class="tr_bq">
Hi there. Our son will be turning 2 in November, but I remember well
what you are going through. When I was 12 weeks pregnant, my husband and
I were told there was a 1 in 10 chance of our baby having Down
syndrome. We chose to do a CVS which confirmed the diagnosis. We were
devastated, passing through several stages over the course of several
months before we came to terms with it. By his birth we had accepted the
diagnosis, and were looking forward to meeting him. Now, he is the
biggest joy in our lives. There were health struggles at first stemming
primarily from his congenital heart defect, but since the repair he has
thrived. He's energetic, loving, funny, happy, easy-going, curious,
determined, and, well, the greatest little boy we could have ever asked
for. At first I thought that Down syndrome had ruined my baby. But after
meeting him I realized it was the Down syndrome that makes him perfect.</blockquote>
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Except for the "easy-going" part of it, every bit is still true. I love my boy.<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com0tag:blogger.com,1999:blog-6988147215045052004.post-38969342015436620212014-05-31T19:50:00.002-04:002014-05-31T19:50:59.731-04:00Guess What Max Did Today<div dir="ltr" style="text-align: left;" trbidi="on">
I had planned an entirely different post for tonight--a well-organized, well-edited, polished kind of piece, but I'm a week post-surgery (nothing life-threatening) and frankly, I'm tired. So, instead...<br />
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Grocery shopping. Ugh. A seemingly benign, and often enjoyable experience rendered almost intolerable by one's own small children. There's one grocery store in town that has carts large enough to seat two children side-by-side. Unfortunately, that's not the one that houses my bank, so this afternoon we braved the other one.<br />
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Until recently, I could put Max in the seat and nestle Chance's bucket in the cart, squeezing groceries in around the edges. Chance is too big for that now, so today he sat in the seat and Max walked alongside.<br />
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Let me say that again in case you didn't quite catch it.<br />
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Max walked alongside.<br />
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Through the entire store.<br />
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For 30 minutes. <br />
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It wasn't perfect. There was some flopping, one unexpected break for the door, many misplaced items and a box of cookies I didn't plan to buy, but we did it.<br />
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I feel like I passed a test. A really, really hard test.<br />
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Now here's the real question: Can we do it again next week?<br />
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How do you keep your toddler near the cart? Tell me about it in the comments.<br />
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And now, a couple of goodnight, back lit, phone pics:<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com0tag:blogger.com,1999:blog-6988147215045052004.post-66609765264115333272014-05-28T20:24:00.001-04:002014-05-28T20:24:46.375-04:00To the New Momma I Spoke with on the Phone Today<div dir="ltr" style="text-align: left;" trbidi="on">
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There are two important things you need to hear right now, again and again and again: <br />
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Congratulations! And, it gets better. Cliche, I know, but it's true.<br />
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While the world comes crashing down on you, it's impossible to see. After all, THIS only happens to OTHER people. But after you've fully mourned the loss of the child you thought you were having, as well as the future you and your husband planned, I promise you, it gets better. After those first months in and out of doctors offices, it gets better. After the first thousand, <i>well, she has Down syndrome's,</i> in response to well-meaning but unobservant strangers, it gets better. After you've cried your last tear, and let escape that last primal scream of anguish, I promise you, it gets better. <br />
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From this moment forward, everything in life, both yours and hers, is earned. Every smile, every laugh, every tear of joy. You will see your little girl work harder for the seemingly simple things in life than any other child you know. She will sit, but she will work for it. She will crawl and she will stand, but she will work for it. She will walk, she will talk...she will work for it. She will work every day of her life to make you laugh, and make you smile, and when you do, she'll work even harder to do it again. And you'll work just has hard to make her life just as easy as you can. That effort will become the source of the greatest joy you will ever know. <br />
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And then one day you will wake and you will realize that this unexpected, life-changing little being has, of course, changed your life, but not in all the awful ways you thought. Her presence will inspire you to achieve your greatest self. For her, for you, for your family. One day you will look in the mirror and you will see a new person, a better person, a person you can truly be proud of. She will make your life complete. <br />
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So even though you didn't choose to be here, in this community, know that when you are ready, it, she, we will be here to help you every step of the way. Everything will get better.<br />
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Better than you can possibly imagine. <br />
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And one day, when you get a call from a new momma, you can honestly and genuinely say, "Congratulations!"<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com2tag:blogger.com,1999:blog-6988147215045052004.post-49475024550458261172014-05-20T20:30:00.000-04:002014-05-20T20:30:56.001-04:00Completing the Requisite Sleep Study<div dir="ltr" style="text-align: left;" trbidi="on">
Down syndrome comes with lots of stuff. Good stuff, bad stuff..."eh" stuff. Somewhere between <i>"eh" stuff</i> and <i>bad stuff</i> are the sleep disturbances. Some are dangerous, like <a href="https://www.ndss.org/Resources/Health-Care/Associated-Conditions/Obstructive-Sleep-Apnea--Down-Syndrome/">obstructive sleep apnea</a>. Some are scary, like night terrors. Others are just annoying, like night waking. <br />
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<a href="http://www.dseinternational.org/en-us/">Down Syndrome Education International</a> has a terrific explanation of the most <a href="http://www.down-syndrome.org/reviews/320/">common sleep disturbances</a>, like reluctance to fall asleep, waking, mouth breathing, and bed-wetting. While you visit, check out their very enlightening comparison of the frequency of sleep disturbances in children with Down syndrome compared to typical children, as well as suggestions on how to deal with several of them.<br />
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To get a better idea of how our children sleep many physicians recommend a sleep study somewhere around age four.<br />
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Max has his about two weeks ago at Boston Children's Hospital. From our point of view, Max's sleep is very disturbed--reluctance to sleep, waking, night terrors, flopping--so I was surprised to hear that Max's study showed normal sleep behaviors. Huh.<br />
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Some of you will be preparing for your little one's sleep study soon, so here's a look at how it went.<br />
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On the night of the study, Sean packed Max into the car already in his pj's and arrived at the hospital at 7:30 pm. They went directly to the sleep lab where the technicians allowed Max to roam the space, Mickey Mouse dragging behind, while they finished their initial preparations. Likely an anxiety reducing strategy. <br />
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When the techs were ready they plopped Max on the bed and went to work inserting and securing the nasal cannula and attaching the senors to his scalp. Note the strategic use of the iPad here. Max was too busy playing his game to notice the activity around his head. If your child doesn't use an iPad I recommend bringing a book, or movie or other activity he or she finds very engaging. You'll be happy you did.<br />
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To make extra sure none of the sensors slipped, the technicians wrapped Max's entire head in gauze. He looked like a binky-sucking cotton swab, but still didn't seem to care that much.</div>
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The straps around his torso secured a large sensor pad his back, and those cords, well, who the heck knows. Despite all of that seemingly unbearable equipment, Max fell asleep in seconds flat, and stayed asleep all night. Kinda like taking your clunking car to the shop where it drives beautifully for the mechanic. </div>
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Sean "slept" next to him on a pull-out chair, and around 6:00 in the morning the technicians woke Max up. They quickly removed all their gadgets leaving Max's hair a sticky, greasy nest, and sent Daddy and child on their way. </div>
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There was nothing to it. I have heard that some children freak out a bit during the hook up, but calm down once the chaos clears. What seems to be universal, though, is that parents bring whatever makes the kiddo feel calm. Max's Mickey, iPad and binky went a long way toward helping him feel more comfortable.<br />
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Have you or any of your kids had a sleep study? I'd love to hear about it, and I know some other readers would too. Tell us about it in the comments.</div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com0tag:blogger.com,1999:blog-6988147215045052004.post-9603554300420654982014-05-08T20:41:00.000-04:002014-05-08T20:41:10.250-04:00How Google Made Me Cry<div dir="ltr" style="text-align: left;" trbidi="on">
I recently got a new phone--a Samsung S5 so it's entirely controlled by Google. My thoughts on that matter are many and varied, but this is not the time nor the place. Let me get to the point.<br />
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This afternoon, the bell that alerts me to check my phone chimed so I pulled down the "notifications" tab. "Auto Awesome - new video, " is what it said.<br />
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I hadn't seen this one before, but it said it was awesome, so.... So I clicked it and was greeted by the video below. It seems Google made it for me with some videos and pics I took at the park on Sunday.<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzbrYersZwKp4oDiI3WENdmDh7IXUZW76pjFTuPxpDA_kQnZ2Hw7zZgHN_oh-t7cwBb3CRJ4h5oOx4ZmVT2-w' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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As I watched I smiled, then cried. Then I felt a little strange about it, imagining someone out in northern California remotely searching my phone. Then I came to my senses and cried again. Can't wait for my next "Auto Awesome - new video."</div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-47459713114041368932014-05-05T21:27:00.003-04:002014-05-05T21:28:41.767-04:00Focus on the Positive<div dir="ltr" style="text-align: left;" trbidi="on">
Some days are hard. Today ended hard but didn't start that way. It started in the normal way. Early alarm, shower, dress, breakfast. Then at 6:00 I heard Max's door click and the morning quickly went from normal to, "Yeah! I get to see my boys!" That's a rarity on workday mornings.<br />
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With bottle in hand I crept upstairs and found Chance gnawing the crib rail. He giggled when he saw me. As I changed his diaper he took long, relieved drags on the nipple. Sean kissed my cheek on his way to the bathroom and Max patted my hip and babbled until I said, "Good morning." And it was.<br />
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But like I said, today ended hard. I won't dwell on it here, but it was filled with vomit and cancelled plans to watch Daddy play softball. <br />
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Instead, I focus on the positive, like this morning, and some moments from this weekend. Please enjoy them with me.<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com3tag:blogger.com,1999:blog-6988147215045052004.post-85208266138137495752014-04-28T19:40:00.001-04:002014-04-28T20:08:29.665-04:00Afternoon Smile: Chivalry is Not Dead<div dir="ltr" style="text-align: left;" trbidi="on">
What would you think if someone said to you, "Your son is such a gentleman."<br />
<br />
"Huh?" Well that's what I thought. I even did a little double-take just to make sure that Max's aid was talking to me and not another hovering momma.<br />
<br />
Here's the story:<br />
<br />
Max was sitting at the top of the slide about to push off but noticed someone behind him. Turned out to be his little girlfriend, so what'd he do? He stood up and let her go first! And if that wasn't enough, he did it again a little bit later!<br />
<br />
Can you imagine?<br />
<br />
Sean's response when I told him:<br />
<br />"Oh, I like that. Hope it was me that taught him."</div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-14173373359732805632014-04-26T17:54:00.001-04:002014-04-26T17:58:29.179-04:00Friday Laugh--A Better Way to Eat Peanut Butter<p dir="ltr">I'm sitting in a Starbucks, having just come from visiting a friend's little boy at Boston Children's Hospital, only to find that the battery in my car is as dead as a door nail. Long story short, I'm waiting for the battery charger to charge so I can jump my car so I can get to my friend's surprise 30th which begins in five minutes. </p><p dir="ltr">Ugh.</p>
<p dir="ltr">And yes, I realize it's Saturday, but wanted to make sure I got in this week's Friday Laugh and this seemed as good a time as any. </p>
<p dir="ltr">Here goes:</p>
<p dir="ltr">Have I mentioned Max's low muscle tone before? He's a real life Gumby and regularly does things with his body that make us cringe. So it was no surprise the other day when he inexplicably got peanut butter all over the bottom of his foot and started to lick it off. Surprising, no. Funny, yes. </p><p dir="ltr">Yummy!</p><p dir="ltr"><br></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh5.ggpht.com/-y7lBnnheRGY/U1wrD2-FBmI/AAAAAAAAA2Y/3uvb02eM0Gc/s1600/Max%252520Peanut%252520Butter%252520Foot.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh5.ggpht.com/-y7lBnnheRGY/U1wrD2-FBmI/AAAAAAAAA2Y/3uvb02eM0Gc/s640/Max%252520Peanut%252520Butter%252520Foot.jpg"> </a> </div>Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-52234421249632866702014-04-18T22:47:00.001-04:002014-04-18T22:47:19.453-04:00Friday Laugh--What's the Best Use for a Mylar Balloon?<div dir="ltr" style="text-align: left;" trbidi="on">
Chancellor's got an idea:<br />
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And then there's this:<br />
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<tr><td class="tr-caption" style="text-align: center;">I swear, Daddy, it wasn't me!</td></tr>
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Have your kids made any crazy messes lately? Tell me about them in the comments.</div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-24124917392162726322014-04-15T20:48:00.002-04:002014-04-16T08:14:28.033-04:00Midweek Check-in: The Evil Twins<div dir="ltr" style="text-align: left;" trbidi="on">
Today marks day 11 of my upper respiratory revolt and my mattress is beckoning, but I thought it important to quickly ask:<br />
<br />
Does the full moon transform your children into beasts?<br />
<br />
Yesterday (full moon, I believe), the roles of my children were played by imposters bent on making me hate them with every fiber of my being. To say I was exhausted, disappointed, discouraged, frustrated, <i>insert adjective of your choice here, </i>at bedtime is an understatement. <br />
<br />
To my extreme pleasure the universe saw fit to return my children today and we had a lovely afternoon. They were reasonably well-behaved, very giggly, ate well and went to sleep easily. What a relief.<br />
<br />
And while I didn't feel in the mood to snap pics today, I've got a few recent ones to share.<br />
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Enjoy.<br />
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<tr><td class="tr-caption" style="text-align: center;">One of many pics of Maximus the Sleepy.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Waiting for Daddy to take him to opening day at Fenway Park.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Attempted baby selfie.</td></tr>
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com2tag:blogger.com,1999:blog-6988147215045052004.post-84541015703986432372014-04-11T21:03:00.001-04:002014-04-11T21:07:33.677-04:00Friday Laugh: Suction and the Shirtless Model<p dir="ltr">Tonight's laugh is twofold. First, quickly scroll to the bottom. Check out that pose. How cute is that? Nonnie bought that hat for Max at last week's Red Sox game and he's been obsessed ever since. I think a Men's Health cover is in our future.</p>
<p dir="ltr">Second, Max loves the shower. He's plops himself down over the drain and kicks the water that accumulates around his legs. It's great fun and often ends with toddler protests as he fights my efforts to get him out. On Monday, between my attempts to hoist a slippery boy out of the tub, he laid down on his belly with his head turned to the side. Like a suction cup his ear suck to the tub bottom. Again, and again, and again, and again. It's now his favorite bath time game.</p>
<p dir="ltr">And yes, it makes me laugh.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="http://lh3.ggpht.com/-9rxKi1TkP30/U0iQ0C6mZ7I/AAAAAAAAAzY/7LVppHgDsSo/s1600/IMG_20140411_115140.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="http://lh3.ggpht.com/-9rxKi1TkP30/U0iQ0C6mZ7I/AAAAAAAAAzY/7LVppHgDsSo/s640/IMG_20140411_115140.jpg"> </a> </div>Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com0tag:blogger.com,1999:blog-6988147215045052004.post-78134952618986435892014-04-06T10:04:00.003-04:002014-04-06T10:04:46.159-04:00Morning Smile: Sick<div dir="ltr" style="text-align: left;" trbidi="on">
Title seems like an oxymoron, I know. (Quick aside: I just learned that <i>oxymoron </i>is itself an <a href="http://en.wikipedia.org/wiki/Oxymoron">oxymoron</a>. Neat.) <i>Sick </i>doesn't usually play nice with <i>smile</i>, but with Max around, anything is possible.<br />
<br />
I came down with a killer cold last night. Painful sore throat, swollen tonsils, stuffy nose, plugged ears, headache, dizziness, joint pain. Sleeping was more of a battle with my pillow than it was restful and now I'm the grownup for two little ones. Sean is working.<br />
<br />
Max and I are both seated on the couch. I've been looking through recipes while he plays a game on the iPad. Every few minutes I start to cry (I know, it's silly) cuz I just don't feel good, and every time Max pats my arm and puts his head on my shoulder. How cute is that? It doesn't make my cold go away, but it sure does make me feel a little better, if only for a moment. </div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com2tag:blogger.com,1999:blog-6988147215045052004.post-68615406603975830822014-04-04T20:40:00.001-04:002014-04-04T20:40:58.410-04:00Friday Laugh: Fenway Opening Day 2014<div dir="ltr" style="text-align: left;" trbidi="on">
Today was Opening Day at Fenway. Max is three years old and has been four times. Sean and I took him when he was barely five months old. It was cold, windy and really loud, and he slept like a baby (yes, pun intended). Sean has taken him every year since, and every time it's cold, windy and really loud and yet he still sleeps like a baby.<br />
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There was a woman there that said to Sean, "Your son is soooo cute. Mine's 24." Kind of a weird thing to say, only it isn't. When Sean told me this just a few minutes ago, I filled in the blank right away. Has that ever happened to you? "Your son is soooo cute. Mine has Down syndrome too. He's 24." We belong to the club. We didn't choose it, but we're so happy to be here. And today it made me laugh, twice. <br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com0tag:blogger.com,1999:blog-6988147215045052004.post-86480814099834167902014-03-20T22:03:00.001-04:002014-03-20T22:03:43.116-04:00World Down Syndrome Day: A Day in the Life of Max<div dir="ltr" style="text-align: left;" trbidi="on">
Boom!<br />
<br />
It happened again, just like it happens every night. Sweet dreams born of warm blankets and a cozy bed broken as his 3-year-old body plummets eight never-ending inches to the cold, hard, wooden floor.<br />
<br />
"Uh-oh." It's 5:30 am and Mommy hears the tell-tale thud from the kitchen where she prepares her lunch before heading off to work. She freezes, waiting.<br />
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Click. Max's door opens.<br />
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"Please, don't wake the baby. Don't wake the baby. Don't wake the baby," whispers Mommy. She can hear his quick steps as he pads across the hall to join his snoring Daddy in the big bed.<br />
<br />
Max pushes open the door. Boy it's dark. He shuffles toward to the foot of the bed, hoists himself onto the cedar chest, left empty for just this purpose, and up onto the bed. The covers are tangled and messy but he easily makes his way toward the pillow that Mommy left behind an hour before. He nestles into Daddy who lifts the covers.<br />
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"Ha!"<br />
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"Shhhh..." Says Daddy. "Time for sleep."<br />
<br />
"Ha!"<br />
<br />
"Shhhh.... Sleep."<br />
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It's not long until his breathing slows.<br />
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************<br />
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"Oooo! Oooo! Oooo!" Max is pointing at the snack cupboard.<br />
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"No, Max. It's time for breakfast. Want pancakes?" Laura, with plate in hand, leads him to his his plastic table in the corner. She holds the plastic chair still as Max shimmies on.<br />
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Daddy enters, his shirt newly pressed, his tie hanging undone around his neck. "Morning. Amy'll be home at the usual time today."<br />
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"No problem," says Laura. <br />
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Daddy leans down to kiss Max on the head and waves. "Bye-bye, Max."<br />
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"Say 'bye-bye,' Max. 'Bye-bye.'"<br />
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Max throws his hand into the air. "Bah-bah. Bah-bah-bah-bah."<br />
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************<br />
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"No, Max! No!"<br />
<br />
Max is standing at the bottom of the stairs, toy truck in hand, arm cocked back ready to fire. Laura lunges but is too late.<br />
<br />
Boom! The truck slams into the wall so hard surely it'll leave a mark.<br />
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"Don't wake up. Don't wake up. Don't wake up...uh-oh. Max, you woke up your brother."<br />
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************<br />
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The clock on the radio reads 3:25 when Mommy arrives. The children are already on the playground. so she backs into the parking spot to get a better view. It's not hard to find Max. Like every other day, he's on the swing. Miss Becky steps away from him to help a little girl and he begins to slow. He doesn't like this. He crosses his arms in front of himself and very forcefully flings them outward. "All done. I'm all done!" he signs, but no one notices. <br />
<br />
He's getting frustrated, and Mommy's feeling anxious. She waits, but just as her will power gives out a little boy swoops in and gives Max a huge push. Mommy can't hear Max's delighted giggle but as she watches a grin spread across his face she can feel one spread across hers too. <br />
<br />
The clock now reads 3:29. It's time. On cue car doors begin to slam as mothers, a few fathers, and a grandma or two make their way toward their kids. Mommy's coat is the same long, fluffy, black down as half the other mothers and her hair is pulled into a messy utility bun, but Max, who has been scanning the parking lot, spots her right away. His hand flies up, thumb toward his chin with fingers pointing upward. "Mommy! Mommy! Mommy!" he signs again and again. Mommy's heart leaps.<br />
<br />
"Hi, buddy!"<br />
<br />
"Hah!" <br />
<br />
"He had a great day," says Miss Becky. She slides the straps of his backpack over his shoulders. "We went to the movement room. He's gonna be tired tonight."<br />
<br />
************<br />
<br />
"Hugh!" Mommy grunts as she heaves Max out of his car seat. Laura opens the side door and reaches for the back pack dangling from Mommy's wrist.<br />
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"Is he asleep?" Mommy nods. As she approaches the couch Laura slides off Max's sneakers and together they remove his heavy coat. He stirs but doesn't wake. <br />
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************<br />
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"First chicken, then biscuit." Max bats away the fork.<br />
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"One, two, three!" Daddy makes a break for it with the kiddie fork. Success! A few quick chews, swallow, and then biscuit. <br />
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Round two. "Ready? One, two, three!" Success, again! "Yeah, Max!"<br />
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"Yaaaahh!" Max claps. "Wah, wah, wah, wah, wah." He reaches for his cup. After several large, loud gulps he gasps for air, hands Mommy his empty cup and reaches for the biscuit.<br />
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************<br />
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"Time for bed?" Daddy grabs the footie pajamas that Max is holding. "Say 'Nah-night' to Mommy."<br />
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"Goodnight, sweetie. I love you." Mommy kisses Max's cheek. He waves over Daddy's shoulder as he goes upstairs.<br />
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A moment later Daddy returns. "He's out."<br />
<br />
"Oh, good."<br />
<br />
Boom!<br />
<br />
"Uh-oh."<br />
<br />
Click. Max's door opens.<br />
<br />
"Please, don't wake the baby. Don't wake the baby. Don't wake the baby."</div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com2tag:blogger.com,1999:blog-6988147215045052004.post-45284563030829770782014-03-17T21:08:00.000-04:002014-03-17T21:08:54.320-04:00Guest Post by Marty Green: I Love Being a Grandfather<div dir="ltr" style="text-align: left;" trbidi="on">
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--></style> Today marks a first here at My Boy Max. We've ventured into "guest post" territory, and I'm down right excited about it. This inaugural post is brought to us by none other than my very own dad--a.k.a "Pop" to me and "Papa" to the kiddos. I started bugging him a few months back but as life is wont to do, it got in the way. Then a few days ago this little gem showed up in my inbox. Enjoy!</div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-NGx055PCpSQ/UyecE0-qvHI/AAAAAAAAAyU/kbqkinTf9_4/s1600/IMG_1967.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-NGx055PCpSQ/UyecE0-qvHI/AAAAAAAAAyU/kbqkinTf9_4/s1600/IMG_1967.jpg" height="400" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max with Papa, August 25, 2012</td></tr>
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I love being a grandfather!<span style="mso-spacerun: yes;">
</span>OK----I’m not crazy about being old, but being a grandparent is a nice
offset to creaking joints, age spots, and ear hair.<span style="mso-spacerun: yes;"> </span>My move from carefree middle age to
grandparent happened 9 years ago when our oldest son Andy and our daughter-in-law
Nicole presented us with AJ.<span style="mso-spacerun: yes;"> </span>At the
time, my wife Barb being the practical, organized, plan-a-header that she is
asked, “so, what do you want to be called?”<span style="mso-spacerun: yes;">
</span>Sensing a trap I replied, “Well, King of The World would be nice.”<span style="mso-spacerun: yes;"> </span>“No no”, she said.<span style="mso-spacerun: yes;"> </span>”What do you want your grandchildren to call
you?<span style="mso-spacerun: yes;"> </span>You can be Grandpa, Grampy, or
Papa.”<span style="mso-spacerun: yes;"> </span></div>
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Hmmm, I had to think about that.<span style="mso-spacerun: yes;"> </span>I decided it was a good idea to choose a name
ahead of time, otherwise I might wind up being called Bumpa, Uncle Green, or, gulp,
Old Man.<span style="mso-spacerun: yes;"> </span>Grandpa was too ordinary,
Grampy sounded too much like Grumpy but Papa was just right.<span style="mso-spacerun: yes;"> </span>The more I thought about it the more I liked
it.<span style="mso-spacerun: yes;"> </span>In my romantic musings I would
become like Papa Hemingway, patriarch of a vast brood that doted on me in my
declining years, which, by the way, have already started. </div>
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Soon, Nicolas came along and AJ had a little brother.<span style="mso-spacerun: yes;"> </span>Now we could have week-end sleepovers,
forbidden trips to the ice cream shop, and non-stop play days, no chores
allowed.<span style="mso-spacerun: yes;"> </span>And the best part, after I had
completely destroyed all of the good habits my kids were trying to instill it
was time to take the grandkids home.</div>
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And so it was with a sense of joy, pride and eager
anticipation that we accepted the news that Amy and Sean were going to have a
baby.<span style="mso-spacerun: yes;"> </span>But then, the dreadful news,
something was wrong.<span style="mso-spacerun: yes;"> </span>There was an
abnormality.<span style="mso-spacerun: yes;"> </span>The baby was not going to
be “normal”.<span style="mso-spacerun: yes;"> </span>The sentence was Down
Syndrome.<span style="mso-spacerun: yes;"> </span>I was devastated at first, but
not for me, I was just a grandparent.<span style="mso-spacerun: yes;"> </span>I
was heartsick for Amy and Sean.<span style="mso-spacerun: yes;"> </span>What did
this mean for them?<span style="mso-spacerun: yes;"> </span>What sacrifices
would they have to make, what hardships would they have to endure, and what
would it mean for a child in this condition?</div>
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After a very bittersweet pregnancy Maximus Alexander Lanagan
came into this world and everything changed.<span style="mso-spacerun: yes;">
</span>No longer was Down Syndrome a stigma, no longer was his disability a
sacrifice.<span style="mso-spacerun: yes;"> </span>His presence in our lives
immediately changed our perspective forever.<span style="mso-spacerun: yes;">
</span>He was a blessing.<span style="mso-spacerun: yes;"> </span>Max became our
very own “Profile in Courage”.<span style="mso-spacerun: yes;"> </span>At 4 months
he had to endure major heart surgery.<span style="mso-spacerun: yes;">
</span>I’ll never forget visiting the intensive care unit.<span style="mso-spacerun: yes;"> </span>It looked like the bridge of the Starship
Enterprise; video screens and monitors covering an entire wall beeping and
flashing.<span style="mso-spacerun: yes;"> </span>Nestled in the middle of it
all in a tiny basket was my courageous little Max with a scar from breast bone
to navel but still fighting.<span style="mso-spacerun: yes;"> </span>Soon after,
he was fitted with glasses because of his poor eyesight.<span style="mso-spacerun: yes;"> </span>He took it all in stride, wears them when he
wants to watch Mikey and throws them away when he gets tired of them.</div>
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Amy said “I can’t wait till he walks.”<span style="mso-spacerun: yes;"> </span>I said, “Be careful what you wish for
honey.”<span style="mso-spacerun: yes;"> </span>He’s not walking now, he’s
running.<span style="mso-spacerun: yes;"> </span>One of my favorite times is
knocking on the door at Amy and Sean’s and waiting for Max to open it.<span style="mso-spacerun: yes;"> </span>His pure unadulterated joy at seeing me just
melts my heart.<span style="mso-spacerun: yes;"> </span>Max can say my name
using sign language now and he’s starting to make some sounds that could be
words.<span style="mso-spacerun: yes;"> </span>Maybe his first word will be
Papa! </div>
</div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com3tag:blogger.com,1999:blog-6988147215045052004.post-71934563338615345392014-01-28T22:30:00.000-05:002014-01-28T22:30:31.842-05:00All About Chance: Milestones<div dir="ltr" style="text-align: left;" trbidi="on">
If you read my last post, you know that I'm trying to sleep more. As it turns out, sleep takes time. Who knew? If I sleep, it seems something's gotta give, and since I won't let it be my boys, I guess it's gonna be this space from time to time. Ideas and words and clever (to me, anyway) turns of phrase always dance in my mind and I love to have this outlet for them but finding the time to sit down and type, especially on my laptop with its battery that won't hold a charge, an "a" key that sticks, and a Max who gets a real kick out of closing anything, is really darn hard (nice run-on sentence, Amy). I think I need Dragon, darn it! Or a an assistant. Hmmm...there's a thought. <br />
<br />
Ok, excuses made, it's time for my periodic post about...drum roll please...my boy, Chance. <br />
<br />
Ta-da!<br />
<br />
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<br />
Fast. It's happening in flash. <br />
<br />
First, the roll-over. Then the crawl, straight and fast, and over, under or through everything in sight. <br />
<br />
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<br />
Next, the sit. <br />
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<br />
Perfect posture.<br />
<br />
And finally, the stand. Now is preferred resting position.<br />
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<br />
Next will be the walk, definitely before summer. Looks like that fenced-in park down the road will be a favorite hang-out in warm weather.<br />
<br />
And the best part, Max is gaining a playmate.<br />
<br />
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<br />
Oh, wait. The teeth. Chewing, drooling, whining. Thanks goodness for tiny thumbs.<br />
<br />
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<br />
That's my boy, Chance.<br />
<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com7tag:blogger.com,1999:blog-6988147215045052004.post-71913689115669292782014-01-08T18:58:00.000-05:002014-01-08T18:58:12.194-05:00Wednesday Revevlations<div dir="ltr" style="text-align: left;" trbidi="on">
I'm not a good mom when I'm tired, especially to Max. Yeah, I know the title says "Wednesday," but it actually hit me last night. Don't know why I never noticed before. Probably because I was, well, tired.<br />
<br />
Max was challenging yesterday. Tired too, I think. There was lots of crying, hitting, throwing, going boneless, and once he very purposely pushed Chance (still unsteady on his haunches) over backwards making him cry. I have to admit I felt rather pleased when Max's bottom lip started to quiver. At least he felt bad about it. <br />
<br />
As I was struggling with Max to put him to bed I noticed my anger rise. In typical female fashion I've got a laundry list of things I can do better but I see myself as generally patient. This seemingly sudden appearance of a short temper has gotten my attention. Where did that come from? Why am I yelling at a three-year-old? If something should happen to him or to me during the night is this how I want our last moments to be? Wack-a-doo thoughts of an exhausted momma.<br />
<br />
The thing is, Max doesn't talk. With the exception of a handful of signs and lots of pointing and grunting he can't tell me what he needs. He can't yell at me. He can't tell me what hurts or why he's sad. He gets frustrated, I get frustrated, I loose my temper and I feel like a bad momma. I must remember to take a step back and take a deep breath and start again. <br />
<br />
Twice today I encountered women who look (to me) like they are handling this motherhood thing better than me and both times I cried about it.<br />
<br />
The first was at pick-up while we mommas (and a few daddies and a grammy or two) gathered in the subarctic temperatures waiting for our kiddos to come smiling out the school doors. She arrived in her Pumas and skinny jeans, this momma who is always happy, bubbly and eager to chat with her other momma friends. I've heard her say she has a daughter, and I know her son has special needs. Not sure what they are but he's in Max's substantially separate classroom, so.... What's different about this momma and me? She's not exhausted. In her case it's probably because she doesn't have a paying job sucking the life energy from her bones. I watched her for a minute or two until Max came out. My tears fell onto his belly as I buckled him into his seat. <br />
<br />
The second happened only minutes before I began writing this post. Catching up on the blogs I follow, I read the rants of a stay-at-home momma of three in Florida who spent hours trying to learn patterns on her daughter's Rainbow Loom. She actually had the time and energy to do that. I'd be lying if I said I wasn't A LOT jealous. <br />
<br />
Priorities, that's what it boils down to. I need to make sleep one of mine. Much easier said than done, especially as a tag-team parent. But Max needs me to be a good momma. He needs me to be patient. He needs me to play with him and teach him. He needs a momma who's happy and energized. Chance needs me too, but right now his most pressing needs are basic. Food, sleep and a clean bum. Max needs a parent, a teacher, a guide, a friend, a playmate. <br />
<br />
So, this isn't a resolution. It's not something I'm gonna say I'll do and then give up in three weeks when it gets hard or boring. This needs to be a real change. A change that will benefit my health, my parenting skills, and my relationship with my boys.<br />
<br />
Here's to sleep! And before I head off to my bed, a few cute pics.<br />
<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com2tag:blogger.com,1999:blog-6988147215045052004.post-63500432645281762482014-01-05T22:24:00.003-05:002014-01-06T21:28:06.616-05:00End of the Year in Review<div dir="ltr" style="text-align: left;" trbidi="on">
I've been hiding and it's been lovely. 12 days free of long commutes, f-bombs in the hallway and senioritis. In their place I've had time for baking, baby snuggles and even an occasional glass of wine.<br />
<br />
Speaking of which, hold for one minute...<br />
<br />
Much better.<br />
<br />
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<br />
I'm not sure how other working mothers do it, but my boys wear me out. Except for a pretty scrumptious quiche on Christmas Eve, my baking was all post-Santa. In fact, it wasn't until the 26th that the hardcore relaxation even began. And begin it did. On one blissful morning Sean sequestered the kids in the living room and I slept until 11:00 am. I have no memory of the last time I did that. When I finally woke (because my phone rang) my body ached for lack of practice. Can you believe it?<br />
<br />
That's enough about me. Now on to Max and Christmas.<br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">Max is signing "binky." He made that sign up.</td></tr>
</tbody></table>
Even at three years of age Santa's not on the radar and there was no giddy anticipation of Christmas. In the weeks preceding I said "yes" to everyone who asked if Max was excited, but truthfully, I don't think he got it. Presents, though, he gets. Finally. And I love it! Watching him tear open the paper to reveal the goodies inside, seeing the smiles and the wide eyes--especially when Mickey Mouse peered back at him--nothing better.<br />
<br />
It's taken Max a long time to reach each and every milestone and they're met with great praise and excitement, and sometimes relief. But it's the little things, like trying to pry open a box to get at the toy inside, that make me feel like I finally have my little boy (instead of my baby). He has arrived and he's just like everyone else.<br />
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<br />
And now I miss him! He and Daddy have been in Vermont with Nonnie and Grandpa since New Year's Eve. So it's been me and my boy, Chance. There've been new foods--"sweet" is not a favorite. Learning to climb--mostly under, not over. And bouncing. Lots and lots of bouncing!<br />
<br />
*Two days have passed since I started this post--long story. Max came home in the meantime. He looked so big to me. For just a fleeting second I got to see Max as others see him. He was beautiful, as he always is. </div>
Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com3tag:blogger.com,1999:blog-6988147215045052004.post-27080615164066371322013-12-04T17:30:00.000-05:002013-12-04T17:30:26.336-05:00All About Chance<div dir="ltr" style="text-align: left;" trbidi="on">
I've been feeling conflicted. How do I deal with Chance in this blog? I mean, it's about Max and life with Down syndrome. Look at the title for Pete's sake. Do I leave him out completely? That hardly seems fair. Do I mention him only as it relates to Max? Hmmm...doesn't seem right. Do I change the name of the blog? Nope, don't want to. And how do I respond to the multitude of pleas for pictures of a happy, squishy baby?<br />
<br />
I think I've figured it out. Tell me what you think. I keep the name, the theme, the whole nine yards, but every few posts I dedicate to Max's brother: pics, updates, silly stories. Maybe even some insights or observations on Down syndrome--you never know. Pretty good, right? I thought so.<br />
<br />
So here we go. This one's all about Chance.<br />
<br />
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<br />
He's crawling. Today's Chance's half birthday and he's already on the move. It came quickly. First he mastered the push-up followed closely by the plank.<br />
<br />
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<br />
Then the hands-and-knees rock. He's a regular rock star! We've started real food too. I roasted up and pureed a few sugar pumpkins so now we're set for quite some time. I'm also experimenting with something called <i>baby-led weaning.</i> Some of the moms in the breastfeeding group I was attending this summer were doing it. After my initial shock I kind of liked it. Take a look:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-LukXg0OLiGM/Up-oJKAWsAI/AAAAAAAAAts/hAqNaPiFR_g/s1600/IMG_20131123_093653_619.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://3.bp.blogspot.com/-LukXg0OLiGM/Up-oJKAWsAI/AAAAAAAAAts/hAqNaPiFR_g/s400/IMG_20131123_093653_619.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cucumber</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-6EE2JPnpvmM/Up-oJIqxXqI/AAAAAAAAAto/JxLLGkex3Es/s1600/IMG_20131129_122522_686.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://3.bp.blogspot.com/-6EE2JPnpvmM/Up-oJIqxXqI/AAAAAAAAAto/JxLLGkex3Es/s400/IMG_20131129_122522_686.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Apple</td></tr>
</tbody></table>
A real die-hard baby-led weaner (hee hee) would feed baby ONLY the same whole foods that mom and dad eat. No purees (and of course, no junk food). Ours is a hybrid version. Chance gets some purees and if we're eating something he can hold and mouth then he gets to try it. Without teeth he does little more than gum it up. <span id="goog_333173832"></span><span id="goog_333173833"></span><br />
<br />
Some of Chance's fans may remember the full head of dark hair he was born with. At four months it started to fall out but only in patches. The rest continued to grow and lighten while the bald spots filled in with pretty blond fuzz. Though he may not look much like me his hair is definitely mine. I love the little curls.<br />
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<br />
And to finish up today's post, here is a list of answers to the most common questions about my boy Chance:<br />
<br />
About 16.5 pounds.<br />
Happy and smiley almost all the time.<br />
Fascinated by his big brother.<br />
Really only freaked out by beards and "Row, Row, Row Your Boat." (Makes him cry.)<br />
Naps some.<br />
Doesn't consistently sleep through the night.<br />
<br />
Stay tuned for our next installment. I'm working on a post exploring new discoveries about Max since beginning school. It'll be interesting.<br />
<br />
And for those of you who made it all the way to the end, a minute of Chance not quite crawling, but close.<br />
<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com4tag:blogger.com,1999:blog-6988147215045052004.post-88801115401018611262013-11-22T10:32:00.000-05:002013-11-22T10:32:42.367-05:00Just So Darn Cute!<div dir="ltr" style="text-align: left;" trbidi="on">
I'm a worried mama. I worry about everything, even about whether I worry too much. It's a problem. And since we're two weeks in and preschool is still sucking the life out of Max you can imagine how my insides feel.<br />
<br />
Yesterday at pick-up his teacher, Miss Becky, couldn't say enough about how
smoothly his transition has gone. Phew! That's a load off my shoulders,
let me tell you.<br />
<br />
The only problem, for the last two afternoons he's fallen asleep during the car ride home. That's all of three minutes. And I don't mean he dozes off. This is log-worthy sleep. No manner of noise, jostling, light or disrobing breaks the trance. So what's the problem, you say? Well, this late afternoon snooze eliminates all hope of a successful bedtime. Last night, we finally won the battle around 9:30. The night before? 11:00. What?! That's right folks, my three-year-old wouldn't fall asleep until 11:00 pm, which made my 4:30 am wake-up so much fun. <br />
<br />
But here's the kicker, he's just so darn cute when he sleeps...<br />
<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-35275572359633521782013-11-13T21:06:00.000-05:002013-11-13T21:06:21.972-05:00Maximus the Sonambulist<div dir="ltr" style="text-align: left;" trbidi="on">
Fancy word for sleepwalker, which Max isn't, actually (I don't think), but get this.<br />
<br />
I don't like when Sean closes. He doesn't get home until almost 10:00 pm and if I haven't already gone to sleep I do shortly thereafter. He often closes several nights in a row which means we can go for days without seeing each other apart from the late night trips to the bathroom. It sucks. It really does, but the past two nights--lovely.<br />
<br />
Max is exhausted. Preschool's tough, and it's right during nap time. Ugh. So for two days now he gets home at 3:45 ready to play and by 5:00 his eyes are drooping. He's not even that interested in dinner so I change him into his pj's. At 5:30 or so we take our places on the couch--me leaning up against the corner and Max between my legs, head resting on my chest. And we watch Ellen--some recently DVR'd episode. He starts out kinda interested, clapping with audience and laughing when Ellen does, but he quickly loses interest. It's not long before his eyes close and his breathing becomes slow and deep. <br />
<br />
That's it. That's the moment that I love. My boy, lying peacefully against my body. I can feel his ribs expand as he fills his lungs with air. The binky he'd been sucking the life from just moments earlier dangles precariously from his lips. His trust in his mama is complete.<br />
<br />
And then this happens:<br />
<br />
Sean gets home last night around 10:00, as usual, and goes upstairs to change his clothes. He comes back down a minute or so later with a smirk on his face.<br />
<br />
"Where's Max?"<br />
<br />
"Huh?" I ask.<br />
<br />
"Where's Max?"<br />
<br />
"He's not in his room?" Sean's mouth spreads in a smile. "Is he in our room?"<br />
<br />
"Go check for yourself."<br />
<br />
I can tell he's enjoying this. He follows me upstairs and turns on the light as I open Max's door. No Max. I turn and scan the nursery. No Max. Can't be in the bathroom; I remember shutting the door. I move toward our room and notice the door is slightly ajar. I step inside and Sean flashes the light on like a strobe, and in that instant I see Max asleep on our bed with his legs dangling over the side. My heart simultaneously melts with love and drops with guilt. <br />
<br />
Maximus the Escape Artist forced our hand recently and he is now learning to sleep in a toddler bed. Every morning he gets up and makes his way to our room, gently closes our door waking us just enough, and waits for Sean to hoist him up. He usually sleeps for another couple of hours.<br />
<br />
Last night, it seems, Max woke up, and thinking it was morning he went to our room. Of course we weren't there. I wonder what he must have thought when Daddy didn't reach for him over the side. He clearly climbed up anyway. <br />
<br />
Sean gently returned him to his bed, but at 5:00 am as I made myself presentable for work I heard a thud and a whimper. Then a muffled cry and a few foot stomps. The door almost hit him as I entered. He was sprawled on the floor quite a distance from his bed. I gathered him up and took him to Sean where he quickly nestled into Daddy's warmth.<br />
<br />
Why was he just laying there? Did he remember not finding us the night before. Was he afraid to leave his room and not find us again? As I write this now I'm listening carefully for the sound of little feet. About 30 minutes ago I heard a thud and ran like a bolt of lightening up the stairs. He was face down on the floor next to his bed. I scooped him back up and laid him down again.<br />
<br />
I didn't want to leave him there, not even for a moment. I want him to keep that trust that lets him fall asleep so willingly in our arms. I want him to know that we will always be here for him, looking out for him and waiting to catch him if he falls (as long as it's not from a toddler bed). I want him to know that we love him and need him and always want him around. I don't want him to be afraid. I want him to know that he is loved. Because he is so loved.<br />
<br />
And because I don't have a picture of him sleepwalking, here' a recent one of him just walking. Enjoy.<br />
<br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1tag:blogger.com,1999:blog-6988147215045052004.post-82290568418527481752013-11-12T21:51:00.000-05:002013-11-12T21:51:05.606-05:00Rite of Passage<div dir="ltr" style="text-align: left;" trbidi="on">
I missed Max's first day of school today. I mean, I wasn't there to take a picture of him in his school clothes and the new backpack with the front door as the backdrop. While Sean filled that role I was filling the minds of some reluctant teenagers with all kinds of trivia about the Spanish Civil War. Did you know the North American troops that joined the Spanish to combat the spread of fascism were called the Abraham Lincoln Brigade? Me neither. Not before today.<br />
<br />
I arrived 10 minutes early for pick-up. Very eager mama. All of us eager mamas gathered at the front door in the unseasonably arctic air waiting for our little ones. I wished I'd worn a jacket, or at least a scarf, over my worn-out cardigan. True to my forever self-deprecating form I allowed myself to feel a little pang of discomfort as I noticed the trendy boots, the pricey jeans and the coiffed hair of some of the other moms. My utilitarian bun and yoga pants felt suddenly very sloppy. <br />
<br />
And then one of those pretty mamas said, "Oh, look at that little one!" "He's mine," I said, chest puffed up and big grin on my face. Sloppy bun forgotten. Miss Becky was holding his hand as he exited the building. He looked tired, but not too tired to flash that smile that melts my heart. His first day a success despite a momentary meltdown at drop-off. And as we drove the 1.5 miles to our house my eyes teared. My little boy, Max, is now a big boy and it happened so fast.<br />
<br />
It didn't really. It felt like it took a really long time. The thing with Down syndrome is that everything takes FOREVER. As a result, Sean and I enjoyed Max's infancy for months and months beyond what's typical. Max may have turned three yesterday, but he's barely a toddler. He learned to walk less than a year ago, doesn't run, doesn't jump, doesn't say a word, and only yesterday played with other children. I mean WITH other children, not alongside them. And now he's "My Schoolboy Max". Seems strange, that's all. Strange and exciting. I welcome the growth and only somewhat mourn the loss of my infant boy. <br />
<br />
So, here's a run-down of the days leading up to the commencement of this new chapter in our lives.<br />
<br />
New Mickey pj's in anticipation of the next day's festivities, <br />
<br />
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<br />
preceded by some very real tears shed as his episode of <i>Mickey Mouse Clubhouse</i> ended.<br />
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<br />
Then the big day: the Mickey-themed birthday party.<br />
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<br />
<br />
<br />
<br />
<br />
Yesterday, the actual birthday, outside in the autumn sun.<br />
<br />
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<br />
And every night for the past several, an exhausted boy falls asleep before his bedtime. <br />
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com3tag:blogger.com,1999:blog-6988147215045052004.post-42898611381130601692013-10-30T21:36:00.000-04:002013-10-30T21:36:25.252-04:00The IEP<div dir="ltr" style="text-align: left;" trbidi="on">
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Forget all those other milestones.
Forget rolling and sitting and standing and walking and saying the first word.
None of these long-anticipated milestones comes close to measuring up to the
IEP. </div>
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<br /></div>
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At least, that’s how I felt before
we had our meeting with Max’s new school. </div>
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<br /></div>
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As a teacher I’ve attended
countless IEP meetings, contributing my input to the pot of academic and
behavioral mush that special educators sift through to create an individualized
education plan. (That’s what IEP stands for.) It’s a legally binding document
detailing everything the school intends to do in order to make the school and
the curriculum accessible to the student. I’m never part of the testing that
precedes and informs these meetings, and because I’m a high school teacher I
rarely witness the creation of the original IEP. That usually (hopefully)
happens earlier in a child’s academic career. </div>
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<br /></div>
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These IEP meetings can go in any
direction. They can be frustrating, productive, enlightening, informational, uplifting,
discouraging, argumentative. They can even stall out when nobody agrees, needing
to be reconvened another day. </div>
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<br /></div>
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In light of all the meetings I’ve
attended I’m surprised to realize and a little embarrassed to admit that I’ve
never truly tried to put myself in the parents’ shoes. I’ve never really
wondered what it felt like to have almost strangers talk so clinically and cold
about my child. I mean, Max has a number of medical specialists and their talk
is clinical. This should be just the same, right?</div>
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<br /></div>
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Wrong. I don’t really know why,
but it’s uncomfortable and at times, upsetting. </div>
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I think there are a few things at
play here. First, even for Max’s heart failure and subsequent heart surgery we
were never visited by more than two physicians at any one time. Four therapists
/ educators attended Max’s IEP meeting. They sat together at one end of the
table while Sean, Max’s early intervention case leader and I sat at the other.
It felt a little like a face-off. Second, all that medical stuff—heart, ears,
throat, eyes—it’s got nothing to do with me. What I mean is, nobody could ever
accuse me of making any of it any worse. Well, I suppose in theory they could
but I have no doubts of any kind that we did everything exactly as we should
have. But having what amounts to a panel of experts talk about all of Max’s
developmental deficiencies starts my own insecurities bubbling up and I wonder
if any of them think we aren’t doing everything we should be doing. Maybe they
think—and maybe they’re right—Max would be talking, for example, if we had
worked harder at it for the last three years. </div>
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I can’t continue down that path,
though, because it’ll make me nuts. Parenthood brings with it enough guilt as
it is. I really can’t add any more to it. </div>
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So, back to the meeting. That
Friday morning we spent the better part of an hour discussing the various
evaluations the school performed in anticipation of the IEP. Here are the
results, in a nutshell:</div>
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<i>Gross motor:</i> Max is around the
18-month mark having begun to walk less than a year ago. <span style="mso-spacerun: yes;"> </span>Not bad.</div>
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<i>Fine motor: </i>As I’ve indicated in
previous posts, this is Max’s strength. He tested at 22-24 months. I think
that’s great. </div>
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<i>Cognitive:</i> 12 months. Considered
“very poor.” Whoa. Okay. Mentally, Max is one year of age. Really? Hmm. That’s
gonna take some time to digest. </div>
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<i>Social-emotional:</i> 9 months. Also
“very poor.” What? I don’t even know what to say that. </div>
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It’s hard to hear and see those
results, especially when we see Max for all the awesome things he can do. But
that’s just it. We compare Max to Max and every day he wins. The school,
though, compares Max to the general population. With that as the standard
there’s no wonder all they see are his deficiencies. As understandable as that
may be, I didn’t like that focus. It made me feel…bad.</div>
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Finally, as we closed in on the
hour mark, we discussed the IEP. Here’s what the school proposes:</div>
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Max will attend preschool five
days per week from 1:00 – 3:30. He’ll be placed in a non-integrated classroom
with about five other students. He’ll receive PT twice per week and OT once per
week. Both will take place within his classroom. The speech therapist will pull
him out for one-to-one sessions three times per week. His teachers will put
special emphasis on teaching him classroom routines like hanging his own jacket
on a hook and lining up to go outside. </div>
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We’re a week and a half out from
the meeting and I’m feeling good about the outcome. I didn’t at first, though.
Max spends a few full days at daycare every week. He can handle the time, but
his classroom is small. However, to my knowledge all of the little ones in his
daycare classroom are typically developing and I think the exposure has been
tremendous, motivating Max to achieve independent locomotion. </div>
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We were hoping he’d be in an
integrated classroom, but after learning there are about 20 other students
between the ages of three and five, we’ve come to the conclusion that the more
intimate environment suits Max a bit better. Crowds overwhelm him. Sometimes he
shuts down. <span style="mso-spacerun: yes;"> </span>His afternoons will be
far more productive if he remains comfortable enough to engage in the
activities. </div>
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And now we have a preschooler.
Neat.</div>
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Amyhttp://www.blogger.com/profile/11670587811473082399noreply@blogger.com1