tag:blogger.com,1999:blog-8562344290530062462024-03-12T17:01:49.692-07:00[EXTRA]ordinary Friends[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-856234429053006246.post-83648170688186898532016-09-18T18:17:00.001-07:002016-09-18T18:17:15.400-07:00Kindergarten: Chapter OneWe did it. <div>
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We started Kindergarten. Although we are in a school where K and Pre-K are in the same room so he didn't have a very big transition (same teacher, too)...but the full day has really put a strain on him. It's been a rather successful few weeks all things considered. </div>
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But it's an uphill battle sometimes. We are starting to see some intermittent behaviors rising up in Wyatt. In many ways it's completely developmentally appropriate for Wyatt to be finding his voice, having his opinions and his likes and dislikes. It's just that sometimes those "feelings" are shared through grunts and screams rather than actual words. He's quite <i>capable</i> of using words to say he's happy or mad, or even ask for something he wants ("<i>watch iPad, Monnie</i>") is quite clear). But when he's frustrated, he bypasses that and sometimes goes straight to pouting. He shook his fists at me and stomped his foot the other day and it was so adorable that it took all my power not to laugh. </div>
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But, let me tell you...the BUCK. STOPS. HERE. Well, at least we are trying to stop it. It's so very important with our kiddos that when you see these kinds of behaviors arise, there is a quick plan in place to address them AND guide them. If we let this grunting and yelling go on too long, we might be staring at a 15 year old throwing an epic tantrum wondering what in <i>tarnation</i> happened. Maybe it's my incessant want for Wyatt to be successful, or my current fear that he's going to do something that will get him an invitation straight into a "different" kind of classroom (yes, I worry about <i>everything</i> ahead of schedule...working on that) at school. However, the crux of it is that I want him to be able to be that awesome, independent kid who has likes and dislikes and is able to voice his opinions and preferences. We are THRILLED that he has a "voice" and we want to foster that the correct way. Wyatt just may need a little more guidance and structure to get there. </div>
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So BRING IT, Kindergarten. We are ready!</div>
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-31742584813103186672016-05-04T07:46:00.001-07:002016-05-04T08:33:41.860-07:00Friendship Well hello there stranger!<br />
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You may have been wondering where I've been. Maybe not. You might not have even noticed I was gone for a while. You see, life got a little busy the last year and a half. We added a whole other person to our family and I suppose I was too busy to hear my own thoughts or sit long enough to write them down. But I want to keep this going, truly so here we go...again. Writing is cathartic for me but also an exciting part of my life. Life is complicated and beautiful and one of the great hallmark's of who we are as humans is friendships.<br />
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Friendships are complex. They bring joy, frustration, satisfaction and sometimes heartache. It's so important to foster and have friendships. That got me thinking...what about people with disabilities?<br />
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I'm sure the subject of Friendship has loooooong been on the mind of every parent who has had a child with a disability. I, for one, absolutely long for Wyatt to have valid, supportive, positive and <i>genuine</i> friendships when he gets older (not really all that different of a hope for either of my girls). But will all of Wyatt's friendships be true and genuine? Will people befriend him just because they feel "sorry" for him or because they want to make themselves feel better? Maybe, but I hope there are so many other friendship opportunities, too. Will he be able to reciprocate friendships and know how to be a good friend? I absolutely think he will be! He already is The Great Protector of his baby sister, covering corners of furniture when she gets close, pulling things out of her hands that she shouldn't have and blocking her from crawling into spaces she shouldn't go. So at 5, he already understands a great piece of friendship...protection. We all try and protect and stick up for our friends, don't we?<br />
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I think I'm not so worried about the childhood friendships that ebb and flow as we grow (there are a myriad of kids who have been termed "Wyatt's posse" at his school who totally have his back...it's awesome). But it's the friendships as adults that get more complex and it makes me wonder if those kids who love him now will continue to actively be his friend when he gets older. I also hope that Wyatt doesn't just have friendships with individuals with disabilities, but with people without disabilities as well. And for that to happen, we ALL sometimes have to be purposeful regarding our friendships with others. So I wondered...am I doing that? Am I purposefully seeking out others who are different that I am to foster relationships? Unfortunately the answer for me was no. I don't actively seek or pursue friendships with adult individuals with disabilities like I should. That one kinda hurt my heart. So I'm taking steps to change that. I'm inviting a woman who I know and <i>genuinely</i> enjoy being around, who has a disability and is my same age, to the movies. Not to brag or boast, but because I think she's awesome. And I want to be around her. And I think she's a beautiful person. I intend on fostering that friendship and taking purposeful steps to be her true friend.<br />
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Advocating for inclusion and disability rights is SO important, but as adults....are we really living it? And if you answer "no" to that question like I did, and are disappointed in that answer...then I encourage you to take one step to change that. It may change your life...and someone else's too.<br />
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And here...there's five of us now : )<br />
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-37219824425800076062014-08-27T20:14:00.000-07:002014-08-27T20:33:54.253-07:00Return of the Writer: The Pre-School Diaries (To Mom's with Infants with DS)I realized today that it has been nearly 9 months since I have written. How is that even possible?!?! Life sometimes happens and gets in the way of me carving out time to organize my thoughts via the written word. And that's OK.<br />
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But today is special. So I figured it was as good a time as any to revive my Blog.<br />
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Why is today special? Because today...today, Wyatt started pre-school.<br />
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I heard a news story this morning that said more parents cry on the first day of school than kids. And today, this was 100% accurate! I cried last night packing Wyatt's backpack. I cried looking at all the FB posts of my other [EXTRA]ordinary friends' kids going to school. I cried looking at pictures of my little guy sent to me by my Mom, because I could not take him myself today.<br />
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As much as I prepared for this day, the day itself was both uneventful and amazing. From prior IEP and teacher meetings, to the sign language PDFs and the 'All About Wyatt' documents I sent and the multiple phone calls with his teacher...today ended up being just another typical day in the life of a pre-schooler. He was swept up by his teacher, and led into class to start the day.<br />
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AND THAT WAS THAT.<br />
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We are so fortunate to be in a school that (for the most part) includes kids with disabilities in the general education pre-school/kindergarten class. We participate in a Montessori school that was recommended by been-there-done-that Ds Mamas.<br />
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As the day forged on, I realized that this wasn't a culmination of the summer prep that I did, but rather the amazing result of the MAIN GOAL we have been working towards since Wyatt's birth. Whoa! We have worked hard to get him to this day! Some days, I wanted to give up or thought it wasnt worth all the therapy. I'm glad I (mostly) ignored those thoughts!<br />
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And so I say to all those Moms out there with new babies or infants who are working their proverbial arses off in therapy to get their kids to school...listen here: IT IS ALL WORTH IT!<br />
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There are days, weeks...and maybe even months where you will second guess, doubt and question yourself as to whether or not this or that is working. Question if you are doing too much or too little. Question if you are teaching the "right thing" or if you should just give it all up for a moment.<br />
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I'm here to tell you...KEEP GOING because you WILL see the fruits of your labor!<br />
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My Wyatt went to school today and worked LIKE A BOSS (thanks, <a href="http://www.crossroads.net/my/media/messages.php#208" target="_blank">Crossroads Church</a>). I know we will likely have a few hills, and maybe mountains, ahead of us. But today was golden...He was following directions, working hard and standing shoulder-to-shoulder with his peers.<br />
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There is a small group of people that worked [EXTRA]ordinarily hard to make this happen (I already called you out on FB) and also a HUGE group of [EXTRA]ordinary friends who have lent support emotionally, strategically and have more than once talked me off my own ledge. I can never repay these people. But I am eternally gratefull for all they have done. Today is a success.<br />
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GO GET 'EM WYATT!<br />
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-83990107128263071282013-10-03T18:53:00.002-07:002013-10-03T19:36:52.112-07:00THE Moment: Oct. is Down Syndrome Awareness MonthOctober is Down syndrome awareness month. Many people are blogging daily this month and I applaud their efforts! I, however, am not in that place (time-wise) where I can do that. Additionally, I have sorely ignored my Blog for a few months now. But I do have something to offer about Down syndrome awareness.<br />
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There are so many things that I could address here, but I'm going to choose just one: THE moment.<br />
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What is that moment? Well, technically there are many of these moments. What I want you to be aware of now is that there is a moment I experience over and over and over again. The moment is surreal and grounded at the same time. The moment is earthly present and heavenly. The moment is fleeting and forever.<br />
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The moment is the time when I know, without a doubt, that Wyatt was perfectly and wonderfully made to be my child, just as he is. That moment is where I drink in his perfection and wonderfulness and forget about all the therapy, what the world thinks perfection is, what others say about his possible future and all the other negative things people can say. And, in that moment, in these many recurring moments, all is right with the world.<br />
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This moment happens almost daily. It often occurs when I'm putting Wyatt to bed and I give him one last hug and kiss before bed. It is the moment where I embrace him with all that I have and he embraces me, putting his sweet, chubby cheek right next to mine. He smells of a fresh bath and clean jammies. His room illuminated by the stars on the ceiling from his dream light. The hum of his fan quietly expelling a soothing hum. Then, I tell him how much I love him and I know, like I have never known anything before, that he was meant to be ours. I know that I don't care about anything else right now other than being right there. I know that the connection and relationship we have is greater than anything I ever could have imagined. I know that I love him perfectly and wonderfully, just as God loves me. I know everything is just fine and I'm doing it all right. That moment is pure perfection, pure joy, pure peace.<br />
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I want you to know about this moment because we are not all that different from you. We love our children. We are grateful for them. We have those perfect moments. There is another Blog out there that touts something like "we are not sad or depressed or..." And you know what? Neither are we. Yes, we have our daily struggles. But we are just thankful, and grateful, and happy to have Wyatt as a part of our family. I am happy that I get to experience perfection and love through my absolutely amazing and perfectly made Wyatt. <br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-DuPhJSMGT4M/Uk4fWZi_3GI/AAAAAAAAATo/NAvUSOHMAVY/s1600/wyatt2013Truck.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-DuPhJSMGT4M/Uk4fWZi_3GI/AAAAAAAAATo/NAvUSOHMAVY/s1600/wyatt2013Truck.jpg" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What's more perfect that a boy and his truck?</td></tr>
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com2tag:blogger.com,1999:blog-856234429053006246.post-31004877146244185122013-08-06T20:07:00.001-07:002013-08-06T20:07:26.782-07:00Gross Motor for a Two-Year-Old BOY!Wyatt is turning out to be a boy.<br />
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Shocking, I know since he is, in fact a...BOY.<br />
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But for this Mom who had a girl first, it is a new territory.<br />
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About a year ago, my sister gave me a stern, tongue-in-cheek warning: boys are different than girls. I thought to myself "yeah, right, they can't be <i>that </i>different."<br />
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And, admittedly, I also had the thought rolling around in my head that, because of Wyatt having Down syndrome, that "boy" side would not be all that pronounced. My sister, just like me, had a girl first, then a boy (and subsequently another amazing little girl, Piper who is almost 9 months old now. We call her Sweet P, and boy do I adore her!!).<br />
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I should have silenced the voices in my head and listened to my sister. He is soooooo boy. <br />
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There are certain things that you realize you never have said before to your child when you have a boy after having a girl. Things like...<br />
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"Stop scratching your behind."<br />
"Don't put your hands down your pants."<br />
"Please stop throwing [the remote, the baby doll, the toothbrush, your food, the car...]"<br />
"Stop ramming the truck into the wall, chair, your sister..."<br />
"It's not polite to play with your..."<br />
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So what does this have to do with gross motor for a boy with Down syndrome?<br />
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I realized one day when I was playing at the park with my kids that Wyatt is becoming a"typical" boy and he loves to MOVE! Just like so many other boys!<br />
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I was kind of avoiding the playgrounds because I thought that, since Wyatt was not walking like a "typical" two-year-old, the playground would be too much for him. Oh how wrong I was! I really regret not talking him and letting him loose sooner! <br />
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He absolutely loves the playground and park. He was using the spokes on the handrails to walk himself up and down inclines (awesome PT). He was letting go and walking himself to and from different steering wheels and other moving parts of the playground. He was sliding (and signing) down the slides (head first and loving it)! He was climbing up a five foot rock wall - getting to the top, face beaming with pride! He rode a pink pig (holding on and rocking - which I wasn't sure he could do), played and swung like a champ (which he has been doing for a while.)<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-ux4tkLD-N_w/UgG3iehmy-I/AAAAAAAAATA/VKGlNxyrdNU/s1600/Wyatt_Pig_ride.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://3.bp.blogspot.com/-ux4tkLD-N_w/UgG3iehmy-I/AAAAAAAAATA/VKGlNxyrdNU/s640/Wyatt_Pig_ride.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Who doesn't love riding a retro Pink Pig?</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-8u5wEwEGGB4/UgG3l2W08HI/AAAAAAAAATI/psoR1ulwd00/s1600/Wyatt_2_playground.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://2.bp.blogspot.com/-8u5wEwEGGB4/UgG3l2W08HI/AAAAAAAAATI/psoR1ulwd00/s640/Wyatt_2_playground.jpg" width="442" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at me! I'm suck a big boy!</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-3aW8y_Urx_0/UgG3q-yQ_1I/AAAAAAAAATQ/djFU_OFZGY0/s1600/Wyatt_Eden_swings.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="490" src="http://2.bp.blogspot.com/-3aW8y_Urx_0/UgG3q-yQ_1I/AAAAAAAAATQ/djFU_OFZGY0/s640/Wyatt_Eden_swings.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eden and Wyatt swinging - perfect happiness at it's finest. </td></tr>
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[TIP: Put your child side ways in the infant swing and swing them. This can stimulate the ear follicles and encourage body awareness and balance.]<br />
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I realized again that I should not limit my son. A consistent lesson over these two and a half years. He is capable of so many things! Some days I am protective, but I know that protecting him will only limit him.<br />
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The other day at the playground, he was with Josh and fell on the steps. He scraped part of his eyeborw and eyelid. He fussed for a minute and went right back to playing, like it was nothing. Whatta boy!<br />
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I write this to remind others that we should continue to include our children in everyday activities. Sometimes we forget that (even this Special Ed teacher). My advice? Go for it! Let them rule the playground and be a boy...or a girl! You'll get a great gross motor PT session out of it and you may just realize your child can do more than you thought. <br />
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I'll keep visiting the playground. But, in the meantime, I'll be picking up every toy we have from Wyatt throwing it, watching him play with his trucks and repeatedly telling him to take his hands out of his pants. : )<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-uJDscQZ0sOY/UgG3u2ujlQI/AAAAAAAAATc/RpWXgd1b1QU/s1600/Wyatt_Truck.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://4.bp.blogspot.com/-uJDscQZ0sOY/UgG3u2ujlQI/AAAAAAAAATc/RpWXgd1b1QU/s640/Wyatt_Truck.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a boy and his truck</td></tr>
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com2tag:blogger.com,1999:blog-856234429053006246.post-37590103104023105242013-07-19T13:28:00.004-07:002013-07-19T13:28:48.801-07:00Breaks are Good (Update with photos!)Wow, I haven't written in over a month!<br />
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Shocking that I haven't had so much on my mind that life required a mandatory expression via the written word. Not that there hasn't been a lot going on - quite the contrary. But I think my mind has relaxed a bit since I began my first true summer break as a teacher. <br />
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And let me tell you: It's AWESOME. <br />
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No, really. The word amazeballs comes to mind. <br />
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I'm not trying to gloat...really...it's just that I was completely exhausted at the end of the school year. I have really missed my kids. I REALLY missed sleep. And I very much missed summer fun. I've been sleeping about 8 or so hours a night, which for me is completely unheard of. I am feeling so much better. I had a crazy three years of Grad school, Wyatt's birth and the death of my father. This past year was spent getting into my new job, and honeslty processing everything that had happened. I gained about 20 pounds in the process. I have finally given myself permisson to STOP and enjoy each and every day and start to focus on a more healthy lifestyle again. <br />
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In June, first Wyatt had his second set of ear tubes 'installed' and he did great!<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-ltU9OAJ5XEY/UemcW3r4ONI/AAAAAAAAARg/Qt0PaMAlzoQ/s1600/Wyatt_Surgery_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-ltU9OAJ5XEY/UemcW3r4ONI/AAAAAAAAARg/Qt0PaMAlzoQ/s1600/Wyatt_Surgery_2013.jpg" height="640" iya="true" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wyatt (with Daddy) getting ready for surgery</td></tr>
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Then, we went on vacation to Tampa to visit my incredible sister-in-law and her husband (whom I call my brother-out-law!), we went to the beach and to Disney for a day, just with Eden (an awesome last-minute opportunity, but Wyatt stayed back with Uncle Keith) and saw other family along the way. <br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-7RyIJSFiTgM/Ueme2mo-6RI/AAAAAAAAARw/Lrw_HPc6BwE/s1600/Epcot_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-7RyIJSFiTgM/Ueme2mo-6RI/AAAAAAAAARw/Lrw_HPc6BwE/s1600/Epcot_2013.jpg" height="480" iya="true" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Epcot - Just before Fireworks!</td></tr>
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I am now spending my days toggling between hitting the pool, visiting the zoo, catching up on laundry and the house, and having relaxation days where we watch multiple movies in a day and never change out of our PJs. We eat blueberry waffles and bacon, then go visit my mother to raid her fresh vegetable garden. Oh, and I sneak in making some killer cupcakes! (OK, so bacon and cupcakes aren't healthy, but hey, old habits...)<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-7FcSnV6I3Y0/UemfAWLdyMI/AAAAAAAAAR4/FVzKuuc_js8/s1600/Pool_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-7FcSnV6I3Y0/UemfAWLdyMI/AAAAAAAAAR4/FVzKuuc_js8/s1600/Pool_2013.jpg" height="480" iya="true" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ahhhh....Poolside!</td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-TDRmFuiw9sU/UemfF0vjRKI/AAAAAAAAASA/WOL07XBbEcA/s1600/Zoo_Train_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-TDRmFuiw9sU/UemfF0vjRKI/AAAAAAAAASA/WOL07XBbEcA/s1600/Zoo_Train_2013.jpg" height="640" iya="true" width="446" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Riding the Train and the Cincinnati Zoo</td></tr>
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<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://1.bp.blogspot.com/-5BN3Yyy8quA/UemfNjHUEoI/AAAAAAAAASI/EhZKxoqjpqY/s1600/Summer_Chairs_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-5BN3Yyy8quA/UemfNjHUEoI/AAAAAAAAASI/EhZKxoqjpqY/s1600/Summer_Chairs_2013.jpg" height="480" iya="true" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Summer Chairs</td></tr>
</tbody></table>
<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://1.bp.blogspot.com/-P-M5EfUX2So/UemfUVR9y-I/AAAAAAAAASQ/_dlzXx17p-I/s1600/Cupcake.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-P-M5EfUX2So/UemfUVR9y-I/AAAAAAAAASQ/_dlzXx17p-I/s1600/Cupcake.jpg" height="640" iya="true" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">THE cupcakes!</td></tr>
</tbody></table>
<br /><br />
I have tried very, very hard to shut off my mind this last month and really focus on resting and doing purposeful things with my kids. (Well, that and I watched the first three seasons of Game of Thrones...) I wanted to stop and smell the proverbial roses. And I think I'm doing a pretty good job. We are busy, but we are mostly busy having fun. <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/-J8kLN9vPhQQ/UemfgES5kTI/AAAAAAAAASY/e_tq-Grg2Ew/s1600/FourthofJuly_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-J8kLN9vPhQQ/UemfgES5kTI/AAAAAAAAASY/e_tq-Grg2Ew/s1600/FourthofJuly_2013.jpg" height="480" iya="true" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A very hot Fourth of July, but it was a great evening with my little Family!</td></tr>
</tbody></table>
<br />
<br />
I have even stopped worrying so much about Wyatt walking. <br />
<br />
And on that note...the boy is taking about 10 steps independently! He has stood himself up in the middle of the room a number of times and we are well on our way. Many times I see other kids with Ds his age who are totally mobile, but I try and just focus on what Wyatt is doing and not what other kids are doing. He is my love, my sunshine, my Dr. Destructo, my stinker (who wants to throw everything). He is bright, funny and doing amazing.<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/-yxC8lDWDjXE/UemfrwbqG4I/AAAAAAAAASg/d6l0gCGoVk4/s1600/Wyatt_mattie_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-yxC8lDWDjXE/UemfrwbqG4I/AAAAAAAAASg/d6l0gCGoVk4/s1600/Wyatt_mattie_2013.jpg" height="640" iya="true" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My super handsome little man Wyatt with his favorite dog - my Mom's dog, Mattie!</td></tr>
</tbody></table>
<br /><br />
Eden is also well on her way to being a young lady (testing my patience daily, but really I wouldn't have it any other way). We are working on getting her started in Kindergarten. She is a great helper, when she listens, and a little Mommy already. Love her. <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://4.bp.blogspot.com/-08ZqTU6am3I/UemgJc6hfHI/AAAAAAAAASs/iVWjg8fzoJM/s1600/Eden_BlueEyes_2013.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-08ZqTU6am3I/UemgJc6hfHI/AAAAAAAAASs/iVWjg8fzoJM/s1600/Eden_BlueEyes_2013.jpg" height="460" iya="true" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My beautiful Eden</td></tr>
</tbody></table>
<br /><br />
All in all, breaks are good. They restore you, they offer a fresh perspective and they allow you to slow down and just simply...live. <br />
<br />
I am very thankful that I am able to have this break. Not that things are perfect. We still have stress and things to worry about, and my house still needs LOTS of work...but this break was SO needed. Worries will still be there, but time with my kids at this age is fleeting. I feel like I am resting, enjoying my family, and taking a break to jump back in and give my all at work in August. <br />
<br />
But right now, I'm giving my all to fun and rest. <br />
<br />
Whether it's three days, three weeks or three months. I hope you take time to rest, enjoy life and have lots and lots of fun![REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com3tag:blogger.com,1999:blog-856234429053006246.post-62808338976527194352013-06-08T20:40:00.001-07:002013-06-08T20:41:28.226-07:00Therapy Ebs and FlowsRecently, Wyatt's Physical Therapist told me that she thinks he will be discharged from PT by the end of the summer.<br />
<br />
This was exciting news for me. For one, discharge essentially means that his delays are no longer significant enough to require therapy. Our biggest focus has been getting Wyatt to walk. He sees PT at Cincinnati Children's Hospital Medical Center - CCHMC - (through the Thomas Center for Down Syndrome) right now every other week, and recently we have added PT from our Early Intervention Services (provided by the State and Hamilton County, which are "free" to us) every other week on the off weeks from CCHMC.<br />
<br />
Let me back track for a moment.<br />
<br />
Wyatt did not sit until he was almost a year. At seven months, he was starting to try and sit, then we passed eight months, then nine, ten, then eleven...and no independent sitting. He was thisclose to doing it for months, yet it just wasn't happening. He finally sat, completely independent, right around his first birthday. We rejoiced!<br />
<br />
The physical part of his development wasn't as provocative as his social development (he really is a social genius). However, his physical development has been fast and slow at the same time. Seeing fast growth in a months time, then waiting for weeks, or months for another notable milestone. We started to see ebs and flows from an early age. The ebs are when we see significant gains in one area in a certain amount of time. the flows are when we just wait. The progress is noted for a variable amount of time and then, well...nothing sometimes. Like I said, for months in some cases.<br />
<br />
Walking has been a similar experience.<br />
<br />
Wyatt started 'wanting' to walk at about 14 months. He was pulling up, holding my hands and trying to take steps. I was thrilled to see these pre-walking skills so early, as I had heard that they sometimes don't emerge in "our" kiddos for quite some time. And to be honest, it was awesome when Wyatt would 'show off' these skills and other parents would 'ooh and ahh' over his early progress. I was excited. But that soon waned.<br />
<br />
For those who have experienced a "typical" child, these developmental cues mean walking is within your grasp. You'll see precursors to walking skills and, all of of sudden, one day *poof* they walk. But with Wyatt, those skills eb and flow. They show up one day and then they just plateau. And we never know when, or if, they will re-emerge.<br />
<br />
Research and therapists say that a child with developmental challenges (and even without) often only focus on one skill at a time. Where you have a lag, or plateau of progress in one area, sometimes you see a big growth in another. For Wyatt, even-though we have seen slower progress in walking, we have seen absolutely astonishing growth (IMHO) in communication.We have gone from Wyatt only having about 5 signs (ASL signing) in December, to him having around 30+ signs to date. I'm running out of signs I know to teach him. His receptive (what he understands) language is amazing, and his expressive (what he communicates) grows by the day. And his disposition is a dream (we had a therapist ask us 'is he always this good?' To which the answer was yes...he is AWESOME.)<br />
<br />
So with all of this, here we sit, at almost 28 months old, and Wyatt is not walking independently. He recently took SEVEN independent steps at an evaluation at Cincinnati Childrens Hospital. That was amazing (and awesome that my Mom got to see it!). But we are still waiting and hoping for that day where he stands up, looks at us and independently walks to us.<br />
<br />
I know it will happen. I know I should be patient. I almost hear me talking myself into it. And one day, walking frustrations will be as much of a distant memory as sitting was. But for now, we just wait and take these ebs and flows, of therapy and milestones, one accomplishment and day at a time. [REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-30636618889026066922013-05-23T19:41:00.001-07:002013-05-23T20:00:28.511-07:00May Mom of the Month: Meet Monica!<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;">When I first met Monica, we were at a three part symposium offered by Cincinnati Children's Hospital. Specialists from the <a href="http://www.cincinnatichildrens.org/service/t/down-syndrome/default/" target="_blank">Thomas Center for Down Syndrome</a> offered a three part group session on major aspects of therapy for children with Ds. The sessions were all for kids under the age of three for feeding, speech and walking. She was quiet at first, but I noticed her intense focus, even then. </span></span></div>
<div class="" style="font-family: inherit;">
<br /></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;">To be honest, I don't really remember the moment I realized that we would be friends. But I do remember that I had immediate respect for her. Since then, I have gotten to know Monica much better. She is smart, politically astute, has a killer dry (read: awesome) sense of humor. She is a serious force. I think the fact that we both have boys (a minority in our Mom's group from my perspective) is part of our special bond. She is married to a pretty cool cat, Alan, who sits on the DSAGC board (of which I hope to join next year). And Harrison, her son is absolutely adorable!</span></span></div>
<div class="" style="font-family: inherit;">
<br /></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;">At one of our last Mom night out's, she made a comment that has really resonated with me. She said something to the effect of "well, you are all now stuck with me for the rest of our lives." </span></span></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><br /></span></span></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;">Monica, my friend, if I had to be stuck with someone...you'd certainly be on my list! I'm proud to call you my friend. You are beautiful, encouraging and witty as hell. </span></span></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><br /></span></span></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><u>First Name</u>: </span></span></div>
<div class="" style="font-family: inherit;">
<br /></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;">Monica</span></span></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><br /></span></span></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><u>Children</u>:</span></span></div>
<div class="" style="font-family: inherit;">
<br /></div>
<div class="" style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;">Harrison, 18 months, is our one and only (for now!). He loves bananas, crackers, music, and speed reading books. </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"> </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><u>Do you work
or volunteer</u>? </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"> </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">I've just finished my 6th year as a faculty member at Miami in the Political Science department. </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">[I like to call her The Professor!]</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">
</span><div>
<div dir="ltr">
<div class="">
<span style="font-size: small;"><span style="line-height: 115%;"><u>How many
years have you been involved with the Eastside and Extraordinary Friends Mom’s
group</u>?</span></span></div>
</div>
</div>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">About a year. </span>
<span style="font-size: small;"><span style="line-height: 115%;"> </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"> </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><u>Why you like
being a part of this group</u>?</span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"> </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">So
many reasons: #1 - support. #2 - a place to ask questions. #3 - I like
imagining our kids growing up together, living together, getting
married, going to school and working together, and generally just being
friends for the rest of their lives.</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span><div>
<div dir="ltr">
<div class="">
<span style="font-size: small;"><span style="line-height: 115%;"><u>Best advice
for new parents of a child with T21</u>:</span></span></div>
</div>
</div>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">Take
one day and one thing at a time. (Advice given to me in the hospital by
our pediatrician when Harrison & Alan were in the NICU and I was
still at Bethesda North). </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span><div>
<div dir="ltr">
<div class="">
<span style="font-size: small;"><span style="line-height: 115%;"><u>Greatest joy
in having a child with T21</u>:</span></span></div>
<div class="">
<br /></div>
</div>
</div>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;">#1:
The giggles. #2: Seeing him work so hard and achieve every milestone.
Sure, you could live in San Diego with perfect weather, but nothing
beats a spring day in Minnesota after a long winter. #3: Becoming more
open-minded, sensitive, and caring myself. #4: <insert nice thing
about husband here - something about supportive, amazing, accepting,
true partner. Seriously, I can't find the words>.</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span><div>
<div dir="ltr">
<div class="">
<span style="font-size: small;"><span style="line-height: 115%;"><u>What is one
thing you’ve learned personally from your journey that you would like to share
with other [EXTRA]ordinary Friends</u>?</span></span></div>
<div class="">
<br /></div>
</div>
</div>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;">I've
learned how to redefine what "smart" means. As a (somewhat) snobby
intellectual, I've struggled with this the most. But I see an
intelligence and joy in my son that is far greater than the smartest PhD
I've ever known!</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">[This comment is humorous to me! Monica is about the furthest thing from "snobby" I've ever seen!] </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span><div>
<div dir="ltr">
<div class="">
<span style="font-size: small;"><span style="line-height: 115%;"><u>Favorite
Therapy Trick/Tool</u>:</span></span></div>
<div class="">
<br /></div>
</div>
</div>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;">My favorite
therapy tool is persistence and patience. We tried SO hard to get
Harrison to sign milk. We did hand-over-hand signing. We made a book of
pictures of his bottle and jugs of milk and showed them to him with the
sign. The he started signing more. He signed duck, bear, cracker,
ball... everything BUT milk. Then one day he started sort-of signing
milk but he wasn't doing it consistently. I brought that picture book
out and he saw the picture and signed milk like he had been signing it
his whole life. Stinker.</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"> </span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><u>What is your favorite hobby and why</u>?</span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><span style="line-height: 115%;"><br /></span></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">I
love to work out. It clears my head. It makes a good day better and a
bad day bearable. Especially when Harrison was first born, biking was
the only thing that helped me escape from the shock of his diagnosis.
Reading and watching good movies/TV are other favorites.</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span><div dir="ltr">
<div class="">
<span style="font-size: small;"><span style="line-height: 115%;"><u>If you feel like it’s not too
personal, can you share your diagnosis story</u>?</span></span></div>
<div class="">
<br /></div>
</div>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;">(The following is an excerpt from Monica's birth story)</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span></div>
<span style="font-family: inherit; font-size: small;">After
he came out, (around 8:55AM) they put him on me along with a million
warm blankets. He pooped all over me. I got to hold him for a while
(not sure how long). They cleaned Harrison up and gave him to Alan. And
that's when the doctor (our OB) came in and told us that he thought
Harrison had Down Syndrome. At first I wanted to believe that he might
be wrong, but I looked at Alan and we both knew he was right. I tried
to do a little breastfeeding with the doula's help and the nurse said
she didn't like his color. The pediatrician came and looked at him,
told us he was 80% sure he had Down Syndrome, and that he was
transferring him to the special care unit because he was having trouble
breathing. Alan went with him and I stayed until things got cleaned up
and they let me go up there in a wheelchair. When I got there, we
couldn't hold him or touch him. This was around 11 and we hadn't called
anyone yet or even had a moment to ourselves. There was a room next to
his where we sat and talked. We didn't get good cell reception in
there, so we finally decided to go down to my room, get lunch, call
people and then go back to be with Harrison. <br /></span>
<div style="font-family: inherit;">
<span style="font-size: small;">It
always feels like nothing happens in the hospital and then all of a
sudden there are tons of people around. Alan went to go get lunch, the
nurse comes in to help me pee and the lactation consultant arrives just
as the pediatrician comes in to tell me that he was transferring
Harrison to Children's Hospital in 45 minutes. We went up to sit with
him and see him off. Alan left to be with him and his sister Elisa and
Alan's parents arrived to be with me. They left around dinner time and
Alan came back at around 9 PM to spend the night with me. I was
released the next morning (thank goodness I was in such good shape - I
had a 100% natural delivery - and was able to be released so quickly)
and we headed in to [Cincinnati] Children's Hospital. </span>
</div>
<div style="font-family: inherit;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">Our prenatal quad test showed 1/2100 chance of him having DS. In retrospect, I was in shock. </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"><br /></span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">But
I want to end on a positive note. Harrison is a beautiful little boy
who brings tons of joy into my life. I have been forever changed for the
better, I think. Thank you all for being along for this crazy ride.</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">----</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span></div>
<div style="font-family: inherit;">
<span style="font-size: small;">Thank you, Monica for choosing to be a part of our group. I look forward to growing our friendship for years to come!</span></div>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span></div>
<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://1.bp.blogspot.com/-PLDFamwx0Os/UZ7SVoqGrtI/AAAAAAAAAQ0/j2-KZnfrcbI/s1600/Monica_Fam.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="468" src="http://1.bp.blogspot.com/-PLDFamwx0Os/UZ7SVoqGrtI/AAAAAAAAAQ0/j2-KZnfrcbI/s640/Monica_Fam.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How adorable is this family?!</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://2.bp.blogspot.com/-nwE_xRNAZow/UZ7SZN3dZMI/AAAAAAAAAQ8/yGlf2_z9j50/s1600/Monica_HBW.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="468" src="http://2.bp.blogspot.com/-nwE_xRNAZow/UZ7SZN3dZMI/AAAAAAAAAQ8/yGlf2_z9j50/s640/Monica_HBW.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Don't think I need a caption here...</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://2.bp.blogspot.com/-Y9nqWzWni3c/UZ7ScZEUGTI/AAAAAAAAARE/5k5Bq7sr3ps/s1600/Monica_H.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="534" src="http://2.bp.blogspot.com/-Y9nqWzWni3c/UZ7ScZEUGTI/AAAAAAAAARE/5k5Bq7sr3ps/s640/Monica_H.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">True life love!</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://2.bp.blogspot.com/-uJ-otAFHexI/UZ7SgIVoAOI/AAAAAAAAARM/RO2mqEF5QBQ/s1600/HarrisonMObama.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="http://2.bp.blogspot.com/-uJ-otAFHexI/UZ7SgIVoAOI/AAAAAAAAARM/RO2mqEF5QBQ/s640/HarrisonMObama.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes, this is Michelle Obama holding Harrison (with an elated Monica far right). Cool, no matter your political stance.</td></tr>
</tbody></table>
<div style="font-family: inherit;">
<span style="font-size: small;"> </span></div>
[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com1tag:blogger.com,1999:blog-856234429053006246.post-43782588261467933722013-04-30T19:02:00.000-07:002013-05-01T07:44:17.146-07:00Ableism<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Courier New", Courier, monospace;">Do you practice Ableism?</span></div>
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<span style="font-family: "Courier New", Courier, monospace;">What the heck is that, you might ask? Ableism is discrimination against people who are disabled, according to the dictionary. <o:p></o:p></span></div>
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<span style="font-family: "Courier New", Courier, monospace;">A woman (who I only know "virtually") in one of my writing circles recently wrote an article for the New York Times blog, <i>Motherlode</i>, regarding abortion rights for women. Specifically she wrote about the fact that “North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome.” (Citiation and full article <a href="http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/" target="_blank">HERE</a>)</span></div>
<span style="font-family: "Courier New", Courier, monospace;">In the close of the article, she talks about how we should “make it a world [that expectant parents] would like to bring a child into — even a child with an intellectual disability.”</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">She closed with this because people she had interviewed parents didn't abort necessarily because of the child with a disability, but rather how society deals with individuals who are different. They did not want to raise a child like <i>that</i> in <i>this</i> kind of world. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">A world that often expects everyone to be <i>able</i>. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">I do see the author's point about making it a world in which people want to bring children. I wish that I would never worry about people making fun of or judging Wyatt. I wish I didn't worry about people treating him like he is stupid or infantile well into adulthood. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">So, where does the Ableist perspective take us as a society? On a road to nowhere land, IMHO.</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">First, to be clear: I am not making this an abortion issue. I am making this a human issue. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">I believe that the world is full of amazing people. But, some people are not so nice and some have done unexplainablly horrific things - to people with and without disabilities. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">But to think that someone is so fearful of how a society will possibly treat a genetically different - disabled - UNBORN child that they end that child's life before it has even begun?? </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">This is a sad, sad thought. </span><br />
<br />
<span style="font-family: Courier New;">I wish things would change for the better. I wish Ableists were not in existence as much as I wish racism would be extinct. </span><br />
<br />
<span style="font-family: Courier New;">I know things won't ever be perfect because we are mankind, not God. I know that there will always be people who do bad things (<em>edited on 5/1 from a reader suggestion</em>). But I also know we can do better. Not just for people who are different, but how we simply treat others as humans. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">To change this societal norm requires a paradigm shift in societial and cultural expectations. It requires a change in the idealisms of Ableism. To say that people have value simply because they exist...well don't you think that would change the way we view one another? </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">This is something even the US Government Department of Labor within the Office of Disability Employment Policy is attempting to start doing in employment, as well as Ohio Governor Kasich (love him or hate him) is trying to do through the Ohio Department of Education and the Ohio Employment First Initiative. (Please check out the website and the vision they have <a href="http://www.ohioemploymentfirst.org/" target="_blank">HERE</a>!)</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">But I digress…back to Ableism. The comments section of the article on the NYT blog was horrific at times. People were talking about the human worth of individuals with disabilities not yet born, like it can be quantified through possible unknown outcomes, of which most of us, even "typical" people, have no control over. People were talking about aborting their babies, not because they were fearful of the child, but how they could be cared for by family or society after they - themselves - were gone. Or they discussed the burden it would place on society financially or on remaining siblings. Wow. Some even responded about how it was an atrocity that parents of a child with a disability would take county, state or federal funding to assist with extra costs. (Um, hello...unless you send you kids to your own private homeschool...your kids education has some sort of government funding, even if it is "private.")</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">Others even insinuated, basically, how we should just magically *POOF* all be perfectly ABLE. And if we are not...well then we shouldn't exist.</span><br />
<br />
<span style="font-family: Courier New;">YES, SOME PEOPLE REALLY BELIVE THIS AND THEY ARE NOT NAMED HITLER.</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">The problem is, though, that NONE of us are perfectly able. And statistically, ALL of us will, at one point or another in our lives, will become DIS-Abled. Whether it be illness, age, injury…we will all need the assistance from medical staff, family or friends at some point in our lives. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">How many of you have a grandparent or parent who has financially, fully covered all possible medical scenarios from now until death? </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">I’m guessing I’m hearing crickets.</span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">No? <o:p></o:p></span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">Or how many of you are going to take in aging parents into your home and care for them until death? Most of us will require some sort of support either through a government program, insurance or Hospice. I don’t think that there are many people ON THIS PLANET that can personally financially cover ever single medical expense from birth until death. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">Unless you’re Donald Trump or have a multi-million dollar trust, it is likely that you will need insurance, Medicare or Medicaid, Social Security (if it's still around later), employer-assisted retirement accounts, pensions or some other type of program to help you at some point in your life. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">The point here is that Ableism is not a positive perspective. We cannot count the worth of individuals by their chromosomes or any other facet. The point is that no one knows the worth or value of another human being, or can quantify that through a checklist of accomplishments, abilities and societal contributions. </span><br />
<span style="font-family: "Courier New", Courier, monospace;"><br /></span><span style="font-family: "Courier New", Courier, monospace;">I hope that people do not base Wyatt's life value on societal idealisms. I hope they don't do that to me, or to my daughter, Eden, or my husband, or....the list goes on and on. </span><br />
<span style="font-family: "Courier New", Courier, monospace;"><br /></span><span style="font-family: "Courier New", Courier, monospace;">There is little progress to be made by engineering the fittest of the fittest. Or the Ableist of the Able. </span><br />
<span style="font-family: "Courier New", Courier, monospace;"><br /></span><span style="font-family: "Courier New", Courier, monospace;">So how do we change this? Please find value in all humans. Please realize that you have strengths and weaknesses that others do or do not. Please know that we are all ABLE to do <i>something</i> incredibly well, no matter our challenges. And know that life isn't measured by what you are sometimes ABLE to do, but how you are treating others and how you are being the best person you can be to your own individual ABILITY. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">Above all...I believe we ALL are valued in the eyes of God, equally. And at the end of the day, that is all that really matters. </span><br />
<br />
<span style="font-family: "Courier New", Courier, monospace;">Peace, love and joy... </span><br />
<span style="font-family: "Courier New", Courier, monospace;"><br /></span>[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com4tag:blogger.com,1999:blog-856234429053006246.post-364018087426594812013-04-19T20:56:00.002-07:002013-05-23T20:05:47.500-07:00April [EXTRA]ordinary Mom of the Month: Meet Kathy!<div style="font-family: Georgia,"Times New Roman",serif;">
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<span style="font-size: small;"><span style="font-weight: normal; line-height: 115%;">At first, I only knew Kathy virtually. We were aware of each other, but didn't really know each other. When a friend of mine from college had a child going through cancer treatment, I put a Facebook call out to provide meals for their family while they were in treatment at Cincinnati Children's Hospital. Kathy responded with a fervor. Not only did she provide meals for Izzy's family, but she had her kids make cards, and she bought Izzy a birthday gift, and she used her connections to help me give the family over 35 days of meals. What I found was that not only was Kathy smart, but she is selfless, giving, driven and focused in a way that you automatically know you want her as an ally and friend. I look forward to getting to know her more, and I hope you do too!</span><span style="line-height: 115%;"> </span></span><br />
<br />
<span style="font-size: small;"><span style="line-height: 115%;">Children (and
tell us a little about each because who doesn’t like talking about their
kids?!?!):</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">We have three kids:</span><span style="font-weight: normal;">
</span><span style="font-weight: normal;">Maddy, who turns 9 in May, Drew, age 6, and Will, who turns 5 in one
week. Maddy is a great big sister, very protective and patient (mostly,
anyway.) She loves to read, draw and paint, and play outside with friends. Will
is very tall and very sweet. He is my hugger. Will loves Legos, cars and
trucks, his family and his dog. </span><span style="font-weight: normal;"> </span><span style="font-weight: normal;">Drew is our force of nature, our little bulldozer [T21]. He's
in kindergarten now and has had a great year, despite some major health challenges.
He has a devilish sense of humor and I love that his speech is now good enough
that he gets to be funny in that way, too! </span><br />
<br />
Do you work or volunteer? IF yes, what
do you do (besides being a great Mom!)?</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">I have my own media relations company. I started it just after Drew
was born, when it became clear that my long, erratic days in the newsroom were
over. (I was executive producer at WLWT at the time.) I also volunteer with the
DSAGC and St. Rita School for the Deaf, mostly helping with media campaigns.</span><br style="font-weight: normal;" />
<br style="font-weight: normal;" />
<span style="font-weight: normal;">How many years have you been involved
with the Eastside or Extraordinary Friends Mom’s group? Good question! I
haven't been able to attend nearly as many events as I would have liked. I work
days, David works nights and we have three children, which makes it
challenging. But I do remember taking a little Drew to some early playgroup
meetings, including one at Missy Skavlem's house. And I've had the pleasure of
meeting some of you individually at things.</span><br />
<br />
Why you like being a part of this group?</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">We all "get it".</span><span style="font-weight: normal;">
</span><span style="font-weight: normal;">This diagnosis does mean certain commonalities for some of us, and it's
been such a relief being able to connect with people who've been through things
that we're going through, who have great medical advice or therapy referrals,
etc. I never feel isolated. </span><br />
<br />
Best advice for new parents of a child
with T21:</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">Get in touch with your local Down Syndrome Association!</span><span style="font-weight: normal;"> </span><span style="font-weight: normal;">My parent mentor (Rosie Abel) was such
a huge help in those early weeks after Drew was born, and the DSAGC has been a
huge help in so many ways ever since. </span><br />
<br />
Greatest joy in having a child with T21:
</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;">Having Drew and feeling a connection to other people with
developmental disabilities has really opened up my worldview, and helped me to
see the beauty and dignity in so many ways of living and working. I had such a
narrow perspective before. He's made me a better person, more patient and
loving, because that's what he needs me to be. I feel the weight of that, but
am also profoundly grateful for it.</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><br />
What is one thing you’ve learned
personally from your journey that you would like to share with other
[EXTRA]ordinary Friends? </span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">That trying to extrapolate every little thing into a glimpse of
"what may be" is wasted energy. If you don't do that for your typical
children, you probably shouldn't for your kid who has T21, either. And yet I
catch myself doing it all the time; comparing Drew's milestones and
achievements to those of other kids with this diagnosis, to try to glean how
he's doing, if he's still on track, if he's following the same path that high-achieving
kids with this diagnosis have followed. But from what I've heard and read, they
all follow their own paths, anyway. And it's rarely a perfectly linear
progression. Eventually that will make its way into my thick head and I'll stop
fretting about it. But I'll never stop expecting Drew to do well. And I pity
the fool (said in my best Mr. T voice) who tries to tell me that Drew WON'T go
to college. </span><br style="font-weight: normal;" />
<br />
Favorite Therapy Trick/Tool:</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">Touch cues!! They really helped Drew develop certain sounds that were
so hard for him.</span><span style="font-weight: normal;"> </span><span style="font-weight: normal;">The Kaufman
protocol has also been huge for him. </span><span style="font-weight: normal;"> </span><span style="font-weight: normal;">The occasional glass of red wine has been therapeutic for me.
</span><br />
<br />
Random question: What's one of the
craziest dreams you've ever had? </span></span><br />
<span style="font-size: small;"><span style="line-height: 115%;"><span style="font-weight: normal;">When I was a kid, I had the same dream
over and over again. A lion was living in my house. Just us, no parents. The
lion could only walk on the carpeting, and I could only walk on the tile. Which
gave me the bathroom and the kitchen, which was pretty sweet, but he got the
bedrooms and the living room (and the TV, which was unfair). The whole dream
was us running around and skidding, cartoon-style. I have no idea what it
meant, but I do remember dashing through certain rooms during the daytime, just
in case. </span><br />
<br />
If you feel like it’s not too personal, can you share your diagnosis story?</span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;">We did the nuchal translucency testing when I was pregnant with Drew,
and while the translucency itself was perfect, the bloodwork came up with a 1
in 76 chance that he had Down syndrome. We opted not to do an amnio, since we
knew that a Ds diagnosis wouldn't change anything for us. But I did have a
Level II u/s in my 20th week, and the high-risk OB who read it swore up and
down that Drew did NOT have Ds. His measurements were perfect, his nasal bone
and heart were fine, etc. But when I was in labor, about to head into the OR
(it was a planned C-section), I just knew that my baby had Down syndrome. I am
distinctly un-woowoo, so I can't explain the feeling, other than I just knew
that he did. I asked a nurse to see if a neonatologist could come in, just to
be safe. Sure enough, when Drew was born, they saw some soft markers of Ds. He
also had pulmonary hypertension and was having difficulty breathing, so they
rushed him off to the NICU. The next few days were a blur, as he struggled with
the pulmonary hypertension. Then they told us he had a heart defect, and that
they were worried it was a major one. The same morning that the team from
cardiology was doing an echocardiogram on Drew, the karyotype results came in.
But the neonatologist who delivered the news that Drew had T21 did it on the
heels of the cardiologist, who told us that Drew's heart defect was, in fact,
minor, and would likely close on its own (it did.) So when the neonatologist
delivered the T21 diagnosis in very somber tones, David and I were so happy and
relieved about his heart being okay that it didn't feel like a big blow. The worry and fear came later, of
course, and that's where our parent mentor and our wonderful families really
helped. </span></span></div>
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<span style="font-size: small;"><span style="line-height: 115%;">Thank you, so much Kathy for your spirit of servant-hood and your inspirational family!</span></span></div>
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<tr><td style="text-align: center;"><span style="font-size: small;"><a href="http://2.bp.blogspot.com/-4H0kF5zJKtg/UXIP9VjX3TI/AAAAAAAAAQI/puT2jNkMOFo/s1600/Palmer1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://2.bp.blogspot.com/-4H0kF5zJKtg/UXIP9VjX3TI/AAAAAAAAAQI/puT2jNkMOFo/s400/Palmer1.jpg" width="298" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">What a handsome boy!</span></td></tr>
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<span style="font-size: small;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="font-family: inherit; margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-size: small;"><a href="http://3.bp.blogspot.com/-xdT0ToY-nT8/UXIP_9lAEqI/AAAAAAAAAQQ/OqyB06iLyPI/s1600/Palmerfam.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="http://3.bp.blogspot.com/-xdT0ToY-nT8/UXIP_9lAEqI/AAAAAAAAAQQ/OqyB06iLyPI/s400/Palmerfam.jpg" width="400" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">What a great looking family!</span></td></tr>
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<span style="font-size: small;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="font-family: inherit; margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-size: small;"><a href="http://1.bp.blogspot.com/-kFMr2b44Qto/UXIQCPot7VI/AAAAAAAAAQY/9WCg2DHvlA0/s1600/Palmerkids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://1.bp.blogspot.com/-kFMr2b44Qto/UXIQCPot7VI/AAAAAAAAAQY/9WCg2DHvlA0/s400/Palmerkids.jpg" width="300" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Sibling fun!</span></td></tr>
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-86796813665654824132013-03-20T19:36:00.001-07:002013-03-20T19:36:21.023-07:00World Down Syndrome Day: Who Am I?World Down Syndrome Day is tomorrow (3/21). What a difference two years makes! There was a call for posts from the International Down Syndrome Coalition to write about: Who Am I?<br />
<br />
Here is my response:<br />
<br />
I am not what you think I am at first look. <br />My size, my eyes, my unintelligible cries;<br />They confuse you, make you sympathize. <br />But I’m telling you, I’m not what you think I am at first look.<br />
<br />
There is a mystery to you of who I am.<br />
Your outside stares, glares and whispered snares;<br />That’s not on me, it’s theirs. <br />But I know there is a mystery to you of who I am. <br />
<br />
I am not what you think I am at first look.<br />
My fingers, my toes, my flat-bridged nose;<br />They bewilder you, make you pose.<br />Believe me, I am not what you think I am at first look.<br />
<br />
There is a judgment from you of who I am.<br />
Paint your little box, stocked with rocks;<br />Ready to throw out, head cocked.<br />I feel the judgment from you of who I am.<br />
<br />
I am not what you think I am at first look.<br />My strength, my joy, my place in this world.<br />Ha Ha! I might just have you foiled.<br />Maybe you know, I am not what you think I am at first look.<br />
<br />
There is a part of me <br />That you just cannot see <br />Simply by looking.<br />
<br />
For who am I?<br />
I am the strength you wished for,<br />[The determination that only comes from the heart.]<br />I am the unbridled joy you wished for,<br />[The love that only comes from the soul.]<br />
<br />
I am more than my boundaries;<br />I am more than numbers.<br />I am more.<br />
<br />
More than you knew you wished for.<br />
<br />
I am not what you think I am at first look. <br />My size, my eyes, my “mama” cries;<br />They now fill you; I’m your little prize.<br />I told you, I’m not what you think I am at first look.<br />
<br />
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-7750632301746116682013-03-18T18:44:00.003-07:002013-03-18T18:55:46.262-07:00March Mom of the Month: Meet Leesha!<style>@font-face {
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<span style="font-size: small;">One afternoon, late summer 2011, I believe, I came home and received a phone call from the DSAGC. At this point, Wyatt's diagnosis was settling in and I had started to get fairly involved with the Ds Community in Cincinnati. The DSAGC contact said that there was a new Mom who was having some ups and downs with her new diagnosis, and they thought that I would be a good person for her to connect with. They gave me her number, and we eventually connected. We decided to meet at the Hyde Park Panera with our babies. I walked in and proceeded to meet Leesha and her gorgeous daughter Jaia. We ate and talked, and found lots of things in common, including our inner fears about our children's futures and many joys as well. We have since grown from that first meeting into having a deep and meaningful friendship. Leesha is beautifully honest, funny as heck and is incredibly smart (did I mention she has her Ph.D?). She dresses Princess Jaia in some killer duds, too. </span></div>
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<span style="font-size: small;">I admire so many things about her, including her strength...and her spunk.</span></div>
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<span style="font-size: small;">And Jaia is now Wyatt's fiance, until further notice at least ; )</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>First Name</u>: Leesha </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Children</u>: </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">Jarren, age 12,
basketball enthusiast and future entertainment lawyer or TV personality;
Jaxson, age 5, video game expert, bundle of energy, future superhero; Jaia, age
20 months, princess who is adored by her brothers who serve as her loyal
subjects, destroyer of jewelry, diva rockin’ the extra chromosome.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Do you work or volunteer</u>? IF yes, what do you do (besides being
a great Mom!)?</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">I am a professor in the Communication department at Cincinnati
State College.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>How many months/years have you been involved with the Eastside
or Extraordinary Friends Mom’s group</u>?
</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">The groups that I
am most involved with are the African American Family Network and the
(Extra)Ordinary Friends Playgroup.
I have been a part of the AAFN since Jaia was about 2 months old. We officially formed (Extra)Ordinary Friends in
April 2012. [Leesha named this group, which was the inspiration for starting, and naming, my Blog!!] I stay involved with
some of the other groups and with the DSAGC, though I would say that those two groups have been my
lifelines through this process.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Why you like being a part of this group</u>? </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">I love being a part of the (Extra)Ordinary Friends because
we are all going through the same stages together. Our children will grow up together. I have no doubt that they will form
lifelong friendships with each, and I know that I have formed lifelong
friendships as well. The African
American Family Network is so important to us because we share a cultural
connection. Our families have
children of varying ages so we have mentors that we can connect with for advice
and to see what comes next with our children’s development. I am more politically passionate about
the AAFN because of the stark racial disparity of life expectancy for African
Americans as compared with Caucasians who have Down syndrome.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Best advice for new parents of a child with T21</u>: </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">I will share the best advice that I received. “It’s always going to hurt, but it
won’t always hurt this much”.
Someone told me that when Jaia was very young, and I held onto those
words for dear life! And I have
found it to be true. Does it still
hurt sometimes? Absolutely. Does it hurt as deeply as it did the
first year? Absolutely not.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Greatest joy in having a child with T21</u>: </span></div>
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<span style="font-size: small;"><br /></span></div>
<div class="MsoNormal" style="background: none repeat scroll 0% 0% white; color: #666666; font-family: inherit; line-height: normal; margin-bottom: 0.0001pt;">
<span style="font-size: small;">Well of course I love the Ds community and the friends
we’ve made. We have an instant
family. One of my two joys has
been watching how accepting my children are of differences. I always talked to them about being
aware and being kind. But no
amount of lectures can replace their experiences of having a sibling with T21
and interacting with people who have T21 or other special needs. My second greatest joy has been
educating others, and educating myself.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>What is one thing you’ve learned personally from your journey
that you would like to share with other [EXTRA]ordinary Friends</u>? </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">It’s okay to be sad.
I think there’s a pressure from the Ds community, unintentional as it
may be, that you have to be happy and joyful about Down syndrome to really love
your child. You can love and adore
your child and still wish they didn’t have Ds. There is no time frame to grieving. I wish we would allow each other the
space and opportunity to be authentic about how we are feeling. I have found the acceptance to do that
in the African American Family Network and the (Extra)Ordinary Friends group,
and I am always grateful for that.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Favorite Therapy Trick/Tool</u>: </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">When we were working on “tummy time” so Jaia could get upper
body strength, I would spread the blanket across the pew at church and lay her
on it. She kept trying to lift her
head because she heard the music and the preaching. Instant therapy for 2 hours!</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>Random question: What did you do during your childhood summers
that you loved the most</u>? </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">Hmmmm….visit the ice cream
truck? I worked at the Cincinnati
Zoo in high school. It was
definitely one of my favorite jobs ever.</span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;"><u>If you feel like it’s not too personal, can you share your
diagnosis story</u>? </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">Let’s just say I didn’t know
prenatally, and for me acceptance was a choice, not a foregone conclusion. </span></div>
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<span style="font-size: small;"><br /></span></div>
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<span style="font-size: small;">Thank you, Leesha for being an [EXTRA] ordinary inspiration, advocate, and friend!</span></div>
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<br /></div>
<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://1.bp.blogspot.com/-dfZTqmd-9xc/UUfBWW_fEjI/AAAAAAAAAPQ/yzP8OyNGa_c/s1600/Leesha_HS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://1.bp.blogspot.com/-dfZTqmd-9xc/UUfBWW_fEjI/AAAAAAAAAPQ/yzP8OyNGa_c/s400/Leesha_HS.jpg" width="398" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The beautiful Dr. Leesha!</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://4.bp.blogspot.com/-LpyKFC-hn_M/UUfBal_QDcI/AAAAAAAAAPY/vkze6rH4o4Y/s1600/Princess_Jaia.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://4.bp.blogspot.com/-LpyKFC-hn_M/UUfBal_QDcI/AAAAAAAAAPY/vkze6rH4o4Y/s640/Princess_Jaia.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Princess Jaia at her baptism</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/-LojQWWzymd8/UUfCHCP9JTI/AAAAAAAAAPg/m_xQ-ulNpPo/s1600/Leesha_sons.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="http://3.bp.blogspot.com/-LojQWWzymd8/UUfCHCP9JTI/AAAAAAAAAPg/m_xQ-ulNpPo/s640/Leesha_sons.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Leesha's supper handsome sons</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://2.bp.blogspot.com/-ZHQZ3NUG-dc/UUfCIUJSVHI/AAAAAAAAAPo/dwHFQBtmrXk/s1600/Leesha_J_Love.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://2.bp.blogspot.com/-ZHQZ3NUG-dc/UUfCIUJSVHI/AAAAAAAAAPo/dwHFQBtmrXk/s640/Leesha_J_Love.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet kisses from Jaia!</td></tr>
</tbody></table>
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-39752196101022504862013-03-04T20:00:00.001-08:002013-03-05T05:19:02.695-08:00The Double Edged Age QuestionThis post was in edit mode. But then the topic popped up on one of our Mom's groups FB pages, so I thought it was a good time to share.<br />
<br />
The other day, I picked up my kids from the sitter as I usually do on Friday's. I was late and rushing. I walked in and my sitter was getting ready to leave. I offered to stay so she could make a friend's birthday party. While I was waiting for another Mom to arrive, I interacted with one of the kids I had not really seen before. He was standing, playing and then I picked him up to put his shoes on.<br />
<br />
He was heavy, likely weighing more than Eden, my 4 year old. He was trying to talk and I was attemping to understand him. His mother arrived and we exchanged pleasantries.<br />
<br />
Then I asked her...<br />
<br />
"When is his birthday?" I said with intrigue.<br />
<br />
"August....(something)" she said.<br />
<br />
'So will he be 2 or 3?" I questioned.<br />
<br />
She looked at me a little odd.<br />
<br />
"He will be 2," she said, then continued, "how old is your son?"<br />
<br />
I was not sure I wanted to answer.<br />
<br />
"He just turned 2 last week," I responded.<br />
<br />
The look I received back told a whole story in a matter of seconds: confusion, pity, questioning, empathy...<br />
<br />
I was affected. Maybe I read into it too much, but still. This child was obviously leaps and bounds ahead of Wyatt, and that is my reality. I don't see it often because I'm so focused on what Wyatt can do versus what he can't or isn't. I felt slapped in the face with Wyatt's delays.<br />
<br />
On top of that, I noticed that she did not ask about Eden. This is a scenario with which I am often faced.<br />
<br />
We Mom's like to ask how old other kids are. But with Wyatt, and other kids like him with Down syndrome, it can be a question that is tough. People seem to ask about our cuties, likely with great intent on paying attention to, and offering compliments to our kids with special needs, in an attempt to graciously acknowledge our kids. This is great, but it can also leave us feeling like our "typical" kids are ignored. And it can bring up a whole host of other feelings.<br />
<br />
I don't know why this is such a sticking point. Maybe that question is a reminder that our kids are "unique" or maybe it is a reminder that our kids are behind. Especially for me, since most people guess that Wyatt is a full year younger than he actually is. Don't get me wrong...I'm completely guilty of this ageist mis-fire. Once I asked a Mom if her son was 3. He was actually 6. (Open mouth, insert foot.) <br />
<br />
I spent much of the ride home that Friday justifying Wyatt's accomplishments, making a mental list off all the things Wyatt could do and the other kid couldn't. I bet that kid can't sign. I bet that kid can't focus in therapy like Wyatt can. I bet that kids doesn't eat like Wyatt or is as well behaved as Wyatt. I bet that kid is...blah, blah, blah... <br />
<br />
Once home, we sat down to a quick $5 pizza dinner and I felt compelled to address what it means to be small. A few weeks ago at church, they taught Eden about David and Goliath. I asked Eden if she remembered the story. With prompting, she vaguely recalled the story and I filled in the gaps. <br />
<br />
"Eden, you and Wyatt are probably always going to be smaller than others in your class, " I told her. "Mommy was almost always the smallest. But you know what? Being small doesn't mean you are not strong," I told her. <br />
<br />
I don't know why I felt the need to address this directly that day, or why I explained it to Eden. Looking at the reality of Wyatt's delays sometimes hits hard, with me likely over-exaggerating his actual delays. I felt like I not only needed to defend Wyatt's delays and small stature, but I also related it to Eden. My kids are only about 10 pounds apart, with Eden currently weighing about 32 pounds at 4 1/2 years and Wyatt maybe kissing 22 pounds at 2 years. <br />
<br />
But after all my soul searching, I justified it: my kids are small. But they are small...and mighty!And who cares what age others think they are!?! They are doing just fine - no matter their size.<br />
<br />
The age question can be a double edged sword. Asking can evoke emotion, but ignoring the "normal" Mom question can seem dismissing. But it doesn't have to be that way.<br />
<br />
The next time you see a kid with special needs, feel free to oooh and aaaah over their cutness. But also, do us a favor - do the same for our other children...and don't try and guess their age, just ask how old they are. And when we answer you, please respond with something more positive than a confused or sympathetic look. Like maybe try, "oh he is such a big boy! And on top of that, your daughter is beautiful!"<br />
<br />
That would be nice, and appreciated. <br />
<br />
Here are a few random photos of my Small and Mighties:<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://2.bp.blogspot.com/-ZaOOqvsjIeM/UTVrGeFi-bI/AAAAAAAAAOg/ipQbQx-K9Ds/s1600/Eden_Wyatt_ipad.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="458" src="http://2.bp.blogspot.com/-ZaOOqvsjIeM/UTVrGeFi-bI/AAAAAAAAAOg/ipQbQx-K9Ds/s640/Eden_Wyatt_ipad.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eden and Wyatt watching Backyardigans on the iPad</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://2.bp.blogspot.com/-BvU5W5G2PRw/UTVrIjOQqvI/AAAAAAAAAOo/1Gd5CNG0dAE/s1600/JoshandKids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://2.bp.blogspot.com/-BvU5W5G2PRw/UTVrIjOQqvI/AAAAAAAAAOo/1Gd5CNG0dAE/s640/JoshandKids.jpg" width="478" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleepy Wyatt and Eden on Daddy's lap for movie night</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://1.bp.blogspot.com/-cKCiZxErkLk/UTVrLE213nI/AAAAAAAAAOw/UzhH5P6mFnc/s1600/PetiteEden.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://1.bp.blogspot.com/-cKCiZxErkLk/UTVrLE213nI/AAAAAAAAAOw/UzhH5P6mFnc/s640/PetiteEden.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My beautiful, petite Eden</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://4.bp.blogspot.com/-eLsYxIO4TDw/UTVrOHuyKhI/AAAAAAAAAO4/YQGmCb7oGmI/s1600/Wyatt_baptims.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://4.bp.blogspot.com/-eLsYxIO4TDw/UTVrOHuyKhI/AAAAAAAAAO4/YQGmCb7oGmI/s640/Wyatt_baptims.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wyatt's baptism...let's face it, we are not going to ever have giant kids...</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://4.bp.blogspot.com/-XjFDoRd34kk/UTVrQrOP23I/AAAAAAAAAPA/4WBYfEnZzLg/s1600/Wyatt_haircut.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://4.bp.blogspot.com/-XjFDoRd34kk/UTVrQrOP23I/AAAAAAAAAPA/4WBYfEnZzLg/s640/Wyatt_haircut.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My handsome little man getting his hair cut</td></tr>
</tbody></table>
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<br />
<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com4tag:blogger.com,1999:blog-856234429053006246.post-79112389722417102742013-02-27T17:41:00.005-08:002013-02-27T17:43:56.653-08:00February Mom of the Month: Meet Stephanie!<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-VhdXirlGPYU/US6vq0STSDI/AAAAAAAAAOI/V8XpdU0pZhw/s1600/EliandEvie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
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</div>
<div class="ecxs2">
<span class="ecxs5"><span class="ecxbumpedFont15">Meet Stephanie! </span></span></div>
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<span class="ecxs5"><span class="ecxbumpedFont15">Stephanie and I met one evening at a DSAGC sponsored seminar last spring. She was there with her brand new son Eli. I hadn't met too many Moms with boys yet, so my husband, Josh, and I approached her to introduce ourselves. In that moment, I made an immediate friend. She was a fellow Special Ed teacher and also had a daughter the same age as my Eden. She was teaching at the same school where my Dad taught for nearly 30 years. Since then, we continue to find interesting connections on a regular basis and become closer friends. She is just one example of the fact that, without Down syndrome, I would not have found this truly [EXTRA]ordinary friend. She is a member of our [EXTRA]ordinary Friends group (comprised of families with kids who have Ds and were born in 2011). </span></span></div>
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<br /></div>
<div class="ecxs2">
<span class="ecxs5"><span class="ecxbumpedFont15"><u>Fir</u><u>st Name</u>: Stephanie</span></span></div>
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<span class="ecxs5"><span class="ecxbumpedFont15"><u>Children</u>: Evie - 4 years (spitfire, just like Eden); Eli - 14 months (Ds)</span></span></div>
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<span><u><span class="ecxs5"><span class="ecxbumpedFont15">Do you work</span></span><span class="ecxs5"><span class="ecxbumpedFont15"> or volunteer</span></span></u><span class="ecxs5"><span class="ecxbumpedFont15"></span></span><span class="ecxs5"><span class="ecxbumpedFont15"></span></span><span class="ecxs5"><span class="ecxbumpedFont15">? </span></span></span></div>
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<br /></div>
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<span><span class="ecxs5"><span class="ecxbumpedFont15">I'm an Intervention Specialist at Colerain High School. (On the northwest side of Cincinnati)</span></span></span></div>
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<br /></div>
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<span><u><span class="ecxs5"><span class="ecxbumpedFont15">How many years have you been involved with the </span></span><span class="ecxs5"><span class="ecxbumpedFont15">Extrordinary</span></span></u><span class="ecxs5"><span class="ecxbumpedFont15"><u> Friends Mom’s group</u>? </span></span></span></div>
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<span><span class="ecxs5"><span class="ecxbumpedFont15">1 year</span></span></span></div>
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<span class="ecxs5"><span class="ecxbumpedFont15"><u>Why
you like being a part of this group</u>? </span></span></div>
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<br /></div>
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<span class="ecxs5"><span class="ecxbumpedFont15">I know it might sound trite, but
I've met some really wonderful families through this group and it's
very helpful to have other people that just "get it." I've developed
close friendships with a few of the Moms and I value that so much. </span></span></div>
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<br /></div>
<div class="ecxs2">
<span><u>Best advice for new parents of a
child with T21</u>: </span></div>
<div class="ecxs2">
<br /></div>
<div class="ecxs2">
<span>Don't worry--it's going to be a great life. A hectic,
often overwhelming, sometimes scary life. But a really great one if you
let yourself relax enough to enjoy the ride. Don't let Down syndrome
define your child--remember it's just a diagnosis. Don't let Down
syndrome consume you either, but be an advocate. And remember that more
than anything, your new baby needs to be loved, just like any other
baby. </span></div>
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<span class="ecxs5"><span class="ecxbumpedFont15"><u>Greatest
joy in having a child with T21</u>: </span></span></div>
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<br /></div>
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<span class="ecxs5"><span class="ecxbumpedFont15">This is a hard question. I get really
emotional just thinking about it. As parents of kids with T21, we're
sometimes accused of "Disney-fying" Down syndrome (and our lives with
Down syndrome). But so many things in my life have gotten better since
my son was born. I've deepened my faith and spirituality--that sustained
me during his time in the NICU when he was dealing with a
life-threatening condition. I've forged meaningful and cherished
relationships with new friends. I've evaluated my priorities and made
more time for my family and focused less intensely on my career (which
I'm sorry to say I didn't do when my daughter was born). And most
importantly, Eli is pure joy. He is light and life and love. He has
taught me there are no small accomplishments; he has taught me to
celebrate little moments and to believe in big miracles. I can't imagine
my life without him. </span></span></div>
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<br /></div>
<div class="ecxs2">
<span><u><span class="ecxs5"><span class="ecxbumpedFont15">What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA</span></span><span class="ecxs5"><span class="ecxbumpedFont15">]ordinary </span></span></u><span class="ecxs5"><span class="ecxbumpedFont15"><u>Friends</u>? </span></span></span></div>
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<br /></div>
<div class="ecxs2">
<span><span class="ecxs5"><span class="ecxbumpedFont15">I look back on Eli's time in the NICU, at the level of medical care he
required at home, and at all of his surgeries, and sometimes I still
can't believe that was our life. I never thought I could get through
something like that. But I did. We did. And we're ok. I don't think I'm
stronger than other parents, but I do think I'm resilient. Some of the
things we went through in his early months--well, I didn't know I had it
in me. I use that experience to put things in perspective now, to
remind myself when things seem tough, that we've already been to hell and
back and it turned out just fine.</span></span></span></div>
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<br /></div>
<div class="ecxs2">
<span class="ecxs5"><span class="ecxbumpedFont15"><u>Favorite Therapy Trick/Tool</u>: </span></span></div>
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<br /></div>
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<span class="ecxs5"><span class="ecxbumpedFont15">Incorporate it into your everyday life--it doesn't have to be a structured activity.</span></span></div>
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<br /></div>
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<span><span class="ecxs5"><span class="ecxbumpedFont15"><u>Random question</u>: </span></span><span class="ecxs5"><span class="ecxbumpedFont15"> </span></span></span></div>
<div class="ecxs2">
<br /></div>
<div class="ecxs2">
<i><span><span class="ecxs5"><span class="ecxbumpedFont15">What
is your favorite vacation spot and why? </span></span></span></i></div>
<div class="ecxs2">
<br /></div>
<div class="ecxs2">
<span><span class="ecxs5"><span class="ecxbumpedFont15">Anywhere I can slow down and
savor time. I love the beach and I love the mountains. Disney is one of
my favorites too.</span></span></span></div>
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<br /></div>
<div class="ecxs2">
<span><span class="ecxs5"><span class="ecxbumpedFont15">---- </span></span></span></div>
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<br /></div>
<div class="ecxs2">
<span><span class="ecxs5"><span class="ecxbumpedFont15">Also, read Stephanie's diagnosis story <a href="http://pacifyme.wordpress.com/2012/05/12/hello-world/" target="_blank">HERE</a>, on her blog, Pacify Me. (Another commonality that we share...we Blog and have a love for expressing ourselves through the written word!)</span></span></span></div>
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<br /></div>
<div class="ecxs2">
<span><span class="ecxs5"><span class="ecxbumpedFont15">We are so grateful to have Stephanie, her husband John and her gorgeous kids in our lives!</span></span></span></div>
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<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://1.bp.blogspot.com/-X01J-yc5GRM/US6uj_STdeI/AAAAAAAAANw/RNXeozlHSyo/s1600/StephandEli.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://1.bp.blogspot.com/-X01J-yc5GRM/US6uj_STdeI/AAAAAAAAANw/RNXeozlHSyo/s640/StephandEli.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stephanie and Eli </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://2.bp.blogspot.com/-Xtj-xc5srVs/US6ul5ey6CI/AAAAAAAAAN4/GUqD5tMv5qU/s1600/EliStanding.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://2.bp.blogspot.com/-Xtj-xc5srVs/US6ul5ey6CI/AAAAAAAAAN4/GUqD5tMv5qU/s640/EliStanding.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli: could he be any cuter?!?!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<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://2.bp.blogspot.com/-VhdXirlGPYU/US6vq0STSDI/AAAAAAAAAOI/V8XpdU0pZhw/s1600/EliandEvie.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="459" src="http://2.bp.blogspot.com/-VhdXirlGPYU/US6vq0STSDI/AAAAAAAAAOI/V8XpdU0pZhw/s640/EliandEvie.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big sister Evie and little brother Eli</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/-v1yunpUtkEs/US6vAPPCOfI/AAAAAAAAAOA/NlHx1C-q0Qo/s1600/stephandjohn.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="http://3.bp.blogspot.com/-v1yunpUtkEs/US6vAPPCOfI/AAAAAAAAAOA/NlHx1C-q0Qo/s640/stephandjohn.jpg" width="632" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stephanie and John at their wedding. So sweet!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="ecxs2">
<span><span class="ecxs5"><span class="ecxbumpedFont15"> </span></span></span></div>
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<span><span class="ecxs5"><span class="ecxbumpedFont15"> </span></span></span></div>
[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-55689159204090420952013-02-11T18:55:00.001-08:002013-02-11T18:55:50.205-08:00Therapy Setbacks and SuccessesThis week, we experienced a setback in Therapy. It wasn't the first time this has happened. Last year Wyatt was sick for about 2-3 months from December to mid-February. It was frustrating because he regressed in eating and some communication (because of croup, a tummy bug, and recurrent colds). He didn't want to eat many solids and he lost, yes LOST, nearly a pound in a month. At his one year check-up, he weighed a mere 14.5 pounds. The words "failure to thrive" at a group assessment appointment hit me like a Mac truck. Feeding and speech therapy definitely had a set back. <br />
<br />
Thankfully, he rebounded and over the last year has gained 6 pounds and grew about 5 inches. He now feeds himself (he pretty much eats what we eat) and he is working on using utensils. He is signing and has a couple of words. He is still tiny, but we are proud of his progress.<br />
<br />
This time, Wyatt had a set back in physical therapy. And it's kind of my fault.<br />
<br />
Let me back up for a moment. Wyatt is not walking...independently. In October, Wyatt got fitted for, and received<a href="http://www.surestep.net/" target="_blank"> Sure Steps</a> (click on the word to see the website) to support his walking. There are two stages of Sure Steps. One is a low ankle support to assist with strength and pronation:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-pif0KtpcA3s/URmpLn3PV8I/AAAAAAAAANQ/mj5YBJkyj08/s1600/Sure_Steps_short.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-pif0KtpcA3s/URmpLn3PV8I/AAAAAAAAANQ/mj5YBJkyj08/s320/Sure_Steps_short.jpg" width="320" /></a></div>
<br />
The other is a higher support, up over the calf, to help with his issues of buckling his knee (he doesn't like to squat). The ankle supports fit into the higher supports for control in both areas:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-_wcR1SrXhvA/URmpjoV6vqI/AAAAAAAAANY/w1ccKwoeeOI/s1600/Sure_Steps_High.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-_wcR1SrXhvA/URmpjoV6vqI/AAAAAAAAANY/w1ccKwoeeOI/s320/Sure_Steps_High.jpg" width="320" /></a></div>
<br />
Fast forward to the past few weeks...We had a decent snow (enough to sled) a few weeks ago, and while taking him sledding for the first time, we had a mishap and his tiny ankle got twisted. We almost made a trip to the ER, but our PT said it wasn't broken, but probably strained. She recommended that we put his braces back on and give him rest. <br />
<br />
This means that he has gingerly been using his left foot. He has not wanted to walk like he was before. We are, at this point, back where we were a few months ago. Another setback.<br />
<br />
As initially frustrating as this was, I realized that these things happen. Sometimes with our kids it is two steps forward and one step back (literally and figuratively).<br />
<br />
So what can we do?<br />
<br />
Not all is even close to lost. While the PT portion of our therapy is slightly derailed, we can still focus on other areas. Therapy should not be an all-on assault, but rather a thoughtful execution of the current strengths. Gross or fine motor not moving forward? Focus on another area! In this case, we went back to focusing on speech and signing. And even though PT was at a setback, we saw progress in signing. Wyatt has added "shoes" and "book" to his signing capabilities! We were reading books and modeling signs, with hand-over-hand, guided instruction. And it paid off. <br />
<br />
So if you have a stall in one area, be sure to move forward in another. A setback does not mean all is lost. Keep moving forward thoughtfully and you will likely still see growth. [REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-1903085433959943302013-02-08T19:54:00.001-08:002013-02-08T21:14:49.727-08:00Please Invite "A Wyatt"Our lives, in the human experience, are built around community. We naturally want to be around others (for the most part). Dinners, parties, celebrations, events, activities: all are valued and shared experiences with others.<br />
<br />
What are you doing in the near future?<br />
<br />
Are you having a birthday party? A play date? Are you going to the zoo?<br />
<br />
If so, I encourage you to invite A Wyatt.<br />
<br />
I say "A" Wyatt because I'm not suggesting you necessarily invite <i>him</i> (no, I'm not shopping out my child). But I am suggesting that you just invite someone <i>like</i> Wyatt. In other words: invite a child who is differently abled, or even is culturally different.<br />
<br />
This topic is relevant because I have read a few posts this week from friends who are completely elated because their child with a disability was invited - for the first time in some instances - to a birthday party or an event for a "typical" child. (We also have a culturally diverse family, as my nieces and nephew are bi-racial.)<br />
<br />
Haven't thought about that much? Well, maybe you should.<br />
<br />
An invitation of A Wyatt to an event has many benefits; to both the child (and family of that child) who is differently abled, or diverse...and to the person or family who is doing the inviting. You see, parents of what we, in the disability world, like to call "typical" children (note that I did not say normal) probably do not consciously pay attention to whom they invite to life events. You invite kids who are in your child's circle. That circle is likely comprised of kids who are very much like your child.<br />
<br />
Well guess what? Diversity is out there. Your child will likely interact with someone who has a disability, or who is culturally different, sometime in their life. And when they do, I hope that they have been given the life experiences to know that the person is not weird or strange; but rather that your child knows how to value diversity and the differently abled.<br />
<br />
Teaching value of all people is a very important lesson in life. Starting to teach that lesson at a young age is vastly important, IMHO. Eventually, we all will likely be disabled, or differently abled at some point in our lives. We all have differences in idealism's and culture. Whether it be heritage, or when we are old, injured or sick. Because inclusion and acceptance of what isn't "typical" is not yet automated in our culture, we need to be purposeful about it. Purposefulness means thoughtfully including a diversified sample (read: disability, culture, age, etc.) of children into your child's life circle. <br />
<br />
So invite A Wyatt. And if you do actually invite Wyatt, I promise you, you...and your kids, will not be disappointed. We will be grateful. And your child, and family, just might make new [EXTRA]ordinary friends. <br />
<br />
Here is Wyatt interacting in a group with typical kids. Our sitter's son (who is ethnically different than our family...yay!) has completely attached himself to Wyatt : ) Happiness!<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/-1kyAqyI2ULA/URXFbsKPf5I/AAAAAAAAAMw/uEQQeR51V3U/s1600/WyTT_CONNOR.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="http://3.bp.blogspot.com/-1kyAqyI2ULA/URXFbsKPf5I/AAAAAAAAAMw/uEQQeR51V3U/s640/WyTT_CONNOR.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">BUDDIES! (with Wyatt showing his silly face!)</td></tr>
</tbody></table>
<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://4.bp.blogspot.com/-67CN0B8j_TA/URXF13x0A5I/AAAAAAAAAM4/3POhdDDjbp4/s1600/Wyatt_group-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="http://4.bp.blogspot.com/-67CN0B8j_TA/URXF13x0A5I/AAAAAAAAAM4/3POhdDDjbp4/s640/Wyatt_group-1.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See how Connor takes care of Wyatt? Awesome! [PS, Eden is second from right]</td></tr>
</tbody></table>
<br />
<br />
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-14805213659380744302013-02-02T19:42:00.001-08:002013-02-04T08:23:33.078-08:00PatienceMany people tell me that I must be so patient. Many people also have told me that having a child with special needs is a lesson in patience. This week, both of these statements have been either challenged or reinforced.<br />
<br />
Having a pre-schooler, a girl pre-schooler at that, has it's own challenges. Eden is a piece of work. We love her dearly, but oh my word....I see her teens flashing before my eyes in the form of eye rolling, drama, attitude and defiance. Most days she is a very well behaved child, with manners and thoughtfulness. But this week has seemed like someone has forgotten that I am The Mom. It has required oodles of patience that I have not necessarily had. Repeating myself sixteen times (or more) is not my idea of fun.<br />
<br />
Here is part of my day:<br />
<br />
"Eden pick up your toys on the floor."<br />
<br />
[two minutes later]<br />
<br />
"Eden pick up your toys on the floor."<br />
<br />
[two more minutes]<br />
<br />
"Eden pick up your toys on the floor."<br />
<br />
[and two more minutes]<br />
"Eden pick up your toys on the floor."<br />
<br />
No toys are picked up. I yell.<br />
<br />
"EDEN PICK UP YOUR TOYS!!!!!!" <br />
<br />
Eden cries. *SIGH*<br />
<br />
Wyatt also likes to test my patience. For some reason, he loves to scratch his butt when I change his diaper. He has some real doozies. Diaper comes off, I pick up his feet to clean him....hands start scratching.<br />
<br />
"Wyatt, stop."<br />
<br />
[start cleaning again, Wyatt starts scratching]<br />
<br />
"Wyatt, no!"<br />
<br />
[put his hands on his chest, start cleaning, Wyatt scratches, putting his hands right in poop.]<br />
<br />
"WYATT!! MOMMY SAID NO!"<br />
<br />
[before I can clean hands, Wyatt puts fingers in mouth]<br />
<br />
"WYYYYAAATTTTTT!"<br />
<br />
[I yell, Wyatt cries]<br />
<br />
I need to calm down. Kids do things and we cannot always control their actions. I try to have patience with both of my children. Let me clear this up: I do not have [EXTRA]ordinary patience because I have a child with special needs. I do not exhibit perfection in parenting. I am human and I get mad, and I get frustrated. And yes, sometimes, I yell.<br />
<br />
I saw my reaction reiterated in an interaction that Eden had with Wyatt. They were playing together (which is awesome) and Eden got frustrated with Wyatt. Then I heard her produce a guttural "Ughhhhh!" She was mad that he had not been playing with her the way she wanted, and she responded with short patience. I took it as a teaching moment and talked her through the appropriate response. But I realized that she is modeling my sometime impatience. <br />
<br />
I'm impatient about so many things, currently including Wyatt walking. <br />
<br />
I was thinking this week, as many life happenings that weren't so happy, were happening: what if God had that little of patience for me? What if He got so frustrated with me and yelled at me after I had not listened the third (or sixteenth) time to Him? I am grateful that God has such patience for me. I am immensely thankful that I am able to have the grace He so selflessly hands out because He loves me that much. <br />
<br />
Patience is tough.<br />
<br />
Patience is a work in progress.<br />
<br />
Patience is a virtue.<br />
<br />
So tomorrow, after Wyatt scratches his poop covered butt and I ask Eden to clean up her toys for the seventeenth time, I hope I remember God's grace and model that grace with my kids.<br />
<br />
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com2tag:blogger.com,1999:blog-856234429053006246.post-61045097247871712912013-01-22T11:10:00.000-08:002013-01-22T11:10:31.318-08:00Therathoughts - Start hereTherapy can be overwhelming. One of the best pieces of advice I have been given by another [EXTRA]ordinary Mom is to try and work it into your everyday life. Sometimes that can be done and other times, you have to be a little bit more purposeful in incorporating your therapy. In this section, I want to offer some of the ways I work on encorporating therapy in our everday lives and also how I make time for the more purposeful therapy. These are my Therathoughts!<br />
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Before I start adding my Therathoughts, I'll review our therapy plan. Right now, Wyatt receives Physical and Speech therapy through Cincinnati Children's Hospital and Medical Center. He gets a unique style of dual therapy in the same hour, where both the PT and the SLP are working with him at the same time. It's worked well for us thus far (and we will continue with this plan until it doesn't work well for us). He also see an Early Interventionist (read: early childhood teacher) once a month. So really, there is nothing too over the top or challenging with our schedule. No more than that of a typical child's crazy sports schedule or extra-curricular activity schedule. It's just that we started all this before he was one year old...not school aged. <br />
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Finally, I also want YOU to share your therathoughts! We are always looking at new ideas and ways to work on certian skills. So, please feel free to add in your ideas and tips on any one of the blog entries here. You may be helping another [EXTRA]ordinary Mom who is struggling with finding the right therapy modification or itdea for their child!<br />
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Thanks and I hope you find this useful![REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-53951949278269786012013-01-22T07:12:00.002-08:002013-01-22T10:39:59.312-08:00January Mom of the Month: Meet Missy<style>@font-face {
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<span style="font-size: 12pt; line-height: 115%;">Christmas season wreaked havoc on our family. EVERYONE was sick. Which meant, I got so very behind on a million things, including my Blog. I was supposed to have this Mom be the December Mom of the Month, but, alas, it didn't happen. </span><br />
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So without further ado, I bring you....<br />
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<span style="font-size: large; line-height: 115%;"><em><strong>The January Mom of the Month: Meet Missy!</strong></em></span><br />
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<b><span style="font-size: 12pt; line-height: 115%;">First Name</span></b><span style="font-size: 12pt; line-height: 115%;">: Missy (Melissa as her formal introduction), a co-leader for the Eastside Mom's Group and Playgroup</span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Children</span></b><span style="font-size: 12pt; line-height: 115%;"></span></div>
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<span style="font-size: 12pt; line-height: 115%;">Vivianne is my 13 year old. She is in 7<sup>th</sup> grade at St. Ursula Villa. She gets great grades and is in the Cincinnati Children’s Choir’s Con Brio group. She is a sci-fi geek, loves Dr. Who, Les Miserable, and anything related to science. Vivianne is left-handed. </span><br />
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<span style="font-size: 12pt; line-height: 115%;">[On a personal note, V is awesome with kids and migrates to Wyatt anytime she is around him!]</span></div>
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<span style="font-size: 12pt; line-height: 115%;">Lilianne is 7 (8 on December 21). She is a 2<sup>nd</sup> grader at Ayer Elementary school. She is very social, and loves to be outdoors on the monkey bars or with her friends. Lilianne has curly hair. </span></div>
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<span style="font-size: 12pt; line-height: 115%;">Violette is 5 years old. She is in Kindergarten. She loves Spongebob, Brave, drawing (and coloring, and practicing her letters), Walter and the Muppets. Violette has Down syndrome.</span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Do you work or volunteer</span></b><span style="font-size: 12pt; line-height: 115%;">? </span></div>
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<span style="font-size: 12pt; line-height: 115%;">I work full time for Gardner Business Media in Newtown. I have the privilege of working with my dad, my brother, and my three cousins, along with a wonderful extended work family. We have media brands (think magazines, websites and in person events) in the coolest industries – manufacturing. The individuals who use our products are the people who make the equipment that allows us to have all of the nice things in the world – medical devices, energy, airplanes, electronic devices, breast pumps (yes, Medela has subscribers to our magazines,) cars, etc..</span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">How many years have you been involved with the Eastside or Extraordinary Friends Mom’s group</span></b><span style="font-size: 12pt; line-height: 115%;">? </span></div>
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<span style="font-size: 12pt; line-height: 115%;">I think I went to my first playgroup about 6 weeks after Violette was born. I was scared out of my wits. I remember looking at all of the “Down syndrome Awareness” ribbons on the back of the car outside. UGH. I didn’t know if I was going into a bunch of depressed, sad, crying women, or what it would be like (I think I was picturing a sad support group where people talked about how hard their lives were.) I scrambled my courage up, took Violette out of her car seat and said “Well, Miss. Violette – let’s go meet your people!” Violette was too little to “play,” of course, but I got so much out of it. I remember meeting Kristin, and Lisa Arnold. All I wanted to do was stare at the kids – just watch them. I was totally tongue tied. I remember watching Sophia Arnold and saying “She seems so “high functioning”” Lisa’s response is something I’ll never forget – she said, very kindly – that she really didn’t like that phrase because it really didn’t mean anything to her. Sophia did very well, but so did many of her other friends with Down syndrome, and wasn’t a good descriptor of all of the strengths and weaknesses that her child had. She gave me a lot to think about. Everyone was so friendly, and kind. It was a very happy, safe place to be. I felt like I was finally someplace where I could see life where I’d move away from my fears about her diagnosis.</span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Why you like being a part of this group</span></b><span style="font-size: 12pt; line-height: 115%;">? </span></div>
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<span style="font-size: 12pt; line-height: 115%;">See my answer above. I have made friends with a much wider group of people who I adore. I don’t feel alone with Violette’s diagnosis. My typical children get to see that having a sibling with Down syndrome isn’t unusual. I also like that someday when Violette is an adult I will have many friends who will be comfortable talking about and collaborating with on issues related to being an adult – housing, social life, work. I think we are all stronger for each other! (My personal top 12 list for participating in your local group: </span><a href="http://yomammamamma.blogspot.com/2010/11/top-12-reasons-you-should-participate.html"><span style="font-size: 12pt; line-height: 115%;">http://yomammamamma.blogspot.com/2010/11/top-12-reasons-you-should-participate.html</span></a><span style="font-size: 12pt; line-height: 115%;">) Oh, plus we have so much fun and go so many great places!</span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Best advice for new parents of a child with T21</span></b><span style="font-size: 12pt; line-height: 115%;">: </span></div>
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<span style="font-size: 12pt; line-height: 115%;"> I have pretty much everything on my blog on that subject: <a href="http://yomammamamma.blogspot.com/2011/05/my-favorite-posts-for-new-moms-with.html">http://yomammamamma.blogspot.com/2011/05/my-favorite-posts-for-new-moms-with.html</a> </span></div>
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<span style="font-size: 12pt; line-height: 115%;">[Missy has an amazing Blog. Really. Read it, like, now.] </span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Greatest joy in having a child with T21</span></b><span style="font-size: 12pt; line-height: 115%;">: </span></div>
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<span style="font-size: 12pt; line-height: 115%;">Violette is a really funny, fun person. She loves adventures, and always has a funny look at things. We laugh so much with her. I enjoy just hearing the next thing that is going to come out of her mouth. She’s had a few classics, like “Nice try, Captain Loser” to her father, and “Mommy, you a SASSYPANTS.” Also love watching her eat ice cream. And touching her smooth smooth skin. And looking at her perfect eyebrows.</span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends</span></b><span style="font-size: 12pt; line-height: 115%;">? </span></div>
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<span style="font-size: 12pt; line-height: 115%;">I think I am fascinated right now –at this moment - with the differences in actually living with a person with an “intellectual disability” vs. what I thought (feared) originally. In my life prior to Violette, I think I thought of ID as something of a tragedy, both for the person who had it and the people who live with that person. Now it seems like a small part of the person that is Violette, and I don’t find those weaknesses any more tragic than those of my other children (or my husband or me.) She has likes, dislikes, gets mad, is happy, is loving, just like the rest of us. Living with Violette has helped me grow, and expanded what I value. I live with 4 other people who have a wide range of gifts and weaknesses (and I certainly have my own share of both.) The differences I see within my family have stretched me. I think a lot about words, and how we use them, and how we see ourselves. I’ve thought a lot about communication, and that you don’t have to speak well to communicate well. I’ve learned that my children don’t have to have a life like mine to be happy. </span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Favorite Therapy Trick/Tool</span></b><span style="font-size: 12pt; line-height: 115%;">: </span></div>
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<span style="font-size: 12pt; line-height: 115%;">I asked Jawanda Mast, Mom of Rachel in this wonderful video - </span><a href="https://www.youtube.com/watch?feature=player_embedded&v=5M--xOyGUX4"><span style="font-size: 12pt; line-height: 115%;">https://www.youtube.com/watch?feature=player_embedded&v=5M--xOyGUX4</span></a><span style="font-size: 12pt; line-height: 115%;">), what her secret was to having Rachel be so amazing (and Rachel is very awesome!) Was it a therapy? A supplement? What was it? Her answer was “Inclusion, Inclusion, inclusion. We take her with us everywhere; she does everything we do. She’s been in a typical classroom.” That’s pretty much what we have done as well. I also think that this article is the best one I’ve read on the things that can really cause issues with individuals with Ds. It says it is about behavior, but it is really about much more than that. It is dense with information, but has probably guided me as much in Violette’s early years and learning as anything I have seen (and I’m a research geek, so that is saying a lot!): <a href="http://www.down-syndrome.org/reviews/2076/">http://www.down-syndrome.org/reviews/2076/</a></span></div>
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<b><span style="font-size: 12pt; line-height: 115%;">Random question: What’s your favorite College memory?</span></b><span style="font-size: 12pt; line-height: 115%;"> </span></div>
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<span style="font-size: 12pt; line-height: 115%;">I had a great time in college, but I have to say being at The Snook hotel in Sanibel over Spring Break when I was in college with my BFF’s Anne, Alex, Becki, Shelly and Tracey was probably the best. We drove Shelly’s mom’s van down, stayed with 6 of us in a room built for 4. Didn’t count on a tile floor to sleep on at night, lol, so we ended up splitting time on the van floor. Probably the only time in my life I was tan. All we did was laugh for a week. Also we had to stay awake coming home overnight, so I forced the other 5 to learn our college fight song and toast. They are always very thankful for that night every time we have a reunion and our group is the only one who knows those songs, lol!</span></div>
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<span style="font-size: 12pt; line-height: 115%;"><strong>If you feel like it’s not too personal, can you share your diagnosis story?</strong></span></div>
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<span style="font-size: 12pt; line-height: 115%;">Check out Missy's diagnosis story at the link below. </span></div>
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<a href="http://yomammamamma.blogspot.com/2010/01/little-history-of-my-pregnancy-with.html"><span style="font-size: 12pt; line-height: 115%;">http://yomammamamma.blogspot.com/2010/01/little-history-of-my-pregnancy-with.html</span></a></div>
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<span style="font-size: 12pt; line-height: 115%;">[FROM ME]</span><br />
<span style="font-size: 12pt; line-height: 115%;">Thank you, Missy for being such an strong leader and for all you do for the Eastside Mom's group! Missy is also a co-leader/moderator for the babycenter.com Down Syndrome Pregnancy Board (click <a href="http://community.babycenter.com/groups/a14515/down_syndrome_pregnancy" target="_blank">HERE</a> for the link) as well as the creator of the <a href="http://www.facebook.com/?ref=tn_tnmn#%21/groups/305072169601341/" target="_blank">Down 21 Moms (Lose It!)</a> Weight loss Facebook Page for Moms of kids with Down Syndrome. She is a rock and a great wealth of information (and pretty freakin' fun, too!)</span><br />
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<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://1.bp.blogspot.com/-coBhZoLP9rc/T4zbl5pa8tI/AAAAAAAAADM/--YVj2edLCU/s1600/Missy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" oea="true" src="http://1.bp.blogspot.com/-coBhZoLP9rc/T4zbl5pa8tI/AAAAAAAAADM/--YVj2edLCU/s400/Missy.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Missy with two of her three daughters: Lilianne (top) and Violette (bottom)</td></tr>
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com4tag:blogger.com,1999:blog-856234429053006246.post-24689493896499482632012-12-13T18:51:00.000-08:002012-12-13T18:51:06.148-08:00Christmas HopeAs Christmas draws nearer, I can't help but be overwhelmed with many emotions and thoughts. The journey we have been on the last year has been a whirlwind. To think that this time last year I had just buried my father, was going to start a new job on the tail end of finishing graduate school, and Wyatt wasn't even sitting up yet on his own. <br />
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Now, a year later, so much has changed. Wyatt is near walking, I'm working in a district that I will, hopefully be in for the long run and I've come to feel peaceful regarding my father's passing. And as I want to write all these happy, encouraging things today, I want to really be honest. I have been back and forth feeling hopeful about things lately. I have always been hopeful overall, but sometimes life is just overwhelming. I'm overwhelmed. I need some Christmas hope.<br />
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I know we are relatively stable now in our jobs and finances - things are tight, but not unmanageable - so what could I possibly need to feel hopeful about? I think we all have those moments of maybe not feeling hopeless, but hope lacking. It's that feeling at the end of a hard day where you sit down, sigh and feel a little defeated. Eventhough we've come a long way, I still sometimes see that mountain in front of me. I really hope Wyatt walks soon. I really hope I get better at my job. I really hope my husband succeeds at his new job. I really hope we can get out of this house sooner than later and I really, really hope I get the honor of having another baby someday. And with all that said, I really, really, really hope I can also learn to be present more in each and every day!<br />
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I'm not looking for a pitty party here, just a little sprinkle of Christmas hope.<br />
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The magic of Christmas and the joy that the birth of Jesus brings every year seems to come at just the right time. We all get so busy, so stressed, so over run with responsibilities and the rush of the end of the year. I think that the end of the year makes us think about all that we have not done yet and what we hope to do next year. Every Christmas, for me is almost a reset button. I get all worried, all distressed, then the celebration of the birth of the Christ child just seems to wash it all away. I'm ready for that moment now. I'm ready for rejuvenation. I'm ready for that peace, that joy and that hope the Christmas celebration brings! <br />
<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-26901036359803510452012-11-19T06:33:00.002-08:002012-11-19T06:33:51.314-08:00HomeWe go to Crossroads Community Church. It's considered a "mega" church, but it feels much smaller to me. I really love it there and so does Josh and the kids. Recently, they started a church-wide series and study about Home. It has really got me thinking. <br />
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Our study book starts with this quote:<br />
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"What if it were possible to feel completely at Home, no matter where you were? What if you could always feel understood, valuable, protected and loved - like a child who is treasured? What if you could let down your guard, get recharged, find rest and be filled with bravery and hope? And what if you could experience that place right now, right here - and every single day from now on? No matter where you are right now, you can. <br />
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Wow. What a thought. Each time I read it, I get a little choked up. <br />
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When I think about what it feels like to be home, I'm transported back to my childhood, to my family home. I have to be honest: it was ideallyic. Partly because I was a little shielded by the "real world" becuase of not being so "connected" as kids are today, but mostly because I had a fantastic family who always made me feel safe, taken care of, loved and secure. We had woods in which to play, a pony in our back yard, my grandparents living behind us and a dinner bell to call us home when it was time to call it a day. My parents were married for 40 years (and lived on the same property since they got married) before my Dad died; my grandparents married a whoipping 67 years before Grandma passed away.<br />
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Norman, where were you when we needed a family portrait?! <br />
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I call it my abnormally normal childhood. I reconize that I am in the minority. I don't tell you this to boast or brag (although I'm admittedly immeasureably proud to have come from this family). But I say it because I have great feelings of inadequacy sometimes. <br />
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How can I ever live up to this for my own kids?!!?<br />
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I live in a smaller townhome, that needs more cleaning and fixing than I have time or resources. I have a 10 x 10 back yard for my kids...and there in no pony in sight. My mother, the only grandparent, lives 30 minutes on the other side of the city. I do not have a dinner bell, and it would likely freak the neighbors out if I did. We will probably move a number of times before we are ever able to settle into a more long-term house. <br />
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So with all this, how do I create Home for my family? When I really started to think about it. I noticed that, not only was I focusing on all the things<em> </em>I didn't have or didn't have control over, I was also focusing on all the actual THINGS. I pondered: did the security I felt as a child come from the Pony, or the woods or even the dinner bell? NO! Those are all things that were just plesant tangible reminders of the joy and happiness I felt as a kid. <br />
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I reread the quote from our book and realized: I WAS TREASURED! Not only by my parents and family, but on a level I also knew I was treasured by GOD as a child!<br />
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I want to be sure that my kids feel the same level of saftey, care, love and security that I did. I want them to feel equally (or even more) TREASURED! That doesn't mean that I have to live on a farm and have all the things I did as a kid. I can provide my children the gift of feeling treasured through my actions, love and examples; not just through physical things. I always have known that things don't buy happiness, but for some reason, this was na Oprah "ah-ha" moment for me. Those more tangible things may come for our kids, as we regain control of our finances after Grad school and a 100K medical bill (the latter of which is thankfully nearly gone thanks to insurance and the Bureau for Children with Medical Handicaps). Because I do want them to benefit from enjoying some things in life. But even if the things don't come, I can still show them how treasured they are!<br />
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Eventhough I will (hopefully) not be living in my current home in 20 or 40 years, I can still make a beautiful Home for my children.<br />
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I visited my Mom this past weekend. Mom and I were talking about how surreal it is sometimes for me to see my own children at her house. I get emotional about it sometimes because it makes me feel so happy. I'm thrilled that my kids get to experience that home like I did. They will have some of the same memories of playing there that I do. However, in thinking about all these things, I realized that the home is not the same: Dad is gone, the neighbors have changed, the property is smaller and the pony has long been put out to pasture. But it still feels like home because I am surrounded by the peace of God and the treasure of what is my family. And I think that is the most important part. <br />
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I am Home there, not because of what things were there, but because we were a family.<br />
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So, all things considered, now I'll try and relax and work on building my family Home, no matter where I am or what I have. We can do lots of things in our house to support our kids in feeling treasured, like reading stories, playing under tents made from bedsheets, going to a Reds game together in the cheap seats, playing in the snow, baking cookies, playing at the park or just simply eating dinner together. Above all, my parets gave me time and experiences, not that cost a forturne financially, but that were ultimately priceless in meaning. <br />
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This, I feel like I can certainly live up to. And no matter what your family looks like, what you have or where you are, you can do this, too. Teach your children what it's like to be treasured so that they can treasure others as well. If we all made each other feel treasured - no matter our gifts and abilities are - what a beautiful world that would be!<br />
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Ahhhhh.....HOME.<br />
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-70900611270430233152012-11-02T20:53:00.000-07:002013-01-22T10:39:59.314-08:00Meet TikaI have met so many [EXTRA]ordinary Friends over the past 20 moths! (Hard to believe Wyatt is that old now!) I want you all to meet them, too! So I'm going to feature an [EXTRA]ordinary Mom each month (or at least try!<br />
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First up is one of our fearless leaders of the Cincinnati Eastside Mom's group, Tika. I sent her a list of questions and here is her story:<br />
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<span style="font-size: 12pt; line-height: 115%;"><u>First Name</u>:
Tika</span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>Children</u>:
Leightyn (3) (Ds) and Bayli (9 months)</span></div>
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<u><span style="font-size: 12pt; line-height: 115%;">Do you work
or volunteer? IF yes, what do you do (besides being a great Mom!)? </span></u></div>
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<span style="font-size: 12pt; line-height: 115%;">I work from
home (or the pool, zoo, aquarium, or wherever else me and the kids might be)
doing the filing, paperwork, and answering the phones for our online business.
I also serve on the Board of Directors at the DSAGC and head the Eastside Playgroup.
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<span style="font-size: 12pt; line-height: 115%;"><u>How many
years have you been involved with the Eastside or Extrordinary Friends Mom’s
group</u>? </span></div>
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<span style="font-size: 12pt; line-height: 115%;">I begged Martha (our Early Matters Coordinator for the DSAGC) to start the Eastside group after moving here from Columbus
in 2009. We had a Mom’s dinner group there and a small group that met once a
month with speakers and socials for the families. We did not have any other
family or friends here locally so this is something I really wanted for us.
Melissa Skavlem and I started the group in 2010 and our first meeting was in
Feb. of that year! Over two years later and we are still going strong. This group
is my baby and I could not be prouder of what it has grown to be. </span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>Why you like
being a part of this group</u>? </span></div>
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<span style="font-size: 12pt; line-height: 115%;">All of the best information I have ever been given
about Down syndrome has come from other families! Now that we are almost 4
years (hard to believe my baby will be 4!!) into this journey I love being able
to share what I have learned with the families who have just started their
journey. Like I mentioned we do not have family in town and this group has
become my family. We have made many life long friends by being a part of this
group. </span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>Best advice
for new parents of a child with T21</u>: </span></div>
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<span style="font-size: 12pt; line-height: 115%;">BREATHE!!!! The most important thing you
can do for your new baby is love them, everything else will come in time. The
future can be scary even in the best of circumstances but especially when you
have a baby with special needs. Just focus on today and live in this moment!
You will soon see that you are stronger than you ever knew you could be. Your
child will teach you so much more than you can ever teach them so just hang on
and enjoy the ride; the ups, the downs, and all the in betweens!</span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>Greatest joy
in having a child with T21</u>: </span></div>
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<span style="font-size: 12pt; line-height: 115%;">The amazing connection that you have with other
families who have a child with Ds. There is something about that extra
chromosome that allows us to make an instant connection and fosters the
beginning of lifelong friendships. Leightyn is the light of my life and has
taught me to celebrate every accomplishment and to live in the moment! If the
world could only see things through Leightyn’s eyes it would be a much better
place. She greets EVERYONE with a smile, wave, and usually a hug too! Her hugs
are the best thing in this entire world!!!</span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>What is one
thing you’ve learned personally from your journey that you would like to share
with other [EXTRA]ordinary Friends</u>?</span></div>
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<span style="font-size: 12pt; line-height: 115%;">It is easy to feel like you are not doing
enough for your child. With all of the doctors, appointments, therapy, etc. we
can all get overwhelmed at times. What your child needs most is your love and
if you are giving them that then they will be just fine. Your child will reach
their milestones when they are good and ready and not a second sooner so try
not to put pressure on them or yourselves. That sweet moment will come in time
so sit back and wait (I know easier said then done) and be ready to clap,
scream, hug, kiss, and even cry when the moment comes! </span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>Favorite
Therapy Trick/Tool</u>:<a href="http://www.blogger.com/blogger.g?blogID=856234429053006246" name="_GoBack"></a> </span></div>
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<span style="font-size: 12pt; line-height: 115%;">The best tip I have when it comes the
therapy is to make it fun and try to incorporate it into your everyday routine.
I am NOT saying make a point to have therapy every day, that would get
exhausting, but remember that things you already do can be therapy too </span><span style="font-family: Wingdings; font-size: 12pt; line-height: 115%;">J</span><span style="font-size: 12pt; line-height: 115%;"> For example we had a picnic lunch it
the fort yesterday. Climbing the stairs to get in was physical therapy. Signing
and saying the colors of the different items we were eating was speech therapy.
Using her utensils to cut things up and eat, drinking from a straw, and then
cleaning up and putting things back into our bag was occupational therapy. All
three therapies in one thirty minute lunch! Use your child’s interests to make
therapy personalized and more fun for them. If they like Mickey Mouse use that
as a tool. It can be a reward or a motivator. </span></div>
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<span style="font-size: 12pt; line-height: 115%;"><u>Random question</u>: </span></div>
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<span style="font-size: 12pt; line-height: 115%;">If you could see 24
hours into the future what would you do with this ability? I would make sure
that I actually shower, wear something other than sweats, and put on a little
makeup when I knew I would be seeing someone I know while out running errands
LOL! Knowing what numbers to play in the loto would be nice too. Money cant buy
happiness but it can buy clothes, shoes, and hair bows which can get expensive
when you have two little girls </span><span style="font-family: Wingdings; font-size: 12pt; line-height: 115%;">J</span><span style="font-size: 12pt; line-height: 115%;">
</span></div>
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<span style="font-size: small;"><u>Tell Me About Your Diagnosis</u>: </span></div>
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<span style="font-size: small;">We chose not to do any prenatal testing. All of my
ultrasounds and routine screenings never indicated that anything was a concern
with our baby. I had an easy pregnancy and labor. When Leightyn was born she
was not breathing and the room quickly filled up with hospital staff as they
began to work on her. I heard one of the nurses ask another doctor, “Are you
thinking what I am thinking?” to which they replied “Yes.” All I could think
was that they thought my baby was going to die or that she was already dead.
Down syndrome was not even a thought. After what seemed like eternity, although
really only minutes, she was crying and breathing on her own. The nurse came
over to me and told me that they thought our baby might have Down syndrome
based on some of the physical characteristics they were seeing. When they
handed her to me, I knew she did, although that would not be confirmed for
several days. I fell in love with her and instantly felt the need to protect
her. This momma bear was born that day as well. She spent her first few hours
in the room with me but it soon became apparent that her heart might be a
concern and she was taken to the NICU. An echo two days later confirmed their
suspicions and made a Down syndrome diagnosis more likely. She had a complete
unbalanced AVSD. At five days old she went into heart failure and was
transferred from her birth hospital to Nationwide Childrens Hospital where she
spent another week. Sometime during that stay her diagnosis was confirmed but
we already “knew” although up to that time there was still a small sliver of
hope that we were all wrong. </span></div>
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<span style="font-size: small;">The Down syndrome diagnosis came as a shock but it was not
nearly as scary as the heart defect was for me. I always say that her AVSD was
a blessing in disguise when it came to the acceptance of having a child with
Down syndrome. Suddenly Ds was not that scary at all and instead something we
could manage. The heart defect could actually kill my baby and it almost did
Down syndrome could not. It really helped me put things into perspective. Down
syndrome was a part of Leightyn but it was not all of her, she was my beautiful
new baby girl, and I loved her to pieces!</span></div>
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<span style="font-size: small;">When I was 13 my youngest sister was born at 26 weeks but
measured only 24 weeks gestation. She weighed only 1 pound and 8 ounces at
birth and spent several months in the NICU. I think this was also key in me
adjusting so quickly to Down syndrome. I had been in the NICU before and had
seen all of the monitors, tubes, chords, etc. I also knew about Help Me Grow
and therapy. I had seen my little sister have many ups and downs in her first
year health wise and yet she had grown into a mostly healthy and happy child. Another
reason I was able to adjust to our new normal quickly.</span></div>
<div class="MsoNormal">
<span style="font-size: small;">It also helped that Leightyn was my first born so I did not
have another child to compare her to. She met her milestones on her timeline
and it really wasn’t too obvious to me when she was behind as a baby. She did
things when she was ready and in her own way and I didn’t know any different! The
extra “work” (therapy, check ups, weekly appointments, surgery) was our normal.
</span></div>
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<span style="font-size: small;">This is not to say that it wasn’t hard at times, it was. I
cried, I worried, and I was afraid of the future. I certainly never thought I would have a child with Down syndrome
at 24, but I also never expected to have two beautiful redheaded baby girls
with light colored eyes either but I did! There are still times when I cry,
worry, and fear for the future, but that is what I have all of my amazing
friends and family for, to support me on those days. Down syndrome is a part of
our lives and we have chosen to embrace it. Today there is so much more joy and
love than there is pain and fear. Everyone has a different journey and that is
okay. This is a glimpse into mine! </span></div>
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<span style="font-size: small;">From me:</span></div>
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<span style="font-size: small;">Tika is amazing and I'm so glad to call her my friend. Surely a wonderful example for us all!</span></div>
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<span style="font-size: small;"> Here is Tika with her beautiful girls!</span></div>
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[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-17419620527164108492012-10-04T11:30:00.002-07:002012-10-04T11:30:33.970-07:00The [EXTRA]ordinary Face of DisabilityI'm just going to put it out there:<br />
<br />
Is it just me or does it seem like individuals with Down syndrome are the face of disibility? <br />
<br />
Everywhere I turn, I notice that when disibility is portrayed in the media, they often use an individual with Down syndrome. I open up my mailbox, and bam! There is a boy in the Target ad with Down syndrome. <br />
<br />
There have been a number of stories in the news regarding this topic and people are paying attention. Is this an [EXTRA]ordinary phenomenon or just good marketing? Should the use of photos of children with a disability in marketing be a big deal? Well I guess it was a big enough deal for me to write a post about! <br />
<br />
I do see lots of individuals with Down syndrome in the media. But sometimes I question my obviously skewed perspective. Yes, I admit, I have a skewed perspective. Let me explain...<br />
<br />
You know when you buy a new car, and all of a sudden you see that car <em>everywhere</em>? Or if you put your house up for sale, suddenly it seemes like every house on the block has a sign in front of it? Its because suddenly, these things become personally related to you and you notice them more. This is how I think my perspective is skewed. <br />
<br />
Hence, I revert back to my first question: Is it just me?<br />
<br />
I'll answer my own question: I think it is and it isn't. I think I'm noticing it more because of Wyatt, but I also think the frequency of media using individuals with a disability in the media is rising. <br />
<br />
Look at the following examples of recent advertisements or news article samples featuring individuals with Down syndrome. <br />
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<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/-zu33Ha8pB_s/UGxLpIxhPAI/AAAAAAAAAKk/BgK1TiheqMU/s1600/DC_Kids_Ds_ad.bmp" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" mea="true" src="http://3.bp.blogspot.com/-zu33Ha8pB_s/UGxLpIxhPAI/AAAAAAAAAKk/BgK1TiheqMU/s1600/DC_Kids_Ds_ad.bmp" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This little cutie is "the face" of DC Kids Swimwear for the 2012-2013 season campaign</td></tr>
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<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://2.bp.blogspot.com/--MxSW7T5Qxw/UGxLqJw43PI/AAAAAAAAAKs/hrZyoNCFLl8/s1600/Pretty_Girl_Ds_ad.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" mea="true" src="http://2.bp.blogspot.com/--MxSW7T5Qxw/UGxLqJw43PI/AAAAAAAAAKs/hrZyoNCFLl8/s1600/Pretty_Girl_Ds_ad.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This princess was in the news for her modeling prowess</td></tr>
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<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://1.bp.blogspot.com/-GLO_10aRHeE/UGxLrG0oQtI/AAAAAAAAAK0/edn4QgoPsk4/s1600/Target_Ds_Ad.bmp" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" mea="true" src="http://1.bp.blogspot.com/-GLO_10aRHeE/UGxLrG0oQtI/AAAAAAAAAK0/edn4QgoPsk4/s1600/Target_Ds_Ad.bmp" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Everyone knows the handsome boy from the Target ads</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://1.bp.blogspot.com/-eCY7-4EDRnA/UGxLsePD4wI/AAAAAAAAAK8/0mlDX6xUWTQ/s1600/ToysRUs_Ds_ad.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" mea="true" src="http://1.bp.blogspot.com/-eCY7-4EDRnA/UGxLsePD4wI/AAAAAAAAAK8/0mlDX6xUWTQ/s1600/ToysRUs_Ds_ad.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Toys-R-Us has featured a kid with an extra chromosome more than once</td></tr>
</tbody></table>
<br />
And don't forget <a href="http://extra-ordinaryfriends.blogspot.com/2012/04/pampers-commercial.html" target="_blank">The Pampers Commercial</a>!<br />
<br />
The use of kids with Ds in the media is out there, so maybe it's not just me. I think I notice it more, but I also think that Down syndrome, in a way is often used as the face of disability. The first reason for this I can think of is that the facial characteristics of an individual with Down syndrome is nearly universally recognized. Yes, our children look like us (anybody who knows Wyatt can attest to the fact that he looks more like me and Josh than he looks like any random kid with Ds). But there is also the fact that they do have some overwhelmingly common and identifiable facial features. So, because of this, it may be poingant for an advertiser to use a person with Ds because it is a more commonly physically identifiable disability. <br />
<br />
The other reason I think advertisers use our kiddos is to represent happiness. This is a good and bad thing, I think. We parents of children with an extra 21st already struggle fighting the generalization that <strong><em>all</em></strong> our kids are happy <strong><em>all </em></strong>the time. This fact is simply not true. I'm not saying that they are not happy, I'm just saying they may not be all the time happy. I mean, you might be happy with you're life, but are you happy all the time? I think not. It is (and let me reiterate thie ) THE SAME with kids with Ds. <br />
<br />
Don't believe me? Come to my house. I'll show you Wyatt's alternative superhero personality: captain fussypants face.<br />
<br />
Finally, I think that our kiddos are used in media because we advocates are doing our job, and the people who came before us <em>really</em> have done their job. We try to advocate so much for our kids. We want to have them live as 'typical' of a life that they can. People before me have paved the way so that we can see a kiddo in a Target ad who has a disability and it be cool. The disabled population has a place in our society and countless advocates have created that spot. And the overall population is seeing the beauty of our kiddos through the [EXTRA]ordinary faces of those with Down syndrome. Just as people of different races should have been and still be represented in the media, so should individuals with disability. Afterall, they are an amazing part of our community.<br />
<br />
Did you know that the <span style="font-family: LucidaSans;"><span style="font-family: LucidaSans;">Census 2010 reported a</span></span>pproximately 56.7 million people (or 18.7 percent) of the civilian noninstitutionalized Population in the United States (about <span style="font-size: xx-small;"><span style="font-size: small;">304 million), had a disability?</span> </span><span style="font-family: LucidaSans;"><span style="font-family: LucidaSans;">(according to <a href="http://www.census.gov/">www.census.gov</a>) </span></span><br />
<br />
<span style="font-family: LucidaSans;"><span style="font-family: LucidaSans;">To put that statistic in perspective, let's look at the percentage of people who are Black/African American either alone or in combination with another race, in the US: </span></span><br />
<br />
<span style="font-size: small;">The 2010 Census showed that out of the total population, 38.9 million people (or 13 percent), identified as Black alone. In addition, 3.1 million people, or 1 percent, reported Black in combination with one or more other races. Together, these two groups totaled 42.0 million people. Thus, approximately 14 percent of all people in the United States identified as Black, either alone, or in combination with one or more other races. (Also from <a href="http://www.census.gov/">www.census.gov</a>).</span><br />
<br />
That means that there are 4% more people reported with a disability than there are people who are black/multi-racial in the US.<br />
<br />
I'll be honest, that one kinda blew me away. <br />
<br />
So why shouldn't we see people with disability in the media? And I'm not talking about just seeing our kids, brothers, sons or cousins in a pamphlet for toys for "specially abled kids" or in a medical equipment ad in their wheelchair. We should see them in more frequently because they are as much a part of our rich culture and history as anyone else. Personally, I'm glad I'm feeling like we are seeing our kids and adults with Ds more and more! Because I think it is a beautiful honor to be such an [EXTRA]ordinary face for persons with a disability. <br />
<br />
So Macy's or Target, McDonald's or Subway, if you call to book Wyatt for your next major ad campiagn, I'll pick up the phone. Because who wouldn't want to see this kid when they open up the mail?<br />
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And just to add, you can use Eden, too cause she is equally gorgeous : )</div>
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Just sayin'</div>
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HAPPY ADVERTISING!</div>
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-58856029408623493192012-09-21T08:56:00.003-07:002012-09-21T09:06:15.739-07:00Baby FoodieMany people ask me about food. No, not big people food. Baby food. <br />
<br />
And, as it was never my intent to become an amateur Baby Foodie, it just kind of happened. <br />
<br />
See, my kids are great eaters for the most part. We are able to give them a great variety and they don't really complain. They have preferences and things they definitely don't like, but overall the only struggle we have at mealtimes right now is getting Eden to eat her dinner in under an hour (holy slow poke!) and getting Wyatt to stop smirking at me while he chucks food over the edge of his high chair onto the floor. Sneaky little stinker.<br />
<br />
So, after many requests and my own failed attenpts to put together a Baby Food seminar for our East Side and Extraordinary Friends Mom's group (one of these days, I'm telling you, it'll happen). I thought at the least I'd jot down some good points here on the topic. <br />
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So, how do you create good eaters? I say 'create' because I do think parents have great influence on children's eating habits.<br />
<br />
First, I think it starts with educating yourself. My sister made alot of her own baby food for my niece and so it all started when I got some basic tips and information from her. One of the best resources she offered me was the <a href="http://www.superbabyfood.com/" target="_blank">Super Baby Food Book</a> by Ruth Yaron (the website is nice, but you can find it used on Amazon for cheap <a href="http://www.amazon.com/Super-Baby-Food-Ruth-Yaron/dp/0965260313/ref=sr_1_1?ie=UTF8&qid=1348234825&sr=8-1&keywords=the+super+baby+food+book" target="_blank">HERE</a>). This is a great resource for me because Ruth really details when to introduce certian foods. And her list goes WAY beyond introducing peas and carotts. And once I started really reading about feeding my baby and how a heathy diet early on can support brain development, self feeding and create life-long heathy eating habits, I was sold on making this a priority in my kids lives. So talk with other [EXTRA]ordinary Mom's and read whatever you can get your hands on. I highly suggest you get Ruth's book.<br />
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The second important part of creating a good eater is VARIETY. That means making <em>your</em> <em>own baby food</em>. Today's baby food market has really taken off compared to four years ago wehn I was starting to feed Eden. Now, you can get those Organic baby food pouches that have a built-in straw-type thingy (yes, I'm sure that's the technical term) and baby food comes in lots more variety than ever before. I admit that I do buy those pouches, mostly for convenience, but the majority of my kids' food came right from my little food processor. So, even with those pouches on the market, you still want to make your own, because those things are expensive! Whew! Usually over $1 an ouch. I mean pouch... I average a 50% savings per serving when I make my own food. Sometimes more, sometimes less depending on produce costs and what I buy. And as saving money is awesome, I revert back to my initial point of variety. Variety is super important. If you feed your child the same things over and over again, they will never get used to trying new things and experiencing new tastes. So you have to offer variety. My kids ate beans, kale, spinach, brussel sprouts, winter veggies, summer veggies, every kind of vegetable and fruit I could get my hands on! And that's easy sometimes when they are a baby, but the secret to variety is DO NOT STOP! Once you get past the baby phase and you're moving into toddler phase, don't stop the variety. You will undo all the hard work you just put in over the last 6-12 months. You must be purposeful about presenting variety in your children's diet. That means ythey have to try new things. And on that note, please don't let one bad experience keep you from serving a food again! It takes anywhere from 10-20 times for a taste to be developed! Keep trying it again and again. Eventually, they might like it!<br />
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Now that you're planning on making oyur own food and keeping your kids' diets full of variety, you have to make sure you have the right tools. Please, don't spend a ton of money on those commercial baby food making sets you see on TV. It's a waste, IMHO and I have a much easier and cheaper solution. This idea is in Ruth's book, but I used the Freezer cube method for storing baby food. Here's how it works: I use a small mini food processor to puree food. I can make food super smooth with this or I can pulse it to make food chunkier as time goes on. With Wyatt, this was very important. Kids with Ds can have low tone, which makes eating a challenge sometimes. Since I was making my own food, I could control the consistency of foods for him so that I could find the best blend for his ability, so he wouldn't choke and so that food wasn't just falling down his throat. I could add water or other foods to the baby purees to help thicken or thin a food so he could be successful in his eating. So many baby foods are just one consistency. This is not helpful when trying developing those all-important mouth muscles for clarity of speech later down the road. <br />
<a href="http://www.amazon.com/Cuisinart-Blender-Chopper-Attachments-HB-154PC/dp/B000GHF3V8/ref=sr_1_7?s=kitchen&ie=UTF8&qid=1348236817&sr=1-7&keywords=Braun+hand+Blender" target="_blank">HERE</a> is something like the style mini-processor that I used, but they don't sell my version anymore.<br />
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Once you start blending, you need somewhere to put all that food. So go get yourself some basic but sturdy ice cube trays. One serving of baby food = one cube. Easy peasy. So you put your food in the trays and freeze. Then you store the cubes either in a zip lock type freezer bag, or if you are environmentally minded, you can put them in reusable containers that are meant for the freezer. When you are ready to feed your baby, just grab a cube and defrost. They are great on the go. Frozen in the morning, thawed by lunch! It's a great method, too because you can make large batches and not make food so often yet keep a large supply of variety. I used to make food on Sunday nights. It would take me about an hour every Sunday to keep my supply up with good variety. <br />
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Here's a few pictures of the process and my foods:<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-Z8FtMTS9PAs/UFx5BOS96mI/AAAAAAAAAI4/jnQIF1kvHgU/s1600/Kale.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" hea="true" height="320" src="http://3.bp.blogspot.com/-Z8FtMTS9PAs/UFx5BOS96mI/AAAAAAAAAI4/jnQIF1kvHgU/s320/Kale.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cooking Kale with onions and garlic (yes, my kids eat this)</td></tr>
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<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/-21CGAd-DQW4/UFx5EGOsNkI/AAAAAAAAAJA/kN0okEWuxys/s1600/Zucchini.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" hea="true" height="320" src="http://3.bp.blogspot.com/-21CGAd-DQW4/UFx5EGOsNkI/AAAAAAAAAJA/kN0okEWuxys/s320/Zucchini.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Freezer Cube method with fresh veggies - just LOOK at that COLOR! This was orginic zuchini and yellow squash grown out of a friends garden!</td></tr>
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<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://2.bp.blogspot.com/-sLxZIlUaymY/UFx5Gja9C6I/AAAAAAAAAJI/Vpjqiedhn6g/s1600/Watermelon.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" hea="true" height="239" src="http://2.bp.blogspot.com/-sLxZIlUaymY/UFx5Gja9C6I/AAAAAAAAAJI/Vpjqiedhn6g/s320/Watermelon.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watermelon puree - have you EVER seen watermelon baby food sold in stores? I haven't.</td></tr>
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<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://1.bp.blogspot.com/-0x6uMGsasw0/UFx5JExiiwI/AAAAAAAAAJQ/Bs3NbGUKrwk/s1600/Asperagus.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" hea="true" height="320" src="http://1.bp.blogspot.com/-0x6uMGsasw0/UFx5JExiiwI/AAAAAAAAAJQ/Bs3NbGUKrwk/s320/Asperagus.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Next stage asperagus slices. Soft, gumable peices that are easy to chew. And I can even just throw in a few cubes to the adults dinner as an added bonus!</td></tr>
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<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://2.bp.blogspot.com/-Q34nOlC-CxE/UFyLXHaPU2I/AAAAAAAAAKQ/cFD4BhshydU/s1600/Bags.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" hea="true" height="240" src="http://2.bp.blogspot.com/-Q34nOlC-CxE/UFyLXHaPU2I/AAAAAAAAAKQ/cFD4BhshydU/s320/Bags.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here is a picture of my freezer, with all the zip-lock bags of baby food. Each bag is a different food!</td></tr>
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<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/-J5q9sNEBZhM/UFx52hL1zII/AAAAAAAAAJg/Dg06bgm-9A8/s1600/Bean_Soup.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" hea="true" height="234" src="http://3.bp.blogspot.com/-J5q9sNEBZhM/UFx52hL1zII/AAAAAAAAAJg/Dg06bgm-9A8/s320/Bean_Soup.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Now my kids eat amazing this, like this homemade organic bean soup with shredded cheese and guacamole on top. SO GOOD!</td></tr>
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OK, so please don't think I am this picture of pure health. Yes, my kids eat chicken nuggets (although mostly Morning Star Farms, so they are not really chicken, but we do visit Wendy's on occasion). And Eden loves Frency Fries and Wyat could eat a whole pint of ice cream (right along with me). But for the most part, they do eat great. <br />
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I think the final pieces in getting your kids to eat great is modeling and setting standard. If you eat crap, so will they. I was shocked when I was eating a salad and Eden asked for some one day. I laughed and gave it to her, thinking, yeah right, she's going to spit it out! Much to my surprise, she loved it and said something to the effect of "see Mommy, I eat like you!" Awwww. So model healthy eating for your kids, then set what I call the "I'm not a short order cook" standard. This is the final piece of the good eaters puzzle. I don't make seperate meals for the kids. Sometimes for lunch, sure, OK, they get peanut butter and jelly and I get a turkey sandwich or something. But overall they get what we eat. And if they refuse, well...tough luck, you're gonna be a hungry kid. Now we've been a little more leanient with Wyatt here and there because of his issues with weight gain. I will make a more hearty, calorie-heavy version of what we are eating for him sometimes. Thankfully, over the last month or so, he's really gained, so we are reverting back to 'all-in' meals. But don't make it harder on yourself. If you set the standard early and model good eating yourself, then you will have less trouble later!<br />
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I also want to take a moment here to discuss how Wyatt came to start feeding himself early. Self-feeding and eating solids can be challenging for kids with Ds, thus people also ask me about how Wyatt came to be such a good eater. For Wyatt, I find that his learning needs to be much more purposeful compared to Eden's ability to self-discover. Let me explain: Eden naturally began feeding herself and need little, what we call in the ed world, direct instruction. Wyatt needs direct, purposeful instruction. At 9-10 months, I would put him in the high chair and sit directly in front of him, with Puffs or Cheerios spread out on the high chair tray. Then I would slowly and very over-dramatically put a puff in my mouth and chew. Then say "yummy! eat!" and sign eat. Then I would put my hand on top of his, pick up a puff and put it to his mouth and simutaneously make chewing motions myself and say "Wyatt eat!" I followed this routine for at least one meal a day utnil at about 12 months, he just started doing it himself. And I felt really silly doing it so dramatically, but now, he's a great eater, so it obviously worked! We started working on the spoon recently, but I'm not overly concerned about pushing that right now. I just can't deal with the mess some days, haha!<br />
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<a href="http://4.bp.blogspot.com/-Dt-Ndjf3a3c/UFyHEquVCHI/AAAAAAAAAJ8/XfuVw9S9Z8M/s1600/Spaghetti.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hea="true" height="320" src="http://4.bp.blogspot.com/-Dt-Ndjf3a3c/UFyHEquVCHI/AAAAAAAAAJ8/XfuVw9S9Z8M/s320/Spaghetti.jpg" width="238" /></a></div>
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He's interested, but even Eden didn't master the spoon until well after the age of two, so it's not a priority for me.<br />
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OK, I know this is a lot of info so let's review:<br />
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- Give your kids Variety<br />
- Get the right kitchen tools<br />
- Make them LOTS of great food yourself<br />
- Continue variety through the toddler years and beyond<br />
- Set the standard for healthy eating through modeling and don't be a short order cook<br />
- For kiddos who may need a little more support, offer direct, purposeful instruction with some great modeling (and if you don't feel silly and over the top doing it, you're probably not getting their attention)<br />
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It takes practice and time to get some of these things down. Over time you'll get it and figure out what works for you. I have found this Baby Foodie journey to be an enlightening and rewarding experience and I hope you do too! <br />
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<strong>Please SHARE tips of your own below in the comment section or ask me if you have any specific questions on how to make your own food!</strong><br />
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HAPPY EATING!<br />
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0tag:blogger.com,1999:blog-856234429053006246.post-3272737771844053042012-09-02T13:57:00.000-07:002012-09-02T13:57:05.372-07:00What It Is, Is...My husbands family has this long-running inside joke about the phrase 'what it is, is..." It's a phrase commonly used when trying to explain something that is more complicated. Because sometimes we can't always put our finger on what, exactly it IS.<br />
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The phrase is often an used as an interlude into something that either the speaker isn't communicating very well, or a difficult topic. And ometimes, we just don't know what the heck we are talking about and break it down with a "you see, what it is, is..." The phrase is usually followed by a unanimous chuckle and then a regrouping to get to the point.<br />
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I've had a "what it is, is" week. And I'm not exactly sure what it IS. What ever the IS is, it's had me up and down all week.<br />
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First, my daughter is starting pre-school this week. I thought weeks ago that I would be completely fine with it. Little did I know that when I went to drop off her paper work and see her room, I walked in and nearly cried. I reached out to my friends looking for some comfort that it gets easier, this letting them go thing, and unfortunately, the overwhelming majority said 'no.'<br />
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You see, what it is, is, when I walked into the room, I just thought about how much she will absolutely love it; and then I thought, she's never going to need me again! I could just see her, wistfully waving goodbye like "see ya later, Mom!" and never looking back. I know (at least hope) that we still have a long time toghther, but it just felt so overwhelming to me. When I got to the car, I streamed tears the entire way home. And then we went to her open house, and I sat there thinking about how this is good and fine. We left, and again, I sat there in the car in tears. I'm sure getting used to idea of letting our kids grow up and become their own person gets easier, but it's all so complex. The idea of letting them go and giving them up but still protecting and nurturing them is like in and yang.<br />
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My IS is all outta whack. It's tough to explain, I feel. <br />
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The other thing that has thrown me for a loop this week is some things with Wyatt.With Eden starting school, I think about Wyatt starting school and how I'll handle that. But then I worried about the fact that he's not walking yet and how his gross motor skills will be and about his speech quality and his clarity of speech. Then I started thinking about him graduating and post-secondary plans...and all sorts of things! Holy snow ball from hell! <br />
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What it is, is...I think that I just need to calm down and take a step back.<br />
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I am anxious. I just started a new job and my daughter is going to pre-school and none of us are used to my new schedule yet and I want Wyatt to walk, like NOW. I know the walking will come, but this week I've seen a few kids Wyatt's age running and climbing and doing things he is not yet, and that sometimes makes me feel a little sad and anxious. When I get anxious or nervous, my head gets foggy and I feel out of control. Then I think about all the things I don't know and don't have control over and it all gets overwhelming.<br />
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I think sometimes I need to think about that phrase, which was born out of humor, but has much truth in it: What it is, is... Originally was intended for beginning an explanation.<br />
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But what if there's nothing more to that phrase? What if you just stop there and leave out the explanation?<br />
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What it is...IS. <br />
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I want to relinquish control and Lord (literally) knows that can be tough for me. But I just need to let my IS's be. Sometimes, it is what it is. I need not worry about tomorrow, because tomorrow will worry about itself. I don't need to always go into lengthy explanations about why I'm feeling sad or anxious, or even justification for feeling happy! Rather I should try more often to just let it be what it is and be in the moment. <br />
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I will cry when I drop Eden off at pre-school for her first day on Tuesday. And she will need me again, for a long time coming, just as I still need my Mom at age 36! Schedules will change and then fall into place again. Wyatt will walk and face more challenges and many successes. And I will try to not let that snowball take me to far away places that I can't control.<br />
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And that's just what it IS. <br />
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What is YOUR "IS" about this week?<br />
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And please...if you are reading from outside of the US, I would LOVE to hear from you!! Please leave a message and tell me about yourself! <br />
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<br />[REBECCA]scheererhttp://www.blogger.com/profile/10289468131368202603noreply@blogger.com0