tag:blogger.com,1999:blog-42519468526766081282023-11-16T04:46:50.572-08:00My Life With MilesThoughts and experiences of my life
with my son Miles, who has Down syndrome.Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.comBlogger104125tag:blogger.com,1999:blog-4251946852676608128.post-14676977652568626662016-02-13T08:43:00.001-08:002016-02-13T08:50:16.861-08:00This Is Forty<div class="separator" style="clear: both; text-align: center;">
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It's my birthday. I'm forty and I've been thinking about what turning 40 means to me. Do I feel old? Is half of my life over? Do I feel anxiety about accomplishing more in my life? Am I disappointed that I'm not where I wanted to be by the time I turned 40? How do I feel? Huh? Huh?<br />
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Well.....I feel good. I feel great actually. I don't think I look 40. I don't feel old. Yes, my body is not as young. I don't bounce back from a night of drinking as easily. Sometimes I spend days with foot pain from my not-so-lovely bunions (yes I know there's an operation for that). I get tired more easily, things are sagging, my belly is flabby...but I don't feel old. And I know my flabby tummy and extra pounds aren't just from being oler, they're also from having carried two children! I'm exhausted mostly because I don't get enough sleep because.....I have two kids! I don't have as much energy because I'm 40? Maybe. And because I have two energetic kids under 6!<br />
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But what was my point? Oh yeah, I don't feel old.<br />
Inside, I still think I'm 25. And then I remember what 25 was like for me. What stage in life I was experiencing and I go," Oh shit! I'm not 25 at all".<br />
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I loved being 25. I lived in New York with Zach. I was working, acting, partying, traveling. I was pursuing my desires and my dream. At the time, I had one dream--to be a successful actress. Hopefully by the time I was 30. I'm 40 and I'm not a successful film actress. Am I disappointed? No. Not at all. Ten years ago, when I turned 30, I was disappointed. Very. I was in LA, dedicating all my time and energy to acting and although I was acting and networking and practicing, I was nowhere near being a successful film actress. I lit a fire under my own ass and got more determined. I wrote a short film, directed and produced it with friends. I was doing it, getting somewhere, I felt good. Today I'm 40 and I am so far from that dream.<br />
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It's been years since I act in front of a camera or onstage. And I miss it, but I don't feel like a failure. You see, my desires have shifted and I've had tons of success in other areas, like voice over. In fact, I've had more success in v.o. than I ever imagined. And it's given me the freedom to achieve other things that were never even dreams, or goals, or anything.<br />
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I'm 40 and I'm married to an awesome guy who I started dating a million years ago (well, like 18) because he was sweet and cooked for me (very important!). I thought we would date for a few months, six tops. You see, there was this poet guy, that's the one I really liked. We were going to have a relationship. Yeah.....whatever. I don't even remember his real name.<br />
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I'm 40 and I have two little kids whom I adore. Two little kids full of energy, sass, curiosity, creativity, wisdom and joy. Two little kids who drive me completely insane and drain my energy but fill me with such love and strength. Who test and expand my limits daily and have taught me more about myself and my life than I ever thought possible.<br />
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I'm 40 and I have a successful voice over career. A career I sort of shifted into when Miles was born and his needs were more imortant than looking good in front of a camera, yet I still had to make enough money to qualify for our health insurance. How lucky I am to actually make money doing something I love and am good at. And I have the freedom to be there for my kids.<br />
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I'm 40 and I live in LA. An awesome city that still surprises me with its hidden jewels. I'm in a great neighborhood, in a beautiful home where my kids can walk to school and I'm surrounded by people I love.<br />
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I am definitely not where I thought I would be at 40. I never had dreams of getting married, having children, being a voice over actor, owning a home. My only dream was to have a successful film career. That was it. Oh.....and to be happy. That was actually my original dream, back when I was a little girl, like Miles's age. Even later, as my interests went from wanting to be a marine biologist, to an austronat, a sociologist, a writer, a psychologist....when people asked me what I wanted to be when I grew up, I often answered, "I want to be happy". Because I didn't really know what I was going to do when I grew up, but I knew I wanted to be happy doing it. <br />
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Life is hard. This fucking journey is a struggle. Like many people, I'm just trying to navigate the challenges and enjoy the positives. I don't feel happy all the time, but I am. I'm happy to be alive in this body, with this mind and all that comes with it. I'm very fortunate. Blessed really.<br />
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So....I'm 40 and I have no specific dreams for myself right now. I have dreams for my children, for my family, for the world. I do have goals--health goals, creativity goals, career goals--but dreams? I suppose my dream is to continue to find happiness doing whatever it is that I'm doing. I feel like I'm just getting started exploring. I'm excited and nervous for the rest of this journey and my dream is to to always find my happy place. For me, this is forty.<br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-70426080730871437682015-10-13T21:17:00.000-07:002015-10-13T21:19:05.616-07:00Make It Worth It<br />
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My Life With Miles. How the hell are ya? I missed you old blog! It has been two years and four months since my last post. I wasn't even sure this site would still be up. But here it is, how cool. So much has happened. Miles is 6 years old and in Kindergarten. Ella is 3 1/2 going on 15. We've moved and moved again. The weeks, months, years have been a blur. When I think back on the last couple of years I can see images, feelings of love, sadness, happiness, depression, hardship. I can see flashes of smiles, laughing children, trees, sun, water, running kids. I can feel my aching back, lethargy, the smell of coffee. I can barely open my eyes. I have trouble breathing. I can feel tears running down my cheeks. And then I can see my kids' smiling faces again.<br />
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Ella's round little face, rosy cheeks, her little teeth and twinkling eyes. She's a beauty. She's a healer. She's connected. Her happiness and joy are infectious.<br />
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Then there's Miles. Miles of Smiles. His laugh so big and full he leans his head back to get it all out. Just like me. His joy and laughter are so pure, divine. He is engaging. He is connected. You can't help but feel love in his presence.<br />
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I think back on the last couple of years and I give myself a great big hug. It's been hard doing it all. It's been hard being a great mother, a wife, having a career, having friends and family, traveling, moving, learning, having patience, cooking, cleaning, being here for others, being here for myself. It's all been hard but not because Miles has Down syndrome. It's been hard because I have two little kids, one has Down syndrome, the other doesn't. They want it all and I want to do it all. So.....yeah, sleeping, keeping my cool, smiling, breathing, just being.... has been challenging. But I'm learning now. And I'm slowing down and I'm gearing up for more of the same, but now with more help. I don't have to do it all, all the time. I can take turns and I can ask for help and I can take time outs. And that doesn't mean I'm neglecting anybody, that just means I'm taking care of myself so I can take care of everyone else. Which I like to do.<br />
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I hope to continue writing. Not sure what I'll do with it. Maybe I'll revamp this blog, maybe I'll change it. But I want to write for sure. And I want to put some focus back into my career. And I want to bake more. And keep drinking wine with friends. And just enjoying things more. Life is short, make the journey worth it.<br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-81378695979562932682013-05-29T14:03:00.000-07:002013-05-29T14:03:29.823-07:00Little Racoons<div class="separator" style="clear: both; text-align: center;">
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It's almost the end of Miles's first real preschool year. He rocked it.<br />
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Ella is about to turn 16 months. That's a whole year and four months. She's rocking it.<br />
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We just had Miles's 2nd IEP. We were happy with it. He'll be going to the same preschool next year and getting tons of services integrated into the program. He's gonna continue rocking it.<br />
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Ella goes to daycare three times a week and is already doing so much. She's actually a little bit of a hellraiser at daycare. Yeah, she's done some scratching, hair pulling and kicking. She fights for what she wants. The rest of the time she's really sweet. I swear!!<br />
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Miles is sweet. He made his first real school friend. Real as in not one of our friends kids. Real as in a kid from school that he plays with all the time, they hug and kiss hello in the mornings and they wrestle and tackle each other and chase each other around the playground. Real as in Apollo (that's his friend's name) would go home and talk to his mom about his buddy Miles from school. So much so that his mom approached me about doing a playdate. So we did!!! Miles had his first playdate with a typical kid who became his friend in school! It was so cute!!!!<br />
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Speaking of chasing around, Ella chases Miles around all day along. She wants to do whatever he's doing. She wakes up in the morning and the first thing she asks for (well, after a book) is Miles. The thing is, she doesn't call him Miles. She calls him "daddy" or sometimes "mine". This morning she woke up so early that I went to her room and tried to get her back to sleep. But she wouldn't sleep, she wanted to cuddle. So I cuddled her in her room until she asked for daddy. I brought her into our room, assuming that she meant Zach, her real daddy. But the minute she saw him she started yelling and crying and arching her back and saying "daddy daddy daddy" over and over. I said "that's daddy, he's right there". Zach kept trying to hold her and she'd get more angry. Finally I said to her, "do you mean Miles? Do you want to see Miles?" She calmed down and said "yes" while nodding emphatically. I could tell she was happy I finally understood what she meant. I explained to her that Miles was still sleeping and we had to wait until he woke up to see him. She looked at me with understanding, put her head down on my chest and closed her eyes. She decided to wait. She's got such a good grasp of language and communication...it boggles my mind. And she loves her brother so much.<br />
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Miles loves Ella too. He loves her and wants to play with her the same way he plays with Apollo and some of the other boys at school: tackling, shoving, wrestling. When he sees her in the afternoons after school, he'll often yell out her name, "ELLA!!" and opens his arms wide while running full force towards her for a hug...er, tackle. Yep, he tackles her onto the ground and sometimes even pins her there. She finds it hilarious. She never cries. It's how they play. She plays rough....hence all the little mishaps at daycare. Ella is a sweet little rough girl. She's learning from her sweet big brother. It's a winning combination...or something.<br />
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I tell you what, they keep us on our toes for sure. These two little raccoons, as my husband calls them, are incredibly busy, curious, smart, happy, energetic, sweet, loving, and non-stop fun. Or just non-stop. They are both communicating so much in English, Spanish and Sign language. They are exploring their world and fine tuning their muscles. They are getting to know each other and the world around them. And they're both learning so much from each other. I can see how Ella will soon surpass Miles in language and motor skills, but she'll continue learning perseverance, courage and love from him. And may we all learn a little patience!!!<br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-90951365538002421752013-04-08T13:16:00.002-07:002013-04-08T13:16:15.140-07:00Sleepy TimeWe've fallen into this new "routine" with Miles where he needs us to stay in the room with him until he falls asleep. Sometimes we lie down in bed with him, sometimes we lie on the couch, sometimes we just sit on the floor next to him until we hear his breathing get real deep....and even turn into snoring every now and then. He's always been real good about going to sleep at night. Since he was a baby, he would pass out in my arms before he'd even finish his bottle. As he got older, we'd sit and read books and as soon as I turned off the light, he'd be out. When we moved him into his big room before Ella was born, I was afraid he'd have trouble falling asleep. But no problems there. We'd sit on the couch and read a few books, I'd turn off the lights and he'd be out. Then we got him his big boy bed and again we thought there would be problems, but no. He was so excited and marched to bed every night without prompting. He'd flop his head on the pillow, I'd give him a kiss goodnight and that was it. I'm not saying he fell asleep right away, but he would lie there content to let sleep overtake him. And then three weeks ago, right around the time Daylight Savings started and we had to spring forward one hour, he decided he didn't want to go to sleep at night anymore.<br />
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The first time it happened I was home alone with the kids. Zach was working late. I was exhausted and was looking forward to getting to bed early. Ella was down at her usual time, 7pm. Miles typically goes down around 8pm. He had his dinner, bath and extra playtime with his trains. We sat on the couch and read a few books and when I said it was time to sleep, he got off the couch, opened the door and said "bye bye" to me! I was like, "what? What do you mean bye bye? get back here kid!"<br />
He had no plans to go to sleep. He closed the door on me and ran to the living room. I ran after him. Brought him back to the room. Put him in bed....but he wouldn't stay there. I got in bed with him and practically lied on top of him to keep him down. The kid is strong. And he does not give up. Oh and he thought the whole thing was hilarious! I eventually gave in and turned on the lights, decided to let him play some more. I sat and played with him another half hour and tried to get him down again.....and he fought me. Ran out of the room, turned on the TV, ran back into his room, I pinned him down on his bed, he struggled and laughed and wouldn't give up. After almost 3 hours of trying to get him to go to sleep, it was nearly 11:30pm and I was going mad. So I gave up. I decided I'd go to sleep and he could do whatever he wanted.<br />
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I brushed my teeth, took out my contacts and got in bed, physically and mentally exhausted from my day. I took out my <i>Vanidades</i> (trashy Spanish magazine) and started reading. Miles was hovering around the whole time, kinda doing his own thing but keeping tabs on me. When I got in bed he promptly got in with me and asked me to read him the magazine. So I read to him in Spansih about Prince William and Kate and their future baby. He seemed very interested. I read on about Gloria Swanson and I though I started drifting to sleep, he was still wide awake. So I told him I was going to sleep, turned off one of the night lights and gave him the magazine to keep reading. He flopped onto his belly, opened the magazine in front of him and started "reading". He looked like a teenage girl engrossed in celebrity gossip. It was hilarious. But I was too tired to laugh. I fell asleep. Half an hour later Zach walked into the room to find us both asleep on the bed, Miles with the magazine open in front of him. He transferred Miles onto his bed where he slept until about 6am. And that was the beginning of his "I don't want to go to sleep by myself in my room" thing.<br />
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He hasn't gone to sleep so late again snce that night and I haven't had him fall asleep in my bed again, but I've had to stay with him in his room until he does fall asleep. If I walk out of the room before he's fully asleep. he'll run out of bed and follow me out. And no matter how many times we guide him back to bed, he'll jump up faster than we can get out of the room. So we've decided it's easier to stay in there with him until he's asleep. I tried to fight it. I worried about it, are we doing the right thing? Is he getting into a bad habit? And then I thought, "but I like having this quiet time with him." I don't mind snuggling him until he falls asleep. I used to do that when he was a baby. In fact, if I really think back, I've done that most of his life. It only really changed when Ella was first born and I had no time to sit with him at bedtime so he started falling asleep on his own. But I always did it and did it because I loved it. And I still do. And instead of stressing out about how long this is going to go on, I'm going to enjoy it because he's not going to want to me to tuck him in for the rest of his life. Eventually this little routine will stop, he'll change it up. He won't want me around as much and I'll miss these days. I'll miss the nighttime kisses and snuggles and quiet time. So right now, I'm going to enjoy it.<br />
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And when he gets up at 2 am and comes to our bed, we let him stay. We snuggle and fall back asleep. Usually he falls asleep first and we put him back in his room where he sleeps until the morning. But we enjoy those 2am snuggle sessions too because we really never did that when he was a baby. We never co-slept. We used to bring him in bed at 5am when he would wake up but it was impossible to get him to just go back to sleep. He'd want to play, he was up. Our bed was a fun play space. But now when he climbs onto our bed and it's dark out, he just wants to sleep snuggled between us and know that we're there for him. And we are. And until we can't stand it or he changes it up, I'm going to go with this new routine and enjoy the sweetness of it, because it won't last forever. Nothing does.Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-38073145658806317402013-01-29T10:04:00.002-08:002013-01-29T10:05:28.660-08:00Big Boy in His Bid Bed<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBx6ULIP_CzlfPcUiy6fFfinkoD2sn1cCB-C4gWqEoOG0YiPdk40HCTQ_80Ox0ewavdyHt4MxXslzFL-pudWkg8RyhQQuR3j7B_gATLbL7Bwzse3E6uCb9tKHf81_MtvzD3XkSTumWHPo/s1600/Miles+in+bed+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBx6ULIP_CzlfPcUiy6fFfinkoD2sn1cCB-C4gWqEoOG0YiPdk40HCTQ_80Ox0ewavdyHt4MxXslzFL-pudWkg8RyhQQuR3j7B_gATLbL7Bwzse3E6uCb9tKHf81_MtvzD3XkSTumWHPo/s400/Miles+in+bed+1.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles sleeping like a sloth, so relaxed in his new bed!</td></tr>
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Big Boy in a Big Bed! That's right, Mr. Miles is finally out of his crib and in a real bed!! For months now we've been talking about transitioning him into a bed but honestly, Zach and I just weren't ready. He was. It was obvious. At school he sleeps in a mattress like all the other kids. He can get in and out when he needs to....and he does. Whenever we visit his friends, he likes to pretend he's sleeping in their beds. He gets under the covers, closes his eyes and everything. At home he loves jumping on our bed and pretending we're all sleeping together. Ella wants to jump and roll around the bed while Miles tries to get her to lay her head down on the pillow and go to sleep. He's always been a very good sleeper and now that he's bigger, he even tells us when he wants to get in his crib. We'll read some books and turn off the light and while I like to sit and hug him for a few minutes because he's so yummy....he wants me to just put him in his crib. Because he wants to sleep!<br />
Yes, he's been ready for a while, all the signs have been there and though we were aware of it, we've been holding back for our own selfish reasons.<br />
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I mean, what if he gets up in the middle of the night and comes to wake us. Or if he gets up super early in the morning, like he used to do (at 5am) and wakes us. Ella is sleeping through the night, waking up around 6:30am and Miles gets up around 7am. After three and a half years we are finally getting some decent sleep!!! We don't want to lose that! We need our sleep and change is hard for everyone....not just the kids!!! We don't want to go back to night wakings and weird sleep situations. And what about in the morning? Are we going to be dealing with nasty, messy clean-ups? Miles wakes up with some incredibly full poopy diapers almost every morning. What if he has a particularly full and runny morning constitution and he gets out of bed and on the couch or on the rug and drags his shit with him??? Literally. That's just gross and too much information, I know, I'm sorry. But these are the things I've been thinking about. This is what's been holding me back from making the switch. But today we took the plunge. I don't know exactly what it was that made us both wake up and decide today was the day to buy Miles a bed, but we did.<br />
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Zach and I dropped Miles off at school and drove out to IKEA with Ella and together the three of us found a perfect bed for him. It's low to the ground so he can get in and out by himself and it has a half rail just in case he moves around too much at night. Ella loved his bed and played on it for a good 20 minutes while at the store. We got home, Zach built it, we washed the sheets and set it all up. When Miles finally saw it this afternoon, he knew exactly what it meant! I could just tell. He was so excited, grinning from ear to ear and climbed right up on his bed, pulled the covers over himself and pretended to be asleep. It was precious. I still wasn't too sure that he'd go to sleep easily tonight, so I was expecting a long bedtime routine, with lots of jumping on the bed or climbing on and off before he finally fell asleep. I was so wrong! After his bath, we went into his room and when he saw his bed again, exclaimed, "Oh wow!"....as if he'd forgotten and once again remembered his cool new bed. I let him pick out his pajama and after a little fight, I finally dressed him. He was already in his bed and put his head on the pillow and pretended to go to sleep. I said, "Okay goodnight Miles" and as I went to turn off the lights he climbed down from the bed and went over to the couch in his room, where we always read books before bed. So I picked out three books, sat on the couch with him, Zach walked in the room and we read. At the end of the third book, Miles had finished his milk and did the "all done" sign. So I closed the book, said "All done" and as I went to turn off the light, he climbed off the couch, onto his bed and under the covers. He smiled at us and closed his eyes!!!!! We turned off the light, said I Love You and walked out. All Done!! That was it! It took about 15 minutes tops!! <br />
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We could not believe it!!! That was soooo easy!! Our little boy in a big bed for the first time ever! He's doing it, passing another milestone, we're all transitioning into yet another phase. Amazing! It was a little over a year ago that we moved Miles into his current room in preparation for Ella's birth. I was so nervous that he wouldn't like his new room, that he'd be scared because he was far away from us. I was nervous that we wouldn't hear him when he cried or that we couldn't get to him fast enough if he needed us. I was sad that he wasn't in the room closest to us anymore. I was the one having a hard time transitioning.....he did just fine. And here we are today, just a few days shy of Ella's first birthday and we're going through another big transition with Miles. One that's been a long time coming, one that he's been sooo ready for and one that I, again, was holding on to for just a little too long. It's a well known fact that kids have trouble with transitions. They say kids with Down syndrome have an even harder time adjusting to transitions. Well, what about the parents? Have there been any studies done about that? I doubt I'm the only mom out there who wrestles with these transitions. Or am I? Either way, here I am, proud of my son's independence, his growth. Excited that he's doing so well and knows so much. Nervous about how tomorrow will be. We'll see who transitions better...him or me!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVACRVKwEHFpEw6oNJuWXhm5k5BtxS0LGVBQ8whmULNQX4TY_GPMmQwx-N6goWsvfO8ZZ4g8QGZ0eNEK9S8-uirAK0_lEy8btjGltYITG6j9hskxMyyfON5Ff3jsd6ZPuuGxfrbr4vdhU/s1600/Miles+in+bed2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVACRVKwEHFpEw6oNJuWXhm5k5BtxS0LGVBQ8whmULNQX4TY_GPMmQwx-N6goWsvfO8ZZ4g8QGZ0eNEK9S8-uirAK0_lEy8btjGltYITG6j9hskxMyyfON5Ff3jsd6ZPuuGxfrbr4vdhU/s400/Miles+in+bed2.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles is such a deep sleeper that he didn't wake up when we went into his room and turned on the light to take these photos!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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PS....Miles did wake up with a huge, very loose poopy diaper that smeared all over his new mattress. Yes, we put a cover on the mattress, but he managed to get it just in the spot where the mattress wasn't covered!! At least he didn't run around the house getting everything dirty. No...he stayed in bed, lying down talking to himself until one of us came in the room....to find a stinky mess!! Thank goodness for washing machines!!<br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-87871892149662597382012-12-30T23:29:00.003-08:002012-12-31T15:49:17.995-08:00Goodbye 2012<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7iD0WC8Ldb9nnOg7H7bfAQBfRvFjfxJa9b1ktM3cLtQ2fpnulPDtuYfnyvPft-IYfdesqJQ_OWAg4LUWC7vIOa6LCph1fnydyCx-VIa2yDQCpVAs8cKGoZenxc6mTE6hYEOkORozkR_I/s1600/Miles+and+fall+leaves.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7iD0WC8Ldb9nnOg7H7bfAQBfRvFjfxJa9b1ktM3cLtQ2fpnulPDtuYfnyvPft-IYfdesqJQ_OWAg4LUWC7vIOa6LCph1fnydyCx-VIa2yDQCpVAs8cKGoZenxc6mTE6hYEOkORozkR_I/s400/Miles+and+fall+leaves.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles with fallen leaves at Descanso Gardens</td></tr>
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Wow, the year is over. Just a few more hours and it will be 2013. As I look back on how much has happened this year I am blown away. How does so much happen in such a short time yet it always feels like it happened a million years ago? At the beginning of this year I was still pregnant with Ella. I was nervous for her birth, hoping for the best, not knowing if we'd be in for any surprises. And then she was born, perfect in so many ways. My worries turned from her to Miles, who was going through so many changes: moving into his new room, starting a new school, having a more intense therapy schedule, not being the center of our universe anymore. How was he going to deal with a new sibling? How was I going to deal with two kids? This year also brought lawyers and mediation and IEP's and fighting, fighting for my family, my house, my kids. So much of it is just a blur and when I look back on the year, I think I was half asleep through a large part of it. I'm not sure how we've made it through, but we have and most of memories are good. <br />
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Miles has grown so much. He's a big boy now, ready to start sleeping in a big boy bed soon. He actually started two new schools this year, became a big brother, finished all his Early Intervention therapies, had his first IEP. All big milestones for him and us.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJOi_pWy9SQdPhRdg81cPmA6OJM8ZoD8XIwOhC8vZ5opbg2htRK8cb_5LI0GPIhl4U_lGIktvDH9Vn1oq623JbYdlsPGtW7bKMivOCVWaCkHacMuKT1ViiFj0LpDL7Her1Jai7WitrdcQ/s1600/drummer+boy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJOi_pWy9SQdPhRdg81cPmA6OJM8ZoD8XIwOhC8vZ5opbg2htRK8cb_5LI0GPIhl4U_lGIktvDH9Vn1oq623JbYdlsPGtW7bKMivOCVWaCkHacMuKT1ViiFj0LpDL7Her1Jai7WitrdcQ/s400/drummer+boy.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My little drummer boy</td></tr>
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And Ella, my sweet little lady, was born this year. A Dragon Aquarian just like myself. She was born healthy, strong, beautiful, hungry and with an independent spirit. A perfect addition to our family. And the happiest little baby around. She is social and curious, daring and funny. She loves food and music and swimming and playing with Miles. I love her to pieces.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi57YvQsIsNMZo71bl-gWrm3syjP0jMOSg7BPNgpG62pEcebK4vqSFI3Y58FMqfX0Z2LP9LrkeX5sE6TGOJvsp67YXHeAPdgllAUwfw6Re8vQ_H2pvVyPlKdvHPhrgsxlUh1kHlGqlyFfA/s1600/sweet+bean.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi57YvQsIsNMZo71bl-gWrm3syjP0jMOSg7BPNgpG62pEcebK4vqSFI3Y58FMqfX0Z2LP9LrkeX5sE6TGOJvsp67YXHeAPdgllAUwfw6Re8vQ_H2pvVyPlKdvHPhrgsxlUh1kHlGqlyFfA/s400/sweet+bean.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet pea</td></tr>
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Yet with Ella's birth came a lack of sleep so intense that it's been the hardest part of my year!! It's messed with my head on way too many occasions. Sleep deprivation makes me grumpy and eat too much and overindulge on caffeine and sweets and have no energy for exercise. So my body is in pain and out of shape. My mind is foggy and my emotions are all over the place. Transitioning from one baby to two has been a major challenge for me. But one that I've welcomed, in fact, I wanted it.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8JaylQKqkQsfHH-W6focafDRRfmZ5eKMyZsCZ1UOb25U9s4xiM4ftLjT0OcCO79Bc2n1i-8U-11rK0snYXKzSOgAzaRc-NNKf1xDHmxRjT1CwGhGpDoLFpg_iH0ZBr9dfsWfWJC38d7g/s1600/Miles+Ella+&+tree.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8JaylQKqkQsfHH-W6focafDRRfmZ5eKMyZsCZ1UOb25U9s4xiM4ftLjT0OcCO79Bc2n1i-8U-11rK0snYXKzSOgAzaRc-NNKf1xDHmxRjT1CwGhGpDoLFpg_iH0ZBr9dfsWfWJC38d7g/s400/Miles+Ella+&+tree.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sibling love!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Is it worth it? Is all the stress and emotional drama and lack of sleep and loss of independence worth it? YES. A big resounding YES! I am exhausted but somehow I find the energy to be a mother, to be the best mother I can be on any given day. And I do it because I love these tiny humans who call me mami. They make me happier than I ever thought possible. They have made me understand things about myself and life that I had barely even questioned in the past. They have made me be more loving, empathetic, caring, compassionate, inclusive, funny and kind. Although I seem to have a short temper, I'm actually more patient now than I have ever been before. They've made me question my values, what I admire, my understanding of love and laughter and letting go. They've made me be less judgmental and more accepting. In short, they've made me grow and I like the direction in which I'm growing!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc78xP2knFnUgLCfn9xI6ki5H9K9IGrDYgqPNXOo4AR6mSz6v1vxr-j75wGRmmxqlCdY2ifLRLuHRzTCWxBAc8W_ew1YNkmuht6NOr1EQmQibPA09OrNeukSSKs9KClOyjeOilogbXOQg/s1600/Family+self+portrait+Dec+2012.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc78xP2knFnUgLCfn9xI6ki5H9K9IGrDYgqPNXOo4AR6mSz6v1vxr-j75wGRmmxqlCdY2ifLRLuHRzTCWxBAc8W_ew1YNkmuht6NOr1EQmQibPA09OrNeukSSKs9KClOyjeOilogbXOQg/s400/Family+self+portrait+Dec+2012.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family self-portrait on our Family Fun Day! </td></tr>
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I won't lie though, even though these little dumplings have changed my life for the better, raising them is hard as hell!!!!! Shit, it's true that nothing in life comes easy!!! There can't be growth without effort and pain. So that's where I'm at as 2012 comes to an end. I'm in a place where my reserves have kicked in so my exhaustion won't get the best of me. And I'm feeling blessed for all of it. For my family, my body, my mind, my spirituality, my light. My wish for 2013 is to find more harmony in every area of my life, especially at home. I wish for happiness, health, love and daily harmony!! And as I look at the photo above I think, "Oh my God, that's my family! Those are my kids. Two kids. I am a mother of two!! WTF!!??". That's amazing to me. I never even knew I wanted kids, thought I didn't, and here I am loving them and the family that Zach and I have built more than anything. Wow, that's some growth right there!<br />
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Thank You and Goodbye 2012. </div>
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Hello and Welcome 2013!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJkTR7Efu7RAtyvCPwz25ovMXC5SerbsSJRlO3w_DdBfQrSOW41u3jsD-wmdl6coB8A7S3cDFg0cfFJ0digPJEbl3zQetfTHirc63HEJl6FZGZbFHjyC0Es96BodqS04wD_PnGYb3Na8M/s1600/Family+xmas+pic-2011.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="342" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJkTR7Efu7RAtyvCPwz25ovMXC5SerbsSJRlO3w_DdBfQrSOW41u3jsD-wmdl6coB8A7S3cDFg0cfFJ0digPJEbl3zQetfTHirc63HEJl6FZGZbFHjyC0Es96BodqS04wD_PnGYb3Na8M/s400/Family+xmas+pic-2011.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3Tg7OnPI2N1R3S1PX3yR1nlTW2-vITxiFjKtb7F9zueZjCVTsqcocZerlIY2Pm-LUmJZnet40AMHdnVE8JVcVUK5rbznEg8ynqbZEZRBzmuxqZdHFVeBNdehnFdVofnossOJA6ZkyXcw/s1600/family+self+portrait+xmas+2012.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3Tg7OnPI2N1R3S1PX3yR1nlTW2-vITxiFjKtb7F9zueZjCVTsqcocZerlIY2Pm-LUmJZnet40AMHdnVE8JVcVUK5rbznEg8ynqbZEZRBzmuxqZdHFVeBNdehnFdVofnossOJA6ZkyXcw/s400/family+self+portrait+xmas+2012.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas 2012</td></tr>
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com1tag:blogger.com,1999:blog-4251946852676608128.post-2155540498208261592012-12-04T07:38:00.000-08:002012-12-04T07:38:39.146-08:00The Little MomentsElla is 10 months old. She is crawling and cruising on furniture and climbing on everything and following Miles's every move. She's got six teeth with two more coming through and she loves food! In fact, we've been calling her Po, like the character in the movie "Kung Fu Panda" because just like Po, she's completely motivated by food. That's how she first started crawling. She started noticing Miles's food on the floor and learned how to reach it...and put it in her mouth! She eats anything, especially finger foods. She loves the independence. Don't try to feed her, she wants to do it herself!! Noodles, beans, yoghurt, bread, grapes, carrots, tofu, eggs, quinoa, rice. If it's on her little table, she will put it in her mouth. Yes, even yoghurt. Meals are very messy around here. Ella is a happy little baby as long as she's not tired or hungry. If she is, she lets me know. She's very clear about what she wants and doesn't want and she lets me know it. Yep, she's my daughter. I don't think she'll have any problems expressing herself. Ella loves to laugh and babble and point at things and imitate sounds. In fact, she's getting so good at it that Zach and I make a pact to stop using curse words around her, which, if you know us, you understand how incredibly difficult that is. But we're trying...I swear. <br />
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Miles is loving his preschool and is also learning exponentially. His sign language and understanding of language has doubled in the last couple of months. He's finally using his signs more often without needing us to prompt him. And he's understanding more concepts like things that are hot or cold. His spoken language is still lagging, but he's got a few new words and phrases he's using like, "do it", "stop it"and "there". Communication can still be a challenge, but I find that it gets better every day. I've also become a better listener and watcher so I can anticipate his needs and be on the lookout for his signs. He can tell I'm listening and understand him and he is, in turn, more interested in communicating with me. It's starting to be a more rewarding experience...finally! Miles also surprised us with his very spirited performance in the school's Halloween show. He totally rocked it! He was the happiest, most energetic and exciting performer of all. Which wasn't really a surprise. What surprised us was how well he knew the choreography and how he didn't need an aide to help him follow along at all. I mean, he loves dancing, I know that. But I didn't know that he would be so good at a choreographed dance! It was exciting to see him surpass my expectations. He loved the stage and being in the spotlight. <br />
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These are just a few tidbits of what's been going on in the last two months. It's really been a whirlwind and I've barely had time to process it all. That's why I haven't written. It's usually a toss between writing and sleeping. Sleeping has been winning every time. And I know that with the holidays coming this month, the last 31 days of 2012 are going to be over before we know it. But I don't want this year to be over! I want to luxuriate in this time, I want to truly experience this sweet stage that Ella is in. I want to be able to look back on these days with both kids and remember specific moments in time. The little moments, not just the big ones like Christmas or Thanksgiving. I want to be able to remember Ella's toothless smile and the way she crawls with one knee pointing up toward the sky. I want to remember how she puckers up her mouth and scrunches her nose when she savors a new flavor for the first time. I want to remember the way her delicate little fingers pick up a small cheerio with such precise coordination and put them in her mouth. I want to remember her sweet little voice when she says mama or her high pitched yelling when she's excited. <br />
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I want to remember Miles's funky dance style: stomping his legs and swinging his torso and bent arms from side to side. I want to remember how he's added air guitar and air drums to his dance repertoire and how he has no shame of breaking into dance at any restaurant when good music is playing. I want to remember his sweet smile and carefree laughter when we run around the kitchen chasing each other. I want to remember how he says "hi" with such innocence and love every time I see him or how he pats my back when we embrace. I want to bottle all these special moments so I can see them this clearly 50 years from now.<br />
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Alas, Dumbledore's pensieve only exists in the Harry Potter series. So I'll try to do what I know how to do: to stop and enjoy the moments with my kids. Take the time to really be with them and not fill my head with other worries. And then, when I can, I will write about those moments because it helps me process them. It helps me see them again and store them deep in my heart. And of course, I will take photos and videos because when I don't have time for the words, a picture can say it all!<br />
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So here is a few highlights of the past two months......<br />
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The month of October started off with the Club 21 Walkathon in Pasadena, where we helped raise awareness and money for children with Down syndrome!<br />
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<tr><td class="tr-caption" style="text-align: center;">Family Portrait with Brobee at the Club 21 Together Is Better Walkathon!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Miles dancing with his friend Lilly at Club 21 Walkathon</td></tr>
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At school, Miles started acting out a bit this month.....and that got him into trouble on the playground! He fell and got a pretty big gash right above his eye. Instead of stitches, the doctor glued his skin together and put a butterfly strip over it. He was pissed off about the whole ordeal, but as soon as we got home, he went straight into the studio to play the drums. <br />
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<tr><td class="tr-caption" style="text-align: center;">Miles on the drums after his trip to the doctor.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;"> Ella also likes to play the drums!</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td 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<tr><td class="tr-caption" style="text-align: center;">Miles trying on his cowboy boots for his Halloween costume as Sheriff Woody </td></tr>
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Miles's first performance, onstage, with a live audience was fantastic!!! We had parents coming up to us afterward saying that they would pay just to go see Miles perform. Yeah, he was that entertaining.....and good!<br />
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<tr><td class="tr-caption" style="text-align: center;">Ella, the little Pumpkin, showing off her cute delicate fingers.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Miles during his school's Halloween performance.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sheriff Woody</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sibling Love!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYXwGopThHYxRchYtHoDeGAMv6rWET-1-5sfKtGczl68bVVdS0eikjVNCKKxKl4nHBaXOwtYSIlcecPRi_x7nA7oe9_Q2E3emROzbMHm8qZVYUcUSCACpeoLJRpb560IdMZw_piBsPOsQ/s1600/ella+on+train.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYXwGopThHYxRchYtHoDeGAMv6rWET-1-5sfKtGczl68bVVdS0eikjVNCKKxKl4nHBaXOwtYSIlcecPRi_x7nA7oe9_Q2E3emROzbMHm8qZVYUcUSCACpeoLJRpb560IdMZw_piBsPOsQ/s400/ella+on+train.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ella's chubby cheeks on her first train ride in Travel Town </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1dFThW-kWd3AhpzAajEVKmtbLSCi3m8ZhJuL4CHNUL1Uwrthic1fAE1DrrCz2_0-Xk7yE2rk_ElDMA79VAGuxL3PB15r60Yd1GEFfjIVS-628OVH6NApHsSGT3a3MC-iqhrfdJXvc9gE/s1600/at+museum.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1dFThW-kWd3AhpzAajEVKmtbLSCi3m8ZhJuL4CHNUL1Uwrthic1fAE1DrrCz2_0-Xk7yE2rk_ElDMA79VAGuxL3PB15r60Yd1GEFfjIVS-628OVH6NApHsSGT3a3MC-iqhrfdJXvc9gE/s400/at+museum.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A self portrait of Miles and I during our date to the Natural History Museum</td></tr>
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Thanksgiving 2012...... <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjva_CzUD1pvPXkwV-loP8l94ni08ubNZkPiouUirynu2Itz7SRUpuQdYaotrS45ONWfqTbpEcaARh9EbvZ6pdqGl0CEdb7J9eu22soiyW1ZFh0mYIq0Dnm8uImYXEEnwX3zbcOrNwDYW8/s1600/m+&+l.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjva_CzUD1pvPXkwV-loP8l94ni08ubNZkPiouUirynu2Itz7SRUpuQdYaotrS45ONWfqTbpEcaARh9EbvZ6pdqGl0CEdb7J9eu22soiyW1ZFh0mYIq0Dnm8uImYXEEnwX3zbcOrNwDYW8/s400/m+&+l.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles and Lilly eating apples after Thanksgiving dinner</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ella happily playing with the big kids on Thanksgiving</td></tr>
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My kids and food........ <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdDMcLAPXpEiN-dRK_NXkb27ADdPkSVER37j-K_-xRXkFVTxKaEjqtAQM24_85Rkt1i_3l7EvuhFu4zv1i8BUfcUW6N5YGzgEwSX5-KoA3mI0ToZzaszetl1JXHtrSm9fkpn13OyyDEMU/s1600/photo-9.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdDMcLAPXpEiN-dRK_NXkb27ADdPkSVER37j-K_-xRXkFVTxKaEjqtAQM24_85Rkt1i_3l7EvuhFu4zv1i8BUfcUW6N5YGzgEwSX5-KoA3mI0ToZzaszetl1JXHtrSm9fkpn13OyyDEMU/s400/photo-9.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ella after a yoghurt breakfast</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsKhBA0uQAoitaRjpDtfkikOlfqTjGPljQ_uw7FkfKOuHtJCd-Q8gP32Otle2Z0ImHLkqPv8kgcREnUB6dAV8FNeQzI9kxArpeAZ2fn9Rvee7E0A65ikVX5OaiCKSzRSaP2Vt2-ngyZmo/s1600/photo-7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsKhBA0uQAoitaRjpDtfkikOlfqTjGPljQ_uw7FkfKOuHtJCd-Q8gP32Otle2Z0ImHLkqPv8kgcREnUB6dAV8FNeQzI9kxArpeAZ2fn9Rvee7E0A65ikVX5OaiCKSzRSaP2Vt2-ngyZmo/s400/photo-7.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eating dinner like big kids at the little kid's table.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZSi0edp7kQwtDLnICIktjzgGbBosWtNfrVdAXo5h2t9uaTl9oK_-sZtihsOUlUes2x1BRon6TbUx8Rxx9Ixjc9zYNOW4FDhaTGa3c4TKJDTii8QTSHJ_TdtFYmWncN2lAsJgPT2jYU4/s1600/photo-7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZSi0edp7kQwtDLnICIktjzgGbBosWtNfrVdAXo5h2t9uaTl9oK_-sZtihsOUlUes2x1BRon6TbUx8Rxx9Ixjc9zYNOW4FDhaTGa3c4TKJDTii8QTSHJ_TdtFYmWncN2lAsJgPT2jYU4/s400/photo-7.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first self-portrait!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mama sandwich on a lazy Sunday at the Griffith Observatory</td></tr>
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com1tag:blogger.com,1999:blog-4251946852676608128.post-30090930332554001802012-10-01T21:35:00.003-07:002012-10-01T21:35:30.922-07:00SiblingsElls started saying"wow" last week. She's 7 1/2 months old. Miles first said "wow" when he was 2 years old! She can also say mama and dada. I don't think she realizes we are mama and dada, but she can say the words. Again, she's 7 1/2 months old. This is actually quite normal for a typical baby her age. I didn't know that. Until now, that wasn't my experience, so everything she does is like "wow" to us. She's not in therapy or special classes for anything and here she is, picking things up just from her surroundings! It's totally mind-blowing!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi63YGoTgd7lEL-WUcx92nXLGyWeCgodjTLBRZ_5sfJ3_SsMkPje42ziaGccoklwst5J0g3JHpxuq1RV0zO2hlBnifoFtO_Yghnv9gETZvboItD5yMXbDapYd7ld4WBFiG6u-XQOxJG6eo/s1600/M%2526E+on+bed.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi63YGoTgd7lEL-WUcx92nXLGyWeCgodjTLBRZ_5sfJ3_SsMkPje42ziaGccoklwst5J0g3JHpxuq1RV0zO2hlBnifoFtO_Yghnv9gETZvboItD5yMXbDapYd7ld4WBFiG6u-XQOxJG6eo/s400/M%2526E+on+bed.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ella & Miles August 2012</td></tr>
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Ella can clap her hands and play peek-a-boo, she imitates our intonations when we say things like "hello". She's trying to pull herself up onto the sofa and crawl all over me. She is very ticklish and loves to play tickle with Miles. She eats pureed foods, but is so ready for our food that she tries to steal it from our plates, hands and sometimes mouths when we're eating! Ella's not particularly interested in other little babies her age, no sir, she wants to hang with the big kids. When we're around other kids, she can't take her eyes off them running around, playing with balls, dancing. She wants to do what they're doing, she wants to run around, dance and play catch. She loves spending time with Miles, even if he does knock her on her down at least twice a day. She sometimes cries, but mostly she thinks it's fun and plays rough right back with him. It's amazing to see them together. Every now and then, I catch Miles staring at Ella while she's practicing funny sounds or trying to catch her balance and failing, and he will laugh this full out, adult belly laugh at her. She cracks him up and he does the same to her. They both have this hilarious sense of humor and a joy that's beautiful and contagious. I love them and I love that they have each other.<br />
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As I see their relationship develop, I can't help but think of my own relationship with my siblings. When we were real little, my sister and I would dress my brother up like a girl...and he would go along with it. When we were older, we'd sit and play with his Hot Wheels or have a Monopoly match that lasted all weekend. As teenagers, we argued and had jealous moments, but no matter what, we stood up for each other in the playground and at school. My sister would treat me as badly as she wanted, but if anybody said anything mean to me, they'd have to deal with her wrath! As adults, we love and respect each other even if we don't always see eye to eye. Not all siblings have such close relationships, so I feel fortunate that we do. They're not just my siblings, they're my best friends. I also have a stepbrother and sister in Panama and two stepbrothers in Massachusetts, and though we didn't grow up together full time, I feel a strong kinship with them as well. I think that sharing parents is a pretty strong bond, whether related by blood or not. I mean, who else can truly understand the depth of your parental issues but another sibling!<br />
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I know that Miles and Ella will learn a lot from each other throughout their lives. I can already see their little wheels turning when they're together. I also know that their relationship will be different in a way that I can't quite comprehend. But I do hope that they will love, trust and respect each other. I hope that they can confide in each other and that one day, when they're older, they can sit around with a bottle of wine and talk shit about mom and dad while understanding that when we messed them up, we did so because we're human. Imperfect humans who love them more than anything in the world!<br />
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<tr><td class="tr-caption" style="text-align: center;">Me, my bro & my sis- 1980</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Me, my bro & my sis- 1997</td></tr>
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-18889559131609441222012-09-11T10:29:00.001-07:002012-09-11T10:29:52.006-07:00Little Big BoyThe last two weeks were incredibly intense leading up to Miles's IEP, his 3rd birthday and the end of all his Early Intervention therapies. I was an emotional mess, full of fears, anxieties, and sadness. Sadness over saying goodbye to his early intervention team, fear about the unknown, anxiety over the IEP. As always, I drive myself nuts for no reason. The IEP turned out very well. The meeting itself was incredibly long and mostly boring, but I was happily surprised to hear that Miles's assessments were very accurate and all the goals and recommendations that were made were exactly what Zach and I wanted. The psychologist's assessment of Miles was so spot on and positive that it was another reminder not to judge a book by its cover. At the evaluation, she seemed like such a mean, cold person who had never worked with children. She had a million questions and barely engaged with Miles so I was sure her assessment would be negative. I was so wrong. She also visited him at his school and gave glowing reviews of the school and his progress there. I think that if she could, she would just straight up recommend to keep him there. It was obvious that all the LAUSD therapists who evaluated him believe Miles is in the right school environment, but since they work for LAUSD and they have to recommend an LAUSD program, they couldn't actually tell us to keep him at his school. At least, not on the record!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLHaRZSLlFPxCFNuBmQII37c2qwexLUhvzOl8GL6pXPeEoYW4W6G4wnc8wT0iZ9fvNeax7dG94WVtqaFoFDroMOh4NHP4EjToGqNc6eZSPU7Ec5Ay08rBH1_12NP8qqwRsX6HGYdX73zY/s1600/Miles+and+the+Blue+Bucket.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLHaRZSLlFPxCFNuBmQII37c2qwexLUhvzOl8GL6pXPeEoYW4W6G4wnc8wT0iZ9fvNeax7dG94WVtqaFoFDroMOh4NHP4EjToGqNc6eZSPU7Ec5Ay08rBH1_12NP8qqwRsX6HGYdX73zY/s400/Miles+and+the+Blue+Bucket.jpg" width="322" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles collecting water at the beach on his birthday.</td></tr>
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So what I learned or really saw first hand at this meeting, is that it is all about money. Bottom line. All we have to prove is that paying for our son to go to United Children's will be cheaper for LAUSD than us asking for a one on one aide at the public preschool. And if we have the money for a lawyer to do all the paperwork and phone calling, then even better. Yep, it's about the money. I mean, I knew it, but it was so obvious at the meeting. Everyone present knew that we weren't signing anything and that we were going to move forward and that we are doing the best thing for our child. But everyone present had to cover their asses from their bosses so they had to pretend to convince us to stay within LAUSD. Everyone played their little part in the game and when the meeting was adjourned and we were off the record, they all wished us luck and said that we were doing the best for our child. Yeah...that's how it went. Crazy.....<br />
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Once the meeting was over on Thursday, I felt a huge weight lifted. Miles had his last occupational therapy session on Friday and both the OT and I cried bittersweet tears. I realized that I'm the one that's had a real tough time with Miles's transition to preschool. Sure, Miles is in a new environment, but he seems so happy there that it's as if he's been there forever. But for me, it was hard to let go of my connection and need for his therapists, their support and even their friendship. Miles turning 3 signifies a huge shift. He's not a baby anymore, he's a big boy, a toddler. My baby's growing!! And on Saturday we celebrated his birthday doing all his favorite things: playing at the beach, a long nap, dinner at Vegan Glory, his favorite restaurant, and finishing the night with his favorite movie, Toy Story. We sang Happy Birthday three times on Saturday and each time Miles blew his candles and clapped with such joy and excitement. This was the first year Miles could actually blow his candles and I think he understood full well that it was his birthday. Amazing. Love!<br />
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<tr><td class="tr-caption" style="text-align: center;">Miles & his speech therapist naming animals.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY-thGXjHn66L4FOINCVOH7RCz3djQCPV0-3lktQDqY9JAkt2dUChGwakh-syxkoZz1sEtf2d4pmS2uneTF6M8n95epdDW6-H-jt4-TBwghRt6AuFTddbT7Fq4lv0_TyZDr5Ko594nGAo/s1600/_MG_7100.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY-thGXjHn66L4FOINCVOH7RCz3djQCPV0-3lktQDqY9JAkt2dUChGwakh-syxkoZz1sEtf2d4pmS2uneTF6M8n95epdDW6-H-jt4-TBwghRt6AuFTddbT7Fq4lv0_TyZDr5Ko594nGAo/s400/_MG_7100.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles & his physical therapist playing around.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgIMfEqmxPGxTckvxE7SqkXeS1mncmwZbmI5mzeRn8e_3gJXGYLSfQEp0mT3XeyRJmnB40G2vBj13chNid4c-vqBqnVSEI8e8QCDck_Qd5dRM6zOfQf1MxMTaw6hpapD21fOkpJ5rGC8Q/s1600/_MG_7115.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgIMfEqmxPGxTckvxE7SqkXeS1mncmwZbmI5mzeRn8e_3gJXGYLSfQEp0mT3XeyRJmnB40G2vBj13chNid4c-vqBqnVSEI8e8QCDck_Qd5dRM6zOfQf1MxMTaw6hpapD21fOkpJ5rGC8Q/s400/_MG_7115.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles & his occupational therapist having fun!</td></tr>
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com3tag:blogger.com,1999:blog-4251946852676608128.post-73587958471484537822012-08-29T12:26:00.001-07:002012-08-29T12:28:29.968-07:00Doubt<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjyZEsKfkV8iaUN-CiRPNjpFcnw8eM_Om-k_kp_Kj0TOjkVv-onCss_yN071FDBF5IXf37mfUBpt0zshi_DSWMkZaYQD7Phyphenhyphen9ZxVwC4gzRgS9jtSGUUq_oja3IVX2jmOf6YveQ6Qar2KU/s1600/_MG_5143.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjyZEsKfkV8iaUN-CiRPNjpFcnw8eM_Om-k_kp_Kj0TOjkVv-onCss_yN071FDBF5IXf37mfUBpt0zshi_DSWMkZaYQD7Phyphenhyphen9ZxVwC4gzRgS9jtSGUUq_oja3IVX2jmOf6YveQ6Qar2KU/s400/_MG_5143.jpg" width="400" /></a></div>
<br />
<br />
The LAUSD assessment reports on Miles came in and they are making me doubt myself and everything I know about him. The thing is, the reports are not really that bad. They give a somewhat accurate portrayal of Miles on the day of his assessment. Of course, it was not Miles at his best and he didn't show them all that he can do, so it would be impossible for them to imagine what he is capable of doing. According to the IEP team, Miles should be placed in a PreSchool Intensive program (PSI). Basically, a preschool for kids with moderate to severe disabilities, who don't mix with the general ed population. What?? Seriously?? This is Miles, the kid who's been going to a typical daycare since he was six months old! The kid who plays the drums and reads books, loves to dance and play jokes on us. The stubborn, wilfull kid who knows how to get his way. So am I kidding myself? Is Miles really that cognitively delayed? Have I been lying to myself all this time because I'm his mom and I don't want to believe he's that delayed and unable to keep up in a classroom setting? Why am I letting these people and their stupid reports get to me??? I know Miles. I know he understands more than we think. I know he's got more words than he chooses to use. I know that he loves being around typical kids and imitating them. I know that he wants to and needs to be treated just like any other kid, that's how he will thrive. Agh!!!! I hate this situation for having power over me!!!!<br />
<br />
We checked out the preschool that they recommended for Miles and it's actually a wonderful setting with a loving, nurturing teacher....for kids who have more severe disabilities than Miles. Only one of the kids in the class was verbal. None of the kids really interacted with each other. There was nobody there for Miles to model. It is a great program for the kids who need it. Miles needs something else. Then we checked out a PreSchool Mixed program (PSM); for kids with mild to moderate disabilities. Also a great teacher with a nice little classroom and the kids were definitely more functional, but they were still kept separate from the general ed population, never to mix with the typical kids. That's not okay for us. That's not okay for Miles.<br />
<br />
I've been feeling very emotional all week as we visit the schools, read the reports, and prepare for Miles's IEP tomorrow. The situation is even more emotional for me because this is also Miles's last week of therapies, so we are having to say goodbye to his amazing team of the past 2 1/2 years!! His birthday is on Saturday and I'm supposed to be planning a birthday party. I booked my first big gig in a while, so I've been working and running around like a maniac. Miles has been acting like a little shit head, just being incredibly difficult to handle, making me doubt myself even more. Oh...and the stupid washing machine broke so we have a pile of dirty clothes accumulating and making me feel even crazier!!! I'm a woman on the edge, a cookie ready to crumble....don't ask me any questions, let me just get through the next few days please!!!!!! When I dropped Miles off at school today, one of the teachers asked me how I was doing and I nearly cried while saying, "fine, just fine".<br />
<br />
Why is it that big things always culminate at the same time?! It couldn't just be Miles's 3rd birthday and the end of his therapies. Nooooo, it had to be the same freaking week that all these other big things in life are happening!! Every damn day is a challenge. Every single day there is a meltdown at home. Zach melted down last night around the kid's bedtime, so he went for a walk with Miles to cool off while I put Ella to bed. When he returned, Miles was fast asleep. So then it was my turn to take a walk. I filled a large glass of wine and set out to see the sunset...and amazing one last night. As I stood there watching the colors on the clouds turn from orange to pink to red, I saw my place in this large Universe. I am tiny, a tiny little piece of the puzzle, yet an integral part of the puzzle. I fit in this puzzle perfectly, just as Miles and Ella and Zach and everyone does. We are all here to ebb and flow with the energy that makes the world go round. And if I just allow myself to go with the flow and lead from my truth, all will work out as it's supposed to. That's what I believe.<br />
<br />
So tomorrow morning, as we face the IEP team and start negotiating with them, I will hold on to the truth: that Miles deserves the best education and environment possible for him to succeed. Even if he does turn out to have moderate to severe cognitive abilities, we can still give him an amazing environment that will propel him forward, not stunt his growth. LAUSD doesn't have that environment for Miles. We found it at United Children's and that's where he'll stay.<br />
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Oh....and I do have to mention that the only saving grace on this otherwise maddening week has been that Miss Ella Grace has slept for at least 11 hours straight every night, for the past 4 nights! It's like she knew we needed a little brake. So thank you Ella, for letting us rest our weary heads at night....because mama and papa sure need it!Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-49570377851690520332012-08-20T11:28:00.002-07:002012-08-20T11:28:35.904-07:00LAUSD Assessment: the blow by blowThe night before Miles' first LAUSD assessment, Zach and I discussed our approach. First off, we made a pact to be calm and relaxed the next morning so that Miles could feed off our peaceful energy not our frantic one. We made a list of Miles' strengths and weaknesses, our concerns for his future, adjectives that describe him and what we would like him to work on. We talked about giving them the information they need without too much elaboration, so it would be just enough. Not too much, not too little. We left everything packed the night before so that we could leave early without much rushing around. Ella's sitter was set to arrive at 7:30am and we would be on our way by 7:45 the latest.<br />
<br />
That morning, everything was going as planned. Miles was in a good mood, we were ready to leave but for some reason we didn't get out of the house until almost 8am. I let my anxiety get to me and started snapping at Zach in the car. I wanted to stop for a coffee but now we had no time. WTF!!<br />
<br />
Zach: How was I supposed to know you wanted coffee?<br />
Me: Because I have coffee every morning. Don't you want coffee?<br />
Zach: No, not today. It will make me talk too much and you told me not to talk so much.<br />
Me: Ugh! Sigh! <br />
<br />
Silence<br />
<br />
Me: I'm sorry, we said we wouldn't argue this morning. My bad.<br />
Zach: It's okay. I didn't know you wanted coffee.<br />
Me: How would you know, I didn't tell you.<br />
Zach: It's okay.<br />
Me: Yeah, it's cool. I'll have coffee later.<br />
<br />
Fight averted. Phew! Miles was chillin' in the back seat, playing with his dinosaur puppet.<br />
<br />
We arrived at the school parking lot with a few minutes to spare. We made our way to room 137 where the speech therapist and school psychologist were setting up. While we waited for the LAUSD coordinator, the occupational therapist, physical therapist and adaptive PE teacher, they decided to start with our interview. So we sat down and started the process. Meanwhile, Miles walked into the classroom, full of new toys and kid games and went straight to work- playing! <br />
<br />
Okay, so here's Miles, a very busy toddler, hard at play within the first few minutes of getting to this new environment. You'd think these evaluators would engage with him right away: watch him, play with him, ask him questions. You know, evaluate him. Because he's a toddler, a ticking time bomb. His attention span will only last for a set amount of time and once it's gone it's meltdown city! Instead they start asking us questions about him, about us, his history, strengths, weaknesses, stuff pertaining to speech and development, every now and then glancing at him. The speech therapist made a few feeble attempts at communicating with him. Then back to questions for us. Miles is playing with some animals and starts pointing, I ask him what he wants, in Spanish. Oh shit, monkey wrench!!<br />
<br />
The speech therapist shoots me a hard look, then--<br />
<br />
Speech Therapist: You speak to him in Spanish?<br />
Me: Yes.<br />
Speech Therapist: You can't do that. You need to pick a language!!<br />
Me: (quizzical look, what?)<br />
Speech Therapist: You can't speak to him in two languages!!!!<br />
<br />
Honestly I was stunned and couldn't think fast enough to respond. But Zach could.<br />
<br />
Zach: We don't care what you think, we are speaking to him in both languages and that's our choice!!<br />
Speech Therapist: It's going to be harder for him to learn to speak!<br />
Zach: Half of you people say one thing the other half say something else, so obviously you don't really <br />
know anything. It's going to take him longer to speak regardless and we'd like him to be able to at least <br />
understand Spanish. He's our son and it's our choice and this is not up for discussion.<br />
<br />
(Uncomfortable Silence)<br />
<br />
Holy shit! Go Zach!!<br />
At this point my mind finally caught up with the conversation, so I cut the silence with--<br />
<br />
Me: Look, I speak in Spanish, it's who I am, I'm not going to change that. We also have a daughter and we<br />
want her to speak Spanish as well, so I'm speaking in Spanish to my kids. I'm not treating Miles any<br />
different because he has Ds.<br />
<br />
At this point it was the speech therapist who had a stunned look in her face, but she shut up about it.<br />
Good. Lets move on.<br />
<br />
Meanwhile the OT and adaptive PE teacher had shown up. They decide to take him outside to test his physical skills. Miles is delighted, he loves playing outside and with a ball! Forget about it, he's pysched! Inside, the questions continue.<br />
<br />
They come back inside, Miles isn't too happy about it, but he finds some other toys to play with. Finally, the speech therapist and psychologist try to engage him in some focused play with blocks and puzzles but Miles isn't having it. He wants to play outside and ooh, wait, the PT shows up with a really cool car! He wants to play with that. Basically, this goes on for a while. Now that it's been about 45 mins, the speech therapist, phychologist and OT are trying to get Miles to sit at a table and play with them but he will not cooperate. He runs away, throws himself on the floor and goes into full tantrum mode.<br />
<br />
He's hungry and tired. It's almost 10am and we've been here for an hour, how on earth do they expect him to perform now?? I get him his snacks, which he sits and eats and afterwards, he plays a little bit more with them.<br />
<br />
To make a long story longer, the whole thing was just goofy and felt a little bit like a waste of time. They did it all wrong. They should have played with Miles inside while he had the focus, taken him outside when he couldn't be contained anymore and asked us questions while he was outside. Each one of these ladies were odd in their own way, from the psychologist who was way too stern for someone who supposedly works with children. She sacred me, imagine how she makes kids feel! To the funny looking PT with her fake wig and too much make-up on. The adaptive PE teacher was super nice, with her bird's nest hair and sweatpants, but what she saw Miles do? I have no idea. The OT was like a quiet mouse in the corner, also very sweet but she seemed afraid of speaking out loud. And the speech therapist, beside our little Spanish encounter, was very nice. I mean really, they all seemed like nice people but other than the PE teacher, I don't think any of them ever really work with kids. They evaluate them, but they are not clinicians. They generate reports that create an educational plan for children with special needs. That's what they do. Are they good at their job? Well, I'm sure they do it all the time but I couldn't tell if they were any good. I can tell you that they were disorganized and scattered and not paying attention and how they will successfully evaluate hims beats the shit out of me!<br />
<br />
But apparently this is all normal. Now that I've spoken to other parents who've gone through these evaluations, this is the way they're done! And it's why we, the parents, end up having to hire advocates and lawyers to help us get the Individualized Educational Program that we know our kids deserve. I am really curious as to what IEP these evaluators will device for Miles because the whole evaluation was kind of a joke. The psychologist is set to visit Miles in his school this week and our IEP is scheduled for next week, just two days before Miles' 3rd birthday. We have retained a lawyer who will accompany us to his IEP and make sure that things go smoothly. Basically what we want is for LAUSD to pay for Miles to go to United Children's Learning Academy, the school he is currently attending and where we know he will flourish as an individual. <br />
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So stay tuned and I will let you know how it goes!!<br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-23392519015674220622012-08-01T11:57:00.001-07:002012-08-01T11:57:24.664-07:00Miles Is In!!This morning I dedicated my yoga practice to Miles....and I cried. I cried because he works so hard. He is fearless and truly happy to be alive. And that's the spirit I want to bring to my practice, to my life.<br />
I cried out of happiness and love. I cried because he's in my life. He's my son and I'm so fortunate to go on this journey with him. So fortunate for the lessons that I've learned and will learn from him. <br />
Today's lesson is that hard work and practice does pay off, in any area of life.<br />
<br />
Since he was born, Miles has worked hard to achieve everything. The past few months have been particularly difficult, full of changes: new sister, new school, constant change in schedule, lots of testing and he has done a wonderful job of keeping up with it all. It's been a lot on him physically and emotionally. At times he has responded by being more needy, throwing tantrums, regressing in some areas (like throwing food on the floor!), but he's also become quite a dancer, he's running and can almost almost jump! Sometimes he's rough with his sister, but he Loves her and wants to play with her. He gets carried away with his excitement, his love. He shares his toys and has been teaching her how to play the drums and the xylophone. (Yes, it's a cute sight!). So as difficult as it's been, he is still kicking ass and I'm so proud of him. <br />
<br />
I am particularly proud because this morning I was told that he is officially accepted into the school we want him to attend. A wonderful school he's been attending and loving during their Summer program. He made it in!! He charmed his way and showed his worth and they want him around for good! My sweet little dude, with his Big personality worked hard and made it in. Now we have to fight for him. We need to convince LAUSD that that's where he needs to be. I've already placed a call to a Special Needs Education Lawyer who comes highly recommended. So now we need to kick ass for him. <br />
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Here we go, let the games begin!!!Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com3tag:blogger.com,1999:blog-4251946852676608128.post-1403397256880315482012-07-25T12:14:00.000-07:002012-07-25T12:23:33.601-07:00First Assessment<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXfHhlnqPzNiVRGSSQJ1WTfH1H0xPZuqnVNUB25gwRr7GfUWRr53q0pB7HHhXjOE9D-hYnEwNkvzGt-Q1HLJcZmEQ4AIKM7hR-YhUGt1TSV3xN_5IRIlDO2kiPgCOHN-9mz9w2a56Z5MU/s1600/MIles+goes+to+school.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXfHhlnqPzNiVRGSSQJ1WTfH1H0xPZuqnVNUB25gwRr7GfUWRr53q0pB7HHhXjOE9D-hYnEwNkvzGt-Q1HLJcZmEQ4AIKM7hR-YhUGt1TSV3xN_5IRIlDO2kiPgCOHN-9mz9w2a56Z5MU/s400/MIles+goes+to+school.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles excited about going to school!</td></tr>
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<br />
There are so many wonderful people who have helped us tremendously with Miles during the last two and a half years. We've been blessed with a team of caring and knowledgeable therapists for Miles. His physical therapist, occupational therapists, speech, infant stimulation teacher and all his preschool teachers have nurtured Miles' independence and progress and they've taught us how to help him in so many ways. In just about a month, Miles will turn 3 years old and he will be done with Early Intervention and therefore will lose all these amazing therapists. Although I'm looking forward to a more manageable schedule, I'm sad to see all these people go. They've become a part of our family. We sit and talk about life not just Miles. I've gotten to know these people for the past two years and they have helped us prepare Miles for his next step: entering LA Unified School District. What does that mean? A lot!<br />
<br />
Once Early Intervention services are over (when a child turns 3), they get turned over to the public school system, or LAUSD. It becomes LAUSD's responsibility to provide an environment in which our children can learn and grow with the means necessary, whether it be special ed teachers, classrooms and facilities. This way our kids can be mainstreamed, learning in an environment with typical children. Of course there are private schools out there that are just for kids with special needs, but not all parents can afford them. And they're not the right place for some children. For example, Miles thrives in an environment with typical children because he does so much modeling of his peers. Miles went "pee pee in the potty" today. Why? Because he's been watching the kids in his school use the potty. In his old school, where all the kids had special needs and very few were potty trained, Miles wasn't exposed to it as much and so it didn't interest him. That's just one of the many things I know he'll learn from being in a typical environment.<br />
<br />
Unfortunately, there's a lot of bullshit....pardon me, bureaucracy, that goes along with putting our special needs child in the public school system. All kids with special needs going into public school must first get evaluated to asses their skill level in a multiple of areas. The school system then uses this to create an Individualized Educational Program (IEP). The IEP will determine their placement in school (whether it's an inclusive environment or not), their goals and if they are eligible for extra therapies such as speech or physical therapy. For their whole school career, our children will be known as "kids with an IEP". In a perfect world, their teachers would actually look at their goals and try to achieve them, they would receive the therapies that they need to succeed and they would be placed in the appropriate programs for them to flourish. We don't live in a perfect world and it's a broken system. So this is where shit gets real for us!! We are leaving the soft cuddly world of Early Intervention and entering the the hard, tough world of IEP's. We've had it pretty easy until now and we're bracing for a fight. A fight for Miles to receive the right education that he deserves and that will best poise him to succeed in life. So far, we have not found that education in the LAUSD, we found it in a non-public school (a private school who accepts kids with IEP's) and it will be our job to get LAUSD to pay for it.<br />
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I'll explain more about this as it comes up, since I'm sure I'll be writing a lot about it in the next few months. Suffice to say, our first big step in this major transition is coming up tomorrow with Miles' first major assessment by LAUSD. Tomorrow morning at 8:30am, Miles is being evaluated by a speech therapist, an occupational therapist, a physical therapist, a psychologist, a behaviorist and an adaptive PE teacher. Yep.....six different people are going to take about an hour and a half to "test" Miles and ask us questions about Miles and from that hour and a half they will come up with his IEP. Never mind that he's a toddler with a 20 minute attention span who doesn't like to "perform" on command and might or might not show off his skills tomorrow. Yep, that's how it works. So as you can see, it's really up to us, the parents, to advocate for our kids because we're the ones who actually know what they can and can't do. It will be up to us to show LAUSD what Miles' strengths and weaknesses are and where he needs to go to school to succeed. It's going to be a fight but we will not give up. Miles deserves it.<br />
<br />
The state has categorized Miles under the label of "Mental Retardation". Miles is soooooooo much more than that. He has Down syndrome, which means it will take him longer to meet most skills and goals, it doesn't mean he's dumb or incapable. He is actually the complete opposite of that: curious, intelligent, funny, cunning, interested, smart. The people who are supposed to be providing him with his education for the next 15 years consider him mentally retarded...there's something wrong with the system. And we have to make it right.<br />
<br />
I am nervous about tomorrow but I know I don't need to be because Miles will be himself and regardless of how these people evaluate him, we will make sure that Miles gets the best!!<br />
<br />
<br />
<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-70897051789890573992012-07-01T21:58:00.004-07:002012-07-01T22:00:37.172-07:00They Grow So Fast<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgayprSAhqTlg9bGGpZcINuKOe50-yznPGzC53odpb7EIt4tKqc4RYY99jXMhZzK0_9OnKvQz1d_yS4bZvKryP5rmGloJm01JkILCemlnp2A27jYWtcGWuEC48XxsEateE4tZqrvl1PWP0/s1600/_MG_5940.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgayprSAhqTlg9bGGpZcINuKOe50-yznPGzC53odpb7EIt4tKqc4RYY99jXMhZzK0_9OnKvQz1d_yS4bZvKryP5rmGloJm01JkILCemlnp2A27jYWtcGWuEC48XxsEateE4tZqrvl1PWP0/s400/_MG_5940.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ella Bean....as we call her</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<br />
When I was pregnant with Miles I signed up for one of those websites that gives you a weekly rundown of baby's development in utero. I used to follow it religiously. I looked forward to each new week and finding out how many inches baby should be and what organs were developing at the time well so that I would have a very healthy baby. It was like a little ritual I had.<br />
<br />
Once the baby is born, the website continues sending you weekly emails with your baby's progress, like "Your baby is 4 weeks old. At this point your baby should be starting to....". When Miles was born I couldn't bare to read those weekly emails. I was angry at them, angry that they only included milestones and development for a typically developing child. It was too painful reading where Miles "would" or "should" be if he didn't have Down syndrome. I remember even crying once as I read one of those weekly updates. That's when I took myself off their list. No need to put myself through that crap! <br />
<br />
Well, about three months into my pregnancy with Ella, I decided to sign up for those emails again. I realized that I hadn't been paying as much attention to this pregnancy and where baby was in the process. I wanted to give as much love and attention to this pregnancy as I had to my first one with Miles. I didn't read the emails religiously and I didn't spend as much time visualizing the baby's progress, but when I had the time, I did it. And it was nice. Then Ella was born and everything was fine. She is a typically developing child and I'm having a totally different experience seeing her develop. In fact, this time it's the reverse; I actually look forward to reading the weekly emails and finding out where a baby her age should be in her development. And the crazy thing is that she is right on target. It blows my mind!! A couple of months ago I read that she should be starting to make sounds and babble. Like two days later Ella started babbling like crazy. On another email I read that at these many weeks, she should be really interested in faces and be responding to different facial expressions. Well Ella had already been doing that for a couple of weeks.<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitgE07xtugNYvAwVISDWQ5YlT1nYM8zLOC6ZidwRbcJ1nOZyMSsAaxkXDphrZAuaIQCEyyyRMOrGKqac5XNoZZez6a6LlWHVrv2aDpsvBWuSzbeD0QRCim4e0bnY2NnmOZwvUsY_6TqmY/s1600/_MG_6363.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitgE07xtugNYvAwVISDWQ5YlT1nYM8zLOC6ZidwRbcJ1nOZyMSsAaxkXDphrZAuaIQCEyyyRMOrGKqac5XNoZZez6a6LlWHVrv2aDpsvBWuSzbeD0QRCim4e0bnY2NnmOZwvUsY_6TqmY/s400/_MG_6363.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mama and Ella</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
She turned five months today, five months!!! And she's already turning from side to side, grabbing her toes, babbling and making all kinds of fun sounds. She likes to reach for, kick and swat toys, stick them in her mouth and chew them up. She loves to laugh and be entertained, she wants to try our food (and she will start eating this week!), she holds herself up so well and loves doing tummy time, she's very social and she's growing like crazy. Every week, sometimes every day, she does something new. And I just can't believe my eyes. This is what our friends experienced with their kids, this is what they talked about when they said, "they're growing so fast". Miles has obviously grown and development tremendously in his 2 years and 10 months, but it's been painstakingly slow!! Each milestone has been a lot of hard work and tons of practice so it blows my mind to see how Ella just does things. We don't have to teach her how to do them, she is figuring it out on her own. And sometimes it does seem to happen from one day to the next. I can say now that I get it, my little baby is growing so fast!! But I am loving it. I love that I get to have both experiences and that I am learning so much from both. They are both exciting and amazing and a miracle. They really are. It sounds corny, but man, I truly feel blessed to have these two very different but totally related little angels in my life.<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ1JE8LqSyh5rfTiUOscCyOlqKEsrb-oHH90gaqNdHobfv9gIopsvR4xIDv4J1PBxxOYWuzKzygEKDQaa1TpjA1qKo134wkG6Ee0UzXdSlKehoIlg_DOAaijNZmvwLIQe6eC6azZVdXFw/s1600/_MG_5773.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ1JE8LqSyh5rfTiUOscCyOlqKEsrb-oHH90gaqNdHobfv9gIopsvR4xIDv4J1PBxxOYWuzKzygEKDQaa1TpjA1qKo134wkG6Ee0UzXdSlKehoIlg_DOAaijNZmvwLIQe6eC6azZVdXFw/s640/_MG_5773.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles & Ella love!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<br />
<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-2521009560322153262012-06-25T11:34:00.000-07:002012-06-25T11:38:58.612-07:00What a Diiference a Day Makes<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSwrR3i7MrqTteABH-ZWZ-uMgU_sonmYpBvltNnvHN1gfoWrww22dW0THaQoM3Ez-BeXvR9JG_KOTcM3m6_hilRei0k9DsVwHJcya0SJW1tky-fstvgQSTedsl5dUTvmcDRW3IepNaUgk/s1600/_MG_6292.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSwrR3i7MrqTteABH-ZWZ-uMgU_sonmYpBvltNnvHN1gfoWrww22dW0THaQoM3Ez-BeXvR9JG_KOTcM3m6_hilRei0k9DsVwHJcya0SJW1tky-fstvgQSTedsl5dUTvmcDRW3IepNaUgk/s640/_MG_6292.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Family!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<br />
Like I wrote in my last post, last week was tough. Zach and I, both sleep deprived, were getting on each others nerves,
the kids were driving us crazy and all of lives' responsibilities were
wearing us down. I was done with my role as a mother and wanted nothing more than to switch for the role of carefree bachelorette! But since I'm not living in a Hollywood blockbuster, more like an independent film, I can't switch out my role. I make do. So I switched my mentality, did some breathing and talked to Zach. Wow, what a difference that made!<br />
<br />
Sunday was good. We planned our day better, we all ate better, slept better and were just nicer to each other. We did our chores and got hang out and visit friends. We drove all over LA and Ella didn't cry the whole time and Miles didn't throw one tantrum. What was different? We were relaxed. The kids vibe off of our energy so much and if we're stressed, anxious, depressed, angry, they feel it and they stress right along with us....causing us even more stress. It's a vicious cycle! So we were more aware of each other and what we needed and met those needs with more ease. God what a difference a day makes!<br />
<br />
And this morning was AMAZING!! Ella woke up only once last night and slept until 7 this morning! And Miles, the early riser, woke up at 6:30am and was well rested and happy!! He ate a big breakfast: cereal, toast and egg. He played. We played. He didn't fight me to change his diaper (that's a miracle!) and he didn't whine about wanting to watch TV. In fact, he had been such a good boy and I needed to get dressed so I was planning on letting him watch some TV while I got myself and Ella ready for the day. But I didn't need to because he wanted to play outside instead. AND the amazing part is that he very clearly communicated that to us. He signed "open" then pointed at the door and signed "shoes" In other words: put on my shoes I want to go outside. What???!!! You want to know something even more crazy? Last night while I was reading him books before bed, he pointed at a book and said, with words not sign language: "Ma, read this one." My heart stopped for a second while I processed what had just happened. He didn't say it that clearly, but as my mind scanned what I heard, I knew that was exactly what he said. I mean, shit, he was pointing at the book!! So I said back to him, "You want me to read this one? Ok, lets read this one."<br />
<br />
I was floored, seriously, I would have fallen down if I wasn't sitting. It was AMAZING and it was a glimmer of what will surely come more with time. Miles is truly trying to communicate and I know that he understands a lot more than he lets on. He's also a toddler, who listens when he wants to. But he is way smarter than people think and he is starting to figure it out himself. If he talks, we listen. <br />
<br />
He woke up this morning saying "papi, papi, papi". And I came in the room and said, "What about me? What about mami?". So he started repeating mami. At night before going to bed I tell him, "Okay, it's time to go to sleep. I'm going to put you in your crib and you're going to go to sleep and dream with the angels, okay?". He always nods or says "yes", but I wasn't sure he was understanding me until the other day when he said yes then grabbed his Elmo doll, got off the couch, walked to his crib and waited for me to lift him up. Success!!<br />
<br />
Miles is processing so much on a daily basis and sometimes I forget that these are all just growing pains. We are all going through our own growing pains as we continue on our little journey called life!Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-151979913453837542012-06-23T22:42:00.001-07:002012-06-25T11:35:34.163-07:00Too much!This past week has been too much. Just too much!! I've lost my patience with the kids every single day. Ella's been sick for two weeks, Miles has been whiny and stubborn all week, I've had a bunch of work opportunities but none panned out, I've ran around going to meetings and doctors and seeing people, trying to be social.....I don't have the time and I'm tired. No, I'm exhausted and sleep deprived. And I want to go back to having some kind of semblance of a normal, fun, easy life but that's impossible at this point! On Tuesday I thought it was Thursday. How depressing when I found out it was Tuesday. I just wanted to run away from my life all week and hide out in a movie theater watching every single dumb blockbuster imaginable. <br />
<br />
I am so done with Miles' busy schedule. I'm tired of running around town taking him to therapies, fighting with him to get in the car and then fighting with him to get out and keep his shoes on. I'm tired of trying to get Miles to eat something other than brown rice and chicken and this week it was a fight just to get him to eat that! I'm tired of fighting with him about the TV. All he wants to do is watch TV and when we don't let him he whines incessantly. I'm tired of constantly cleaning up after everybody in the house. I'm tired of cooking. I'm tired of getting up in the middle of night to feed Ella. I'm tired of trying to get her to sleep. I'm tired of constantly cutting her nails. I'm tired of changing so many diapers for both Miles and Ella. I'm tired of feeling angry and sad and annoyed. I'm tired of apologizing to people for why I couldn't call them back. I'm tired of phone calls. I'm bummed that I haven't booked a job in a while even though I've been auditioning. I'm bummed that I never get to read or write anymore. Agh! The list could go on and on and on but I think I've made my point.<br />
<br />
I need some freedom. I need a break. But really I just need a mental shift because the reality is that I'm not getting a break, not a real one anyway. A few hours here and there are nice, but they're just a band aid. I love my kids and I do love my life, but right now I want to run away from it all for about a month. I want to sleep and watch movies and TV and read a book and exercise and lounge around. That's what I want for a whole month. And you know what the real sad thing is? I just got back from Hawaii two weeks ago!!!! I got to go on this amazing vacation with my whole family and go to the beach with the kids and play in the sand and drink and eat and take naps here and there. But it was still exhausting. I'm still mom on vacation with the kids which means I'm still on duty. I want to be fully off duty. This week, I needed to be off duty. But that's impossible. So.....a change in attitude, a mind shift is what I need. I'll start tonight with some breathing and letting go and maybe, just maybe I can start next week with a smile, an open heart and patience. Tons and tons of patience!Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-59748273519434595442012-05-25T11:23:00.002-07:002012-05-25T11:23:49.634-07:00Different, Not LessLast night we went to the funeral service of an amazing 12 year old boy named Timothy Borquez, who had Down syndrome. He died in his sleep a week ago. It was the saddest yet most heart warming funeral I have been to. There must have been 500 people there saying their goodbyes to Timmy and supporting his family through their tragic loss. He and his family are a big part of Club 21, an incredible organization for kids with Down syndrome and their families. Club 21 has become our main Down syndrome community and support group over the last year and Timmy's death is a huge loss to our community. But not just to our community, his death is a huge loss to all those who knew him and that was evident by the amount of people present there last night. <br />
<br />
Timmy's life was an inspiration to those of us who have younger children with Ds. When Timmy was born, his parents didn't know if he would ever be able to lead a "normal" life and do simple things like play ball. Well, the night before he passed away he hit a baseball onto the roof of their house. He did all the things kids his age did and more because he did it all with a gentle soul, a kind smile and lots of hugs for everyone. He was exactly how I picture Miles to be at 12 years old: outgoing, gregarious, athletic, compassionate, fun.....<br />
<br />
Anybody's death is tragic, but the death of a child is just....well,
it's intense. Ever since I heard the news about Timmy a week ago I
haven't stopped thinking about his mother. What it must have been like
to walk into her son's room that morning. I don't want to go there, it
scares me to even think about the loss of my son or daughter, but I
can't help it. I'm a mom. And I'm the mom of a child with Down
syndrome, so Timmy's death has hit home in many ways. In 1970 the average life expectancy for a person with Down syndrome was 20 years. Back then it was still accepted for parents to institutionalize their kids with Down syndrome. There was little to no early intervention or decent health care for for those institutionalized and they weren't cared for or loved the way any human should be. So they didn't flourish. How could they? How could anybody? <br />
<br />
Today people with Down syndrome live an average of 55 years with many of them living into their 60's or 70's, thanks to science and medicine. But mostly I think it's thanks to the fact that society has started to understand and accept people with Ds a bit more. Back then, people with Ds were considered "less than", unequal, incapable, unworthy. In fact, there are still people out there who feel that way today. Those people have surely never met someone with Down syndrome. They've never received a loving hug from someone with Ds. They haven't experienced the sweet laughter and excitement of a child with Ds. They've never felt the pure love and joy of life that someone with Ds can share. For if they did, they would understand that people with Down syndrome are not less everyone else. They are different, not less. Miles is different, not less. Timmy was different, not less. In fact he was more, for he led his life with true compassion and equality for all. Now there's someone we should all learn from! <br />
<br />
Timothy Borquez, thanks for being an inspiration to so many. Thanks for sharing your life with us. <br />
May you Rest In Peace.<br />
<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-77744516143421724602012-04-30T09:47:00.004-07:002012-04-30T09:48:32.299-07:00We Have Communication!<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EO9-wUTrAuad_UYQ154nPS_aYglYymvwb5mvMmJjhLIMuphAOno3EhfYZkzYymswMYMP4NliwvhrjosrYfhevO_USWZY8SK87wfLtUUJ91Z4bzWXJR8TroDGjMpI00g5ndBu2qkEZVI/s1600/_MG_5546.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EO9-wUTrAuad_UYQ154nPS_aYglYymvwb5mvMmJjhLIMuphAOno3EhfYZkzYymswMYMP4NliwvhrjosrYfhevO_USWZY8SK87wfLtUUJ91Z4bzWXJR8TroDGjMpI00g5ndBu2qkEZVI/s400/_MG_5546.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles talks to Ella</td></tr>
</tbody></table>
<br />
<br />
The other day Miles asked us for grapes. He cupped his right hand and made little "clumps" of grapes up his left arm. That's the sign for grapes. And he did it so clearly. Another time he tapped my hand to get my attention and then took his index finger and ran it down his neck. He was telling me he was thirsty. And I then I said, "do you want "leche" (while pumping my fist) or "agua" (while taking the sign for letter W up to my chin)? Ladies and gentlemen, we have communication via sign language!! Miles is now at the point where he wants to communicate so badly that he tries everything, from yelling to pointing, to signing to using the few words he can vocalize (the newest one is "down). When I say, "Miles lets go take a bath", he makes the sign for bath and either heads toward the bathroom or protests because he's not done playing. He signs "brushing teeth" and "cookie" and "elephant" and so many more. He's also trying to make sounds, like a "quack" for ducks and "vroom" for cars. His sounds don't really match the actual sounds of what he's trying to imitate, but he is trying and that's what counts here.<br />
<br />
Communication is so important to us and we know it will be key for Miles' development and acceptance into the general population. Currently, speech is the area where Miles is most delayed and we are hoping to make as much progress as possible in the next 6 months before his early intervention therapies run out. Once they do, we will continue to provide him with private speech therapy because we don't want him to fall further behind. Kids his age are already taking notice of his lack of words. He is the most social kid in any group, but already I've noticed some of his peers are starting to wonder why he doesn't speak. And why he yells so much. He yells because he's excited and he doesn't have the words to convey his excitement. So he yells. It definitely puts some children off....as well as some adults. But it's the reality. And as he gets older, the differences between Miles and kids his age will become more and more obvious.<br />
<br />
I remember reading in a book about children with Down syndrome that the developmental differences between typical children and children with Ds are not that different the first two years. But that those differences become more pronounced once the kids turn two. Yikes! If that's true, I'm a little scared because the first two years seemed like they were chock full of differences. But I guess what I'm starting to see is more differences in the way people or other kids treat or see Miles and that's what scares me most. I've gotta brace myself though and remember that I do have friends that will help me through it, because I'm gonna have to be strong to help Miles through those difficult times. Oh, the future!<br />
<br />
But I've gotta enjoy the present and right now what's going on is tons of receptive and expressive communication with Miles.....and Ella! That's right, Miss Ella and I had a 20 minute conversation the other night. She was "cooing" and "ahh-ing", making the cutest sounds ever and I cooed and ahh-ed right back at her! She would smile and even tried laughing a little bit, it was the sweetest thing ever and such a different experience than with Miles. He never quite made those sounds, instead started months later with some babbling, using consonants like ma and ba. There is something intense and beautiful about experiencing both. There really is.<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKz2kkYJFu6bsZNyPQA_Sx_pwajgI1BqI9gtjBgJ5_vsyhNiuCVhkkLhKHF9XQ8ih5BRwroY2jCIwJ58JeKDpTATg5hUDNQpU7nbU1iOhRF5NysUHL_i6ZATmlppWXrHLp53X_TMIKits/s1600/_MG_5534.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKz2kkYJFu6bsZNyPQA_Sx_pwajgI1BqI9gtjBgJ5_vsyhNiuCVhkkLhKHF9XQ8ih5BRwroY2jCIwJ58JeKDpTATg5hUDNQpU7nbU1iOhRF5NysUHL_i6ZATmlppWXrHLp53X_TMIKits/s400/_MG_5534.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles, Ella & Daddy!</td></tr>
</tbody></table>
<br />
<br />
<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-8901184310788192122012-04-10T15:30:00.000-07:002012-04-10T15:30:07.903-07:00Adapt and Deal<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhytZtEgmmeIPywVaoXnDikfKPoK1JnfUJYS9yc9thJAC85mKg_wuUNdSTkofgPT1QOxEcYx5p2rFnSn9ShnfMddzqt6R52CjAnZLg_OGp9FUHyhEWyj-kBZjZLn3qI-EwFDFBmCzodT5c/s1600/_MG_5185.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhytZtEgmmeIPywVaoXnDikfKPoK1JnfUJYS9yc9thJAC85mKg_wuUNdSTkofgPT1QOxEcYx5p2rFnSn9ShnfMddzqt6R52CjAnZLg_OGp9FUHyhEWyj-kBZjZLn3qI-EwFDFBmCzodT5c/s400/_MG_5185.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A good day</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
Sick children. Sleepless nights. Crying. Food on the floor. Tantrums. More crying. Poop everywhere. Whining. More crying. And did I mention very little sleep? It's enough to drive me mad. And it has!! I try so hard to keep it together but sometimes I just lose my cool. This morning was one of those times.<br />
<br />
<br />
Ella was up at midnight, 2:30am and 6am. Miles was up at midnight crying....never a good sign. He woke up this morning a boogery mess. That means no daycare today. There goes my "day off". I really needed a day off. So my conversation with Zach this morning went something like this:<br />
<br />
Zach: "I'm sorry, I know you're really tired."<br />
Me: "It's not the tired thing that has me in a bad mood, it's the kid thing. I'm done with these kids!!"<br />
Zach: "O-kay..."<br />
<br />
Of course I'm not done done with my kids....but I am a little done. Isn't everybody with kids a little done sometimes? They are the cutest, most loveable people in our lives, but they are also a the hardest to deal with. I keep hoping that once we can communicate with Miles things will get easier. Or that once Ella is a bit bigger, sleeping through the night and interacting with Miles, things will get easier. But I'm slowly realizing that we are already communicating quite a bit with Miles....he's just choosing not to pay attention to us. Apparently he's "the best kid" at his daycare and "always pays attention" at preschool, but not so at home! Yep, it drives me crazy. And once Ella is crawling around I'll have to run after both kids, not just one! So maybe it doesn't really get any easier, it just changes and you either adapt and deal or you don't. I'm trying to adapt and deal, I swear I am. <br />
<br />
<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDGw23s0KZcQlkhrmbViNabthIoNJSPQxEI6UQXbp_XmS_LEGOSilM-xAidAt7PHbrt0r1Aw4F1eT-kTY5IqMzRKl56vHHj5RGk7wpXjjlRn6zID2hJ35shaXTOZbIu481f8jiwryKA_c/s1600/_MG_5187.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDGw23s0KZcQlkhrmbViNabthIoNJSPQxEI6UQXbp_XmS_LEGOSilM-xAidAt7PHbrt0r1Aw4F1eT-kTY5IqMzRKl56vHHj5RGk7wpXjjlRn6zID2hJ35shaXTOZbIu481f8jiwryKA_c/s400/_MG_5187.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some days are good</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-40929355974934702742012-04-03T16:08:00.005-07:002012-04-03T16:11:02.632-07:00Guilt And Other Things<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlBVolaS-GxHdHb0ssi5kZ8fOCvgUk8gzey-UKsQOJAnGKWyThIdPTbMrxW1zRV9OQtOmrRRip7F9FxBpLOnBEB6GZ80GD_sE69oVrB9ssIO_92dKlgYzAeFZSGr1rDCNNheKc-hVUqkI/s1600/_MG_4736.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlBVolaS-GxHdHb0ssi5kZ8fOCvgUk8gzey-UKsQOJAnGKWyThIdPTbMrxW1zRV9OQtOmrRRip7F9FxBpLOnBEB6GZ80GD_sE69oVrB9ssIO_92dKlgYzAeFZSGr1rDCNNheKc-hVUqkI/s400/_MG_4736.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles & Ella "talking"</td></tr>
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It’s been two months since Ella was born and I’m finally starting to feel like the fog is lifting. Going from one to two kids is quite an adjustment for everyone in the family. You have to make physical, mental and emotional space for this new little being. There are days when that’s easy and days when it’s not. So I’m trying to take it all one day at a time.<br />
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For Miles, not being the center of attention has been difficult. He likes babies and was interested in his sister from the beginning, giving her kisses, saying “hi” and wanting to hold her. Then he realized she wasn’t leaving and that our attention was split between the two of them and that’s when started acting out with us. He got very needy, clingy and whiny. He also noticed that we tend to Ella when she cries....so he started crying more. “Crocodile tears” as we say in Panama because it’s just for show. But what an annoying show! He’s been testing our patience, that’s for sure. Then he caught a cold which turned into an ear infection, which turned into a second ear infection and then bronchitis. Kid was sick for almost three weeks! And the cold spread to all of us in the house, including Ella. But now that we’re all feeling much better, I think that Miles is getting used to the idea of having Ella around. He still wants more attention all the time. He whines and cries and throws little fits, but he is also starting to act like a big brother. When Ella is in her swing, he wants to swing her. When she’s in our laps or on the floor, he gets down to her level and “talks” to her. Every night before going to bed he gives her a kiss goodnight and he gets mad if we don’t do the ritual. <br />
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As for Ella, she is a sweet little thing who cries when she has a reason and takes the world in when she’s content. She seems very comfortable around Miles, with all his yelling and carrying on and she doesn’t mind that he sometimes pats her a little too hard on the back. It’s very sweet to see their relationship starting to form. <br />
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For me, splitting my attention between my two kids, my house, my husband and myself has been the hardest thing. I end up having so much guilt over everything! I’m guilty if I spend too much time with Ella or too much time with Miles. I feel guilty if I leave them with a babysitter so I can have some free time. I feel guilty when I’m working and don’t want to come home to deal. It’s like I can’t win, no matter what I do I feel guilty. Until today, that’s all going to change today. <br />
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You see, I’m tired of feeling guilty and the last thing I want is to turn this into a horrible pattern that I teach to my children. I want them to be self assured, open, curious, empathetic, free. I don’t want them to be second guessing themselves and feeling a need to be perfect in all areas of their lives. I want them to live, experience and learn! So my first order of business is to stop judging myself. If I can give myself room to make mistakes, learn and grow then I will be a much better role model for my kids. And a much happier person!<br />
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The second thing I’m doing is making my time with the kids count. I know that the more sleep I get the better mother I am. So there are days when I won’t be able to handle both kids with patience, but I won’t feel guilty about it and I will enjoy the days when my patience and joie de vivre are tantamount.<br />
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And the third thing I’m doing is setting aside quality time for myself and not feeling guilty about it! I deserve a little break, I deserve to get my nails done or take a nap or go out with my husband or sit an watch TV for 3 hours and I shouldn’t feel bad about leaving the kids with someone else so I can have a little me time. I am a good mother, but I will be a great mother if I can rest and remember why I love my life. <br />
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All of this is easier said than done, I know that. I’ve been experiencing it and that’s why I am taking it one day at a time. As with anything difficult in life, that’s the only way to get through it. Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-63892014949463905002012-02-16T15:27:00.000-08:002012-02-16T15:27:39.523-08:00Blue IguanaElla is officially two weeks old. Miles has been a big brother for two weeks. I've been a mother of two for two weeks. Zach has been a father of two for two weeks. How are we fairing? Blue Iguana. What, you say? Blue Iguana. <br />
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<tr><td class="tr-caption" style="text-align: center;">Ella Grace - Feb. 1, 2012</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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It's been an intense and amazing two weeks. Ella's birth was uneventful compared to Miles'. I had a totally normal cesarean, coming off the anesthesia was not so bad and the three days in the hospital were easy and kinda nice. Just like Miles, Ella took to breast feeding right away and though she lost about 8 ounces that first day, she gained it all back within a few days and is now well over 7 lbs! According to my doula and the pediatrician, she's an "efficient and organized" eater.<br />
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Coming home from the hospital has been overwhelming and emotional, full of ups and downs. So far, Miles has been an awesome older brother. He constantly wants to hold Ella and kiss her head and toes. He can almost pronounce her name, though it sounds more like Etta than Ella. And although he's good to her, he's been needy with us. When she cries, he starts crying and wants to be held or he looks at her with a mixture of sympathy and fear. That first week back, he definitely threw a few tantrums, yelling, crying and throwing himself on the floor for no reason. It's been harder getting him to bed on most nights. He's either overtired and throwing a fit or has too much energy and is defiant. The few easy nights we've had where when the four of us sat in his couch and read books and cuddled together. But I do see what seems like the beginning of a little jealousy on his part.<br />
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Last night, the four of us were sitting on the couch in Miles' room, reading books and getting ready for bed when Zach got a call he had to take. He stepped out of the room for what I thought would be five minutes. No problem, I can handle putting Miles to bed with Ella here. I'm gonna have to do it soon enough so I might as well get used to it! Everything was going well, Miles was tired, Ella was calm, I turned off the light, Miles hugged me and two seconds later Ella starts crying.....loud and uncontrollably. Merde!! "Shh, shhh, here nurse a little bit. No? Don't want to eat? Okay, gas? Let me burp you. No? Crap!! Where's Zach?!" Miles looked at Ella with concern, I reassured him it was all right, she was just feeling uncomfortable but she's okay. "Are you okay Miles? You know I love you. You're such a good big brother, I'm so proud of you, let me give you a hug." He wanted me to hold him and kiss him, I tried my hardest but at the same time I had Ella on my right arm screaming. Miles finally gave up, I think he felt left out, I don't know. But his eyes went kind blank, he was seeing past me and out towards the door, waiting for Papa to come back. But he didn't. The 5 minutes turned into 25 minutes and all three of us in the room started breaking down!<br />
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My heart broke for Miles because I wanted to comfort him but Ella's crying was so loud that it was hard to ignore. I considered taking her outside and leaving her in her basket while I finished putting Miles to bed, but I knew she would only cry harder and it would stress me out and it would still take a while to get Miles to bed. What do I do? Eventually, Ella calmed down enough that I was able to safely lay her on the couch next to me. Miles jumped in my arms. I hugged him, cradled him, kissed him and in that moment Zach walked back in the room and Miles wanted his Dada. It broke my heart. I felt like I had failed him. I couldn't give him what he needed so he didn't want to be with me. I took my cue and left the room with Ella. Now I was the one crying.<br />
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So far, the hardest part of having two kids has been giving Miles the attention he needs from me. Since I had a c-section, I'm not allowed to pick him up for a few weeks. I can't drive him to his therapies or school, I can't take him in and out of the car seat, I can't pick him up out of his crib, I can't lift him into my arms when he comes running towards me. And that kills me!!! I tell him I still love him, I shower him with kisses and I hug him on the floor or when I'm sitting as much as possible. But Zach's been his primary caretaker the last few weeks and it's been really hard for me to sit on the sidelines and watch. <br />
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Zach emerged from Miles' room a few minutes later. Miles was fast asleep. Zach heard me sobbing and held me in his arms. <br />
"I just feel so bad," I said. "I feel sad that I can't comfort him, that I can't hold him. What if he thinks I don't love him anymore?" <br />
"Miles understands. He knows you love him, you're a great mama."<br />
"But what if he doesn't?" and my sobbing gets louder.<br />
"Blue Iguana," Zach says.<br />
Something inside me switched. Do I feel a little smile coming on?<br />
"Blue Iguana", Zach repeats.<br />
"Blue Iguana", I say, now a full blown smile showing on my face. <br />
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Blue Iguana-- that's our code word for "shit is getting out of hand so lets laugh it off". It's our sign to stop and smile, to find the comedy in the drama, the calm in the chaos, the sweet in the struggle. Life is tough and we can choose to live in constant struggle or say, screw this! I'm gonna be happy cause things could be worse!<br />
Miles is not going to remember the few weeks that I couldn't hold him. By the end of this year, he's not even going to remember life before his sister. And neither am I. We're in transition right now, all of us adjusting to this new life. And if we keep our sense of humor, I'm sure we'll come out much stronger on the other side!<br />
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<tr><td class="tr-caption" style="text-align: center;">Miles and Ella meet</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Big Brother Miles!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ella at ten days old.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com2tag:blogger.com,1999:blog-4251946852676608128.post-4397370804264168562012-01-31T06:52:00.000-08:002012-01-31T06:52:08.702-08:00Coming Full circle.I woke up at 4:30 this morning and couldn't go back to sleep. In just 24 hours I will be heading to the hospital to have a baby, via cesarean. I've spent the last 9 1/2 months preparing for this moment, mentally, physically and emotionally. I know I have trauma from Miles' birth. It was the best and worst day of my life so far. It was the birth of my son, the one who has brought me so much love, joy and enlightenment. But the way it all went down was not joyous at all. The operation itself went great, it was the hour after when we were told Miles might have Down syndrome. At that very moment, every ounce of joy I felt got crushed by a sadness so deep that my whole being went into mourning. I was already in an altered state from the anesthesia wearing off and the pain medication kicking in. My body was shaking, my teeth were shattering, but my mind was healthy. And then the news. The news sent my mind reeling. I went deep, deep into a black abyss from which I never knew if I'd come out. As the anesthesia wore off, I felt like my mind was melting away with it. Was I shaking from fear and sorrow or was it really the drugs wearing off?<br />
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I try to find the good memories in my birth experience with Miles, but they are all tainted by those words, "Your son may have Down syndrome". I can't find one clean, clear, fully happy moment. They took that away from me an hour after he was born! I wasn't allowed to savor it and now it's hard to find. So yes, going back into the same hospital, to an OR, to have another cesarean birth is freaking me out. I know this time will be different, my heart knows that, but my mind keeps getting flashbacks to the last time. So I couldn't get back to sleep.<br />
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It's now almost 7am, the sun is up and I can hear Miles in his bedroom. I believe everything will be all right. Baby Girl's birth will be perfect, she will be healthy, strong and beautiful. She will have all her fingers and toes and breath well and will have no extra and no less chromosomes. She'll be just right. And I will be happy and recover well from the operation. I will feel extreme love and joy for both my new baby and big boy Miles and nobody will take that away from me. I will have come full circle.<br />
<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com1tag:blogger.com,1999:blog-4251946852676608128.post-59729176041354837542012-01-19T11:59:00.000-08:002012-01-19T12:02:13.056-08:00A Different Sort of Chaos<div class="separator" style="clear: both; text-align: center;">
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Miles has been acting very unlike himself in the last two weeks. Well, it really all started about a month ago, when he got an ear infection. He didn't want to eat, he was irritable, waking up at night, crying for no reason. We took him to the doctor, got him on antibiotics and he started being more his charming little self. His appetite came back and he stopped waking up at night, but then his stomach got messed up. Probably from the antibiotics. He hasn't wanted to eat much, not even his favorite foods (brown rice, eggs and toast). He's been a picky eater for the last year, but we never had a problem with breakfast....until now. All of a sudden, he doesn't even want breakfast. And he's been whiny and clingy. If Zach and I are around, he wants us to hold him constantly. And then, this morning, for no reason, he started crying and wouldn't stop. Miles is not a crier. Even when he was a little baby, he barely cried and when he did, it never lasted more than a couple of seconds, maybe a few minutes. So this morning was a first, because Miles sat there and cried for at least 15 minutes and he was inconsolable.<br />
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He wanted food, but when we gave it to him, he wouldn't eat it. He wanted to be held, but then he didn't. He wanted to sit down, but then he didn't. He was crying with emotion more than pain. Zach and I tried everything to soothe him and it broke our hearts to see him so frustrated, so out of control, so much in need of our help, but unable to communicate it. I finally grabbed him in my arms and took him outside into the cool morning air, to see the sun and the trees and the birds and the sky. And we talked. I reassured him that I loved him and that he was okay. I told him what we were going to do today and that it was going to be a good day and he stopped crying. He relaxed, he held me tight and eventually we went back inside and got him ready to go, because of course, he has a full day of therapy and daycare and music class.....<br />
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I don't know! Zach and I are at a loss! We're not sure what's going on with him and we are just as frustrated as he is about our inability to communicate. Sign language only gets us so far and we just don't know what else to do. I look at his little crying face and it kills me. He wants something, he needs something, but he might not even know what it is, let alone communicate that to us. It's heart wrenching and exhausting and completely frustrating. I know that "this too shall pass" but I am hurting for my son because I don't know how to help him. Am I doing everything I can to try and understand him? I'm tired and sometimes I lose my patience and then I feel horrible. It's a challenge!<br />
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In my gut, I think he realizes that things are about to change at home. He's feeling our anxious energy and maybe even the baby's energy and he's afraid that he might not get our love and attention once this baby comes. He's definitely aware that things are happening and I think he's got his own anxiety about how he's going to fit into the equation. So he's acting out, he's on food strike, he's being needy, he wants as much as he can get from us now, while he has us all to himself. I know this is going to be a difficult transition for all of us, but I also know that by this time next year, none of it will matter. It will have passed and Miles will love his sister and will be teaching her and learning from her. And we will be living in a different sort of chaos, one that can accommodate all of us equally. For now, we continue to live in anticipation of all the changes that will take place as soon as baby girl joins us. Which is very soon..thank God! Cause the anticipation is killing me! It's killing all of us!<br />
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I keep wondering if I'm giving Miles enough attention. Am I showing him that I love him? Am I there for him when he needs me? I worry that I've been too self-involved to be there for him and that's why he's acting out. I'm doing the best I can...I just hope my best is good enough. <br />
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Here are some pics of Miles and I lounging around, enjoying lazy time together.<br />
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<tr><td class="tr-caption" style="text-align: center;">I love this little man!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-79539662520166966352012-01-06T10:30:00.000-08:002012-01-06T10:30:57.468-08:00One Day at a TimeHappy New Year! 2012, the year of the Dragon. I was born on a Dragon year, 1976. My baby girl will be born on a Dragon year. Two dragons in the house, can we handle it? Can I handle it? I'm just 3 weeks away from my cesarean date and though I'm starting to get a bit nervous, I'm also very excited. I can't wait to meet this little girl and I can't wait for Miles to meet her. I think he's going to love her very much and be an awesome brother. Anytime we take him around other babies, he is infatuated. He can be such a caveman, but around little babies he knows to be sweet and gentle. He touches them softly and smiles at them and says "hi" while waving. It's the sweetest thing. I feel he's got some kind of silent communication going with little babies. I guess I'll find out once our baby girl is born. <br />
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People keep asking me if Miles knows he's having a little sister. I think on an energetic level he is fully aware that something is going on and that it might have something to do with a baby. But it's hard to tell how much he knows. I tell him there's a baby sister in my belly, I have no idea how much of that he understands. I do feel like the energy in the house has been so erratic that he can't help but pick up on it. He's been very clingy with me and has been giving his dad a hard time. He's a handful right now and though it seems to coincide with the baby's near arrival, I think it really has more to do with the fact that Miles is walking now. Every since he started walking, his world expanded dramatically. He's been way more curious and independent and stubborn and less focused. He's being a toddler, constantly exploring and testing the limits. Our limits! So I'm exhausted and worried about how I'll manage with a newborn and toddler that I can't reason with....but I'll manage. I've got help and can get reinforcements if I need them!<br />
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At this point, my main concern is how I'm going to keep Miles' busy therapy/daycare/preschool schedule going while I'm recovering from my c-section. I'm the only one who really knows and understands his full schedule and what each different activity entails. I'm his manager! I'm the one in touch with all his therapists, I coordinate each activity, who picks him up and drops him off, what he needs to take to each class, when he eats, naps, etc etc etc. Am I a control freak? No, I don't think so. I'm the mommy and main caretaker of a kid with special needs and a very busy daily life. Zach helps a lot when he's not working, my mom also picks up a lot of the slack, but I still coordinate everything. And I do feel like I need to control that. I'm finding that I will need to trust the people around me a lot more and be okay if things aren't done properly.....or the way I like them to be. I have to let go, allow others to help... in an organized manner. Yeah, okay, maybe I am too controlling over Miles' life. I know there's a lesson here for me and I'm trying to just go with the flow.....but yeah, it's hard.<br />
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One day at a time. One day at a time..... <br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0tag:blogger.com,1999:blog-4251946852676608128.post-21711688905530849492011-12-28T22:29:00.000-08:002011-12-30T08:19:49.332-08:00Looking Back: 2011<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr2sFwa3bOp3Yj6Xj_7D5LVC7J5iZfMlmeRicFZERMb1Uh3mdxRXubWP6tYmnQRflNYZ2-55FSNql1uXknHMgSU0KBrFUNNZApQhC5VNVn-VWtMtkcskXupoDsEVxVlfwLy1xEPZuonpg/s1600/_MG_1974.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr2sFwa3bOp3Yj6Xj_7D5LVC7J5iZfMlmeRicFZERMb1Uh3mdxRXubWP6tYmnQRflNYZ2-55FSNql1uXknHMgSU0KBrFUNNZApQhC5VNVn-VWtMtkcskXupoDsEVxVlfwLy1xEPZuonpg/s400/_MG_1974.JPG" width="400" /></a></div>
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Once a month we go to a "learning class" for children with Down syndrome at Club 21 in Pasadena. I love going because it gives us an opportunity to be with other parents who are on the same boat as us. It gives Miles a chance to play with other kids with Ds and we learn real useful ways of teaching our children now and in the future. We get notebooks with information, flashcards, sign language cards, we go through a power point presentation and sometimes even role play with each other. There is so much information that it is incredibly overwhelming. Each month as we're driving out to Pasadena at 8:30 in the morning I realize a whole month has passed and I've only practiced with Miles a handful of times. Guilt sets in! I'm a terrible parent, I didn't do my "homework", I didn't make him work hard, I slacked, what's the point of going to these meetings if I'm not teaching Miles at home, etc etc et. I berate myself for a few minutes until I hear the facilitator's voice in my head telling me that "just showing up for the class is enough". It is enough right? I'm doing as much as I possibly can. One day I'll have more time and I'll be able to help my son learn how to count or read or write...right?<br />
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It's hard and I'm not the only who feels that way. Every single parent in that rooms feels like they could and should be doing more for their children. We all feel like failures. We all feel frustrated with the difficult task of teaching our kids how to match objects or count or just keep them from eating the damn flashcards!! We are all overwhelmed by the amount of material being presented to us and we're not sure if we'll ever be the right teachers for our kids. We talk about it, we cry and laugh and share both our struggles and our successes. It's sad that we feel like we're not doing enough for our kids because I look around that room and I realize the facilitator is right, we are doing enough just by showing up. We are absorbing information and we are sharing with each other and we are doing as much as we possibly can to make sure our children get the same opportunities as typical kids. We are arming ourselves with tools that one day will come in handy. We just have to have more patience and celebrate the little milestones as well as the big one because it will take our kids much longer to learn, that's just the reality.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg_mLdyKnyUJeN0bxFhI-GF0aCQe4cSbGSmOVXxNoE7HigXQMq_GReyjXvplIvM7hEqpNPuj4R8e4YkP5OEa-B4iw-0rgDXi-6VH5HxnoIXetdSk-RTM4OcGHcZ272v_xxeAw_aZvYqyg/s1600/_PIC3459.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg_mLdyKnyUJeN0bxFhI-GF0aCQe4cSbGSmOVXxNoE7HigXQMq_GReyjXvplIvM7hEqpNPuj4R8e4YkP5OEa-B4iw-0rgDXi-6VH5HxnoIXetdSk-RTM4OcGHcZ272v_xxeAw_aZvYqyg/s400/_PIC3459.jpg" width="400" /></a>So as 2011 comes to a close, I am looking back at how far Miles has come in the last year and it's huge! He reached two very big milestones this year: walking and talking. He crawled for 10 months before he finally got the desire and the strength to walk, but he did it! And he can also crouch, pick up objects and stand back up. Seems simple to us, but it was a difficult thing for him to master. Miles is also communicating with us through sign language and a few spoken words. In the last couple of weeks he has really started using his signs to tell us when he wants or doesn't want something. This evening before bedtime, we were sitting on the couch in his room reading books when he suddenly looked at me and made the sign for "cracker". I said (in Spanish and signing back to him), "you want a cracker? are you hungry". He made the "cracker" sign again, then got off the couch and walked to the door that leads to the kitchen. I followed him, got him his crackers and we walked back to his room. He promptly climbed on the couch, ate his crackers while I resumed reading "Good Night Gorilla". When he had enough, he made the sign for "milk", so I gave him the milk and said it was time to go to sleep. I turned off the light, he leaned his head on my belly and went to sleep. We communicated. There was no fussing or fighting or crying or kicking or biting. I would have never guessed he was hungry, but I didn't have to because he told me. It was amazing!<br />
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And you know what else amazes me about our communication? That he understands me in Spanish as well! I've had so many parents of adults with Ds tell me that I should stick to one language, that it's going to be too hard for him to understand, they've made me second guess myself and feel shitty, like I'm not doing the best thing for my kid. But you know what? He understands me!!!!! He gets me and that's all that freaking counts! When I tell him, <i>"busca tus zapatos</i>", he knows to go get his shoes. When I say <i>"vamos a lavarte las manos"</i>, he comes to the bathroom to wash his hands. "When I tell him, <i>"quieres un huevo?"</i>, he points to the pan and makes the sign for egg. He might not speak Spanish now, maybe he'll never even speak it, but you know what? He understands it and that's good enough for me! He is bilingual in my book and he's defying what all those naysayers have told me!!<br />
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There are so many other smaller milestones he's reached like being able to use his pincer grasp (index and thumb) to grab small objects. He has much better coordination when using a spoon or fork and can get the food into his mouth 4 out of 5 times. He can point to his ears and his head. He can throw a ball and is starting to kick it too!! When we're dressing him, he knows to pull his arms through the sleeves and he helps us put on his shoes....when he's in the mood. Yes, he has a strong will and he makes many other things very difficult, like changing his diaper or taking him out of the bath or feeding him dinner. He knows how to turn on the TV and is constantly trying to get us to let him watch it. He throws fits whenever he's frustrated and he still kicks or bites us when he's mad, but doesn't that come with the toddler territory? We lose our patience and want more from him: more communication, more understanding. But what we need is more patience. I could dwell on the difficulties of raising him, on how challenging his behavior is right now, but I do that all the time. Instead, I'd like to celebrate his progress and look forward to another year of happiness and discovery!<br />
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<tr><td class="tr-caption" style="text-align: center;">My Little Buddha Zenned Out!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Miles is going to be a big brother in 2012 and I look forward to learning from him through this experience. I'm sure he will continue to teach me about love, compassion and acceptance while he learns to navigate his way in this life. So cheers to you my sweet little man!! May we both have the strength and flexibility to move through the challenges of this coming year.<br />
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See you all in 2012!<br />
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<br />Loreni and Mileshttp://www.blogger.com/profile/00413715004538796129noreply@blogger.com0