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CHANGE CAN BE A GOOD THING
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Mar 19, 2009 03:00am (EST)
As you might already know, each month we host a Live Chat (web cast) on Share. Our topics are carefully selected, as are the guest speakers. With all but one exception (okay, maybe two) all the chats have taken place during the day. Yet we realize not all of you can make a mid-afternoon chat. Some are working, some are banned from internet sites at work, and some are simply too busy........all of which are okay!
In an effort to attract more members to our chat, we've decided to hold an evening chat on Thursday, March 19, 7:30 p.m. Eastern Time. Our topic will ironically be.........
Balancing Work and Home Life, with our very own Denise Rock (weerock). Please join us and bring your questions!! When Denise isn't working a 40-hour/4 day week, she's volunteering with the March of Dimes & Share, baking up some yummy food, working out, cleaning or texting her friends. How does she do it all??? Join us and find out!
Like I said, change can be a good thing...but we need your help. Please let us know if a night chat would normally work for you, even if you aren't able to attend this one. Is 7:30 p.m. Eastern Time late enough for you, or would 8:30 work better? We want to make sure everyone who is interested in the chats has the opportunity to attend them.........your feedback is important.
Shonda
kids 006
ShareUnion Houston 023
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Posted by 2 here 2 in Heaven | Comments: (5) | Permalink
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RED LIGHT, GREEN LIGHT
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Feb 23, 2009 06:36pm (EST)
 When Mickey was 4 years old and in preschool, he was having difficulties with paying attention, focusing on the teacher, participating in circle time, keeping his hands to himself, etc. This was quite problematic for me as a parent but more devastating as a teacher that her child lacked self-control and didn’t mold to the ideal of the normal student.
Billy and I conferenced with this teacher to discuss different plans to modify his behaviors. I brought to the table different behavior plans that I have used in my own classroom to share. We agreed on one and implemented that right away. In the meantime, I suggested taking Mickey to our pediatrician for assessment of ADHD. I work with ADD/ADHD students every day and know the characteristics. I know what it looks like. I know what it’s not. However, I couldn’t decipher these in my own son so I needed another fresh pair of eyes. I also knew that I needed to get to the root of his behavior and rule anything out. But what were truly ADHD tendencies and what were just 4 year old behaviors in him?
While waiting on his results from our pediatrician, we noticed that Mickey’s behavior was more appropriate and less distracting to others while on this new behavior plan. I started to analyze when and where he came out of the “mold”. I came to the conclusion that it was mostly during activities that were not as structured and not teacher directed…storing this information for future classrooms and teachers…but at the same time, thinking this to be normal behaviors for 4 year olds, right?
Then the call came with the results. Mickey did not completely fit the mold of the ADHD child. However, there were areas that were elevated and needed monitoring.
Here we are a year later…and here we are asking some of the same questions. The difference is that his teacher this year doesn’t see typical ADHD characteristics in Mickey yet he continues to struggle with following directions, keeping his hands off of objects, and having some self-control. He definitely has good days and bad days. However, Mickey loves school. He’s not frustrated with class work at all. Actually, he’s reading above where he should be. His handwriting is beautiful. He’s incredible with math computations. He’s excelling and his behavior is not hindering his educational needs. Mickey’s a sweet, kind-hearted, loving, fun child, but at the same time, I’m not delusional about his behavior at all. But, is it that he really can’t do it or is it a choice not to? However, I am beyond frustrated about it, and I’m not beyond taking him back to the pediatrician for further testing though.
In the meantime, I’ve been going through some of my resources in my classroom and reading up on ADHD and students with these diagnoses. Something that stood out to me that I wanted to share…
Melanie Johnston, our school behavioral specialist gave the best definition of ADHD in a workshop I attended…
It’s a great day when you can driving down the main strip in your city and hit every green light. You can get from point A to point B without any problems and life is good. But on any other given day, you can hit every red light, get frustrated, get mad, cuss and yell, and be late to where you’re going. For a normal person, green light days with some occasional red light days are expected. However, for the ADHD person, red light days are everyday. Something is always getting in the way of point A to point B.
ADHD children aren’t aware that they were just hit by a red light, of what they are doing, where their minds went and how to get back sometimes. How do we help them get back?
Melanie stated that “failure to communicate is the responsibility of both speaker and listener.” She repeatedly said, “This is not about you. Don’t take it personally.” She did list communications that children might have that we needed to attend to, and these have helped me to be a better parent and teacher.
• Please be patient with me. I’m interested in what you have to say.
• Please help me pay attention to what you say. It’s hard for me to keep my attention.
• Please make sure I’m listening. I don’t always know when I’m not.
• Don’t get angry with me. It’s already hard for me to attend and understand. The extra pressure will only distract me.
• Sometimes long complex sentences confuse me. Please keep them short.
• Easier vocabulary usually helps me understand.
• It’s OK to repeat what you said. I won’t be insulted. It helps me understand.
• Don’t get irritated when I ask you to repeat. It only means I want to understand you.
• The slower you speak the more I am able to listen and understand you.
• Please allow me time to think about your information. I really need that extra time.
• If I appear distracted, please help me refocus. I didn’t fade away on purpose.
I’m not sure that I have come full circle with this blog. Do I fully understand ADHD and the child with ADHD? Not at all, but I’m learning more and more each day as I grasp around the notion that my child or children may acquire this diagnosis one day. It’s alarming to me that “premature babies are 70% more likely to become children with ADHD if they are born at 34-36 weeks. The likelihood of having ADHD triples if the baby was born before 34 weeks.” (http://www.medicalnewstoday.com/articles/44574.php) But that’s another blog for another day.
Jac
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Posted by LilyGrace'sMom | Comments: (9) | Permalink
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GETTING TO KNOW YOU - SHARE VERSION!!!
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Feb 11, 2009 08:04pm (EST)
Periodically, we are going to do a version of “Getting To Know You” with random Share Members. Who better to start with than Shonda, author of 2 Miracles Here, 2 Angels Upstairs ?
I posed the questions to Shonda - and here are her replies. Don't everyone rush your local beauty store for Pantene. 
1. How did you arrive at your children's names?
We wanted something original, something no other child would have. We decided to go with place names for their first names. Kai is named after a beach on Grand Cayman Island we where we've vacationed. It also means calm ocean, and he was the calmest baby in the womb so it seemed fitting. Boston is after the city where my parents met and became engaged, we chose it for Baby B. London is a city Mike has been to a few times, and honestly I just liked the name. The boys middle names are after athletes, this was Mike's idea.....but we also liked the names. Kai Alexander (Alexander Rodriguez, New York Yankees), Boston Derek (Derek Jeter, New York Yankees), London Jordan (Michael Jordan).
When we realized later we were having a girl during our second pregnancy, we decided to continue the place names. We chose Camden which is a borough or suburb of London. Her middle name, Kauai, is a Hawaiian island. Despite our best efforts of unique names, London has a buddy named London.....and Camden has another Camden in her class. Oh well.
2. What is the history of your name?
My parents were going to name me Amy, until three weeks before my due date when a neighbor named their daughter Amy. My mom went into work crying the next day and an Indian doctor she worked with gave her a book of beautiful Indian names. My parents choose Chanda, which means little Goddess and was similar to the doctor's name...Chandramouli. After a few months, when no one pronouced my name right they changed the spelling to Shonda. The ironic part is that 29 years later it was the same Dr. Chandramouli who performed a PDA ligation on London in the NICU!
3. When did you begin volunteering for the March of Dimes?
Two years after our premturity journey began, we formed a small team for March for Babies. I found Share after attending a committee meeting for M4B and have been on ever since. This spring will mark our fifth year walking to save babies, our team has grown from 4 to 50 people.
4. How do you get your hair so shiny?
My sister was genetically blessed with super shiny hair, but I have to work at mine a bit. Here is the secret. After getting out of the shower, I use two squirts of Pantene Smooth Serum, two squirts of Garnier Fructis Brilliantie Shine Glistening Drops, rub them in the palms of my hands then run them through my hair. Blow dry and style, instant shine!
Thanks, Shonda - for letting us get to know you a little better! You ROCK!!!
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Posted by weerock | Comments: (7) | Permalink
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CHILDREN'S HEATH INSURANCE PROGRAM (CHIP) SIGNED INTO LAW
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Feb 05, 2009 07:37pm (EST)
We are pleased to announce that the reauthorization of the Children's Health Insurance Program (CHIP) was signed into law on Wednesday. This critical legislation includes key provisions the March of Dimes has championed since 2007:
* Maintains coverage for those children currently enrolled and give states the resources to cover an additional 4.1 million uninsured children which means 11 million children will have access to coverage. * Gives states a new option to cover pregnant women who meet the program’s income guidelines. * Contains a robust pediatric quality initiative to fund the development and dissemination of pediatric quality measures for use by the states. This will help ensure that children receive not only health coverage, but high quality care. As one of the leading organizations fighting for health care coverage for our children and pregnant women,March of Dimes President Dr. Jennifer Howse and others attended the bill signing at the White House.
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Posted by James SooHoo | Comments: (6) | Permalink
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PERSPECTIVE
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Jan 29, 2009 01:21pm (EST)
 In December, our family of five crammed ourselves and our luggage into the car, and left for home. We visited family in Texas and Louisiana. Honestly, I was feeling homesick as six months had passed since our last visit.
Learning experiences always make themselves available to parents, especially when you would prefer they do not. This trip taught me many things about life, parenting, children, and most importantly – perspective.
Small dogs fear my small children. Little Josie, my sister’s Chihuahua , darted back and forth from beneath the sofa to lap up cookie crumbs. Each time my dear children were convinced it was them she liked, and not their cookies.
Perspective: Josie used to be heavier and longer than my NICU babies. Now, the scales give my children the advantage.
Small objects should be put in high places. My parents are still missing a remote control. Benjamin was marked as suspicious. As a result we had to manually operate the television.
Perspective: Benjamin likes shiny things and the remote was silver. He also loves pushing buttons and making things work. If indeed he did take the remote, then I am thrilled to report his severe vision impairment did not keep him from his goal.
Small children should fear my children when the Middleton Kidlets are together on an issue. Their same age cousin is bigger than they. However, he picked on them once too often. I walked in and all three of my children had his hands, feet, and body held down.
Perspective: My children argue much amongst each other. However, they will defend each other without fail when someone becomes a threat to one.
Five and a half years ago, it was hard to imagine my children chasing dogs, eating cookies, reaching for objects, hiding things, playing with children, and being a group of three.
Perspective: We do not know what the future will bring. All we know is that the present is where the action really is … So seize it with gusto.
Melissa
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Posted by Melissa M. | Comments: (4) | Permalink
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VOLUNTEERING
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Jan 19, 2009 07:34pm (EST)
 My daughter Domonique was 21months old when I found Share in March 2006. I was so excited to finally connect with others who understood the range of emotions associated with high risk pregnancy, premature birth and the NICU experience. I was filled with guilt. I was constantly second guessing my decisions. “What if “this and “What if” that. I met some wonderful parents who reached out to me and helped me think clearly. They counseled me to not think about the “what ifs?” and instead to focus on how far my daughter has come. With the encouragement and support of these wonderful women I was able to move past the guilt and focus on enjoying motherhood. Total strangers who volunteered their time and shared their experiences helped me and for that I am forever grateful. These women were also my inspiration for wanting to become a volunteer. Within months I started volunteering for the March of Dimes and also on Share and I have been addicted ever since!
Volunteering is such a rewarding experience. It gives me a good feeling inside to know I was able to ‘give back’ to this community that has helped me. Over the past few years I have helped this community grow by volunteering on various committees. I have had the privilege of meeting and welcoming new members and helping them navigate their way around the site. I have prayed with new parents who were faced with uncertainty and struggling in the NICU. I helped organize live Chats and have ‘chatted’ with many members in our ‘virtual’ café. I helped launch the Shining Stars folder and worked with James and the Share Leadership committee on numerous projects to help better this community. I had the privilege of working side by side with some of the most amazing volunteers I've ever met. These days I continue to volunteer on Share but more on ‘behind the scenes’ projects.
Recently I began to wonder about a different type of “What if?” What if …I hadn’t wanted to get involved? What if… nobody cared enough to volunteer? Where would this community be if volunteers didn’t help raise awareness by sharing their stories? I can’t even begin to imagine where the March of Dimes would be without the support of its millions of volunteers. Volunteers are the driving force behind this mission. Volunteers are the lifeline that runs through this community and I just can’t imagine where Share would be without them.
Share is almost entirely volunteer maintained and operated and now that Share has grown to more than 28,000 members, more volunteers are needed. Have you given any thought to how you can make a difference in the fight to help save babies? How you can make a difference in other’s lives? Have you considered becoming a volunteer on Share? Many members volunteer their time organizing live chats, creating fun activities, working behind the scenes on graphics and technical issues and of course, reaching out to other members. There are many available opportunities that require minimal time commitment. If you are interested, I’m sure our great Community Host, James SooHoo, would love to have you as a volunteer.
Volunteering for the March of Dimes has given me a renewed sense of purpose. I’m sure it will do the same for you. Think about the possibilities. Think to yourself “What if… there were more volunteers?” Now that’s a “What if” that puts a smile on my face!
Karen 
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Posted by DNASMOM | Comments: (5) | Permalink
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ANGEL AVENUE
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Jan 13, 2009 12:53am (EST)
 With March for Babies just around the corner, I thought that I would write about something near and dear to my heart. It is a project that our March for Babies walk site initiated two years ago and I have been the volunteer to organize it since its conception in our area. The project has many names; Angel Avenue, Heaven Highway, and Memorial Lane just to name a few. In Louisville, we call it Angel Avenue. It is designed to give a visual of how many babies (per month) pass before their first birthday.
I think of it as Ambassador Alley for angels. It is a way to include the families who don’t have pictures of their little ones or don’t feel like they can share their only pictures of their angels.
In the two years I have been doing Angel Avenue, it’s had two different looks. The first year, we made stickers with first names and placed them on the back of t-shirts that said “HELP”. The second year, it evolved into something more creative. We used the t-shirts that said “HELP”, painted names on the front, and attached angel wings on the back. Each t-shirt stood alone on a stand that I devised out of wooden rods. What will this year’s look like? I don’t know, but my creative wheels are turning. I would say stay tuned to see.
Why is this project so near and dear to my heart? I am a mother who has lost. I know what it feels like trying to get through difficult times. I felt lost and I felt like I didn’t belong anywhere. One late night, I logged on to Share. Immediately I felt accepted. I found out that I wasn’t the only person in the world that went through a loss. I received the support to stand on my own two feet again. I am forever grateful to those ladies. I am a firm believer in “Paying it Forward”, I want to give back what was given to me. But yet, I don’t feel like I am giving anything to these families. They are the ones that give me the privilege to memorialize their child.
I feel very honored every year that I get to organize and create Angel Avenue. As I create every t-shirt, I think of the family that is going through the grieving process. As I write the name on the t-shirt, I close my eyes and say a little prayer for that child. As I place each one in their spot, I hope that the family gets as much peace as I did creating Angel Avenue.
If you don’t have Angel Avenue in your area, I challenge you to start one at this year’s March for Babies.
Angi
"Phoenix's mom"
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Posted by PHOENIX'S MOM | Comments: (9) | Permalink
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THANK YOU SHARE!
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Jan 06, 2009 05:53pm (EST)
I went to a small high school and although I had friends, I was by no means popular. I was just a “bit”…okay, probably “a lot” too nerdy. I liked to read and do volunteer work and I got good grades and I didn’t date much. I didn’t have sisters to hang out with just very popular older brothers.
I went on to big ole Indiana University (Go Hoosiers! Get it, Whosures?) and again, I had plenty of friends but by no means was I the bell of the ball.
So when I got pregnant, I was excited that I was going to have something in common with all those perfectly popular princesses with their perfect pregnancies. Instead, I found myself in OBICU with a baby in the NICU. I worried about what people thought of me and if they wondered what I had done to make this happen. I worried about the future, I worried about the present. I saw pregnant women and hated them with the fire of a thousand suns. I had friends who were also pregnant who just couldn’t handle talking to me because “what if it was catching”? Once again, I felt like I had missed the boat on fitting in. I didn’t have baby showers where I was “baby fat” and sassy. Instead, I was just post baby chubby and grouchy and my baby was still in the hospital.
Once Riley came home, there were no play dates. There were therapists and RSV injections and doctor’s appointments. My little world got even smaller. I skipped Christmas Eve with my mom’s family for the first time in my life because it just wasn’t safe enough for my liking. (I think Rick was secretly relieved to not have to spend time with my ginormous family but don’t tell my mom that.) I loved going back to the hospital for appointments because at least we sort of fit in there. No one looked at our monitor or oxygen or g-tube. I chatted with the other NICU moms on the phone or email.
Then miracle of miracles, Riley took her first steps about a week before her first birthday. My little preemie world started to crumble. She got kicked out of early intervention and doctors joked at us with “are you sure she was a 25 weeker?”. Uh yeah, we have the million dollar bill to prove it. My new NICU friends suddenly didn’t have so much in common with us anymore and I started to suffer from a little bit of survivor’s guilt. I feel horrible even admitting that. I felt like I didn’t fit in with parents of full-termers and suddenly, I didn’t fit in with POPs.
Then one day, I was watching television and saw an ad for the March of Dimes. From there, I found Share and a role on the communications committee of our local/state MOD. I started volunteering at our NICU. Instead of asking God, “Why Me?”, it was more of an “AHA!” moment. On Share, I found so many people who got me…people who understand all the emotions that go along with being a parent of a preemie. All of sudden, I was talking to people who understood that even though Riley looked “all better”, she wasn’t and emotionally, I sure wasn’t either. I found people who were further along in their journeys who were able to light a path for me and hopefully, I’ve been able to do the same for others.
Each of our children is different and we all have different paths to take through our journeys. Whether we are parents of preemies or a child with a birth defect, whether our babies were born at 18, 24, 32 or 40 weeks, we’re all parents walking on an alternative path. Share gives us the opportunity to have someone hold our hands so that we’re not walking alone. We all fit in on Share, we’re all pieces of one big puzzle. Thank you all for finally giving me a place that I could really fit in. I can’t wait to see who and what the new year brings.
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Posted by weerock | Comments: (9) | Permalink
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SHARE YOUR STORY - 2008
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Dec 30, 2008 06:46pm (EST)
 As 2008 comes to an end, I'd like to take a moment to reflect on all that Share has accomplished throughout the year.
Our numbers grew to almost 28,000 members!!! On-site volunteers grew to 40...Share is volunteer managed and maintained 24/7. Share members raised almost $3.5 million this year for March for Babies! The Preemie Petition was launched, and Share members were present for the press conference announcing the petition and report card. ShareUnion 2008 was a success! We *ROCKED* Houston – with nearly 60 members attending from 18 different states! Live chats were held monthly, with new guest speakers, and increased attendance each month. A Share member was highlighted as a shining star each month to honor those who give back! Each recipient of the shining star award receives an hour power watch.
Share is an amazing community – and as you can see, much has been accomplished in 2008. The thing that makes me most proud, though, is that at Share…every story is heard! No question goes unanswered. The group of nearly 40 dedicated Share Your Story volunteers has made this online community something to be proud of. Each and every member who reaches out, shares his story, or responds to another parent has helped Share grow into our thriving community! YOU, by making your voice heard, have shared the story about a baby you love and touched others.
2009 promises to be an even better year. With new volunteers and new perspectives…Share will continue to grow and thrive. Thank you to all of you – for making Share what it is today.
Happy New Year!!!
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Posted by weerock | Comments: (8) | Permalink
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