ReJenerationS

2011 Holiday Card

2011-12-13T11:29:00.008-05:00

I dropped 2 tons of cards in the mail this morning so it's time to post our 2011 Christmas card. We received 50 free cards from Shutterfly for the 2nd year in a row plus we were able to give 25 free cards each to 3 lucky blog readers. Thank you Shutterfly! This is the best promotion of the year and the cards always turn out so beautifully. Holiday cards are a favorite tradition of mine and I enjoy getting the mail every day. Keep them coming! If you need our new address, just let me know.

5x7 Folded Card

View the entire collection of cards.

Merry Christmas and Season's Greetings!

All I Want for Christmas

2011-11-30T20:28:00.004-05:00

is my 2 front teeth so I can

wish you Merry Christmas!

Both teeth fell out within 10 days of each other! Now that it's stuck in your head, why not take a listen to my Christmas songs on the sidebar of the blog? Play song #2 in honor of Alexander and his beautiful smile. Happy listening!

HERSHEY®'S and Betty Crocker® Cookie Exchange Party

2011-11-28T15:44:00.006-05:00

How about that? I entered a contest to host a cookie exchange party with HERSHEY®'S and Betty Crocker®. This is handy as we've planned to have a cookie exchange and ugly holiday sweater contest regardless. I just found out today that I won!

They are sending the following supplies to make the party even more fun:

HERSHEY®'S and Betty Crocker baking staples to help create Chocolate Snowball and Peanut Butter Blossom cookies for my cookie exchange
Recipe cards for guests to create their very own holiday cookie recipe book (for 15 guests)
Custom bakery boxes for my guests to take home their favorite cookies from the exchange (for 15 guests)
A HERSHEY®'S and Betty Crocker apron as a thank you for hosting

I found the ugliest holiday sweater in the world and other accessories at a local thrift store. There will be a prize for the ugliest sweater. If you're local and don't yet have the evite, let me know!

Now to find the perfect ugly sweater prize.....I'm thinking a scary elf or something goofy. Ideas?

UnChristmas Card

2011-11-27T13:33:00.009-05:00

We were exhausted from getting the kids dressed and that was before heading to the photo shoot. Our real camera decided it wasn't going to recognize its fully charged battery, so we had to use the iPod camera. The kids were wild monkeys, as per usual. What you will see in the embedded video below are a small sampling of the shots that won't be making the cut for our holiday card this year.

As Mark and I did our best to position the kids and get them to smile in the same direction, strangers passing by began joining us. They offered encouragement and tried their best to get the kids to cooperate. In the end I got a couple of shots that I love. That's what is important. Not the hundred or so of the nose picking, shoe losing, tights ruining, running, crying, jumping, escaping, dress over her head lifting, funny face making shots that we snapped. (sigh) This is why egg nog was invented. Yum. Enjoy!

embedded video below. If it doesn't appear, refresh your screen or click HERE

Light a Candle for Sweet Maddy, Nov. 6th, 1pm

2011-11-04T16:40:00.029-04:00

photo from our DS playgroup at my house, March 2008, Sophie, Maddy, & Braska pictured

A week has gone by in a flash since my friend Colleen lost her 4 year old Madison to a tragic accident at home. The entire Down syndrome community and beyond has been awash in grief. As I hold my kids even tighter I find the tears starting up again without warning. I cannot even begin to imagine how my friend and the family are coping or how you come back from this.

Maddy's accident has struck a nerve deep inside of me, in a primitive place where a mother's protective instincts have been imprinted in our DNA. As parents, we do the best we can to teach our children about safety. For those of us with children with special needs, the fear of our child being in an accident is heightened. Many of our kids, like Sophie, have little sense of danger but also do not understand the consequences of their actions. This is a very dangerous combination.

We call Sophie Houdini, and it is not a term of endearment. Sophie can and will escape our house or her school at any given opportunity. Why? The Lord knows. The point is that when our many baby gates, locks, her Personal Care Assistant at school, or our other security methods fail, she is gone. When this happens at home, she heads to one of two places; the street/sidewalk, or the back yard.

Sophie is currently sporting a blackened fingernail as she tried to slip out the door behind me as it was shutting and it got caught. On Monday, as I was getting her out of the van, even as I had her in my grasp, she wriggled out, headed up the street and straight for an oncoming car. This isn't the first of these events, and I know it will not be her last.

Last Friday my friend Colleen left her 4 year old Maddy at home with her 14 year old brother while she drove the younger boy to school. Maddy got out of the house. No one knew until it was too late. Maddy was struck in her driveway and mercifully passed away immediately. This is not Colleen's fault, it is not the brother's fault. It doesn't matter that they were in a large vehicle versus a small car. It was an accident and every parent's worst nightmare. It could happen to anyone.

Although I desperately want to be there to hold my friend up on Sunday for her daughter's services, I cannot travel back to Champaign, IL at this time. So I will join with the rest of the community who are mourning Maddy's passing by honoring her mother's wishes. Please read and share what Collen has requested:

"God wanted her home- while we can't understand and may never understand why-He called her home to Him. She is safe and will always be with us- in our memories, in our hearts, in the breeze, the child's laugh that resonates throughout the place we are at- her spirit remains with those who loved her."

For those wanting to celebrate Maddy's life:

Celebration of Life Service
St. Matthew's Church
1304 Lincolnshire
Champaign, IL

Sunday November 6th at 1pm

Balloon launch to take place after service

A meal will be prepared for family and friends following the balloon launch.

PLEASE: Mom does NOT want any flowers/plants- if you would like to make a memorial donation to help with the Celebration costs, you can do so online at:
www.bezichflowerdonation.kintera.org

If you would like to leave a comment about Maddy (memory of her) or words of encouragement for the family, please do so- we will print all comments and put in the memory box for the family.

For those that can't attend: If you want, light a candle for Maddy on Sunday at 1pm and post pic to mom's facebook page or email it to me at ReJenerationS@gmail.com, I will forward it on.

You may also grab the digital blog button below made by our friend Randa Kay (RK) on her daughter's website Braska Bear:

Some of you know the Christian artist Steven Champan Curtis. He wrote the following song for his two young adopted daughters and tells the story behind it below. Their family suffered a similar loss when his teen son accidentally struck his daughter with their car and the song took on a much deeper meaning. His later album "Beauty Will Rise" is about how they were able to come back from this terrible loss. Colleen this is for you. I love you Hon.

Shutterfly Card Giveaway

2011-10-26T13:21:00.009-04:00

GIVEAWAY IS NOW CLOSED!

Last year Shutterfly ran a promotion for 50 free holiday cards for bloggers. See a copy of our card HERE. We were thrilled with the quality of their customizable cards and the speed in which they were delivered. The hardest part about using Shutterfly is that they have so many beautiful designs to choose from. I was contacted recently by Shutterfly as they are running the promotion again. This time they offered me 50 free cards AND gave me codes for 25 free cards to give away to 3 lucky readers!

I can hardly wait another month to haul 10+ boxes out of the basement to decorate for the holidays (no exaggeration). I find comfort in traditions and do my best to make these special times magical for my family. Cards are another way to honor the holidays and mark the passing of time. Many of our friends and family live 1000+ miles away and cards are a chance for our family to reconnect with theirs. I prefer to send personalized photo cards and Shutterfly has an amazing selection to choose from.

I've posted a few of my favorites above. It will be tough to choose which one to use. If you would like a chance to win 25 free cards from Shutterfly, please visit their Christmas collection HERE, the holiday cards HERE, and photo Christmas cards HERE. Come back to this blog and leave a comment telling me which one you would use. Then tell me what your favorite tradition is and why. It doesn't have to be a winter holiday tradition. Be sure that I know how to get a hold of you. Winners will be chosen on November 9th. Remember, I have 3 sets of cards to give away so your chances are good. Thank you Shutterfly!

Down Syndrome Awareness Month

2011-10-24T10:44:00.015-04:00

Team Sophie! Thank you Maureen, Ras, Samuel, (and baby to be) for joining us for our 2nd Buddy Walk at VU.

October is Down Syndrome Awareness Month. For the past few years this blog has participated in the 31 for 21 challenge. 31 for 21 is when bloggers commit to post every day in an effort to raise the awareness of Down syndrome, otherwise know as Trisomy 21. Although our lives are too busy this year to participate, you can find a list of bloggers who have taken the challenge HERE. You can also do a search on this blog for 31 for 21 and find around 100 posts from previous years.

Once again Team Sophie rallied for our local Buddy Walk. Here is Alexander with the Star Wars character Boba Fett (he's going as Boba Fett for Halloween this year). Seeing his favorite characters in person proved a bit scary, so all of the pictures are of Alexander with the Star Wars guys in the background, a safe distance away.

Grandma Paula flew in to spend the week with us and walk with Team Sophie. We are so blessed! While we celebrated near Philly, family members who could not make it once again rallied and attended the Buddy Walk in my hometown. Pictures forthcoming (hint, hint Liz!) We are touched beyond words to see such an outpouring of love and support from our family and friends.

We are grateful for our wonderful friends. I met Melissa in the C2P2-EI course that I took through Temple University - Institute on Disabilities. She brought her sweet family and signed each of them up to different teams as so many of our friends had teams participating this year. Melissa and her husband were on Team Sophie. Thank you so much!!!

This is my friend Kim representing her son Nolan & Sue representing her son Sylas. Mara, Nancy, and Cecilia were busy bees as they worked the auction tent and shot photos. If any of my C2P2-EI friends have a picture of us together, please send it to me.

I got up close in personal with these guys for Alexander. Note to self: Stuffing the sweatshirt front pocket with cameras, kleenex, etc. WILL make you look 7 months pregnant. D'oh!

Team Sophie and Alexander as close as he could muster.

The Buddy Walk at Villanova Stadium is a big event. We have bounce houses, live music, cheerleaders and football players cheering on the teams, face painting, food, exhibitors, a silent auction and raffle, games, Star Wars characters, Berenstain Bears, Elmo, a Tot Lot play area, and more. It truly is a great family fun event.

We even had a chainsaw ice sculpting artist make this right in front of our eyes.

Here's Sue and Sylas. Sy is currently hospitalized with Croup (mama has it too). Please send up a prayer for healing.

Buddy Walks are always a highly emotional time. There are great joys to be sure and each year there are fewer tears. Yet old wounds that never fully heal can easily be broken open. Memories of past events collide in my head with thoughts about our family's future, about Sophie's future. I wonder about her siblings and when the day will come when one of them asks why we have a Team just for Soph. We don't hide the fact that their sister has DS, but our discussions are purposefully age appropriate. To them, she's just "Sister."

We had a prenatal dignosis of our daughter's DS. We were scared and hadn't a clue as to how incredibly lucky we were. We needed the gift of time to see with new eyes. Having a child with DS has its challenges (as all children do), but the overwhelming joy far exceeds the hard times. Sophie is a gift and our family is blessed. Life is good. Go Team Sophie!

Prohibition Documentary Review

2011-10-12T10:26:00.001-04:00

Mark is a featured blogger today where he reviews Ken Burns' newest documentary on Prohibition. Check it out HERE.

American Horror Show Pilot Review

2011-10-07T20:13:00.015-04:00

Down syndrome, the macabre, a new tv series, a stellar cast, you have my attention.

When I learned of a new tv series on FX that would not only be scary, but feature a character with Down syndrome, I was thrilled. All too often actors with disabilities are cast in one-dimensional roles where their disabilities define their character. In the previews we are given the hope that in the case of American Horror Show, the character with DS would have a quirky personality that would contribute to the spooky theme. I could get behind that.

According to the official website on FX, "American Horror Story revolves around the Harmons, a family of three who moved from Boston to Los Angeles as a means to reconcile past anguish. The all-star cast features Dylan McDermott as “Ben Harmon,” a psychiatrist; Connie Britton as “Vivien Harmon,” Ben’s wife; Taissa Farmiga as “Violet,” the Harmon’s teenage daughter; Jessica Lange in her first-ever regular series TV role as “Constance,” the Harmon’s neighbor; Evan Peters plays “Tate Langdon,” one of Ben’s patients; and Denis O’Hare as “Larry Harvey.” Guest stars for the series include Frances Conroy as the Harmon’s housekeeper; Alexandra Breckenridge as the Harmon’s housekeeper; and Jamie Brewer as Constance’s daughter."

If you feel like you've seen this show before, it's because you have. American Horror Show goes beyond paying homage to fright films that we are familiar with. The writers lifted bits of plot points from classic horror films and threw them all together like stone soup without even an attempt to show us something original. If you are interested in a full review of the story line, camera work, or strength of the acting, do a google search and you will find a plethora of reviews. Yet while I am interested in these aspects, it is the character Adelaide who happens to have DS that has my attention.

There are spoilers so, X out now if you must. Clips are for mature audiences only.

The following clip is the opening scene to the series. Despite the thumbnail image, Dylan McDermott is not nude, though if you want to see that, he obliges many times in the pilot episode. Please watch as we are introduced to Adelaide for the first time.

Opening Scene

The next embedded scene takes place at present day with the Harmons newly moved in and Vivien stripping wallpaper. Please view but be forewarned that this scene contains horrific dialogue.

Present Day

Finally, this clip is after Addy (Adelaide) breaks in the house again and Vivien deals with her.

Last Clip

In the first minute of the show we watch as the doomed preteen twins call Adelaide a freak and then make a sexual overture to her. Clearly in the case of her mother Constance, the writers were going for shock value delivered by a truly hateful villain. She refers to her own daughter in ways that are so evil that I felt verbally pistol whipped while listening to the dialogue. She insults "brown" people and people who are homosexual as if it's normal conversation.

So, I'm in a quandary. I will watch the series, in part because I need to see how it ends. I need to see if my theory plays out that Constance and Addy aren't actually living humans but are a part of the haunted house. Yet, I am horrified by the treatment of Adelaide and I was utterly unprepared for what I saw.

In the case of the movie Tropic Thunder which garnered such backlash for its mocking of a person with disabilities and repeated use of the word retard, writer and actor Ben Stiller defended the plot as satire, which fell short of an acceptable excuse. So, how can American Horror Show be defended simply because they needed to develop a character as heinous as Constance? Even if she "gets hers" in the end. How is it that I'm the only person besides my friend Nadina that is taking about this?

Football

2011-09-18T11:42:00.006-04:00

1st home game!

Our family and our BFFs Maureen, Ras, and my honorary nephew Samuel bought season tickets together. We have some pretty darn good seats.

Our friends had weekend guests, so just the guys came along this time.

Thanks to the Christmas in July sale at the bookstore, our family has a ridiculous amount of school apparel. There's nothing like putting on a pair of brand new fuzzy sweat pants and sweat shirt on a chilly fall afternoon.

The store didn't have a cheerleader's uniform in Helena's size, so we improvised. At one end of the field they have a kid's area with bounce houses, a bouncy obstacle course, a coloring booth, and other fun activities.

These kid friendly activities and 3 bags of popcorn kept our crew happy for the entire game. (mostly). I didn't know if we would make it through the whole game and since our team got beat up pretty bad, I'd say that was the highlight of the day.

Mark's bike lock worked well in securing the chariot to the fence. This is a very safe neighborhood, but you have to protect your stuff. This way the girls could ride in style for our 4 block walk home.

We're ready for some football! Are you?

Team Sophie

2011-09-14T19:51:00.006-04:00

Please join Team Sophie on Sunday, October 2, 2011, at Villanova University Stadium for The Children’s Hospital of Philadelphia 10th Annual Buddy Walk® and Family Fun Day.

In addition to the Walk®, the day will be filled with great activities for the whole family. We would really like to see as many of our friends as possible walk with Team Sophie!

http://giving.chop.edu/goto/TeamSophieCaptain

In just nine years, this Buddy Walk® has raised over $1.9 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful. There are many ways to get involved, even if you can't join us on the walk. For more information including the schedule of events, registration information, and donation instructions, visit our page at:

http://giving.chop.edu/goto/TeamSophieCaptain

On behalf of our family and Team Sophie, we thank you for your support!

Other ways to support Team Sophie even if you cannot walk with us include:

Buy your Team Sophie merchandise HERE

Take the R-Word pledge HERE

Make a donation HERE

Siblings

2011-09-13T22:18:00.006-04:00

A few years ago when we were still living in the mid-west, a group of families gathered together in a hotel for a weekend of family fun. We were families joined together by the love of our children with Down syndrome who had met on-line and who had become a sort of extended family. At this gathering I met Regan, daughter to Adrienne and sister to Russell. I was struck by her beauty as I watched her lovingly snap photographs of all of our beautiful children. She is a very special young woman and when I look at her, I see Alexander and Helena's future.

Through Regan and other siblings I'm blessed to know, I have come to understand that my kids are lucky to grow up with a sister with an intellectual disability. Lucky? Yes, lucky. For Helena and Alexander, there has been no time without Sophie, without therapies, without Buddy Walks, Special Olympics, doctor appointments, patience, acceptance, and the campaign to educate about the R-word. They know first hand what it means to love someone with differences, though at present they may be too young to comprehend or put this into words.

Thank you Regan. Thank you for sharing your love of your brother in such a beautiful way. You've just uplifted and given hope to more families than you'll ever know.

Please enjoy this video:

Welcome to the 1st Grade

2011-09-10T12:37:00.007-04:00

In the state of Pennsylvania, kindergarten is not mandated. Most school districts offer a half day program. This year Alexander is in the 1st grade which brings with it many changes. Our street is still a mess from the new water main and gas pipes that were installed this summer, but it will be repaved.

My little guy is in school ALL day. No more sleeping in has been a BIG adjustment in his little world. He eats lunch in the cafeteria. He has TWO recesses (his favorite part of school). The students all have their own desks instead of tables like they have in kindergarten.

It was a foggy and soggy first day. We have friends whose kid's schools have been closed due to the severe flooding and power outages that are widespread out here. Trees that are heavy with water have been falling over as the saturated ground can no longer support them. Our basement has been flooded. This is the wettest it has ever been in recorded history and let me tell you, it's a mess.

I had the chance to meet Alexander's teacher and visit his classroom at the open house the night before school started. So far we are thrilled with his teacher. She has her classroom so organized. You can tell that she has spent a lot of time getting it ready. It's full of activities and decorations and positively oozes excitement for learning. I guarantee she spent her own money on some of these supplies.

All of the classrooms have Smart Boards, which I was very impressed by. See the socks hung from the ceiling that will blow when the furnace kicks on? So cute.

Alexander is going to love the 1st grade.

Preschool Days

2011-09-08T19:07:00.003-04:00

My big girl has just begun her 2nd year of preschool, but there have been big changes this year. Last year she attended a classroom classified as reverse mainstream. This means that children who develop more typically are in the same class as children with disabilities. However, the number of children with disabilities and IEPs (individual education plans) are higher than what would be found in a regular community setting. Sophie thrived here.

This year we are in a new school district. Even though we only moved down the road, we crossed the County line. Sophie's old preschool was not an option in our new school district, but besides that, her mama had gone to school (C2P2-EI through Temple University Institute on Disabilities) and had been bitten by the Inclusion bug. This year Sophie is attending a typical neighborhood preschool. Let me explain.

First, let me start with what I believe Inclusion to be. Inclusion means that ALL children have the right to be educated in their neighborhood community school with their peers. This does not mean that children with IEPs and disabilities are dumped in a typical classroom without appropriate services and supports. This does not mean that Sophie will be forced to take Algebra in high school, just to say she's included.

It means that on an Individual basis (as in the individual in IEP) the team will assess Sophie's needs and design a plan with supports to make it possible for Sophie to attend a typical school. Inclusion looks different for every child. For some, it may mean attending art class, lunch, and recess with typically developing peers. For others, it may mean being in the typical class full time. (I hate the word typical, but that's what we've got)

For Sophie, it means that she is in her class 99% of the time. Her speech, occupational, physical therapists and her itinerant teacher (like a developmental therapist) work with her while she is IN class. Her ST participates in story/circle time. Her PT is there when the kids go to the playground, etc. In the natural class environment, her team incorporates extra support. Studies have proven that Inclusion not only works for our kids with disabilities, but the benefits afforded to their typically developing peers are enormous. This is the ideal Inclusionary environment. I'll be the first to say that not all schools are prepared to offer this level of support which may mean that forcing an unsupported version of Inclusion would be harmful to the student.

This year we have chosen to let Sophie ride a bus to school. Believe me, this was a heart wrenching, long drawn-out decision, but the best one for our family. Before putting our daughter on a bus to school, I spoke with the Director of Transportation (I always go to the top) and he designed a bus orientation for her. They already do orientations for kindergartners, but it hadn't occurred to them to do this for preschoolers with IEPs. They were wonderful! I took my 3 kids to the bus garage where we met the Director and Sophie's bus driver Miss Daisy. The kids got to explore the brand new, full sized bus. We fitted Sophie's safety seat to her (a specially designed, brand new piece of equipment that works much better than a car seat and will ONLY be used by Soph). We were sent home with bus safety coloring books and a Pooh Bear bus safety video. Awesome.

Sophie started school last Thursday but the bus wasn't ready until this week, so we drove her for the first 2 days. This gave her siblings a chance to tour her school on her 1st day. After the 1st day we received a call from the school district. They wanted to add a Personal Care Assistant (PCA) to Sophie's team. She was escaping class and they were concerned for her safety. (ha!) I had to hold back the laughter. This was exactly what we forewarned them about. I have many friends who have to fight for a PCA. Our school district pleaded with us to allow one. I find that hilarious and ironic in a dark and messed up way that only other special needs parents can truly understand.

Of course I met with Sophie's new PCA, who is fabulous. Her job is to keep an eye out for Sophie but not interfere with her play and learning. She also helps with lunch, diapering, and transitions from one activity to the next. She is a Russian angel and we already love her.

The bus has been an experience for all of us. We gave a small token of thanks in the form of flowers and chocolates (believe me bribes are not only the way to go, but they WORK)! On the first day we had thick fog and flooding caused many roads to be closed and traffic to be horrible. The ride that should have taken 20 minutes max was 45 (I know because I went to her school) and Sophie freaked out. Bad. She cried so hard she broke out in petechia (broken blood vessels all over her face and upper torso that only happens at scary doctor's appointments and procedures). Miss Daisy felt so horrible that she demanded a change in the route to the Director, meaning that Sophie would go straight to school versus first picking up another child who attends a different school. Then she went to the toy store and spent her own money on toys for Sophie to have on the bus. She gave me her personal cell number and assurances that she's caring for my baby like she is her own. She tenderly wipes her tears and nose. We love Miss Daisy.

On Sophie's 2nd day on the bus, while I was strapping her in, a very rude and self-important motorist began wailing on her horn as she was not able to pass the bus. We were not taking pictures. We were not dawdling or chatting (we did that on the 1st day). I was simply strapping my daughter in her safety seat. Mark and I approached this woman to explain but she brushed us off with a "I have no time to talk. I have to get to work." After explaining to her that she is a witch with a b as she sped away (not my proudest moment, but I don't take it back) we began scheming plans for how to deal with her in the future. Plans include video taping this unbelievably rude behavior, following her to her work and later emailing her boss the video, sending it to the local tv stations, and uploading it to youtube. My friends on fb offered to form a posse. We could have signs and pass out "jerk awards" or slap "jerk award" stickers on the bumpers of anyone else who dares to act this way.

In any case, we are pleased with Sophie's preschool despite being very close to going to Due Process until we agreed on her placement. I know that what you really want are pictures, so here you go. I couldn't include our videos as they showed the bus #s and school district. Friend me on fb if you would like to see them. If the slide show isn't below, hit refresh or click the link HERE.

embedded video below

Make a video - it's fun, easy and free!
www.onetruemedia.com

Mark Reports On Hurricane Irene

2011-08-27T17:49:00.002-04:00

MORE BREAKING NEWS:

Now it's a party. The Kersting family has arrived.
WHAT DOES A GERMAN RAIN GUAGE LOOK LIKE?

Hurricam pt. 1

2011-08-27T16:51:00.005-04:00

Alexander and I are blogging live from the front porch as Hurricane Irene's rolls in.
On the scene reporter Alexander explains the situation with Hurricane Irene
a few moments later...

Storm Supplies (check)

2011-08-27T07:00:00.004-04:00

I took one last trip to our grocery store yesterday stock up before Hurricane Irene arrives. The store was packed and lines were long, but as usual the people were patient and friendly. The only fighting for supplies were my kids who all wanted to ride in the blue car cart. Many of the basic supplies were low or completely gone, but thankfully Mark had picked up those items already. Things like:

SOUP

BOTTLED WATER

MILK

Even Mark had no luck with the D batteries though. Our big flashlight takes D, but we have plenty of candles. (I just found a 4 pack in our junk drawer! woo-hoo)

See -- family and friends back in Iowa. This is just a fraction of our food supply. The van is gassed up, the outside stuff is packed away. Laundry is (almost) finished. Mark is working on raising stored stuff up in the basement. Down spouts are extended. Everything that needs charging is charged. The bath tub will be filled. We have some cash. We're set.

The projected sustained winds are 58+mph for our area during the worst part of the storm. It will be a gnarly, but we're safe. We'll keep you posted as we can.

Stay safe East Coasters!

Hunker Down

2011-08-26T09:33:00.004-04:00

So, we had an earthquake on Tuesday and Hurricane Irene is expected this weekend. Not a typical week for this crew from the Midwest.

When Mark went out late last night to buy our supplies for the weekend, he kept me updated via text messages. Messages such as, "The guy at Home Depot was irritated with me for asking about portable generators. He said there are none available in the immediate vicinity. Apparently he's been getting this question a lot. They have a bajillion sump pumps, though. Home Depot is out of 6Volt batteries. At a quarter to 10 at night and Wally's is packed like it's Christmas Eve! No 6V and no D batteries here either. This is surreal. Can't imagine what it'll be like tomorrow or Saturday. They only have whole milk and 1% left! No batteries or milk at CVS or the grocery store either."

So, we have water, food, no extra D or 6Volt batteries but plenty of candles and plans to just stay home while the wind and rain do their dance. Our main concerns are basement flooding and downed power lines. Other than that we have a solid house and are far enough inland that we'll be fine. I pray for the parts of the country in her direct path. This could be really bad folks.

As long as we keep the power, I'll try and update this weekend. We are expected to have the most intense wind and rain late Saturday night through Sunday. Local friends, if you haven't stocked up on supplies (especially batteries), be aware that it is fully nuts out there.

And now, a little hurricane humor

Waiting for Aftershock

2011-08-23T15:51:00.000-04:00

Most of us know that a 5.9 earthquake occurred today around 1:53 EST with an epicenter in Virginia that was felt all over the East Coast. I'm blogging from my office in center city Philadelphia. Mark is home with the kids. Everyone is fine, but holy cow, what a ride.

My organization has the corner office on the 6th floor and I am working alone. When the shaking got really bad I ran out of there afraid that the windows would break or that the office would fall off of the building. Yes, it was that startling. Very near to this building, office windows did shatter, but no reports of other damages have been made. I joined the others in the organization on my building's same floor and we evacuated down the stairwell and tried (often in vain) to get through to loved ones on the phone.

There is something particularly shocking to the system when things like this occur, at least for me. It hit with no warning (as they do) but no one knew for sure if it was an earthquake or terrorist attack. At first I was startled, then scared, then really wishing I wasn't so far from home.

Our phones have been very spotty but texting and on-line services like fb are working.

Mark checked out our house for damage and reports some cracks in the paint around the windows. I don't know if they were already there or are new. He also reports that Alexander's old timey alarm clock that was broken is now working again, but that's it. I just remembered that my nephew Austin predicted the earthquake in Illinois in 2008 and I just got a text from my little sister that she recently had just had a nightmare about an earthquake and Sophie was in it. Come to think of it, I didn't sleep well last night due to nightmares. Weirdness. I guess we're all a little wacky.

As there may be aftershocks I will attempt to get home soon. It's an early rush hour as many buildings have been evacuated. Should be an interesting ride home on the train today.

On Sunday hurricane Irene is expected to march up our way.

I think I'll stop by my favorite wine store on the way home.

Be safe out there friends!

local story HERE

What I Would Tell You...

2011-08-21T12:47:00.003-04:00

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon

June 29th 2011

Now online at www.WhatIWouldTellYou.com

re-printed with permission

Billy the Snow Punk

2011-07-21T19:25:00.003-04:00

Today we are house bound with an excessive heat warning and a real temperature of 96°with a heat index of 106° In an attempt to stay cool, here's a look back at the construction of Billy, our snowman from this past winter at our old house.

embedded video below. Refresh the page if you do not see the video or click HERE

Make an on-line slide show at www.OneTrueMedia.com

Cherry Hill

2011-07-11T07:00:00.000-04:00

"Eastern State Penitentiary, was once the most famous and expensive prison in the world, but stands today in ruin, a haunting world of crumbling cellblocks and empty guard towers. Known for its grand architecture and strict discipline, this was the world’s first true “penitentiary,” a prison designed to inspire penitence, or true regret, in the hearts of convicts. Its vaulted, sky-lit cells once held many of America’s most notorious criminals, including bank robber “Slick Willie” Sutton and Al Capone." taken from the website

The Quaker designed prison opened in 1829 remained in use for 142 years. As a lover of history, ghosts lore, and architecture, this tour was a feast for the senses. My dear Carlin and I spent an afternoon wandering from cell to cell, trying to imagine what it must have been like for those who did hard time there. Solitude with only the Eye of God (small opening in the ceiling) to keep companion to their thoughts, they did their time in absolute silence to repent their sins. That is until demand over-ruled supply, cells doubled their occupancy, and stories leaked of parties complete with booze supplied by the staff, even during prohibition.

If ever I needed impetus to save for a real camera and take photography classes, this place is reason enough. In fact, as our wedding anniversary is Bastille Day (July 14th), and there is a street festival to commemorate it outside the prison walls, I think our return will be soon. Revelers are encouraged to dress in period costume and bring a squirt gun to re-enact the storming of the Bastille. Of course, we could always return for the haunt this fall, when they turn it into a haunted house which is consistently rated America's scariest haunted house. In fact, TAPS filmed an episode of Ghost Hunters there (view HERE).

Carlin and I enjoyed dinner at a lovely Italian place after our tour. I love this photo of her.

Here are my photos, see below (refresh this page if you don't see the slideshow) or better yet:

Make an on-line slide show at www.OneTrueMedia.com

View the slideshow in a separate window and click view larger HERE

Slice of America

2011-07-10T07:00:00.001-04:00

I love a parade! A selling point for me in buying this house was the family friendly neighborhood where neighbors actually know each other, look out for one another, and know how to throw a great party. For over 60 years they have hosted a 4th of July parade that travels right in front of our new home.

I'm a big fan of parties, especially parties with a theme. Throwing myself into party planning mode is a guilty pleasure and I am darn good at it. In the few weeks I had between the move and the 4th, I stocked up on bunting, patriotic stars (including star ice cube trays), and planned the menu. Lacking a punch bowl, I found a cheesy nostalgia fountain on-line. I just had to buy two as one was for 2 gallons (yes 2 gallons) of sangria and one was for punch. They flow from 3 tiers and light up and make me happy.

We were blessed to have a great turn out of friends and even family that travelled from Iowa. Expecting just a bunch of kids on decorated bicycles, we were pleasantly surprised with bagpipers, bands, antique cars and trucks, fire trucks, steppers, clowns, and floats. An honest to goodness parade!

Alexander's bestie from his last school attended, making for a very happy boy.

Despite the summer heat, the morning parade was grand and the sangria which soaked in fruit and brandy overnight was scrumptious.

Our good friends surprised us all with their new edition, Ms. Kimberly, 10 days old! I momentarily forgot my hosting duties as I snuggled her, breathed in her sweet baby scent, and admired her dark curly hair.

supplying sangria to the parade marchers

We were overflowing with gorgeous families.

Sister and Papa

A year ago we walked out on faith and moved across the country to a new city. For years I had been praying for a job that would fulfill my husband, in a place that would nourish our family, and enrich our lives. We've found so much more than that in our little corner of the world.

This place feels like a small town in the mid-west, yet is just down the road from the big city. After the parade, the park around the corner hosted music, free hot dogs, a dunk tank, bouncy houses, face painting, sack races, baseball, and train rides. Alexander and our buddy Sy rode the caboose.

Although our lives are busier than we might like, we are happy. We have finally found our Home and we are putting down roots. Join us next 4th of July for our 2nd annual parade watching party!

Build & Play in 1 Day

2011-07-09T09:09:00.003-04:00

guest post by Mark

If you ever get one of those backyard play-sets, you should probably know what you're getting yourself into. Having recently completed one, I found the manufacturer's claims that you could "Build and Play in One Day" a bit disingenuous. Here's what really went down: 143 pieces of wood in 42 different dimensions, plus 94 additional plastic and metal pieces held together with 935 screws, bolts and fasteners = 1,172 parts/pieces.

Day 1: Monday May 23 Delivery and unloading. 1 hour
Day 2: Tuesday May 24 Unpacking and sorting. 2 hours
Day 6: Saturday May 28 Shopping for stain, water seal and other supplies at Lowe's. 2 hours
Day 7: Sunday May 29 Water sealing party with the Kerstings. 14 hours: noon to 2am (minus hours spent on BBQ, plus time gained from two workers)
Day 8: Monday May 30 (Memorial Day). Finished water sealing. 10 hours: 2pm - midnight.
Day 10: Wednesday June 1 Cleanup and wood sorting. 1 hour.
Day 13: Saturday June 4 Counting and sorting hardware. Discovered 6 of 10 brackets are faulty. Called company for replacement. Completed steps 1-2. 6 hours: 3pm - 9pm.
Day 17: Wednesday June 8 Replacement parts arrive.
Day 25: Thursday June 16 Completed steps 3-6 (okay, 5.5) before nightfall. 2.5 hours: 7pm - 9:30pm.
Day 27: Saturday June 18 Completed steps 6-19 (minus 16 and 17). Began leveling ground underneath playset. 12 hours: 9:30am - 9:30 pm.
Day 28: Sunday June 19 (Father's Day) Continued leveling with only partial success, completed through step 22. 8 hours: 9am - 3pm, 7pm - 9pm.
Day 29: Monday June 20. Got stone and slate to support and level posts. 1.5 hours: 7:30pm - 9pm.
Day 30: Tuesday June 21. More leveling. 0.5 hours: 7:30pm - 8 pm.
Day 31: Wednesday June 22. Assembled rock wall while alone with three kids. Found bricks to aid in leveling foundation. 3 hours: 3pm - 6pm.
Day 32: Thursday June 23. Built ladder and began roof section. 2.5 hours: 7pm - 9:30 pm.
Day 33: Friday June 24. Rebuilt roof section, correctly this time. 1 hour: 8:30am - 9:30 am.
Day 35: Sunday June 26. Installed roof and canopy. Attached ladder and supports, as well as rock-climbing wall and supports, upon newly-laid brick foundation. Leveled foundation for extension section with brick, after going out to collect discarded bricks at Rosemont Station. Laid decking on extension. 11 hours: 10:30am - 9:30pm.
Day 36: Monday June 27. Raised slat walls on extension, built and attached picnic table and bench. Added window trim. Back in order, completed up through step 36. 4.5 hours: 4pm - 9:30pm (minus one hour for grilling and dinner).
Day 37: Tuesday June 28. Hung swings, filled around benches, assembled monkey bars. 2.5 hours: 7pm - 9:30pm.
Day 38: Wednesday June 29. Assembled stairs to monkey bars, attached stairs to monkey bar assembly. Used post-hole digger to prepare two 2' deep holes for stairs. 2 hours: 7pm - 9pm.
Day 39: Thursday June 30. Attached monkey bar assembly. Built landing zone from leftover wood. Attached slide to unit and then to landing zone, which had to be built upon level ground and brick risers, and a 2x4 stake driven a foot deep. Cleaned the playset and mowed the yard. 8 hours: 10am - 6pm.

"Build and Play in One Day" totals:

95 work hours over 39 days.

Note from Jen: The kids love their "park" and Daddy is our hero!

Sophie is 4!

2011-07-02T05:50:00.003-04:00

Sophia Madison turns 4 years old today. Four years ago I gave birth in the back of a moving vehicle. Four years ago today she had surgery correct her duodenal atresia (intestinal blockage). Four years ago my soul was reborn as her tiny body came bursting into this world. Sophie has taught me, has taught so many of us about love, patience, acceptance, and joy.

Happy birthday my little punky! Tonight we celebrate with fireworks, friends, and family.

Wonder

2011-07-01T20:19:00.004-04:00

Most people who know us recognize this as a very special song for our family. Tonight as I'm decorating the front porch for the 4th of July with a ridiculous amount of bunting, I'm listening to my favorite songs on youtube. I had not heard this version of Natalie Merchant's Wonder, nor this introduction with her description of the song's inspiration. Take a listen.

Covert Op

2011-06-22T08:00:00.002-04:00

As parents of a 6 year old boy and two girls, (Sophie is nearly 4 and Helena just turned 2), Mark and I are chronically sleep deprived. Much of our energy is expended while keeping the girls out of trouble. When I say trouble, I mean trouble with a capital "T" and that rhymes with "P" and that stands for Pool (you get bonus points if you can tell me that reference).

I would be wealthy beyond imagination if I had a penny for every time I have to break up the girls who seems to be training for extreme cage fighting, writing on surfaces that are not approved, and exploring every nook and cranny except their designated spaces and toys. They have a special radar for honing in on the exact wrong thing to seek out and destroy. I'm convinced they are special operatives in our armed forces.

To understand this story you must know that Sophie gets up like clockwork around 6am, every.single.day. Helena and the rest of us could sleep till noon, so Mark and I switch off on who has to get up at dawn. We have a series of baby gates and locks designed to keep our special ops from having access to specific areas but most importantly, from escaping the confines of the house without pre-authorization.

On this particular morning, we were sloppy. We've stopped setting alarm clocks as we know that Sophie will get us up. Her MO is to wake up and fuss, but never leave her bedroom. Our security system was unarmed and while the outside doors were locked, the baby gates were not closed.

The special forces leader, A.K.A. Sophie woke at her normal time. However, she remained silent as a mouse. Seeing her opportunity to leave her ungated room, she snuck downstairs and began a covert mission. At some point, she recruited her partner, A.K.A. Helena who joined the mission. They betted on their parents being so exhausted that they wouldn't wake up if they were sneaky and quiet.

From what we can gather, the special forces had free reign of the house for 60-90 minutes. What you don't see is the huge puddle of bubble juice left from the spilled bottle, a towel and bath rug that were stuffed in the upstairs toilet, and a living room and dining room that were virtual landmines of toys and shoes because we began cleaning before I thought to grab the camera.

Let me break this down for you. As upset as I am at the havoc created by this mission, I can't help but admire the cunning, planning, deviousness, creativity, ingenuity, and team work it took for the girls to pull this off.

Happy Birthday Helena

2011-05-30T09:42:00.004-04:00

tenacious, creative, beautiful, sneaky, loud, funny, curious, playful, loving

Happy Birthday Schmoogie! We love you.

Scootin

2011-05-28T18:48:00.006-04:00

With my new job in the city, I commute to work by train a couple of times a week. We live very close to the station, yet not quite close enough for me to walk, given my time constraints. I also have to lug my work with me, which makes riding my bicycle impossible as my bag is too heavy. I'm usually gone in the morning before most of the family is up. We had been making due with parking the car at the station, but this left Mark or the sitter with no vehicle for the whole day. On the mornings when I tried to get a ride, the kids were cranky about getting up early or I would go in later. We need a second mode of transportation and today we got one.

We had been researching scooters as an option for a couple of months. As we chose a Buddy with 125 cc's, we need a motorcycle permit (it has some giddy-up). Mark and I passed our tests on Friday at the DOT.

We will need to get a full motorcycle license before we can carry passengers and with our permits we are restricted to riding from sunrise to sunset. PA offers fantastic motorcycle courses for free and when you pass you get your license. I hope to take a class this summer.

The kids and I followed behind Mark on our trip back from the big city and we all made it back to the burbs safely.

Alexander joined in the fun by wearing his bike helmet but the kids won't be scooting around with us for a while.

We're smitten and I just found a new reason to let the chores go another day. Ciao bella!

It's Not Acceptable R-word PSA

2011-05-24T17:25:00.003-04:00

The Spread the Word to End the Word campaign has a new PSA. It will be airing tonight 5/24/11 during Glee at 9:50. Read more about it and the talented actress and self-advocate Lauren Potter HERE

Please be advised that this PSA uses strong language.

Russia's Forgotten Children - ROOF

2011-05-17T14:15:00.008-04:00

Years ago when Mark was studying at Georgetown under the brilliant Dr. Murray Feshbach, I first learned of the conditions of the Russian orphanage system. A story on 60 Minutes stuck in my heart and mind that featured Murray who spoke about Russian demographics and orphanages. When Mark and I began planning a trip to Russia in 2003, I knew I wanted to do...something. I began researching on the internet and found Russian Orphan Opportunity Fund - ROOF.

After a couple of hours of devouring their website, I discovered that their US office was located in Racine, WI. We were living in Madison, WI at the time and I just about fell out of my chair. It seemed Divine Providence that we would find them and get involved. We had our first experience raising funds from friends and family to help support the work of ROOF at Podol'sk Orphanage. We were in contact with Karen and Peter Jansson (parents to Georgia) and met with them to turn over the money raised from our generous friends, co-workers, and family. It was enough to support programming in Podol'sk for 3 months.

Though we have remained supportive of ROOF through the years, it is Mark and I who have most benefited from our relationship. Our lives have been forever changed and inspired by the staff, volunteers and the orphans we've met. During a research trip to Russia, Mark lived with the family that co-founded ROOF and we remain in touch with Andrew and Georgia.

I could go on and on, but their website has a wealth of information, including a brand new brochure called Russia's Forgotten Children. I strongly encourage you to check out their website and brochure. Click the image below for the brochure or visit http://www.roofnet.org/forgotten

embedded video from our trips to ROOF in Moscow below. if you do not see the video, refresh the page or click HERE

Make video montages at www.OneTrueMedia.com

Just Another Bump in the Road

2011-05-13T16:15:00.005-04:00

Because of those with Down syndrome who have come before us, we know to get our kids tested early and often for things like hearing loss, vision problems, thyroid function, etc. As such I choose to be grateful that we know about Sophie's hearing loss at such a young age.

Sophie recently went under general anesthesia for an Audio Brainstem Response (ABR) and was diagnosed with conductive hearing loss. Her loss is moderate in the lower tones and mild in the conversational levels. Her left ear is slightly worse than her right. This means that she can hear, but sounds are somewhat muffled. She is not likely hearing words clearly which may help explain her delayed speech.

A conductive loss is a problem in the ear vs. a problem with the brain receiving the information. This could be a problem with the three little bones that conduct hearing, fluid (she has tubes & dry ears), or the fact that she (like many with Ds) has super tiny ear canals. These will not be corrected with surgery or growing up, meaning it is likely permanent. She is scheduled for another behavioral test to tweak the results for hearing aids and a CAT scan to rule out mechanical problems that can be corrected. After this she will have ear molds made and begin using hearing aids. Does anyone have experience in keeping young children from removing or chewing hearing aids? We're also finally getting her some suresteps orthotics.

Sophie's yearly IEP was this week and after 2 hours and 47 minutes, we agreed to the supports and services she will need, including 60 weekly minutes each of PT, OT, ST, and an itinerant teacher. For 4 weeks this summer the therapies will be at home. Starting this fall she will go to a typical neighborhood preschool and receive her therapies there. Next we will take her IEP to her new school district (due to our move) and make sure it is enforced.

Now, I'm off to research swing sets and plan Helena's 2nd birthday (May 16th). Can you believe it? I've got a new house to put together and beautiful weather to enjoy. Hug your family and love - better. Happy weekend everyone!

Here's a sneak peak at 1 of many painting projects we're working on. I wrote love notes on the girls' bedroom wall before covering it up with more paint.

Still Here

2011-05-02T22:32:00.005-04:00

Life. It's been a whirl wind these past few months. I cannot begin to capture it all nor do I have any realistic hope of catching up in the near future. The best I can offer is a brief summary.

I started my new job nearly three months ago. Though I wasn't looking, my dream job fell out of the sky and knocked me in the head. My position half time and is in the big city, so I take the train twice a week and work some of my hours from home. We are a small non-profit that does huge things and I am so proud of being a part of an organization that works on behalf of children with special needs to make sure they have the best possible education in an inclusive, neighborhood school.

My boss sent me to a conference on inclusion of people with disabilities just days before closing on the new house. It was a life changing experience and this is one topic I hope to blog about soon.

Mark and I are officially home owners once again. We bought a brick twin just down the road from the house we have lived in for the past 10 months. That's 7 moves since we have been together over 12 years. Once I am too old to do the stairs, I'm installing a chair lift because I never hope to move again.

Though we moved close to the old house, it is in a different county and school district. Today was Alexander's first day at his new school and he is loving it. We are writing Sophie's new IEP next week and she will transition (somewhere) in a few weeks. It will be a fight as our new coordinator wants us to ship her a few towns away and that isn't happening. Fortunately, I have made connections to the big guns out here and the new school district has no idea who they are dealing with.

Santa was on something when he brought Sophie the Melissa and Doug latches puzzle which essentially trained her how to be a safe cracker. (see HERE) She has developed into the great Houdini and has left the new house to meet the neighbors at every opportunity. On Easter Sunday we officially made the transition to the new house. We met our next door neighbors when we needed to borrow their ladder. Mark had to climb in a 2nd floor window as the girls had locked themselves in a bedroom. The locks require keys (which we did not receive) and do not have the little push button safety release. Happy Day!

There is so much more to say but I am past exhaustion and just wanted to let you know I'm still here. Oh, and happy 3rd year blogiversary to me!

Congrats Mark on Your NY Times Debut

2011-04-17T08:23:00.003-04:00

Dear Friends,

I am so proud of Mark for his article in today's New York Times. It is a great read and we need to ask for your help.

Please visit the link and promote it by recommending it through twitter or facebook. If it generates enough attention, it may be picked up by other media sources.

If you have a print copy and are willing to send us a clipping, we would love that too!

Thank you.

Mark's article:

Moscow's Drinking Problem, click HERE

Little Teacher

2011-04-15T18:42:00.015-04:00

Many mistakenly believe that people with developmental disabilities have limited emotions or opinions, or they buy into the idea that people with Down syndrome are angels who are always happy. I invite you all to spend a day with Sophie.

Our new house was vacant for a while (the closing was yesterday) so we spent the day cleaning it from top to bottom. After just 10 months in our current house, we will be relocating just a mile or so down the way over the next couple of weeks.

Sophie displayed curiosity about her new house, excitedly exploring every nook and cranny.

She showed deviousness & cunning by quietly sneaking outside (more times than my heart can take) to visit the neighbors as soon as she saw I was distracted.

She showed displeasure with being confined to certain areas of the house as we cleaned from room to room.

She used problem solving skills to break down baby gates that she couldn't open, taught herself to unlock the deadbolt, & showed an understanding of cause and effect when she mastered opening our brand new baby gate in 2 minutes.

She showed defiance when she refused to nap.

She showed pleasure when I played her favorite movie.

She knew she wanted more goldfish crackers, so she grabbed them and poured them on her plate faster than I could stop her with a look that said, "Mom, don't come between me and my fish." (while making the ASL sign for fish).

She showed delight in the fact that we can run in a big circle between the living room and dining room, which makes the game of tag so much fun. Her unabashed belly giggles and squeals of joy echoed off the walls in our empty home.

She imitated her mommy by trying to help sweep the floor, just like her big brother and little sister.

She asked for help by gently patting my arm and saying, "Ma!" and was persistent until she had my full attention.

She showed her stubborn streak when she refused to eat the lunch I had provided.

She is cranky now because she was too riled up to nap in her new surroundings.

She showed compassion to her baby sister when Helena was upset by sharing her toys and finding her pacifier, which she knows helps calm her sister down.

Sophie may have a very limited vocabulary but she manages to get her wants and needs known with the kind of spunk you would expect from any other 3.5 year old.

There is a reason for that. If you limit yourself to seeing only the areas that others define as delayed or different, then you are missing the lesson that Sophie is so much more like everyone else than she is different as are all people with disabilities.

Daily she teaches me to challenge my perceptions and redefines my definition of normal. And just like her siblings, she's determined to give her old lady gray hair.

(embedded video below)

Tim Shriver on Bill Maher's Show

2011-04-05T06:59:00.003-04:00

I know that this blog seems like a Tim Shriver fan club lately, (maybe it is) but I'll be darned if I could pass up posting this interview. Thank you Tim for taking this man to school and for working so hard to spread the word despite being met with such arrogance and adversity.

(embedded video below)

Tim Shriver on the Colbert Report

2011-03-31T16:35:00.002-04:00

embedded video below

I only wish Stephen hadn't closed with the gay joke.

Way to go Tim!

Visit from the Tooth Fairy

2011-03-30T10:31:00.002-04:00

I love being a mom! (embedded video below)

Alexander's 1st Loose Tooth

2011-03-27T23:54:00.006-04:00

Our big boy is growing up.

Alexander is 6!

2011-03-20T21:00:00.000-04:00

His daddy snuck into his room and snapped this picture of our little guy who was turning 6.

For months he's been asking for this giant donut pan. He requested the words Misty Island Rescue on his birthday cupcakes (it's a Thomas the Tank Engine story line).

I went to his kindergarten class with the cupcakes (very, very blue icing per the birthday boy's special order) and read them the story "The Stinky Cheese Man."

We did a craft with beads and then it was time to get ready for his big party.

As luck would have it, a local skating club was hosting a free open house for Alexander's school so we started the evening on the ice.

I stayed home with the girls as they were really sick, so this is the only picture from the first part of the party.

After skating, Mark came home and I took over at Bucca di Beppo for a pizza party.

We had a wonderful turn out and I had lots of help from our friend Max's dad.

The pizza was really good and the cake from the Bakery House was delicious.

Most importantly Alexander and his friends had a great time.

Happy birthday big guy!

For Cindy and David Combs

2011-03-08T20:29:00.019-05:00

A year ago I was honored to be introduced to my friend Cindy Combs. She is the self advocate who volunteered to go on live television with me to promote the Champaign County, IL Spread the Word to End the Word campaign and events in 2010. Cindy and I met at Developmental Services Center (DSC) a day or so before our morning show appearance to talk about the interview. DSC is an essential organization for people with developmental disabilities in Champaign County. Sophie's amazing developmental therapist Judy was from DSC and the developmental playgroup there was essential to her progress during our 3 years in Champaign, IL.

DSC staff members Janice McAteer and Kim Harris joined us and I had asked my friend Tracey Fairchild to go over what to expect during our interview as she had been doing the Morning Show for quite a while. She ran us through practice questions and Cindy brought us all to tears with her heartfelt message. Fearless and unhesitating in her responses, she talked about how hearing the "R" word hurt her and her friends with developmental disabilities. She talked about how her life is full of friends, work, and hobbies and that she is just like everybody else. In her gentle yet powerful way Cindy made her case for inclusive language which would lead to acceptance and respect for all people. I left that meeting humbled by my new friend.

On the morning of our live tv appearance, I was a bundle of nerves, but not Cindy. She and Kim had arrived at the station before I did and were chatting pleasantly. During our appearance Cindy spoke just as beautifully as she had during our practice run while I fell over my words. Listen to her message.

A couple of days ago I got a call from my dear friend and President of the Champaign County DSN. Ellen was not calling with good news. Cindy and David had been riding their tandem bicycle as they have for years when they were struck by a car. Cindy passed away. David was air lifted to the hospital where he remains in critical condition. My former community is in deep mourning and our hearts are broken. A great light in this world has gone out.

Thank you Cindy for being such an inspiration. David, we are all lifting you up in prayers.

Tributes can be left at DSC's website, http://www.dsc-illinois.org (News tab, then Blog)

Initial news coverage of the accident (HERE)

Email Campaign Calling for Justice (story HERE)

Take the "R" word pledge today http://www.r-word.org/

Budget Cuts to Special Olympics

2011-03-03T07:00:00.000-05:00

"We have a silent epidemic in this country. Children with special needs remain the primary targets of bullies in schools across this country. Health care continues to discriminate against people with intellectual disabilities. Employers still don't have the solution for hiring people with intellectual disabilities. Special Olympics is not just a nice event...We're a social inclusion movement fighting discrimination and prejudice...The current House budget eliminated [funding]. It's not a hair cut, it's a guillotine."

---Special Olympics Chairman and CEO Tim Shriver

As I said to a friend who first alerted me to the budget cuts, maybe members of the House would like to come over and take candy from my baby as well. For shame!

This is one video you want to watch.

Visit msnbc.com for breaking news, world news, and news about the economy

Gayle King: Interviews - Eliminate the R-Word

2011-03-02T19:49:00.000-05:00

Gayle King: Interviews - Eliminate the R-Word

What a great way to end this important day. Please listen to this interview (click the link above). Gayle King does a great job interviewing Tim Shriver, Chairman and CEO of the Special Olympics on the Spread the Word to End the Word Campaign.

Oh Happy Day! Thank you so much to all of you out there working to make this a more inclusive, accepting, and respectful world for our loved ones with intellectual disabilities.

Spread the Word to End the Word, Op Ed by Self Advocate

2011-03-02T00:01:00.001-05:00

Why the word 'retard' hurts people like me

An athlete named John Franklin Stephens wrote an amazing op-ed on why the R-word hurts him. You have heard me explain why using the R word hurts me, my daughter and all of our friends in the disability community. Now it's time to read why it matters, directly from the words of an amazing self advocate. Please read John's piece and then visit www.r-word.org to sign the pledge.

So without further ado...

Using the word "retard" to describe me hurts

By John Franklin Stephens
September 1, 2008

A lot of people are talking about the movie "Tropic Thunder." One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it, say that the term is being used by characters who are dumb and shallow themselves.

You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."

So, what's the big deal?

Let me try to explain.

I am a 26-year-old man with Down Syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job.

Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to over 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.

That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind.

I want you to know that it hurts to be left out here, alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references.

Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke — the irony — that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me.

John Franklin Stephens is a Special Olympics Virginia athlete and Global Messenger who lives in Fairfax, Va. This article can also be found HERE

Be a fan of Dignity, Inclusion, Acceptance, and Respect. Take the R-Word pledge today at www.r-word.org

Repost: Disparity in Research Funding for Down syndrome

2011-02-24T08:35:00.004-05:00

The following post was written by my beautiful friend Becca who can be found at The Bates Motel blog.

Many of you know lots of facts about Down syndrome. I like to think I do, too. But this week I learned some facts that I didn't know before, facts that truly astounded and shocked me, facts that left me feeling sad and frustrated, but also energized and motivated. Motivated to try to rally the troops, those legions of you with loved ones with Ds, to do something so that my daughter, Samantha, the love of my life, can have a longer, healthier, more productive life.

1 in 691 live births is a baby with Down syndrome. I bet that's a fact that you already knew.

An average of $42 in Federal funding is given per person with Ds (there are @400,000 in the US) for research, compared to the $3,000 per person with Cystic Fibrosis (there are @30,000). I bet many of you didn't know that one, although I posted it a few weeks ago.

Really, I could spew facts and numbers till the cows come home, but I honestly don't want to lose you on this. This is too important.

Why such a disparity? Perhaps a person with a cognitive disability is viewed as less of a person than someone with a physical disability. Valued less. Worth less.

Samantha is not worth less.

Ds researchers are able to come up with solutions to the issue of cognition, but they don't have the means. It overwhelms me to think that there could be a solution in just a few short years that will make a tremendous difference to Sammi. But without major Federal funding, this won't happen. We're so close. It's a no-brainer, really. But why can't we get the backing we need to do this?

Down Syndrome Achieves is an organization dedicated to community support, advocacy, research and lobbying for legislative reform and federal funding for Down syndrome research. Yes, there are many organizations out there that support families and research, but after more than 40 years of plugging along, there still has been no truly organized effort to join forces and no basic infrastructure to really get things done. DSA seeks to do just this, and are off to a flying start, with the joint support of several well-known research hospitals and others in a position to influence the folks that make these funding decisions. Please visit their website, http://www.dsachieves.org/, join their mailing list, help to unite our scattered Ds organizations for the one cause we hold so near and dear to our hearts, making lives better for our children.

I'm not asking for money (although if you happen to have a cushy pocket of disposable income, it might be nice...).

I'm asking for strength in numbers and for you to spread the word, through your blogs, through your tweets, through Facebook, through phone calls and e-mails to your local Down syndrome associations to get involved. Feel free to share this post. There are so many of you out there with connections. Please reach out and use them.

At a DSA webinar last week, I learned that there are 170 groups with Federal funding ahead of Down syndrome, including tobacco and alcohol cessation programs. Why?? Counselling can often help someone with an alcohol or tobacco addition. Counselling will not help someone with Down syndrome. Yep, I just had to get that one last fact in here...

My Funny Valentines

2011-02-14T06:00:00.004-05:00

Happy Valentine's Day! Thanks to another great promotion by Tiny Prints, I was able to send a few personalized Valentines to our family. They arrived within days and are beautiful.

Living the Dream

2011-02-12T17:00:00.003-05:00

part 1 HERE, part 2 HERE

Why does my dream of being a Parent Consultant have to be put on hold?

On January 3rd I read an email about a job opening with PEAC for a program coordinator position. PEAC was looking for someone who could coordinate the Educational Right's Project and the Parent Consultant Network. The job is 20 hours a week. The office is in the heart of Philly and is housed within the offices of Vision for Equality. Some of the work of the program coordinator can be done remotely from home. Hours are flexible. Possibilities are endless.

My heart skipped a beat (maybe three) as I read the job description. If I had been given magical powers to design my ideal job, I would not have been able to conceive of such a perfect fit of my professional background, availability, and personal goals. It had been more than a decade since I updated my resume, so I contacted my references, submitted my application, and waited. Within days a PEAC board member contacted me to do a phone interview. Then I was asked to go into the city for a second interview. Shortly after, as Mark and I were with our realtor touring potential houses to buy, I received a call from PEAC's President. The job was mine and as such I will not be able to be a Parent Consultant during the time that I coordinate the program. My dream has evolved.

Not only do I have the most amazing family that anyone could ask for, but I get to experience both worlds. Friday was my first day. I will still be a (mostly) stay-at-home mom, but I also now have a job that is affecting change on individual and systemic levels.

We have a great sitter who is coming to the house and on the days that I go into the office I will be taking the SEPTA train. My walk to work from the station takes me by Chinatown. The office is 2 blocks from Independence Hall.

In my heart I'm still a girl from Iowa and I keep pinching myself to see if this is really my life. I am exactly where I'm supposed to be.

The Dream

2011-02-11T19:13:00.011-05:00

continued from HERE

When Sophie was born 3.5 years ago I said goodbye to my dream job as a program coordinator at a domestic violence intervention agency to become a full time stay-at-home mom. My work since then has been as a volunteer advocate in the developmental disabilities community.

On January 2nd I awoke from a dream that felt more like real life than the typical nonsensical dream. I can still see details in my mind's eye. In this dream I returned to my old job at the shelter. My boss was there and everyone was expecting my return. There was no pomp and circumstance. It was as if I had only been gone for the length of a long maternity leave and I fell right back into the swing of things, as was expected of me. This vivid dream stayed with me, but I didn't know why.

Over a decade ago a steering committee with the Temple University Institute on Disabilities had a vision to create a non-profit organization that would work to assist families of children who have developmental disabilities in a truly innovative way. Born from the passion, dedication, pain, experience, and dreams of a small group of parents of children with special needs, Pennsylvania's Education for All Coalition, Inc. (PEAC) became a reality.

PEAC is a small organization with larger-than-life goals. Read more about their work HERE. PEAC believes that parents of children with special needs are experts in the disability field (because we are). Parent Consultants are trained to assist other parents by offering support via email, phone calls, in-person meetings, assistance in preparing IEP goals, and attending IEP meetings to support families. Parent Consultants also speak at universities and train student teachers. PEAC conducts IEP planning clinics and will be hosting an inclusion conference for 500+ participants in November 2011.

The ultimate goal is inclusion for ALL students with IEPs in their least restrictive environment. This means that for each child with an IEP, inclusion is specifically tailored to their needs and abilities. PEAC does not support forcing students into classes that would not be beneficial to them and without the proper supports and modifications. However, PEAC does believe that ALL children with IEPs can and should be adequately educated and included in their community schools.

The work of PEAC is multi-dimensional. PEAC assists individual families yet also works towards state-wide systemic changes to promote inclusive educational practices. PEAC connects with future educators (college students) and has quickly earned a very respected reputation at all levels of the educational system. At the heart of this work PEAC is a collaborative organization, not an adversarial one, whose ultimate goal is inclusion for all students, regardless of ability.

I want to be a Parent Consultant for PEAC. I want to have that knowledge and give back to others who need help navigating the (often) uphill battle that befalls parents of children with special needs in the educational system.

However, my dream has been put on hold.

Unblocked

2011-02-08T22:32:00.004-05:00

It wasn't so long ago that I wrote this piece about being on a quest for something, without the foggiest idea of what I was searching for. Needing direction and unsure of what my next great adventure would be, I dreamed and I waited.

Then magic happened. Surreal, mind-blowing synchronicity.

We plan and God laughs, but I have learned to listen. My plan was to stay at home full-time until our children were in school. I traded in my working mom role to be a stay-at-home mom a mere handful of days before Sophia came bursting into our lives and changed us all from the inside out. Despite being unemployed, I continued my work as a volunteer advocate in my new and beloved community of families who love someone with a disability. The accomplishments I'm most proud of, such as two consecutive years heading the Champaign/Urbana Spread the Word to End the Word campaign, and the 1/2 day conference on safety issues for families and professionals, were born of a deeply seated passion, pain, and desire to improve this amazing world of ours.

Looking back at my life, a distinct pattern is glaringly obvious. I am drawn to people (usually women, but not always) who have great strength, compassion, power, beauty, selflessness, and a desire to help others. They are innovators with take-charge personalities who work tirelessly and are at once made of steel, yet are gentle as the rain. These are the people I crave to be around and hope to emanate.

A universal truth is that we learn the most from our adversities, pain, and failures. If I had not been raised in a home with an alcoholic and abusive father (sober 4.5 years now), I might not have started my work as a teen advocate for child abuse victims. I probably wouldn't have worked for 2+ years as an AmeriCorps*VISTA. The skills gained during this time and my understanding of the importance of serving others led me to my work as an advocate for victims of domestic violence for many years. Without Sophia I would surely have missed out on the soul-altering joy that comes with a membership in the disability community.

Trust. Faith. Letting go of the frenetic need to have control. Patience. Lessons I keep learning.

In my new corner of the world I was blessed to connect with 3 beautiful souls immediately after moving here. Cecilia encouraged me to attend a disability advocacy training called C2P2-EI. As a participant, I receive emails about local trainings, events, conferences, and job opportunities.

Out of the clear blue sky I read an email from this group that sent shock waves through my system. I was shaken. I kept hearing a line from Oscar in the movie Armageddon when they are about to launch in a rocket:

"Great, I got that "excited/scared" feeling. Like 98% excited, 2% scared. Or maybe it's more - It could be two - it could be 98% scared, 2% excited but that's what makes it so intense, it's so - confused. I can't really figure it out."

5AM, Before the Plow

2011-01-27T06:17:00.003-05:00

Snow Day Babies!

2011-01-26T12:15:00.005-05:00

Oh yeah, it's a snow day! I am preparing a roast, carrots, onions, and mashed potatoes to warm our bellies for supper and fill the house with mouth a watering aroma. As Philly prepares for another big storm (called a Nor'easter) we mid-western folk are trying not to be smug as some of the locals panic.

This morning Mark's trip to DC via Amtrak was rescheduled so now I don't have to worry about his safety or getting stuck in our nation's capitol. He was a little disappointed as they had predicted thunder snow in DC, which is so very cool to experience. His university closed today and PM kindergarten is not in session as the schools are closing early. We were prepared for the snow event to start this afternoon, so most of us are surprised that by noon we already have about 5 inches. Sophie had preschool this morning, but we're all home now, ready to hunker down and enjoy the day (or 2) off. We shall see what this afternoon's wave of snow will bring. Mark already has the base of our snowman started and Alexander is giddy to get outside.

At 8 am I shot a few video clips from our house. Once outside I was powerless to resist walking around the corner to the train tracks. There is just something magical about trains in the snow (though I wasn't able to capture any on video). The frozen blanket absorbs sound and the neighborhood was noticeably quiet. When I stumbled and landed on my back side I laughed like a little kid, fully padded and unhurt in my long winter coat.

Big changes are happening for our family. I am interviewing for a new opportunity tomorrow (send the good vibes/prayers please!), and we have begun searching for a house of our own. Yesterday my sweet Sophie communicated with real words and real sentences (well, little sentences). She asked for BBQ chips at breakfast (saying "chee" for chips) and when I refused she said "sad." Although I was a puddle, I held my ground for a whole 2 hours. She did not relent but patted my knee in the living room, saying, "Hi Mama. Go. Sit down. Eat" and fully expected me to follow her to the kitchen. I happily obliged and I gave her those chips. Before dinner she said, "Mama, eat please." Unless you love someone who struggles to communicate, you may not be able to appreciate the enormity of these exchanges.

I'm grateful for this snow day and for the opportunity for our family to take our collective breath as we gear up to move forward with our lives.

Super Bowl Traffick

2011-01-24T10:28:00.018-05:00

Yesterday we joined our fellow Americans across this great nation in the time honored tradition of grilling burgers and brats, drinking a few brewskies, and watching football on a lazy Sunday afternoon. Good natured ribbing had been going on all week on social networking sites between friends whose team alliances superficially divided them. It was an entertaining game, especially when 338 pound Packer Raji did his touch down celebration dance. Football fans now eagerly await the Super Bowl and as the excitement builds, parties are being planned and the Dallas/Ft. Worth area is preparing for the big event.

After the football games and the kids had gone to bed I stayed up to watch a documentary on CNN called "Selling the Girl Next Door" by investigator Amber Lyon. If you missed it you can go HERE to read about it and view video clips. This documentary focused on underage girls who are illegally trafficked into the sex trade in the good old U.S of A. The statistics are overwhelming. Their stories are horrific. The truth about what is happening in our country is sickening.

Human trafficking happens all over the globe. Some people believe only former Soviet-bloc countries or the poorest of poor in the 3rd world have this problem. We conjure up images of women who are lured from impoverished villages with the promise of working as a waitress, only to be sold as sex slaves. The fact is that it isn't just a problem in other countries and it's not just women. Little boys and girls are trafficked daily and yes it is happening in our cities.

Do not misunderstand my message. I am not saying that only Americans who are trafficked are worthy of our outrage and that victims from other parts of the world are of less value. As Americans we take great pride in our ideals. After all we are the land of the free and home of the brave. The scope of problems such as this appear so massive, so foreign, so incomprehensible that we honestly can't believe its happening here. We have great difficulty wrapping our minds around the truth and are certain that there isn't anything that we as ordinary citizens could ever do about it. The sad reality is, it sometimes takes atrocities like this to happen close to home before we stand up and shout "no more!"

Recently the on-line classifieds website craigslist removed their adult services section where ads for buying people by the hour for sex were as common as ads for selling furniture. Once craigslist pulled this section, thousands of ads cropped up other on-line classifieds websites, in particular backpage(dot)com. For $5 anyone can place an add and it is reported that in 2010 backpage(dot)com earned $20 million from their adult services section.

When children are arrested in the illegal sex trade they are considered trafficking victims by federal law, not prostitutes. Many are runaways who have fled horrific homes only to find themselves in a much darker Hell. Some have untreated psychological problems. The vile pimps that enslave them purposefully addict them to drugs as a way to control their "commodity." These are children we're talking about! Kids who likely will not survive more than 7 years after they are first trafficked according to the Texas Attorney General. If they do survive, they often continue in the sex trade (many by force) but are scorned as prostitutes and drug addicts, the lowest of the low for which we as a society have little care nor compassion.

Again, if you think this isn't happening in your town, I challenge you to take a look for yourself. I'm not sending you to an underground pornography site, but rather a legitimate website for buying and selling goods and services. Visit backpage(dot)com and click a city, any city. Go to the section that says Adult. Just this morning I looked in ads placed in Waterloo, IA, Chambana, IL, Madison, WI, Oklahoma City, OK, and Omaha, NE just to name a few. These ads are for people for sale in 2011 in America! They can't blatantly advertise 11 year old girls, so they use code words like "new in town," "innocent," "ready to be broken in," or "sweet." These are not consenting adults desperate to make some money in a bad economy.

So fine. Now we know. We're outraged, shocked, saddened and yet still powerless to do anything about it. Except we aren't. Fortunately there are organizations and advocates working night and day to help victims of human trafficking. This brings me back to the Super Bowl. Even as football fans across the country are gearing up for the big game in two weeks, preparations that can only be described as evil are also underway. Pimps are traveling to North Texas with their "wares" to be sold largely to drunken men during Super Bowl weekend. Their "goods" include little girls and boys as young as 11 (and possibly younger).

According to change.org "This year, the Super Bowl Host Committee is charged "to engage in responsible planning . . . to ensure the readiness of North Texas to host the first Super Bowl in the Cowboys’ new stadium." Local anti-trafficking groups have repeatedly offered to help the Committee use its influence to educate fans and the public about the dangers of child trafficking -- which could help to prevent thousands of rapes and abuses at America's biggest sporting event. But the Host Committee has refused to take meaningful action. And thousands of children will pay the price.

Change.org is asking us to tell the 2011 Super Bowl Host Committee to take a stand against child trafficking. In Dallas, a terrific local organization called Traffick911 has created the "I'm Not Buying It" campaign. They've offered the Host Committee free PSAs, posters, banners and informational cards to educate the public and protect children from being abused and raped. But the Host Committee refuses to display the information. The Committee is working hard right now to generate good publicity for North Texas and the game, so public pressure at this moment will be especially powerful."

We CAN do something! It doesn't matter what country you're from, what political party you're affiliated with, or what religious beliefs that you may hold. This is an issue for all humanity. Help the activists who are out there doing the work that most of us cannot fathom. Tell the Super Bowl Host Committee that they have a responsibility to protect the children who'll be trafficked to Texas for the Super Bowl by signing the petition HERE Sign another petition created by rebeccaproject which is asking backpage(dot)com to shut down their escort services section and stop running erotic ads HERE! Now please, spread the word. With just a few clicks you can help put on the pressure in Texas and beyond.

"The only thing necessary for the triumph of evil is for good men to do nothing." (Edmund Burke)

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

DNA Test for Down syndrome

2011-01-21T10:58:00.004-05:00

My dear friend Gillian has written an article about the new non-evasive DNA test that can detect Down syndrome by examining a blood sample from pregnant women.

Have a read HERE and be sure to subscribe to her posts to help build her readership.

Thanks Gillian for allowing me to be a part of your work!

A Beautiful Valentine

2011-01-20T23:43:00.004-05:00

Looking for a unique card or gift for Valentine's Day? Support Reece's Rainbow, an organization that assists orphans with Down syndrome find their adoptive families by shopping at their on-line store. What an amazing way to say I Love You!

Shop HERE

Learn more about Reece's Rainbow HERE

Farewell Sargent Shriver

2011-01-18T19:11:00.005-05:00

Today we join the Shriver family in mourning the passing of their patriarch Sargent Shriver. As a two-term AmeriCorps*VISTA, Special Olympics fan, and mother to a future Special Olympian, I and my family thank you.

If when I pass I can say that I've done even the smallest fraction of the good that you and your family have done for the world, then I will consider my life well lived.

There's quite a party going on tonight in Heaven. God bless you and your beautiful family.

For more information on his life visit www.sargentshriver.org

Guante Said it Better

2011-01-04T00:23:00.003-05:00

As others (often) say it better, I would love for everyone to take a minute to read THIS POST by Kyle "Guante" Tran Myhre who is a hip hop artist, spoken-word poet, activist, writer and educator based in Minneapolis, MN. He's been grand poetry slam champion of Minneapolis, St. Paul and Madison, and is a two-time National Poetry Slam champion (2009 and 2010, St. Paul team).

(also pasted below)

"Part of being passionate about art and culture is getting into arguments about art and culture. Sometimes lots of arguments. I’ve had my share, especially when it comes to the intersection of social justice and pop culture. What follows are eight rhetorical devices that I’ve encountered in these arguments and reasons why they’re invalid.

1. “It’s just a (movie/song/book/etc.).”
Culture informs society. To dismiss pop culture as simple escapism or background noise is naïve. No, a racist portrayal of a character on a TV show isn’t going to magically turn all the viewers into racists, but offensive images and words, over time, do make an impact on the real world, especially when those images or words correspond with institutions that systematically privilege certain people over others. Seeing and hearing this content normalizes and reinforces harmful stereotypes. Even seemingly innocuous archetypes like “the sassy Black friend” or the “wise old Asian man” become harmful because of the prevalence of the images and the lack of alternative images.

2. “You’re just being over-sensitive. Lighten up.”
When someone is offended, that emotional and intellectual response is real. It’s both rude and arrogant to simply write that off. Maybe the person really is being oversensitive, but the least you can do is take a second to try to understand where they’re coming from and debate the specific points that that person is concerned about. If someone thinks that “Avatar” co-opts and distorts indigenous struggles, and you disagree, talk about why you disagree; don’t just dismiss them.

3. “I’m also (Asian/lesbian/blind/etc.) and I wasn’t offended by that” or “I have a friend who is (Asian/lesbian/blind/etc.) and they weren’t offended by that.”
Doesn’t matter. You and/or your friend are not the absolute authority on all things (Asian/lesbian/blind/etc.). If other people are offended, that reaction is real; see point #2.

4. “At least it’s better than everything else out there.”
Doesn’t matter. The fact that you’re not Hitler doesn’t mean that you’re a good person. Additionally, the current state of pop culture is pretty damn dreadful when it comes to representation and social justice. Being a little bit better isn’t good enough.

5. “Sure it was offensive, but they didn’t mean to do it. They weren’t trying to be (racist/sexist/homophobic/etc). They just didn’t know any better.”
Doesn’t matter. The impact of words or actions is always more important than the intent behind those words or actions, at least in the context of interpersonal communication. If you accidentally offend someone, you might not be a bad person, but it does not absolve you of responsibility. Saying something stupid out of ignorance is only marginally better than saying something stupid out of malice. See point #4.

6. “They’re not saying that ALL (female/gay/Black/etc.) people are like that, just these specific ones.”
This is also known as the “but some women ARE bitches” argument. An artist cannot control how people ingest his or her art. Interpretations differ. Characters and images in pop culture are always symbols for larger communities, whether or not the creator of that culture meant it to be that way. Sure, Long Duk Dong from “16 Candles” is just one specific character. But in a movie (and corresponding cultural landscape) that has no other Asian characters, he becomes a vessel for Asian-ness and Otherness, both of which are characterized negatively. See point #5.

7. Anything involving the phrase “politically correct.”
As much as people try to characterize those who are offended as oversensitive whiners, phrases like “PC police” and “I don’t believe in political correctness” absolutely reek of whininess, like “boo hoo I actually have to think about what I’m saying and consider other people’s feelings; I’m so oppressed!” Political correctness doesn’t mean that you can’t be honest. It doesn’t mean that you can’t be offensive, if that offensive language is making a larger, important point. It just means “don’t be a jackass.” The “PC police” defense is a blanket rhetorical device that allows thoughtless people to dodge criticism. If you are going to say/do something offensive, it should serve a greater purpose, and you should take whatever criticism you have coming openly and honestly.

8. Why would you expect something better? They’re just trying to make money and most people don’t care about this stuff.
Of course this is true. But to simply internalize it is defeatism. We can fight back, make noise, start conversations, engage in boycotts, write articles, create better art, and make the connections between pop culture and society that need to be made."

A to the Men Guante!

Bring It On 2011

2010-12-31T21:00:00.003-05:00

6 pm fireworks over the Benjamin Franklin Bridge & the Delaware River

Our wish for you and for ourselves in 2011 is for health, happiness,

love, laughter, joy,

security, strength, grace, silliness,

healing, forgiveness, peace,

courage, hope, & family.

As we prepare to put the girls to bed I looked back to a post from New Year's 2 years ago. I am overcome by the love I have for my family and how much we have grown and changed. I'm a lucky girl.

The night is young and Alexander is going to try to stay up until midnight. It will be his first, if he makes it. We have Candy Land, Chutes and Ladders, Wii, snacks, pink champagne chilling for me and hot chocolate for him, and plenty of activities to keep us going as we wait for the big count down.

Happy New Year Friends. Enjoy the embedded video below. I'll see you all in 2011!

Christmas Eve

2010-12-24T00:00:00.000-05:00

Christmas Eve is here! The last chocolate will be eagerly plucked from our Advent calendar by a 5 year old boy with a twinkle in his eye. He will search for Speedy (our Elf on the Shelf) for the last time this year.

When my children grow up it is my dream that they will have fond memories of this wonderful time of the year. If images of baking cookies, making gingerbread creations, stringing lights, decorating the house, Christmas music and movies, the gathering of family, laughter and love come to mind, then I have done my job. With every ornament that we hang, each bell from Santa's sleigh, each shiny string of tinsel, new pair of Christmas Eve pajamas, and every drop of Christmas magic, I hope my family can feel the love and admiration I have for them.
Although I procrastinated, I did finally mail out our cards earlier this week. They might not arrive before Christmas, but that's ok. Thanks again to shutterfly for the blogger promotion of 50 free cards. They turned out so beautifully and I couldn't be more pleased. Thank you also to my dear friend Cecilia for taking the photos. You are amazing.

Tomorrow will be filled with last minute grocery shopping and a marathon event of wrapping presents. We will be watching Santa's progress through NORAD, setting out a plate of cookies for Santa and carrots for the reindeer, and lighting the advent candles. I am giddy with anticipation.

I wish you all a very Merry Christmas and a joyous, healthy new year!

Gingerbread love

2010-12-20T22:32:00.008-05:00

Mark's mom, dad, and brother were just here for Christmas and his cousin Greg is staying with us for a while. Despite both a respitory and intestinal flu tearing through our family like a tornado, my quest for making Christmas as magical as I can for my children will go on. When stringing together words to express the immense joy we are in the midst of seems just too darn exhausting, I suppose I'll have to let pictures and video tell the tale of our happiness.

If you can't see the video below, refresh the page or click HERE (be patient as it is loading very slow tonight)

Curve Ball

2010-12-10T18:20:00.012-05:00

Sophie had her first appointment with CHOP today (Children's Hospital of Philadelphia). They have a satellite office closer to our house than the big hospital in Philly, so we went there. The visit was to establish a relationship with her new ENT (Ear, Nose and Throat doctor). She had tubes inserted into her ears in March of 2009 and recently her pediatrician couldn't see them during an exam (no big surprise there as most docs can't). We needed to see if they were actually still there.

Like many people with Down syndrome, Sophie's ear canals are very narrow making it difficult to visualize the ear drum without a trained eye and special equipment. Dr. W took a look after clearing out a lot of wax and her tubes are still in place and look good. He surprised me by sending us off to audiology for a behavioral hearing test right there and then. During the last two auditory tests at St. Louis Children's Hospital the audiologists said her hearing appeared normal in the conversational level but showed a mild loss in the lower decibels. (in these tests the audiologist trains the child to turn to a stimulus - a light and toy that makes noise when they hear a sound. Then the audiologist just plays the sound to see if the child will turn to it for the reward of seeing the toy, etc.)

Today the tympanogram showed that the tubes were clear (a good thing) especially as she has a cold though it hasn't migrated to her ears (knock on wood). However the behavioral hearing test showed mild hearing loss in both ears (more loss in the right than the left). The loss is in the conversation range and the higher tones which is different from what the last two tests showed at St. Louis Children's Hospital. Of course, this was done through a behavior test with a little girl with few words and a developmental delay so they can't be certain about the accuracy of the level of loss without further testing.

In February we will head to Philly to CHOP for a sedated ABR to confirm or rule the loss out and to find out about each ear specifically. If the loss is confirmed, hearing aids may be the next step. However, I don't want to get ahead of myself, so I'm trying to reign my thoughts in about that until we know for certain.

My blog has been quiet lately. Writing daily in October really burned me out and I have been working through a lot of old and new personal ~stuff~. I've written posts I haven't published. It's always a trick to know what to share in such a public venue. Blogging has been my outlet and not feeling motivated to write or comfortable in sharing has been something I've been trying to work through.

A recent development is that Helena (who is 18 months old) has surpassed Sophia in vocabulary. While I knew it would happen eventually, adjusting has been...interesting. Mark and I have also both been very homesick. We are saving to buy a house, so we decided not to travel back to the midwest for the holidays. Thankfully family is coming to us. Mark's cousin Greg is staying with us for a while until his new place and job are ready in Jersey. Mark's parents are coming up in the next few days and later next week his little bother will be here. It will be a blow up air mattress slumber party and we're very excited.

So, tonight as I digest the latest curve ball that we've been thrown, I'm trying to keep it all in perspective. Hearing loss is something that we can work with. It is not completely out of left field given Sophie's DS, though it did take me by surprise. I will try and focus on being thankful for our awesome health care and doctors. I am thankful for the opportunity to catch it early, for those with DS who have come before us who have taught us to screen for things like hearing loss at such an early age, and for the amazing technology to help if her hearing loss is confirmed.

our home as taken by iPhone

an avalanche of Christmas bears (2 from 1987!)

Speedy, our hotly debated Elf on the Shelf (but that's another post)

Decorating the tree as captured by the iPhone

MY NEW SEASONAL ANTHEM!

Brian's House

2010-12-03T21:46:00.006-05:00

"The quantity of a life is a tangible. The quality of life is less distinct." (excerpt from article on Brian Tuttle's death, author unknown)

Brian's House is a residential home co-founded by David and Nancy Tuttle. It was a home for their son Brian who had a developmental disability that left him unable to speak. He did not develop past the age of a 6 month old. He could not sit up without assistance. He could not feed himself and only lived to age 19. Brian's House was a home for the Tuttle's son, but it was also a vision for a better way of life for others with developmental disabilities. In a time when people with disabilities were locked away from society, warehoused in institutions where an unfathomable existence defined their lives, the Tuttles wanted a different life for their son. Deemed unfit to be cared for at home, uneducable, unemployable, and burdens on the community and families, people with disabilities were sent away to be kept out of sight and forgotten in large institutions. The Tuttle's vision for a real home for Brian and others with disabilities was realized in 1978 when Brian's House opened its doors.

Brian's House is currently home to eleven residents with severe developmental and physical disabilities. On a gorgeous autumn, day three friends and I took a scenic drive through picturesque Pennsylvania. The foliage was at peak and the explosion of red, gold, and purple was right out of a book. We made small talk and took our time exiting the car once we arrived. We were early for our appointment to meet with Christine who has been working at Brian's House for 10 years and we were all nervous.

I'm not sure what I expected to see inside those walls. Images of institutions like Willowbrook came to mind, though I knew times had changed, at least in this country. I had never been in such a place and a knot of fear gripped my stomach. I was afraid of what I would see and smell. I was afraid to learn things about myself that I didn't want to know.

We met Christine at the back door. Although it was her day off, she was happy to make the drive and give us a tour. We entered near the kitchen where a staff member was cleaning up breakfast. I was surprised that the house smelled like syrup. I guess I was expecting a mixture of bleach and human waste. I quickly took notice of a resident who was in the kitchen. She moved around by crouching down low with bent legs and did not speak.

Christine showed us around the house and introduced us to the residents who were all in the large living room in front of a television. Some residents were in wheelchairs. Others were on sofas or chairs. We were introduced to all of the people, but there were a few that stood out for me. A young woman who used a wheelchair had her hair and makeup done. Christine later explained that it was a requirement. She liked to look good so the staff made her up every day. A young man was on the floor and later moved to the couch. He was self soothing by inserting his entire fist into his mouth. When he removed his hand I could see that his skin was chapped and his cheeks were permanently stretched out. I'm not sure, but I think our visit upset him. As Christine explained how she came to be involved in Brian's House I noticed another young woman who spent a great deal of time wandering around. To me, she looked as if she were lost or needed assistance but Christine assured us that she was fine.

As we were headed from a rec room to the bedroom areas, one of the residents began wailing. It was a long, shrill, mournful sound that hit me right in the back of my spine. In all honesty, it frightened me and I had the urge to run. As we passed through the hall we noticed a grouping of photos. Christine explained that it was their wall of angels. The pictures were of residents that had passed away and Brian Tuttle's picture was in the middle.

After our tour we met a nurse who was pleasant and cordial. Christine had only explained that we were doing the tour as a requirement for a class. However, when we told her that we all had children with developmental disabilities and that our class was to teach us to be the best possible advocates for our children, her whole demeanor changed. She explained that they resisted the label "institution." For them the residents of Brian's House are family and the house is their home.

My homework was to write about my experience and impressions of the facility. Instead when I returned home I chose to hold Sophia tight and bury it. I'm still processing what I saw that day. Yes, it felt like a home and not an institution. Yes, the staff appeared to love their residents which was very encouraging. It was really clean with fun artwork on the walls. They even have an indoor pool. However, it was my response to the people that I haven't wanted to think about. I felt so blessed to have Sophie just as she is and then immediately felt guilt for being grateful that my children are not living with such severe disabilities.

My feelings are complex and don't necessarily make sense, even to myself. Sometimes I think about returning as a volunteer. When I looked into the eyes of the residents (the ones that would allow that) I saw living souls. I saw life with value. I saw love. So my fear and level of discomfort have really rattled my cage. I realize that I still have a lot of work to do and I am so grateful to my daughter Sophia for opening up a whole new world to me.

30 Seconds for Amazon Cash!

2010-11-20T08:07:00.002-05:00

itsThoughtful.com is offering FREE $25 Amazon gift cards! All you need to do is sign up for the $500 Christmas Gift Contest on itsThoughtful.com. This literally took me 30 seconds. You will receive an email after your account has been created with a confirmation link you’ll need to click on. Now start spreading the word about their $500 Amazon gift card Christmas contest. You can share this giveaway via email, Facebook or Twitter. Refer 15 friends who sign up by December 20th and you’ll score a FREE $25 Amazon gift card!!!

Remember, sign up with the link above so you count towards my 15 referrals and be sure to click the confirmation link in your email! If you sign up, won't you please let me know?

Fine Print:
* Only referrals that sign-up between November 20, 2010 and 11:59 p.m. on December 15, 2010 will be eligible.
* All referrals must confirm their email address to be eligible.
* All winners will be notified via email on December 18, 2010 and posted on itsThoughtful.com. In addition, all gift cards will be emailed to the winners on December 18, 2010.
* Giveaway rewards (gift cards) are limited to four hundred. If more than four hundred users are eligible for the prize, itsThougthful.com will randomly draw four hundred winners. If a random drawing is required, every 15 eligible referrals will count as one entry.

FREE Thanksgiving Cards Through 11/19

2010-11-18T19:20:00.004-05:00

As if scoring a free pair of glasses today wasn't cool enough, (well I did upgrade to a thin light lens for a small fee, plus handling and insurance) I just scored another great FREEBIE and you can too!

I posted before on how bloggers can score 50 free Christmas cards through Shutterfly HERE

Through 11/19 Tiny Prints is offering FREE customizable cards for Thanksgiving and you don't have to be a blogger! Have them sent to your home for free and you can address them and send them yourself or send them directly to your recipients and pay just 44 cents (the cost of a stamp) per card! Go HERE to pick out your card. Personalize it and enter code FREETHX. I sent 10 to the immediate family which are scheduled to be delivered by 11/23. (shh, no telling, ha)!

Although there doesn't seem to be a limit in the number of cards that you can order, it is just my personal opinion that ordering 50 or 90 is just not in the spirit of the promotion and may result in orders being cancelled. That said, it is up to you to decide how many you would like.

Mark and I are both homesick as we are not able to travel back for Thanksgiving this year. Although I would not have likely sent cards for Thanksgiving otherwise, this promotion helped make home seem not so far away and for that I am very thankful.

THIS JUST IN: View an online Thanksgiving Cookbook by Martha Stewart HERE for FREE!

Get FREE Glasses 11/18

2010-11-17T19:36:00.007-05:00

Coastalcontacts.com is giving away another 10,000 FREE glasses tomorrow starting at 12:01 EST, Thursday, November 18, 2010. They did it last Friday too, and the glasses lasted until early evening. I'm really hoping to score a free pair.

I haven't had a new pair, or an eye exam since I was pregnant with Sophie 3.5 years ago. In order to increase my chances, I got an exam today (prescription and PD required), have picked out a few frames that I like, and will set up my account tonight. By tomorrow the site will be very slow, but if I'm prepared, my chances are good.

This is a facebook promotion. Go to coastalcontacts on fb and like their page to get the coupon code. Then at 12:01 EST on 11/18 place your order online. Pay shipping ($8-$15). See their page for all the frequently asked questions.

My last pair of glasses were semi rimless but this time I think I'll try for a dark plastic rim. Think "cute librarian." I have the pair below in my cart, just waiting for the promotion to start! You too can try on the frames with their virtual mirror program. Just go to Coastalcontacts.com and take a photo or upload one for yourself on their virtual mirror HERE. To anyone trying for a free pair, GOOD LUCK and let me know if you get one.

Amoxicillin and Hives

2010-11-15T20:27:00.004-05:00

I took Sophie to the doctor 11 days ago for a sinus infection. Yesterday she finished a 10 day course of amoxicillin. This is what she looks like today. The pediatrician says it is most likely an allergic reaction to the medication. Apparently her daddy and uncles reacted the same way to it as kids. Poor girl even has it on her face, legs, and scalp. Treatment for hives = benadryl and time. *edited to add that Sophie also just had her MMR vaccine 11 days ago as well.

Little Drops of Joy

2010-11-11T09:52:00.013-05:00

This has been an awesome morning thanks to my three boys. Over breakfast Alexander and I shared what we like about each other. I told him he is creative, has a great imagination, is kind, likes to learn, is fun, and he makes me proud every day. He told me he likes that I play with him especially when the girls are too busy, I make the food, help him carve his pumpkin and take him trick or treating, and I know how to get his favorite shows qued up on cable On Demand. If you ever need a warm fuzzy, I suggest you try this at home.

Then Mark serenaded me with an impromptu concert as he rapped "Same Song." That's Tupac before he got big and was in Digital Underground for those who don't know. Now THAT was a sure fire way to start my day right.

For some reason our fuzzy boy Fred the cat has insisted on crawling up and snuggling on my lap this morning. He hasn't done that in a while and I guess he just sensed that his mama would benefit from his sweet, furry, gentle love. He is so much better than a blanket on this chilly day.

Not to leave the girls out, I am so excited to share that Sophie is learning how to say "sister" which is awesome. Helena always greets me with a chorus of the sweetest "Mommy, Mommy, Mommy!" every time she sees me come in the door followed by a bear hug. Joy! I'm tucking that away for when she's 15 and just maybe will butt heads with her old mom.

Other things that make me smile are the fact that we were pretty much forced to buy new cell phones after mine bit the dust. We decided on early Christmas presents and each have an iPhone 3G. Yes, they are the old model but we were basically using tin cans and string before, so they are still very cool to us and because they are the older model they were CHEAP! My new joy is learning how to use this fandangled thing and finding fun free apps. Here are a few that I think are pretty cool. Anne Taintor (love these products) has a selection of free wallpapers for iPhones or iPods HERE. It's not an app, but is awesome all the same.

I also have been enjoying Pandora, a free personalized radio HERE that has already introduced me to new music, which I love!

Finally I have dowloaded an app I have yet to try out but am very excited about. It's a barcode scanner from ShopSavvy found HERE. You take a picture with your phone of the barcode and it checks the price of the item against other retailers locally and on-line.

People, I feel like the Jetsons and I'm loving it. If you have any favorite apps, please do share.

Finally, happy Veterans Day to the men and women who have or are currently serving in the military. From my family to yours we say THANK YOU!

The Greatest Gift

2010-11-07T19:46:00.004-05:00

The whisper that began years and years ago is getting louder.

"There's so much I could ask for, but just one thing I need. All I really want for Christmas is someone who'll be here to sing me happy birthday for the next 100 years. It's ok if they're not perfect or even if they're a little broken. That's alright, cuz so am I."

We are not in a position to adopt an orphan right now, but there are ways that we, and you can help make the difference between life and death for a beautiful child who does not have a mom or dad to tuck them in at night. We will be participating for the 3rd Christmas in a row in the Christmas Angel Tree project through Reece's Rainbow, an organization dedicated to finding forever families for orphans born with Down syndrome around the world.

The Reece's Rainbow Christmas ornaments are beautiful and make a gorgeous addition to your tree. They have become a family tradition for us. If your heart aches as mine does for the thousands of orphans, especially those with special needs, who long for a family of their own, please consider making a donation to this amazing organization by purchasing an ornament this year. click HERE

50 FREE Holiday Cards for Bloggers from Shutterfly

2010-11-01T10:24:00.013-04:00

I love (almost) everything about holiday cards. The kids and I get so excited to check the mailbox every day in December to see if we received any cards to hang on the wall. I especially love photo cards to see how much our loved ones have changed over the year. Click the Christmas Wish below to enlarge the poem we mailed with our 2008 Christmas cards to read exactly why I love holiday cards so much.

When it just really wasn't in the budget last year, I still managed to pull something together, even if it was just in electronic format. click HERE. This year I am determined to do Christmas cards. With hundreds of holiday card options at Shutterfly, click HERE for their Christmas card collection, HERE for their holiday photo cards, and HERE for their custom cards, my biggest dilemma is going to be choosing which one to use.

Although choosing a card with one large photo is appealing, I am partial to cards with multiple photos. I find myself drawn towards the more traditional or classic designs with red, black, and white coloring. I don't just look for multi-photo options and color schemes when choosing my holiday card. The message is important too. I prefer simple messages of love, joy, and peace.

Quite a few cards fit the bill at Shutterfly. I did find one that is just perfect. Our photos recently taken by my dear friend Cecilia will be perfect, especially if I use black and white photos. I love the colors, design, and the message which invokes a feeling of nostalgia. I can't wait to place my FREE order!

Then again, I just might go in a completely different direction as I really love this one too.

Are you a blogger?

Do you want 50 free holiday cards from Shutterfly? Click HERE to go to Shutterfly for information on how you can get 50 free cards this holiday season, and make sure to select Clever 1000 as the referral source.

If you have Twitter or Facebook, help us spread the word: Hello Bloggers! Receive 50 free holiday cards from Shutterfly http://bit.ly/sfly2010

Mega Halloween Post

2010-10-31T12:07:00.011-04:00

These first three pirate pictures were taken by my talented friend Cecilia when we did our fall photo shoot.

The sky was amazing this night. This is actually our house. For real this time (click HERE to see the house I tried to claim, ha!)

Alexander and I decided to make haunted houses out of milk cartons. I admit, I still love to play with scissors and glue, just like I did as a kid. We used supplies I had on hand, including; aluminum foil, black-and-white scrapbook paper, ribbons, halloween stickers, etc. I bought a few extra battery operated tea light candles to light them from within.

embedded video below

Make photo slide shows at www.OneTrueMedia.com

If you are having trouble viewing the video, refresh the page or click HERE
On Saturday Alexander's whole class was invited to Max's house for a birthday party. Costumes were required. It was a wonderful party.

Last night we carved our pumpkins. We have kept them indoors so far because the squirrels are relentless. I carved a more traditional face with a bat for the mouth. Mark carved Milo from the band the Descendents (see his t-shirt), and Alexander special ordered Thomas the Tank Engine. The girls colored pictures and The Great Pumpkin Charlie Brown kept them entertained, as did the candy. The girls have discovered lolly pops and Helena even bit through a wrapper to get to a Butterfinger. Alexander, Mark, and I were up until midnight finishing up Thomas and taking pictures, but it was well worth it.

embedded video below

Make photo slide shows at www.OneTrueMedia.com

if you are having trouble viewing the video, refresh the page or click HERE

Happy Halloween Everybody!

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Going for a Walk

2010-10-30T23:59:00.006-04:00

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Alexander the Friendly Ghost

2010-10-29T17:25:00.006-04:00

He decided to be a ghost for his school party and parade, so we went shopping for material.

We used two different gauzy materials and four separate layers. Since I knew he wouldn't tolerate material on his head for more than 30 seconds, we made a hole for his head.

I cut holes for his arms, rolled the holes under and used fabric glue to keep it from fraying.

I painted his hair white outside and had him wear a garbage bag to keep his clothes clean.

I painted his face and neck glow-in-the-dark white. There was black paint for his eyes, but Alexander vetoed that.

Add the gloves and he was set!

Spooky!

BOO!!!

The girls and I went up to Alexander's school to watch the Halloween Parade.

embedded video below

Photo and video editing at www.OneTrueMedia.com

If you are having trouble watching the video, click HERE.

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Violence Against Women and People with Disabilities

2010-10-28T17:41:00.005-04:00

October is Domestic Violence Awareness Month. Taken from the National Coalition Against Domestic Violence (NCADV) here are a few facts.

"Women with developmental disabilities have among the highest rates of physical, sexual, and emotional violence perpetrated by intimate partners and family members. Individuals with disabilities are at a greater risk of severe physical and sexual violence than people without disabilities. Many people with disabilities who are victims of violence experience multiple assaults. Domestic abuse victims with disabilities are often more dependent on their caretakers than victims without disabilities, and face many barriers to reporting abuse and seeking services. Victims who do report abuse or seek services often do not find adequate help, since many programs that serve Domestic Violence victims are not equipped or trained to offer proper care to victims with disabilities." Women with disabilities are three times more likely to be sexually assaulted than women without disabilities.

President Obama and Vice President Biden spoke about the unprecedented efforts across the Federal Government to protect victims of domestic and sexual violence in an event marking Domestic Violence Awareness Month. This is definitely worth viewing in its entirety, regardless of your political affiliation.

"When a victim of abuse leaves a violent relationship it is often a particularly vulnerable time. We need to make sure that we are doing everything that we can for victims in this critical period to ensure that folks who are seeking help and protection get that help and get that protection. That's our responsibility. So these are just a few of the steps that we are taking but this bottom line is this; nobody in America should live in fear because they are unsafe in their own home. No adult, no child. No one who is a victim of abuse should ever feel that they have no way to get out. We need to make sure that every victim of domestic violence knows that they are not alone, that there are resources available to them in their moment of greatest need. As a society we need to make sure that if a victim of abuse reaches out for help, we are there to lend a hand. This is not just the job for government. It's a job for all of us." (President Obama)

And now, more information to think (or puke) about...

•Studies estimate that 80% of women with disabilities have been sexually assaulted.
•One study showed that 47% of sexually abused women with disabilities reported assaults on more than ten occasions.
•Children with disabilities are more than twice as likely as children without disabilities to be physically abused, and almost twice as likely to be sexually abused.
•Studies estimate that between 70% and 85% of cases of abuse against adults with disabilities go unreported.
•One study found that only 5% of reported crimes against people with disabilities were prosecuted, compared to 70% for serious crimes committed against people with no disabilities.
Taken from the National Coalition Against Domestic Violence (NCADV)

All you need to do is spend a few minutes at the International Coalition on Abuse and Disability (icad) to see just how prevalent this is.

For more information or to get help, please contact:
The National Domestic Violence Hotline at 1-800-799-SAFE
The National Sexual Assault Hotline at 1-800-656-HOPE

Our Haunted Yard

2010-10-27T23:03:00.008-04:00

We went all out in decorating for Halloween this year. Every day for weeks we added to the front yard. The end result is pretty amazing, doncha think?

This is obviously not our home, but is on Mark's route to work. My point and shoot camera really doesn't do this justice, especially the night shots. This is a family that embraces Halloween and I totally dig it. (click the pictures to enlarge)

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Our Own Monster Mash

2010-10-26T16:22:00.006-04:00

Our Own Monster Mash video embedded below

Having trouble seeing the video? click HERE and no I don't have a clue as to why Helena's head is so small, ha!

HAPPY HALLOWEEN EVERYBODY!

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Fall Photo Shoot, Pt. 1

2010-10-25T22:33:00.004-04:00

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Pinocchio Cell

2010-10-24T22:30:00.007-04:00

Mark found the Pinocchio film cell that I wrote about yesterday that we found in the garbage!

This is the back with a note from the previous owner.

This says:

This is an original painting on celluloid, actually used in the Walt Disney Production of PINOCCHIO.

It is one of a select few that have been releasd to art collectors. The remainder have been destroyed.

For each slight movement in the action of a character in a Walt Disney animated picture, a celluloid painting must be made. These celluloid paintings are then photographed in succession over master backgrounds producing, on the motion picture film, numerous pictures, each with its minute change in movement. These, when projected on the screen in rapid succession, create the illusion of movement.

Celluloid paintings are the final step in the creation of a Walt Disney animated picture. They are preceded by story sketches wherein the artists express their first creative ideas, by the animation drawings which give life and movement to the characters.

Walt Disney originals are included in many important Museums and Private collections. Notable among these are: The Metropolitan Museum of Art, New York; Museum of Modern Art, New York; Cleveland Museum of Art; Toledo Museum of Art; William Rockhill Nelson Gallery, Kansas City, Mo.; Phillips Memorial Gallery, Washington, D.C.; San Francisco Museum of Art; Honolulu Academy of Arts; etc.

COURVOISIER GALLERIES 133 GEARY ST., SAN FRANCISCO, CALIF.

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I'm a Picker

2010-10-23T07:35:00.015-04:00

Once upon a time in a land far away when we had spare time and no kids, Mark and I used to frequent the thrift stores and antique malls. We loved to thumb through old vinyl and all manner of other treasures. Much of the time we left empty handed but when we found that certain something that was priced just right, oh baby it was like winning the lottery.

We have been known to do more than shop at actual stores or garage sales. Mark and I have found the most unbelievable prizes in the garbage. Yep, I said tossed out, thrown away, on the curb garbage. We don't drive around looking for stuff on curbs and we have not done any dumpster diving, but we have taken home other peoples trash. "Ew Gross" you say?!

We don't do it often. In fact it was a decade ago that we had our last big score. Mark and I were living in an apartment building that had a thousand units in Washington D.C. The garbage area was huge to handle so many people. It was also near one of the laundry rooms. On a day that I had stayed home from work to do the wash (playing hookie) we saw a seriously grody (did I just say grody?) but intriguing secretary desk next to the dumpsters. It was covered in a layer of muck and full of junk, including a few old roach carcass shells. We discussed it and agreed to bring it upstairs.

I began cleaning this nasty desk which although it was filthy, it was easy to clean. As I was going through the desk I found old stamps and a letter from the 1940s. I also began cleaning off a small framed picture of a cat and goldfish. It too was so dirty that at first you could barely make out the picture. Once I had it cleaned up I started yelling for Mark to come and see what we had nearly left behind in the garbage. According to the information attached to the back, it was an original film cell from Pinnochio framed by the Courvoisier Gallery (I can't remember what year). The cell of Cleo (the fish) has slipped out of place but the cells themselves are just fine. We aren't sure how much it is worth today but we're guessing a pretty penny. It is still packed away somewhere so I'll post a picture when I can.

The desk was not done revealing its treasures. I found a small jewelry box which contained a silver pill box with Orient design and enamel trees and back ground, a silver broach, a string of pearls (which turned out to be costume pearls), and all number of other pins. We had two pieces appraised, including a carved ivory rose broach which appraised at $350. The pill box appraised at $175.

The greatest treasure, as it turns out, was the desk itself. After cleaning and polishing its dark walnut wood and clawed feet, and brass handles I give you the desk we found next to the dumpster.

a view from our porch

So why this story after a decade has passed? It happened again. Our street has been closed for the past week as they dig it up to replace a water main, so I had to wind my way around nearby streets to find parking. I ended up taking a wrong/right turn onto a cul du sac. At first I was irritated with myself, until I saw it. At the curb was a gorgeous buffet server.

I pulled up to it and got out to take a look. It was in front of a house that had a for sale sign/sold in the yard. I called my mother in law and we agreed that I needed to take it home. Thank goodness for the CRoutan and the stow and go seats. I moved the car seats out of the way and knew I had plenty of room. The owner came out and asked if I needed a hand, to which I said yes as this is a heavy piece. She was surprised that it had sat there for 3 days. They were moving and she didn't want to deal with getting the hinge repaired on the right side door as her husband isn't "handy." It looks antique but she had purchased it new from a furniture store 3-4 years ago for $700. Aside from needing a new screw there are 2 small pen marks. That's it. That's all that is wrong with it. For probably 15 cents and a turn of a screw driver I can fix it myself. If it turns out to be more complicated, Mark's dad works in a cabinet factory and has said he could fix it quite easily when they come out in December for a visit or he can mail us the right piece.

so you have a better idea of the size

So, because putting my valuable breakables in this server would be like letting 2 bulls loose in a china shop, I have to use it for something else until the girls get older. I've decided to make it the worlds fanciest toy cabinet. Not too bad for picking it off the curb.

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The Specials - UK

2010-10-22T08:20:00.005-04:00

Have you seen the awesome reality show based in the UK called the Specials? I do not exaggerate when I say you'll laugh, you'll cry you'll be hooked from Episode 1.

from the website

"Carol and Dafydd are Hilly's parents. Hilly always said that she wanted to live with her friends in a house in Brighton. They saw no reason why this shouldn't be possible and so they found a house while Hilly invited her closest friends to move in with her.

Carol & Dafydd's aim is to make sure that Hilly, Sam, Megan, Lucy and Lewis have complete freedom to run their lives the way they want to. So from finding a job to going to college, or going on a date to clubbing until 3am, Hilly's parents and their group of dedicated support workers are on hand to give The Specials all the help they need.

There are 9 regular support workers who, in rotation, provide 24 hour care and support to the housemates. The housemates need help with some of the day‑to‑day activities mainstream people take for granted such as money management, travelling around town or cooking themselves a meal, however they are encouraged to learn to do these things for themselves.

All the staff have been carefully chosen by both Carol and Dafydd and the housemates who were also looking for people they like and can have some fun with!"

To watch the episodes click HERE

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Dream Analysis, a Doozie

2010-10-21T12:53:00.007-04:00

I've always been a vivid dreamer. I don't mean daydreams (I do that too). I mean very detailed, complicated dreams in color. I used to be a sleep walker and talker too. My mom would lead me back to bed and tell me the next day about the bizarro conversations we had that I had no recollection of.

I've read a few dream analysis books and find it amusing to try and analyze my own and sometimes close friend's dreams. Some are clearly anxiety or complete nonsense themes but if I think about the content, they have bits and pieces of what I had read, seen, or discussed in recent days. When I dream about my teeth falling out (which happens every so often) I've read that it is a vanity dream. They usually happen when I've started (another) diet, or need to.

The rarest of dreams are the ones that feel completely real. Often they involve a loved one that has died. We have wonderful conversations or just visit without needing spoken words to communicate. Other times these real dreams seem to be more like premonitions (impending death of a loved one, etc.). I don't have these real feeling dreams very often. When I do they usually wake me up shaken or happy, depending on the content. I try and write the details down right away before they slip out of my consciousness.

So, I invite you dream analyzers help me with this doozie I had last night. Mark made an appearance just at the beginning where we returned to an apartment we had left behind (where?, I don't know as it isn't a real place). We had left it fully furnished and full of our nic-nacs and pictures. In the dream I knew them to be mine but none of them are real things that we actually have. It was sort of like being on a different plane of reality. Mark vanished and I found myself in the company of two young men (mid 20s I'd guess). I think one's name was Gary. They talked with me without actually saying words out loud.

The room began to resemble my grandparents home and I learned that I was in the Waiting Place and the two men were my guides. They told me I had died. I had not yet fully crossed over, hence being in the Waiting Place. (wherever that came from I surely don't know). I was alarmed at the news that I was dead and began hoping and shouting to wake up if this were a dream. I did not wake up and my guides calmly and soundlessly restated that I was dead.

I flashed to snap shots of my family and an image of Sophie in particular and became panicked and angry. Yelling that I didn't want to be here and demanding to know how I had died, my guides remained calm. They answered only that it was time to meet God. Was I ready? "Oh heck no, not yet," I said and I shouted even more. "Send me back, send me back! I'm going to miss everything!" Over and over I shouted, they remained calm, and eventually (after an eternity) I woke up.

I have no lingering message of "you better start doing ___ or stop doing ___." Nothing. Just being shaken at the intensity of this very, very real feeling dream.

So, have at it. What the heck was that about?

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Pumpkin Bread

2010-10-20T07:00:00.004-04:00

Oh, my first attempt at making pumpkin bread (shakes head). Sometimes I have an all consuming need to create, to make something. Sometimes it is a crafty project or photography. Othertimes it is a recipe. Some turn out better than others but the idea is to try and have fun doing it.

I'm not a real baker, so any excuse to use my sifter gives me the giggles. I get to pretend that I'm a mom-who-bakes and that makes me feel good.

My recipe, found HERE called for 2 pans, but my batter fit into 3. I worried that the temperature seemed low so I consulted my pals on fb. When the timer dinged, I did the following; see if the top is wet, check if it is springy, test with a toothpick (repeat every few minutes). Thankfully my girl Maureen and baby Samuel understood that this was a great excuse for us to stop cleaning and doing laundry and they headed over for a taste test.

After just over an hour I pulled them out. They looked amazing. I didn't wait for them to cool before lopping off a chunk and adding a pat of butter that melted on contact with this pumpkin, cinnamon, nutmeg yumminess.

Unfortunately the temp was too low or I didn't leave them in long enough. As they cooled 2 of 3 loaves fell in the middle revealing a gooey delicious layer. Some might consider this a failed experiment, but then you didn't taste this little bit of autumn heaven. (I won't tell you that we ate almost a whole loaf while watching a chick flick and doing nothing more than laying around the living room, ahem!)

Next time I'm adding walnuts. Wait. Did you hear that? The pumpkin bread is calling my name!

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Walking with My Buddies

2010-10-19T16:26:00.008-04:00

So, ya. I've had a slide show of our Buddy Walk(s) this year ready for a while now. (what is a Buddy Walk? click HERE) I've been putting off posting it until I had time to write about it. Frankly, 31 for 21 is exhausting and so for today I'm just posting the basic details.

We had our Buddy Walk at Mark's university on October 3rd. It was huge and lovely. I was supposed to help with raffles and even went to a few meetings but they let me off the hook, just for this year. What's that? Freedom to just BE at a Buddy Walk!? Best.gift.ever.

Team Sophie arrived in our gear and I swore I wasn't going to cry this year. However, when they have a football team lining the entrance cheering "Go Team Sophie" I challenge you not to shed a tear. Throughout the walk they had teams of cheerleaders and volunteers cheering us on and it was really, really touching. The most touching part, however, was having our new friends Maureen, Ras, and baby Samuel represent Team Sophie. Having them there, especially as we didn't have family here this year was perfect.

Then the next week Sophie and I walked with our new friends Grace and her mom Ann in a neighboring county's Buddy Walk. I had gone to a parent's social when we first moved out here and was pleasantly surprised at how many cool people I already knew. I even got to meet a woman in person from the T21 Club in Philly that I had only spoke with on the phone prior to moving out here.

Both were gorgeous fall days. Both had me in tears multiple times. Make no mistake. They were happy tears and if I had to describe the Buddy Walk experience in just one word, I would have to say "community." It is a place to celebrate our families with loved ones who have Down syndrome in a place where acceptance and inclusion are the rule.

Not everybody on their acceptance journey was ready for a Buddy Walk this year. I have certainly come a long way from our first Buddy Walk, read HERE If you are a parent to a child with Ds and you're not ready to go, be kind to yourself and let it go. Love your child. That's more than enough.

embedded video below

Make an on-line slide show at www.OneTrueMedia.com

if you don't see the video, refresh the page or click HERE

Jeez, guess I had more to ramble on about than I thought, ha!

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The Beginning, Part 5

2010-10-18T09:54:00.001-04:00

continued from HERE. If you are new, DO NOT start with this post. Go back to the beginning of the Beginning, please. Click HERE.

On my acceptance journey I danced briefly with Denial (which didn't last long because we had an amnio). Anger (oh I was good at that). Bargaining (not so much because I wasn't on speaking terms with God). Depression moved in and made itself quite comfortable. Depression was the roommate that lived on my couch and didn't pay rent but ate all of my food and left hair in my sink.

In the beginning it felt that my heart was literally cracked with all the losses and limits I had put on my unborn daughter. I was unable to separate my thoughts of Sophie from her disability. I focused on the future and what she wouldn't be able to do. My pain was largely self-centered as I believed that I had to let go of my dreams of teaching her how to ride a bike or taking her to ballet class. There would be no school dances or overhearing her giggle with girlfriends about her first kiss. I would not get to stroke her hair and tell her how beautiful she looked on her wedding day. I would not have grand babies to snuggle with all because of those two words, Down syndrome. (oh how wrong I was about so many, many things)

You cannot imagine the guilt that I felt for not being able to protect Sophie from her disability and duodenal atresia and for actually causing all of this. Surely it was my fault because of some awful thing I may have done in my past or partying too much in my earlier years. enter EGO Despite all the literature telling me that this is not true, nothing could convince me of it. Click HERE for more information on causes of Ds. She hadn't even been born yet and in my mind I had utterly and completely failed her. In a nod to Mr. Burns (the Simpsons) I call this period, wallowing in my own crapulence.

I have heard of others who spend very little time at all grieving when they learn of their child's diagnosis, whether prenatally or after the baby is born. All of us have our own acceptance journeys and it is not for me to question those who say that they had one night/week/month of tears and then moved on. I've worked long and hard not to let other's journeys make me feel even more guilt for my own long and painful path towards acceptance. If you had asked me before having Sophia if I thought I was a good person, I would have answered yes, and I was. It came to a surprise to me when I grieved so deeply.

I remember when I was hoping to have a baby and then later when I was pregnant I began to see bulging bellies everywhere. Certainly, I thought, there had not been this many pregnant women around me before this. Of course they had always been there. It was just that my eyes had been opened to them. The same thing happened with people with Down syndrome. Never in my whole life had I seen so many people with Ds as I did after we received Sophie's prenatal diagnosis (up until then at least).

I recall picking up lunch and noticing a young woman with Ds behind the counter who had a Job Coach with her. Not wanting to stare but having a deep need to study her almond shaped eyes as a way to form a connection to my daughter, I stole as many glances as I could without making a scene. My heart wanted to ask her if she had a happy life, if she liked her job, if she had friends. Each time I saw someone with Ds I wanted to drink them in. I wanted to see their hands and trace the transverse palmar crease called the simian line. This is the singular line across the palm that many people with Ds have on either one or both hands.

I had not yet laid eyes on my daughter but she was already opening up a whole new world to me. Stitch by stitch my tiny teacher was mending my heart. She was healing me and I didn't even know I was broken.

to be continued...

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Reader Giveaway Winner!

2010-10-17T19:30:00.002-04:00

In typical Sophie fashion, drawing a winner's name out of a hat was done with her own style and flare. Hey, it's not the lottery and I think she did great, plus it was entertaining. We had one entry for each question that you all answered by either leaving a comment or emailing your answers. Thank you all so much for being here, for reading, for taking the time out of your busy day to leave a comment to let me know you're here.

Congratulations to our winner! I will get to the Post Office and send your prize to you this week.

embedded video below

Make video montages at www.OneTrueMedia.com

if you don't see the video, refresh the page or click HERE.

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Temple University Training, Day 1

2010-10-16T00:01:00.002-04:00

Friday was my first full day at the Temple University - Institute on Disabilities - Competence and Confidence Partners in Policymaking for Families with Children in Early Intervention program (birth - preschool), otherwise called C2P2 - EI. As I am completely wiped out and need to be back bright and early for the next full day, I will share very quickly some of the information that I learned today.

The term basketcase that many of us use frequently (myself included) to describe ourselves or others who have literally or figuratively had a mental breakdown originated in WWI. Soldiers who came home with no arms or legs were placed in baskets in order to be mobile. I will never use that phrase again.

I learned that I will probably spend some time perusing the NEC TAC website (National Early Childhood Technical Assistance Center HERE and the Office of Special Education Programs HERE

We learned about the history of the Independent Living movement and the Parents movement to fight for the rights of our children with disabilities. You can watch the video that we saw on the history of disability in the US HERE (and you should). You will need to download a free RealPlayer and then click the Modules 1-4 to see the videos.

We learned about disability right's leader Judy Heumann (my new hero) who said,

"When I speak out about the oppression of people with disabilities, some professionals will ask, 'Is she bitter about being handicapped?' The answer is yes, "I am bitter about being handicapped, but not about having a disability for it is not my disability that handicaps me. It is society that handicaps me and my brothers and sisters, handicaps us by building inaccessible schools, theaters, buses, houses, and the list goes on. All this helps keep us in our place."

I added the books Angel Unaware by Dale Evans Rogers (married to Roy Rogers, they had a daughter with Ds) and The Child Who Never Grew by Pearl S. Buck to my list of must reads.

Weird trivia knowledge of the day: During an activity where we shared something about our family I learned that people can and do cook turkeys in a trash can. Don't believe me? I think I may have to try this, just to say I did.

Love this quote: "There is one thing stronger than all the armies in the world, and that is an idea whose time has come." ~Voltaire

Day 2 looks like it will be a big day and I promise to post about it soon.

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REMINDER: Reader Giveaway Ends Today

2010-10-15T09:22:00.004-04:00

Have you entered the Reader Giveaway? Deadline is today at 6pm EST. Sophie will draw the winner's name out of a hat this weekend.

Click HERE

Are You Ready for Some Football

2010-10-15T00:01:00.003-04:00

On a beautiful fall evening (September 25th) we took the family to Mark's university's football game. Although it was a college game (they are thinking of going Big East) it had the feel of a Friday night high school game and suddenly I was back in my cheerleading uniform at Sloan Wallace. stop laughing

The last time we went to a college football game it was just the three of us and it was Homecoming at the University of WI-Madison. Alexander was just a tot in a sea of red.

Sure, we tailgated at the U of IL with the Duffs, but we didn't actually go in. Our house was so close to the stadium that we often took a tv on our back deck and could hear the roar of the crowd from the comfort of home. *Mark reminded me that we did go to a U of IL game in 2007, but I guess I had forgotten.

I'd like to tell you that all three kids were well behaved and that we stayed for the whole game. The truth was that Alexander and Helena weren't as excited to be there as Mark and I were. Sophie was thrilled to be outside and with her family. The girls were a big hit in their school gear and bows I had made that day (feeling all Martha Stewartish).

Despite the many meltdowns by our youngest (the schmoog), popcorn and the Wildcat kept us at the game until the 4th quarter. We can't really blame them as it was after their bed times. Next time we'll get a sitter but we may just bring Soph along.

Photo and video editing at www.OneTrueMedia.com

you needed proof of my high school days did ya?

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Down syndrome Growth Charts, New Study

2010-10-14T09:28:00.011-04:00

Unless you're a member of the T21 club I bet you didn't know that there are growth charts specifically for children with Down syndrome. When Sophie goes to the doctor we learn her percentile of head circumference, height, and weight on the typical developing growth charts. We also learn how she is doing on the Ds charts which helps us have a better picture of her health. Sophie is participating in a new study by researchers at Children's Hospital of Philadelphia (CHOP) called the Down Syndrome Growing Up Study. If you have a child with Down syndrome between the ages birth to 20 and live in Southeastern PA, New Jersey, or Delaware, your child may be able to participate which will benefit all of our friends with Ds. How cool is that?

full article HERE

"Parents and doctors have known for a long time that children with Down syndrome tend to grow more slowly and are considerably shorter than most other children. But pediatricians needing to record growth milestones at regular office visits have an outdated set of growth charts based on data collected more than 25 years ago. Since that time, there have been major advances in the medical care of children with Down syndrome. In addition, the demographics of the general U.S. population have changed, and children are taller, but also more overweight.

Now researchers at The Children's Hospital of Philadelphia will be measuring children with Down syndrome from birth to age 21 to develop updated growth charts. A four-year, $1.2 million grant from the Centers for Disease Control and Prevention (CDC) is supporting this effort, which brings together experts from the Hospital in growth and nutrition, Down syndrome (also called trisomy 21), and general pediatrics.

The past 20 years have seen significant improvements in the care of children with Down syndrome, accompanied by longer life expectancy," said the grant's principal investigator, Babette S. Zemel, PhD, director of the Nutrition and Growth Laboratory at The Children's Hospital of Philadelphia. "We believe that children with Down syndrome are growing better now than they were 20 years ago. We also want to look at how they are growing throughout childhood, from infancy to young adulthood, at how body mass index changes across time, and how that relates to body fat composition.

"If we can better understand the growth patterns and the rates of other illnesses that co-occur with Down syndrome, researchers may be better able to plan treatment and design preventive health programs," added Zemel. "The CDC has recognized updated growth charts as an important tool for people providing healthcare to children with Down syndrome." In its grant guidelines, the CDC states that new growth charts produced from the study will be broadly distributed free of charge."

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Mostly Wordless Wednesday

2010-10-13T15:09:00.009-04:00

Mark & Alexander in the CRoutan vs. deer, October 12, 2010
They were fine. Deer ran off and left this behind:

Driver's door won't open. Getting fixed next week. Mark posted this on fb

Jokes.com

Ron White - Deer Hunting

comedians.comedycentral.com

The Creed of Babies with Down syndrome (video)

2010-10-12T13:13:00.008-04:00

*edited to note that I was searching for an image with the title of the Creed as I have seen them on bookmarks and magnets. Instead I found the picture above. Something about the little girl's face really stayed with me. Though I do not believe that people with Down syndrome are angels (believe me Sophie has a full range of emotions just as we all do), there are lessons that she has taught me about love, patience, kindness, and acceptance that I do believe are divine.

Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
that judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
so special and few
That came here to learn
The same lessons as you
That love is acceptance
it must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

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Grover Spoofs Old Spice

2010-10-11T22:46:00.005-04:00

Things have been so heavy in the telling of the Beginning that I need to lighten it up in here. Enjoy!

(thanks for sticking around my friends and for lifting me up as I write it out)

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The Beginning, Part 4

2010-10-10T00:01:00.003-04:00

continued from HERE If you are new, DO NOT start with this post. Go back to the beginning of the Beginning, please. Click HERE.

Continuing the pregnancy with a prenatal diagnosis of Down syndrome was our choice and one we never wavered from. However, it would be a mistake to think that we had it all figured out. The truth is Mark and I went through the darkest days of our lives as we grappled with our new reality.

It was early Spring and finally warm enough to sit on a bench outside on State Street. I had met a friend for lunch who was telling me about shopping with her daughter for her first prom dress. As another wave of despair crashed over me I doubted that I would ever do the same with Sophia. Then in a fit of supreme arrogance I proclaimed that I did not want to be a champion for people with disabilities. I knew myself well enough to understand that accepting my daughter's disability would mean I would become an advocate for her and the whole community. It was a job I had not signed up for and did not want any part of. (disgusting, I know).

I want to take my selfish, ignorant self from 3 years ago, hold her tightly and whisper, "There is so much you don't know, so much you are wrong about. These labor pains of grief are giving birth to new souls; your own soul expanded and stretched, your daughter's brand new perfect soul, and countless kindred spirits whose souls will evolve through our story. You will be humbled and honored to be accepted into your new community. There will be more times of sadness but they will be tiny in comparison to the joy. It's going to be amazing. Just hold on!"

Elisabeth Kübler-Ross identified 5 stages of grief. For anyone who has experienced loss you know that they are not really stages that you move through and check off on some kind of twisted check list with a certificate of completion at the end. "Congratulations. You are now healed." Denial, Anger, Bargaining, Depression, Acceptance. We move from one to the other, staying longer with some than others. Receiving an unexpected diagnosis such as Ds or other difference, whether prenatally or after the birth of a child, will send parents off on their individual path of grief. Grieving the loss of the child you thought you were having is real. Since the destination is Acceptance, I prefer to call this the acceptance journey.

As difficult as it was for us to adjust to the news, it was also quite hard for others to know how to respond or what to say. I didn't give anyone a chance to get it right at first. In the beginning I had planted my feet firmly in Anger. I heard from many that God only gives children like Sophia to special parents. Just one month before getting our news I said those very same words to my dear friend Neda when I learned that her daughter Arianna had been diagnosed with cerebral palsy. Each time someone said it to me I wanted to drop kick them and myself. So I guess you're not very special then. Really God? Thanks, but no thanks. Turn your attention elsewhere, mmmk? Again, I'm sorry Neda.

Sign me up for prayer chains? Pray that the amnio test was wrong? Remind me that I still had a week to terminate in the state of WI? Demand that I not ever consider such an option? Tell me that everything would be ok? Tell me about your cousin/brother/neighbor's similar experience? Gently suggest I should calm down as it wasn't as bad as I was making it out to be? All were the wrong things to say! Of course not all were wrong. It was my circumstance that was wrong and it was my Anger lashing out to anyone who dared come near me.

click HERE for an excellent list compiled by my friend Gillian of 10 things to avoid saying to new parents of a child with Ds & while you're there subscribe to her posts so she can build her readership & be compensated, please!

So what CAN friends and family members do? STAY! Don't be scared off by the diagnosis or by our awful behavior. Stay because I promise that you too will come through this a better person. *However if you recognize that you cannot agree with our decisions it is better to step aside rather than push your agenda. Listen as we express our fears, sadness, rage. Cry with us. Ask us what we need rather than give the blanket offer of "if there is anything I can do...?" We might appreciate a meal or gift card to our favorite restaurant (check first). Sit next to us and watch our favorite movie while consuming a bucket of buttered popcorn. Offer to watch our kids so that we can go out with our partner or take a nap. Do your own research on Ds (or other diagnosis) so that you can be informed. When my best friend Darcy subscribed to a national Ds organization it showed me how much she cared and was in it for the long haul. If you find a great website/book/blog, offer it to us but do not expect us to read it right away. We might stash it away (or chuck it out the window) until we are ready. Congratulate us on our baby and make a fuss over them just as you would if there wasn't a diagnosis. Keep telling us about your everyday life. We need to be reminded that life is still happening around us and your silly little issues are a much needed distraction. Humor. Help us laugh again. Be patient. You can't fix this and we may take longer to heal or do things that you don't agree with. Forgive our behavior even when we cannot forgive ourselves and just stay.

continued HERE

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Reader Giveaway

2010-10-09T00:01:00.006-04:00

Dear Readers of ReJenerationS,

The readers of this blog have been a source of inspiration and hope to me. This blog has opened up a whole world of people that I would never have known. You support me and my family EVERY SINGLE DAY by simply being here and we love you for it. Some of you have been here since this little family blog began, others have just found us. You send us encouragement when we need it, laugh with us, cry with us, send us advice, and are with us on every adventure. I'm so glad you're here.

In YOUR honor I've decided to do my first blog giveaway. That's right. Free stuff just for being here!

What is it!? One lucky reader will receive a Fall Flavor Duo of artisan roasted coffee. That's a nicely sized package of Tropical Tricks & Treats, (more of a treat than a trick, chocolate toffee crunch & a hint of creamy caramel make this coffee an irresistible holiday indulgence), & a package of Pumpkin Paradise (pumpkin spice and everything nice! Coffee with the sweet, enticing flavor of a heartfelt holiday favorite - pumpkin pie)! These whole roasted beans are from Boca Java. Not a coffee (or flavored coffee) drinker? This would make a nice gift for a friend, teacher, co-worker, etc. As a coffee drinker myself, I promise you I would love this as a gift.

This giveaway will remain open until 6pm EST on Friday, October 15th. I will have Sophie draw the lucky winner's name out of a hat and will ship it to your door - FREE! But you live in Scotland, New Zealand, Zimbabwe, or Arkansas! As long as you live on the planet Earth, I'll ship it to you as my way of saying thank you for being here.

How to enter? Dear Readers, I'm not interested in making you work, but I am so very curious as to who you are. Who are you people?! Although I have a stat meter, it gives limited information as to who visit this little family blog. Unless you leave me a comment here or on facebook, I have no idea that you're reading. This is your chance to let me know that you're here. I know we are all busy, some assume that I know that they're reading - I'm looking at YOU, or have never commented for whatever reason. I ask you as a favor, from you to me, just this once leave a comment.

MULTIPLE WAYS TO ENTER

1. LEAVE A COMMENT:
But you don't know how? It's really easy. Scroll to the bottom of this post and click Post a Comment. A box will open for you to type your comment. Then Choose an Identity, pick one that fits you OR click anonymous. If you chose anonymous you must leave your name in the body of your comment. Type in the word verification (this helps keep spam off the blog), Click Publish Your Comment. That's it! Really it is that easy to let me know you're here.

2. BONUS ENTRIES:

I really want to know who you are, but I'm not going to force it. However, if you are willing to let me know who you are, you will get a bonus entry for EACH question you answer. Leave your answers in your comment OR email them to ReJenerationS@gmail.com

1. Are we related? (includes by marriage, no is an answer)

2. How long have you been a Reader of ReJenerations? (be honest, longevity will not give you an extra entry)

3. Do you identify as male or female?

4. What is your age?

5. What time zone do you live in? (earn another entry by listing your city)

6. How did you find ReJenerationS? (your answer might be through facebook, downsyn.com, Unringing the Bell's 31 for 21 challenge, another blog - but please list which blog, search engine, or other - JUST TELL ME)!

7. Have we met in real life? (no is an answer)

8. How do you know me? (your answer might be that we went to school together - which one(s), worked together, special needs community, never met, just let me know)

9. What do you enjoy the most about ReJenerationS?

10. What do you enjoy the least about ReJenerationS?

11. What is your connection to Down syndrome or the special needs community at-large? (your answer might be that you have a disability, you are a parent to a child with a disability, sibling or friend to someone with a disability, work with people with a disability, or just that you are a kind human being that cares)

12. What recommendations or questions do you have for future posts on ReJenerationS?

13. Have you taken the pledge to eliminate the R-Word (retard/retarded) from your language as slang or insult as a way to promote respect, inclusion, and acceptance for people with intellectual or developmental disabilities? (yes is an answer, if no - please visit www.r-word.org to pledge today & then come back and let me know)

Lastly, even if you don't want the giveaway prize, just leave me a comment to say that you're here. I will greatly appreciate it. If you are entering, please make sure to let me know how to get a hold of you and check back to see the winner.

Good luck!

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1 in 4, an Epidemic in Plain Sight

2010-10-07T22:42:00.011-04:00

October is Domestic Violence Awareness Month (DVAM) & I am just as passionate about this as I am about advocating for our loved ones with disabilities.

Last night I just happened upon the most amazing documentary called Telling Amy's Story of Amy Homan McGee who was murdered by her husband on November 8, 2001 after years of enduring domestic violence (DV). It is airing on Public Television throughout the month of October. see schedule HERE. If you don't see your channel, find out how to get it on your public television channel HERE. If you get the chance, it is worth your time to watch the documentary in full and not just the clip below.

I want to quote the Detective Deirdri Fishel who tells the story, except that there are too many amazing quotes to list them all. What you don't see in the clip below is the Q and A that Mariska Hargitay hosts after the documentary. This discussion is EXCELLENT in describing what DV is, why victims stay, and how to help. If I were training DV advocates again as I did for many years, I would use this documentary.

Recently we have seen a our national attention turn to bullying (click HERE for a ton of resources). In the wake of recent suicides after being tormented for their sexuality, a campaign called It Gets Better to reach out to young people who may be gay or questioning has taken off HERE. I commend all of this work and give them my full support. However I would be remiss if I didn't SHOUT FROM MY ROOFTOP that we have been up to our asses for YEARS with violence at the hands of domestic abusers. Where is the public outcry? Why isn't our Homeland Security Code Red? It needs to be because 1 in 4 women will be a victim of a domestic abuser in her lifetime and that my friends is unacceptable. 1 in 4 is an epidemic in plain sight.

For more information or to get help, call the National Domestic Violence Hotline at 1-800-799-SAFE. The National Sexual Assault Hotline 1-800-656-HOPE.

It's not too late to sign up for 31 for 21. Remember, the challenge is to post every day in October and not all of the posts need to be about Down syndrome.

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