It's going to be a busy week!

I have pictures to post and stories to tell, but it may not happen this week because it's going to be a crazy busy one. Until then I just gotta say.............................

I love this kid!


Hugs! Have a great week everyone!

Linda

Is it time to have the talk?

Now I'm not sure which talk you're thinking of right now, but I'm probably not talking about the same one. I'll explain. Lila and I were sitting outside with our neighbors today- a mom and her two typical daughters, ages 4 and 9. Lila and the 4 year old were playing with sidewalk chalk and the 9 year old was tending to her hermit crabs. (Gross) Lila kept trying to color exactly where the 4 year old was coloring, messing up her pretty picture. The 4 year old was getting irritated with Lila, not understanding why Lila wouldn't just color in her "own space". My neighbor was explaining to her 4 year old that Lila didn't understand, that she's much younger. The little girl said, "She's not that much younger! She's almost 3!" And the mom said "Yes, that's true, but she doesn't understand." I have talked with this neighbor and 2 of my other neighbors about Lila and whether or not they have talked to their kids about Lila. Being a little different than they are. They had not and we agreed that we would wait to tell the kids when they noticed a difference. I'm wasn't exactly sure how to handle this subject- there are definitely opposing views on what/what not to do in this situation. Nick and I decided that we would handle it like we try to handle everything- head on and with truth. Lila has Down Syndrome, she is a little different. There are many similarities, but definitely some differences. We also feel like kids shouldn't be "shushed" when they ask honest questions- they deserve answers and hopefully this will help them to be more accepting of people that are different from them throughout their lives. Back to the story. The 9 year old neighbor girl didn't say much, she just took it all in. The 4 year old decided that she wanted to go home and when she did, the 9 year old brought her hermit crabs over to sit by Lila. She sat far enough away that Lila couldn't reach in and be pinched by one of them but close enough so that Lila could see. She was telling Lila about the crabs, describing their painted shells, all the while making sure that Lila was safe. Every time Lila reached toward the little bucket the 9 year old gently moved it away but kept talking to Lila. I was very moved by this display of kindness. We've lived across the street from these people for 5 years and I've never seen her act this way. She's just a typical kid, but she doesn't have much interest in or patience for people that are younger than she is. As I watched this play out I had a feeling that this little girl senses there is something different about Lila.

It might be time to have a talk with the neighbor girls. I am thinking about having coffee with their mothers and making it happen. I don't want it to be a big "to do", but I have to have a plan, right? I bought some books on Amazon today-Don't Call Me Special: A First Look at Disability,
In Jesse's Shoes, The Special Needs Acceptance Book: Being a Friend to Someone with
Special Needs and We Can Do It!

Any thoughts? I'm not looking for advice on whether or not to have the talk- we've already decided that. So many people only want to focus on the similarities and back away from addressing the difference of their kids with DS. The kids already see the similarities, but they also see the differences. They're kids- curious, wanting answers. We believe that it would be best to provide the answers in a safe, loving and positive environment. And, in this case, we hope to answer some of the questions before they are asked. They're going to be on a playground at some point in the future and someone is going to call someone else the "R" word. Hopefully we can steer this particular group of kids in the right direction.

Learning as we go~

Linda

Bossy

The scene:

We're in Lila's playroom, I'm changing a dirty diaper. She's talking and singing, as usual. I'm lost in thought, thinking about everything on my to-do list. I come back to reality with Lila saying, "Hi, mama! Hiiiiiiii maaaaammmaaaaa!"

I guess I didn't respond within the proper time so she said, "MA! Say 'Hi Lila'!"

Bossy kid.

This kid cracks me up

Lila's sitting in her high chair having a snack of apples and cheese. I'm cleaning the kitchen- wiping off counters and loading the dishwasher. She's watching me very intently, like she always does. "I'm cleaning" I tell her. She raises her eyebrows, turns around in her high chair and points into the family room. "Oh" I say, "you think the family room needs cleaning too?"

She nods her head, says "Yes" and continues to eat her snack.

She's right. The family room is a mess.

Busy week before vacation

2 weeks ago was a crazy time for me. It was the week before vacation, which I couldn't mention because it was a surprise for Tiffani-and I didn't want to ruin it. So the week of the 10th I had 2 playdates for Lila, 3 therapy sessions for Lila, a Mom's Night Out, a fundraiser meeting for Junior League, a presentation to prepare for, laundry and packing for Lila and me, and last but not least a presentation to give at a statewide women's convention for Junior League . On Saturday morning I got up at 4:00 (AM) in order to leave at 5:20 for the convention. I got home around 7:30 that evening and got up again at 4:30 (AM) to leave for vacation on Sunday. Oh, and I forgot to mention that I had a sinus and an upper respiratory infection during the week. Or at least I think it was during the week- I finally went to the doctor on Friday- my mom convinced me to go- and I left the doctor's office with 5 prescriptions. An antibiotic, a new inhaler, breathing treatments for the nebulizer, a steroid and a cough syrup with codeine. All week I'd been thinking that my allergies were irritating my asthma but I guess I was wrong. Lesson learned.

The presentation went well. Thanks to everyone for their input- I apreciated it and I used it. : )
Pam and I worked very well together- we shared two 30 minute sessions. Thankfully Pam took the lead as my voice was going in and out. She was awesome. I was humbled to be able to share information about our daughter and her impact on our lives. It was incredible. In addition I was thrilled that I wasn't even nervous. A miracle in itself.

My friend Pam and me

Mom's Night Out was fun- all of us mothers of kids with DS- a good turnout and yet we were missing quite a few! We are blessed to have such an amazing network of support.

Some of the girls

Vacation was awesome- we had an amazing time in Salt Lake City, Utah (where Nick had a meeting) and Jackson Hole, Wyoming~ visiting the ranch where Tiffani has worked for the past 2 summers. I will post pictures in the next few days- my bed is calling my name.

Hugs~

Linda

The twinge

"The twinge"- you know the one- when you're looking through other people's FB pictures and you see a little girl or boy eating with utensils at the ripe old age of one- and you almost comment on it- and say something like, "Oh, that's great! Look at him/her- already eating with a fork/spoon!" But you stop yourself because you realize that most kids are eating with utensils at that age. And then you realize how quickly time has flown and your daughter will be 3 in a few weeks and she still can't feed herself with a spoon. That twinge? Yup. That's the one.

And on the flip side you feel guilty about feeling sorry for yourself about your daughter not eating with utensils yet because at least she can eat. And even though she has to wear those not-so-attractive walking shoes with the $800 orthotics she can walk. So suck it up girlfriend. It's time to be thankful.

It's Terrific Tuesday and I have so many reasons to be thankful.

Lila is walking so well with her new walking shoes/orthotics combo. She has such good balance, she rarely falls over, and she walks a lot without getting tired. It's very exciting. She tries to run and it's so cute. She even tries to jump- and when she does she ends up only moving the top half of her body. It's hilarious. And after she's finished moving from the waist up she's so proud of herself because she thinks she's jumping. : )

Lila's sensory issues are getting so much better. She's only had 8 OT sessions so far but she's making great strides. I seriously have tears in my eyes at every appointment because I'm so excited about her progress. She swings on all of the therapy swings now, and in the beginning she wouldn't even come near them. She actually crawled through a moving barrel 2 weeks ago. She stands barefoot on a scratchy uneven platform and throws bean bags into a plastic bucket while maintaining her balance almost independently. It's amazing and I'm so thankful for Kelly, our wonderful and patient OT.

Lila's talking up a storm. You really have to watch what you say because she tries to repeat everything. She sings along with her videos and remembers a lot of the words in her books. She can say her ABC's and count to 13. When she wants to. She tends to be a little shy sometimes and it can be a bit frustrating because I feel like it looks as if I'm embellishing her accomplishments. But really, she can. I have witnesses. : )

All in all, Miss Lila is doing well. And I can't begin to measure the joy that she brings into our lives. Her smile lights up the room. Every time I come into a room she says "Hi Mama!" even if she saw me just a few moments before. (She does this to everyone in the family) She is full of hugs and kisses. She is so persistent- she never gives up. Sometimes I wonder if we're motivating her or if she's motivating us. I guess it's a little bit of both. I'm so thankful for her determination. I'm so thankful for her life.

That twinge? It doesn't stay around for long.

Proud to be her mama~

Linda

Thanks Toys R Us!

I know that some people don't like for their child to be "singled out" for the fact that they have Down Syndrome, but I feel that our kids do learn a bit differently and I'm thankful to Toys R Us for recognizing that. Yay for us!

Excerpts from a CNN article

When Katy Wilson was born with Down syndrome, doctors told her mother that the infant likely would never walk or talk. She sure showed them.

Katy Wilson says she wants her athletic successes to surprise people and give them hope.

Wilson, now 29, has won two international gold medals in the Special Olympics for her gymnastic abilities. She turns cartwheels for her floor routine and does acrobatics on the balance beam.

She also goes on public speaking tours.

"Most of all, I love doing speeches because I want them [the audience] to be surprised just how good my speeches are," she said by phone.

Wilson's story -- and countless other stereotype-bending stories like it -- is possible in part because of the dogged vision of Eunice Kennedy Shriver and the Special Olympics organization she founded more than four decades ago.

Shriver, who died Tuesday, started the organization as a sports camp for special-needs kids and adults in her backyard in Maryland in 1962. Since then, the Special Olympics has grown into a global organization that helps 3 million athletes with Down syndrome, autism and other intellectual disabilities compete for medals in an array of sports.

"She helped forever alter how people with intellectual disabilities are viewed and treated and respected," said Amie Dugan, a spokeswoman for the Special Olympics. "This is a population that 40 years ago they were beyond marginalized. They were disenfranchised from society. It was considered the status quo ... to put them in an institution and never think about that again. And she changed all of that. She brought them out into the light."

An estimated 200 million people in the world live with intellectual disabilities. That population was largely unseen and voiceless in 1968 when Shriver stepped to the microphone to announce the start of the first Special Olympic Games at Chicago's Soldier Field.

"In ancient Rome, the gladiators went into the arena with these words on their lips," she told the 1,000 athletes in the stadium. "'Let me win, but if I cannot win, let me be brave in the attempt.'"

Before the program, people with intellectual disabilities were only told what they could not accomplish, said David Tolleson, executive director of the National Down Syndrome Congress. "Special Olympics emphasizes what folks can do, and it does it in a manner that's fun and exciting and it offers a sense of community both within the family of those with developmental disabilities as well as with the greater community at large -- the volunteers who come in and have some of their misconceptions or preconceptions cast aside when they realize how much people with developmental disabilities truly are capable of."

Jeanne Wilson, the mother of the gymnast with Down syndrome , started tearing up when she recounted the moment she saw her daughter -- whose future once looked so uncertain -- standing atop an awards podium with a gold medal draped around her neck.

"It was just amazing because that really gave her confidence. And I don't think people realize how much it means to a young person who you might have thought did not have a future or might not ever have a chance to walk," she said. "To see her doing a routine on balance beam or a floor routine is pretty amazing."

Katy Wilson, who lives in Gainesville, Georgia, continues to train as a gymnast. She also goes bowling with a group of Special Olympians most Fridays. They call themselves the Alley Kats, and Wilson describes the bowlers as some of her best friends.

"I love bowling because it is so much fun being out there being able to have friends," she said. "It's exciting to do bowling because I get a lot of scores."

When she's not in training, Wilson works at a steakhouse as a hostess.

"I get their coffee, I get their bread, I get their drinks, I do the silverware, I sweep up, I do the hostess," she said. "Oh, I love the job because everybody's so nice to me, especially the managers, they give me hope and they're so excited to have me there and I'm so happy to be there with them."

As a global ambassador for the Special Olympics, Wilson tours the country telling people about her life story. She says she hopes it reminds them that everyone can succeed with a positive attitude.

She grew up watching her sister do cartwheels as a cheerleader.

She modeled her life in her sister's image, but she forged a life that's all her own.

R.I.P. Eunice Kennedy Shriver

President John F. Kennedy's sister, Eunice Kennedy Shriver, who carried on the family's public service tradition by founding the Special Olympics and championing the rights of the mentally disabled, died early Tuesday surrounded by relatives at a Hyannis hospital. She was 88.

Shriver had suffered a series of strokes in recent years and died at Cape Cod Hospital, her family said in a statement. Her husband, her five children and all 19 of her grandchildren were by her side, the statement said.

"She was the light of our lives, a mother, wife, grandmother, sister and aunt who taught us by example and with passion what it means to live a faith-driven life of love and service to others," the family said.

The hospital is near the Kennedy family compound, where her sole surviving brother, Sen. Edward Kennedy, has been battling a brain tumor.

Sen. Kennedy said his earliest memory of his sister was as a young girl "with great humor, sharp wit, and a boundless passion to make a difference."

"She understood deeply the lesson our mother and father taught us — much is expected of those to whom much has been given," he said in a statement. "Throughout her extraordinary life, she touched the lives of millions, and for Eunice that was never enough."

President Barack Obama said Shriver will be remembered as "as a champion for people with intellectual disabilities, and as an extraordinary woman who, as much as anyone, taught our nation — and our world — that no physical or mental barrier can restrain the power of the human spirit."

As celebrity, social worker and activist, Shriver was credited with transforming America's view of the mentally disabled from institutionalized patients to friends, neighbors and athletes. Her efforts were inspired in part by the struggles of her mentally disabled sister, Rosemary.

Peter Collier, author of "The Kennedys, an American Drama," called Eunice Shriver the "moral force" of the Kennedy family.

"We have always been honored to share our mother with people of good will the world over who believe, as she did, that there is no limit to the human spirit," her family members said in the statement.

Shriver was also the sister of Sen. Robert F. Kennedy, the wife of 1972 vice presidential candidate and former Peace Corps director R. Sargent Shriver, and the mother of former NBC newswoman Maria Shriver, who is married to California Gov. Arnold Schwarzenegger. With Eunice Shriver's death, Jean Kennedy Smith becomes the last surviving Kennedy daughter.

Schwarzenegger said his mother-in-law "changed my life by raising such a fantastic daughter, and by putting me on the path to service, starting with drafting me as a coach for the Special Olympics."

A 1960 Chicago Tribune profile of the women in then-candidate JFK's family said Shriver was "generally credited with being the most intellectual and politically minded of all the Kennedy women."

When her brother was in the White House, she pressed for efforts to help troubled young people and the mentally disabled. And in 1968, she started what would become the world's largest athletic competition for mentally disabled children and adults. Now, more than 1 million athletes in more than 160 countries participate in Special Olympics meets each year.

"When the full judgment on the Kennedy legacy is made — including JFK's Peace Corps and Alliance for Progress, Robert Kennedy's passion for civil rights and Ted Kennedy's efforts on health care, work place reform and refugees — the changes wrought by Eunice Shriver may well be seen as the most consequential," Harrison Rainie, author of "Growing Up Kennedy," wrote in U.S. News & World Report in 1993.

It was Shriver who revealed the condition of her sister Rosemary to the nation during her brother's presidency.

"Early in life Rosemary was different," she wrote in a 1962 article for the Saturday Evening Post. "She was slower to crawl, slower to walk and speak. ... Rosemary was mentally retarded." Rosemary Kennedy underwent a lobotomy when she was 23, though that wasn't mentioned in the article. She lived most of her life in an institution in Wisconsin and died in 2005 at age 86.

The roots of the Special Olympics go back to a summer camp Shriver ran in Maryland in 1963. Shriver would "get right in the pool with the kids; she'd toss the ball," said a niece, former Maryland Lt. Gov. Kathleen Kennedy Townsend, who volunteered at the camp as a teen. "It's that hands-on, gritty approach that awakened her to the kids' needs."

Realizing the children were far more capable of sports than experts said, Shriver organized the first Special Olympics in 1968 in Chicago. The two-day event drew more than 1,000 participants from 26 states and Canada.

By 2003, the Special Olympics World Summer Games, held that year in Dublin, Ireland, involved more than 6,500 athletes from 150 countries. The games are held every four years.

Well into her 70s, Shriver remained a daily presence at the Special Olympics headquarters in Washington.

"Today we celebrate the life of a woman who had the vision to create our movement," said Special Olympics President and COO Brady Lum.

"In her memory, we will continue to work to bring her powerful vision to life to change the lives of those with intellectual disabilities, their families and communities, using sports as the catalyst for respect, acceptance and inclusion."

Juvenile delinquency was another issue that interested Shriver and spurred her to action. In his 1991 book "The Promised Land: The Great Black Migration and How It Changed America," author Nicholas Lemann said the Kennedy administration's juvenile delinquency commission, "a pet project that had been created to placate Eunice," became the precursor of the vast federal effort to improve the lot of urban blacks.

After he took office, President Lyndon B. Johnson tapped R. Sargent Shriver to lead his War on Poverty.

Eunice Shriver was the recipient of numerous honors, including the nation's highest civilian award, the Presidential Medal of Freedom, which she received in 1984. In May, the National Portrait Gallery installed a painting of her — the first portrait commissioned by the museum of someone who had not been a president or first lady.

Shriver was born in Brookline, Mass., the fifth of nine children to Joseph P. Kennedy and Rose Fitzgerald Kennedy. She earned a sociology degree from Stanford University in 1943 after graduating from a British boarding school while her father served as ambassador to England.

She was a social worker at a women's prison in Alderson, W.Va., and worked with the juvenile court in Chicago in the 1950s before taking over the Joseph P. Kennedy Foundation with the goal of improving the treatment of the mentally disabled. The foundation was named for her oldest brother, Joseph Jr., who was killed in World War II.

In 1953, she married Shriver. He became JFK's first director of the Peace Corps, was George McGovern's vice-presidential running mate in 1972, and ran for president himself briefly in 1976.

Survivors include her husband, who was diagnosed with Alzheimer's disease in 2003, and the couple's five children: Maria Shriver, who is married to Schwarzenegger; Robert, a city councilman in Santa Monica, Calif.; Timothy, chairman of Special Olympics; Mark, an executive at the charity Save the Children; and Anthony, founder and chairman of Best Buddies International, a volunteer organization for the mentally disabled.

Mark Shriver once said his parents' actions, not just words, influenced their children.

"In the course of our upbringing, they stressed the importance of giving back," he said. "But we didn't sit around having family discussions about it. We learned by what she and my father were doing."

Sweet girls

Last night we had a BBQ with some friends. There were 4 families represented. I say represented because no family was complete. One family was missing two daughters, another family was missing a mother and a daughter, another was missing a mother and we were missing a daughter and a son. We had a great time- kids running around, men yelling while watching sports (scaring the crap out of Lila), good food and a lot of fun.

Daddy and Lila at our friend's house

Miss Lila was such a good girl

After we were finished eating one of the older girls came home. One after another, 3 of her friends arrived. Lila went to meet them at the door and soon they were all sitting on the floor near the front door playing with Lila. They were letting her play with their bracelets, their keys, their cell phones and anything else Lila wanted to play with. Then they started singing songs with her. It was so funny listening to them try to remember songs from their childhoods. Lila was eating it up, singing along and dancing. It was so cute- I wanted to take a picture but it would have ruined the moment. They sat and played with her for 20 minutes or more. All 4 girls just graduated from high school and are headed to college within the next 2 weeks. They could have walked right past her and proceeded to do whatever they were planning to do. But they didn't. Those sweet girls made Lila's night. Mine too. When we got home, Lila wanted to play some more. Here's a picture of her running away from her daddy when he was trying to get her ready for bed.

Have a great day everyone!

Hugs~

Linda

Saving money and a Justin story

I love saving money! I have been using more and more coupons lately. We need to save, save, save. : )

Yesterday Justin and I headed over to Kohl's during Power Hours. We desperately needed a couple of new suitcases as our old ones seem to keep breaking! (So do our cars, but that's a story for another day.) I found a set of 4 Dockers suitcases, sturdy yet lightweight. Justin and I checked all of the suitcases over thoroughly before deciding on the Dockers set. People though we were crazy- we were taking all of the suitcases out, checking out the zippers, checking out the lining and trying to figure out how much they weighed. The Dockers set was originally priced $ 249.99. It was marked down to $89.99, a savings of $160. I had a coupon for 20% off so we saved an additional $17.99, total savings $177.99. Did I mention that I love saving money?

After we left Kohl's we headed over to Costco to eat samples. Wait- what I meant to say was that we headed over to Costco to pick up some salmon for dinner. (But the samples were fabulous yesterday.) We were on our way to our car when I saw a man with Down Syndrome. He had his back to me but I could tell. Justin said, "Mom" and motioned his head in the man's direction. I smiled, letting Justin know that I'd already seen him. He was standing with his parents, who were probably about the age of my parents. Justin and I guestimated that the man with DS was probably in his forties. It was easy to watch him when we walked by as their little family unit was standing together, the parents looking over their receipt and the man with DS waiting patiently with his hands over his ears. (It was crazy busy in Costco so he was probably a bit over-stimulated.) I rarely pass up the opportunity to talk to parents of a child with DS but they were lookng at the receipt so intently I decided not to interrupt them. As we walked away, I felt a tear slide down my cheek. I told Justin that there is absolutely no way I'm going to get through my presentation next weekend without crying. I wanted to go over and hug him, and tell his parents that I, too, have a child with Down Syndrome. I wanted to ask them questions, show them pictures of Lila, get to know them. It just wasn't the time. Justin said that when he looked at them, he felt like crying too because it reminded him of Nick and me when Lila gets older. The good thing is, he said, that we'll always be happy. Lila just has a way of doing that.

Speaking of Justin, he is getting ready to head back to school. Change is in the air and I'm not liking it very much. Thankfully when Justin leaves Tiffani will come home, school will start for both Tiffani and Lila, and life goes on. But pretty soon the big kids won't call this their home anymore and that makes me sad. But for now, they still do so I'm going to try and make the most of every day with them.

My silly boy.... um, I mean man

My precious big kids earlier this summer

Hugs~

Linda

3 books

I'm reading 3 books right now and I can't stop myself. The first one, a book that I started last week beside the pool at my in-laws, is called Love as a Way of Life. It is my honest opinion that everyone in the whole wide world should read this book. The second one, which almost made me fall off the elliptical tonight because I was sobbing, is called Road Map to Holland. I'm guessing that if you're reading this blog you might have already read the book. So I'm a little behind. The third one, The Year My Son and I Were Born, is my least favorite of the three so far. But it's growing on me. : )

I feel like I'm coming alive again. Like I'm coming out of the slump. You see, I've been in a bit of a funk lately. Someone hurt my feelings a while back and I have had a hard time shaking it. Unfortunately it was someone from the Down Syndrome community, as silly as that sounds. It doesn't feel great when anyone hurts your feelings but somehow this one really kicked my butt. I'm not unrealistic, I know we're not all going to be best friends just because we share the common bond of a kid with an extra chromosome but I think that we should at least be kind to one another. And respectful. But that didn't happen. I haven't spoken about this to anyone except my oldest sister. And I don't intend to. I wrote e-mails to two of my friends telling them what this person said to me. I deleted them before I hit the send button. It's not worth it. I'm not going to perpetuate the drama. And this is the last I'll talk about it. I'm finally over it. And I'm glad. I have to see her next weekend and I'm hoping that I will handle the situation with grace. That's the goal. I'm disappointed in myself for letting this situation affect me so much but I did. Now it's over. And it's time to move on. Thank God for new beginnings.

Now on to the books. I'm actually going to blog about Love as a Way of Life as I read it. I'll let you know in the blog title so that if you don't care to read my little book review you can skip over it. (Please don't, though.) Here is a list of the chapters:

Seven keys to transforming every aspect of your life:

Kindness- discovering the joy of helping others
Patience- accepting the imperfections of others
Forgiveness- finding freedom over the grip of anger
Courtesy- treating others as friends
Humility- stepping down so someone else can step up
Generosity- giving yourself to others
Honesty- revealing who you really are

I can't wait to read it- I skimmed over it while floating in my in-laws' pool but I intend to really read it. I have my highlighter ready. : )

In other news, I had the best day today. Lila and I were alone together all day and we had so much fun.

Hugs to you and yours~

Linda

Input please..............

The proud mothers of these beautiful girls have been asked to do a presentation on Down Syndrome at the Virginia General Federation of Women's Clubs state convention on August 15th. I would like to solicit the help of my blogger friends for part of my presentation. If you would, please leave me a comment regarding the following:

If you had the opportunity to inform the general public about raising a child with Down Syndrome, what would you want them to know? What would you tell them about your life? Your child? Your experience? Any presumed misconceptions you would want to address?

Most of the women that we will be presenting to won't have much (or any) knowledge about Down Syndrome. My friend Pam and I want to use this opportunity not only to educate the women on facts, we want to stress that with our kids, the blessings far outweigh the hardships.

Your input would be greatly appreciated.

Hugs~

Linda

Home again

We are home! We had such a nice time in New York visiting my in-laws. Oh, and there was the appointment with Dr. Jordan, the podiatrist. The reason for the trip. : )

We drove over to Long Island from my in-laws last Thursday. Traffic wasn't bad, which was wonderful. Nick's parents dropped us off and went for coffee while they waited for us. We were the only ones in the office as they only schedule 1 appointment at a time. It's a 3 person office- the office manager, the podiatrist and the man that makes the orthotics. It was a great visit- the doctor played with Lila and examined her, all the while explaining his history of working with kids that have Down Syndrome. Turns out he was instrumental in pushing for the Early Intervention programs in New York. He did studies, documented data and helped prove that Early Intervention was/is very important when working with kids that have DS. Therapies and programs previously started at the age of 8 in New York. He was a very humble man, and it seemed that he had good reason to be anything but humble. The walls were covered with letters of appreciation and plaques. He had autographed pictures of pro football players, a picture with Pope John Paul II and a plague acknowledging his commitment to people with Down Syndrome, crediting him with his participation in the start-up of the Early Intervention programs in New York. Oh, and then there was the presidential pin he wore on his lapel from President Clinton. Nick asked him how he had gotten the pin and he told us the story of how he had reviewed Hilary Clinton's health care plan. But if you didn't ask, he didn't say. There was a map of the world in the waiting room filled with push pins. All over. Mike, the guy that makes the orthotics, told us that those push pins represent patients of Dr. Jordan. It seems that our little trip from Virginia wasn't much of a trip at all. People come from all over the world to see this guy. He was phenomenal. I wish that we would have been carrying a tape recorder. He was so full of information. He is technically a podiatrist but he studies the whole body. He checked out her arms, her fingers, her hips, her back, her knees, her toes. He started talking about her sensory issues and asked if she was getting therapy/treatment for those issues. ( I was impressed that he even recognized that she had sensory issues as 3 other doctors had poo-pooed the idea when she was identified with Sensory Processing Disorder. He recommended that Lila wear orthotics to help straighten out the way she walks. He went out to confer with Mike and they both came back into the room and talked to us for a while about Lila's feet and legs. Then we took Lila into the back of the office where the Mike made molds of both of Lila's feet- oh how she hated that. She screamed and screamed, cried real tears and even kicked him a couple of times. She was shaking so badly, poor little thing. All was forgiven when it was over- she liked the molds of her feet and she loved her Dora sticker! Her orthotics will be mailed directly to our PT and she will make sure that they fit correctly and don't need any adjustments.

All of this to say, we are so glad we made the trip to New York for this visit. Many people have asked why we would travel to New York to see a specialist when we have plenty of them around the DC area. I guess the reason is that we trust our PT and she recommended that we see Dr. Jordan. Nick was hesitant and wondered if it was really necessary but after the appointment he said that he was glad that we had spent the time and money.

Sorry for the boring post!

Hugs~

Linda