Pearls

Good-bye, 2011!

2012-01-01T16:24:00.006-05:00

Hello again. It's been a while. Life has been crazy to the point that I haven't had time to stop, to reflect, to blog.

As we said good-bye to 2011, and I looked through the Shutterfly family calendar that I had made with the pictures from 2011, it just amazed me how much happened last year. In the interest of keeping some sort of chronology of our lives, I am going to list the top 15 events below:

1. Victoria Marie was born on February 22, 2011. I had been put on bedrest due to pre-eclamsia a couple of weeks prior to her birth, but I continued to work until a nurse told me to put my blackberry down. Yes, I was already at the hospital. My mom stayed with us for 2 months and helped us tremendously. We are hoping that she will come back in early 2012 to see how much Victoria has grown.

2. Will became a big brother. Initially, it was a big shock for him, but he has come a long way to become a kind big brother to Victoria. I couldn't be more proud of the way he's learned to be around her. I can now see that he actually enjoys her presence and even found a sneaky way to play with her by teasing her with his toys.

3. I lost all of the pregnancy weight (42 pounds), but, along with that, I've also lost about half of my hair. 60 steroid shots later, I am still trying to stop the hair loss (alopecia areata, to be more specific).

4. I nursed Victoria since her birth and haven't stopped. As she's approaching her first birthday, I will begin weaning her off very soon, but I had never thought I'd be able to nurse her for the entire year. It's an incredible amount of work but the results, both tangible and intangible, are worth more than I could ever express with words.

5. Will graduated from Pre-K and spent almost five weeks (in ~2 week increments) with his dad in New Mexico. It was a big adjustment each time, and we were all worried about how he would be able to handle the change, but he did fairly well, considering the long flights, being in a one-week Autism camp (New Amigos) for the first time, and all the new experiences.

6. Ed graduated and got his Bachelor's of Science in Electronics Engineering! It only took 11 years but he was going to school while being in the US Navy. We had a surprise party for him at the house with lots of good people and food.

7. Ed and I got married. It was a beautiful ceremony and reception at the Meadow Pavilion at Tarara Winery in Leesburg, VA. The weather was perfect, the company was amazing as we had my friends and family come from all over the world, and Will and my Dad walked me down the aisle. I couldn't have asked for more.

8. Will started kindergarten! Not just any class, but he is in a categorized, Autism-focused kindergarten class with an amazing teacher and specialists. What's even better is that it's in the same school where he went to pre-K, so it's all familiar territory for Will, which helps him a lot given the rest of the changes.

9. We went on a 5-day honeymoon cruise to Bermuda! We brought Will and his nanny Meg with us, while Victoria stayed home with Ed's aunt Cindy. It was a great adventure for us, and it was wonderful to have Cindy come and take care of her niece.

10. I had my first year anniversary at GSA as a federal employee.

11. Willie turned 6. We had a small celebration at the house, but it was warm and everyone had a great time.

12. We traveled to Buffalo, NY to spend Thanksgiving with Ed's sister's family. We almost had a major car accident as I drove off the road, but we survived. What a trip that was.

13. Ed left Motorola and started a new engineering position at Philips Health Care as an MRI engineer. Go Ed!

14. We had everyone here at the house for Christmas: Jordan, Will, Victoria and Ed's parents. It was nice to have everyone here for the holidays and to share Victoria's first Christmas.

15. Ed and I had a date night. Yes, imagine that! We had a great 2.5 hour date night at Cookology in Dulles Town Center, cooking a healthy Italian dinner. It was the best "adult" time I've had in a long time, and I actually learned quite a few cooking tips. We will definitely be going back.

All in all, it was a really good year, full of major life changes and milestones. I hope that 2012 will be less eventful, so that we can catch our breath. I hope.

Cheers and Happy New Year!

Christmas 2011

2011-12-19T21:10:00.001-05:00

Love Joy Christmas

Shop Shutterfly's collection of Christmas photo cards.

View the entire collection of cards.

The Big Six

2011-11-04T12:00:00.013-04:00

Willie turned 6 yesterday! This year, we decided not to have a big celebration (we will do that next year), so we invited just the people closest to Will to our house. As part of the celebration, Ed's friend, Len Robinson, who is a great cake baker, made a super tasty chocolate fudge cake with Clifford the Big Red Dog as the main decoration (Will is into Clifford these days). We also ordered delicious pizzas from La Villa Roma in Leesburg, VA (our favorite local pizza restaurant), and I made Sharlotka (the Russian apple pie).

Will was definitely tired and overstimulated at the party, but that was understandable after a full day of kindergarten and the "lose the training wheels" after school program. With so many people that he loves around him at the house, I think that he just wasn't sure how to divide his attention. But he had a big smile on all night.

Will was especially happy to see his Dad - so much, that he didn't want to let him go... We had to convince him that he will see Daddy tomorrow and go to visit his Nana and Tut for a long weekend. I thought that it was wonderful that not only he remembered his Dad after not having seen him for several months, but he wanted to go with him. Those moments always make wonder if he ever thinks about his Dad and wonders when he will see him again.

So, overall, I think that everyone had a really good time and our little get together was a success. I did not have any expectations (I stopped having expectations years ago), but everything went as perfect as it could. We ate pizza and cake, opened presents with Willie, and had good conversations. Speaking of eating pizza, I just loved how Will dug his teeth into a slice of pizza -- it just looked like something a typical boy would do.. It made me have a flashback of when he would only eat mashed food and refuse to chew. Little did I know then that it's one of the Autism traits, mainly due to an underdeveloped facial muscle tone. I was so happy to see that he doesn't have that problem anymore -- he has come a long way.

Happy Birthday, Willie. You are an amazing little boy, and you make our world a better place every single day. We love you more than you'll ever know.

"Fixing" Autism (Video by Lou Melgarejo)

2011-10-26T11:30:00.010-04:00

Re-posting a video made by a fellow Autism parent, Lou Melgarejo. It's a simple video, there is no talking, just a song by Cold Play as the background music.. In the video, Lou goes through a series of flash cards, with the words on the flash cards screaming louder than the loudest voice. Watch it, learn from it, spread Autism awareness and make a difference.

let him be a boy

2011-10-23T10:31:00.014-04:00

Life with Autism is not something I chose - it was given to me by God, Universe, or just simply by the fact that my son, Will, was born with it. I struggle with Autism every single day and it breaks my heart because I see Will's struggles and unable to do anything about them. I try to be positive all the time and focus on how much he has grown and all the possibilities ahead, but, the reality is still with us every day, and Autism is my pain that never, ever goes away. It gets better at times, but it never goes away completely.

Some of us, however, chose to share a life with Autism. It's not an easy life, it has a lot of challenges and hassles that typical families never experience. For example, Will is going to be 6 next week, and we are still working on farm animals sounds: Will can identify a cow and that it makes a 'moooo' sound, and that's an achievement for us. Will can ride a 16-inch wheel bike by himself, with training wheels, and that's an achievement for us. Will can hold a pen and make horizontal and vertical lines, 4-5 in a row, and that's an achievement for us. Will can focus his attention for more than 30 seconds, and that's an achievement for us.

Ed, my husband and Will's stepfather, and I are a team, and it's Will's potential and possibilities that keep us going. While I am often afraid of Will's failures because I view them as my own, Ed is not afraid of them. He says that when he looks at Will, he sees a boy with a big heart and lots of potential vs. an Autistic boy. Ed is often the one who pushes Will to new things, while I stand behind and worry and pray that Will doesn't fail.

It's a tough balance between protecting Will from getting hurt emotionally or physically and letting him grow. Any mother would have this issue, especially when it comes to your special needs child. And, when fall into the overprotective mommy mode, Ed steps in and takes over for a bit as I move to the side and watch.

I do recognize that as a mother, I am overprotective... I just can't help it. Ed is famous around here for telling me "Let him be a boy!" when it comes to Will. As a father of a typical 12-year-old boy, Ed is often the one who is able to give me that reality check that not every single "wrong" thing that Will does is because of Autism -- a lot of it is just Will being a boy... silly, mischievous, slightly devious, calculating, and funny. My boy.

The reality is that I will never stop being overprotective - that's just one character flaw, perhaps, that is part of my DNA. But, it's an incredible, comforting feeling when you know that when you are way overboard, someone you trust can step in, take over, and do what's best for your child. And for that, I am forever grateful.

On Wish Lists...

2011-10-21T12:11:00.010-04:00

As the holidays approach, I've been asked to start working on a Wish List for me, Ed, and the kids. Since this is Victoria's first Christmas, and both Will and Jordan will be here for the holiday, we will all be congregating at our house to celebrate the occasion.

The truth is that we do not really have wish lists. Tangible things have lost their meaning a long time ago, and, those that do serve a purpose get budgeted for and purchased when needed. We work hard to make that possible, and, one way or another, we make it happen.

Victoria already has everything she needs as she inherited so much from Will and got a lot of hand-me-downs from my friends. As for Will, he still doesn't have a concept of Christmas as it is way too abstract for him to comprehend. So, we use Christmas as the time to research the latest developmental Autism toys that would benefit him and put money aside for camps and programs to help him grow. Jordan is 12, so that means it's all about Wii and games, but, we are going to try to make it more about learning, school themes, and family time this year.

So, that leaves me and Ed. I wrote a list of things that Ed either has mentioned in the past or the things I know he would appreciate. But, for the most part, I know that he just wants more hours in a day, more sleep and less commute.

As for me, I want more time, too. I want more time so that I can paint a painting of Will walking on a farm, or him running on the beach in Virginia Beach. My art supplies have been waiting patiently and I hope to get to them. Someday.

I want a vegetable garden, so that I can grow tomatoes, cucumbers, dill and green onions. If all is well, I am going to have a garden this spring. We have to re-arrange some stuff in the backyard to make room for it, but it's doable. I can't wait.

I wish we could all travel to Russia soon so that Ed could see my roots, Will could see the church he was christened in, and Victoria could meet her great grand parents.

I want my sister and I to be closer, physically and emotionally. I know that she's been through a tough time, some to her own fault, but, nevertheless, I worry about her and miss her dearly. I wish I could visit her in England and give her a big hug. She is my little sister, I helped raise her from day 1, and, just like me, she is trying to make her life far away from home, in a different country. It is not easy.

I wish my mom had more strength and independence to move on with her life as a single person. I wish that she stopped looking back and living in the past. I wish she realized that we cannot change the past, but we do have a shot at changing the present for a better future. I also wish that she found someone to help her with her computer so that she could see the pictures and videos of her grandchildren.

I want Will's grandparents (both Russian and American) to play a more active role in his life... It doesn't matter whether you are an ocean apart, or the Bay Bridge apart, divorced parents or married, if there's a will, there's a way.. If there is Will, there's a way.

I wish Will's ABA therapy was still an option for us. I wish his therapists would find time to continue working with him on the side... I wish there was a way that we could bring Joanna back. I wonder if Will ever thinks of her, wondering where she went or why she is not coming back.

I wish that we would find a way for Will to express himself... I wish that one day he could tell us or "tell" us what is on his mind.

Santa, can you hear me?

"Parenting, I’ve come to understand, is about loving my child today."

2011-10-17T15:20:00.013-04:00

"...NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster... "

A friend shared ths article with me, and it moved me to tears. It's not about Autism, in particular, but it's about raising and loving a child who has an illness with no cure. I love every word in this article because it's true. Some things are the things I've exprienced before so many times, and it made me feel completely alone and depressed. Self-help, self-motivation and faith have become key in this journey because you cannot make it without being positive.

When I read this article, it struck a chord with me and reminded me that there are so many of us out there, feeling depressed and sad and yet find the strength and faith to persevere, to never give up, and to cherish every moment. It's articles like this one that make me a better parent.

I am posting a copy of the article below.

*****************************

By EMILY RAPP
"Notes from a Dragon Mom"
Published: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.

"MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit? Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food;cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."

By EMILY RAPP
Published: October 15, 2011

My Little Munchkin

2011-10-17T13:51:00.001-04:00

The First Autistic Kid Model?

2011-10-16T17:00:00.001-04:00

Ralph Lauren, call us...

Pumpkin Patch at the Wegmeyer Farms, VA

2011-10-15T20:11:00.009-04:00

Today, we went to the Wegmeyer Farms in Hamilton, VA for pumpkin picking and hay riding. This is our second year in a row going there, so it may as well be our new annual family tradition.

The place is lovely and not crowded, the staff is friendly, the views are great, and it just feels like you are on a real farm, in the middle of nowhere, which, technically, you are. I love picking your own pumpkins and having to cut the stems to get your "own" best pumpkin. Last year, we went a little earlier than this year, so there were a lot of pumpkins to pick from. This year, we were a bit late, so most of the pumpkins were already cut and were just sitting there all over the farm field, waiting to be picked. Last year, it was just the three of us - Ed, Will and I (pregnant with Victoria). This year, Victoria was with us, and was very much into the whole experience, trying to touch the pumpkins and hay.

Below are some pictures from 2010 and 2011.. I like to compare them because Will has grown and changed so much. I guess I don't realize it until I look at those pictures side by side. Last year, he was my little boy. This year, he is my little man and a big brother to Victoria. Still, one thing hasn't changed -- he is still the cutest, warmest, handsomest little man in the whole world :-) Enjoy!

October 2010

October 2011

The life we live...

2011-10-12T13:25:00.006-04:00

The kids have been riding us hard for the last few weeks. Victoria has been teething and whining non-stop, Will is still adjusting to being a big brother, and everyone in general is being overly demanding, including the dog. Weekends have become even tougher because we are all in the family room at the same time... Will is probably trying to figure out where/what we are going/doing next that involves him (and not Victoria), Victoria wants to be held and talked to and made funny faces to or get into something she is too small or young for, Ed wants to watch TV and relax, and I want everyone to get along, have fun, and be laid back and easy-going. I know, what I want is a fantasy.

On top of it all, we haven't gotten much sleep in the last several days. Will and Victoria seem to have teamed up to keep us up all night, taking turns. 2am wake-up calls from Will's room and then Victoria joining in with her crying for three straight nights have taken a toll on Ed and me. We started going to bed at 8:30pm so that we could get some sleep before all hell breaks loose.

Today, I read on my Facebook newsfeed that many parents with Autistic children have been complaining about their children not sleeping the last few nights.. Many older, veteran Autism parents said that it's because of the full moon. Supposedly, children in general are very sensitive when it comes to the lunar calendar, and especially the ones on the Autism spectrum. So there we have it -- we have a potential explanation to the no-sleep mystery at our house, so I guess I have to add lunar calendar to my watch list.

I really wish our families lived closer to us... My side being in Russia and Ed's side being in NY makes things tough as it's just the two of us all the time.

One funny thing is that because Victoria has been whining so much, Will started imitating her whining.. While it's annoying right now, I am hoping that once she starts talking, he will imitate that, too? I can hope.

Well, it's Wednesday, and Ed already asked me what the weather is supposed to be like this weekend. I laughed because I knew he was already planning this weekend in his head. The good news is that it's going to be a sunny, cool weekend. Another good news is that there's a new exhibit at the Newseum in Washington DC - Pictures of the Year. So, if all is well and we make it that far, we will be heading to DC.

...and that's the life we live.

Brother & Sister

2011-10-02T16:48:00.003-04:00

Victoria Marie - 7 months old

2011-09-30T19:14:00.006-04:00

I took some time this morning to shoot a few pics of her.. It's amazing how much she changes every day; sometimes I feel like I am missing out on a lot of it by being at work and not with her.

She is an active, determined, observant, demanding, affectionate, energetic, sweet little 7-month old.. She is our Victoria..

Walk for Will

2011-09-29T10:57:00.017-04:00

Another year went by... Lots of change... But, do we know more about Autism, its causes or its cure? Not really. Why? I don't know.

Is Will still Autistic today? Yes, he is. But, is he doing better because of what we know that does work, such as therapy, special school, structured play etc.? Yes, he is. Knowledge is power.

No matter how long it takes, we can't stop asking questions or give up; we have to fight for answers and demand information in order to help ensure that our children get a chance at life that we all refer to as "normal."

Autism Speaks is the largest national organization that has been instrumental in helping parents, researchers, teachers and communities find answers to many questions. But, there's a long way to go. As far as I am concerned, we just recently started this life-long journey, but we have to stay focused on its mission and course for as long as it takes.

Join me on October 22, 2011 in Washington DC for an annual walk to raise Autism awareness and funding and to Walk for Will. Your participation and donations will go a long way, so please visit my page by clicking here. I believe in it. Do you?

Thank you.

San Francisco Dream

2011-09-08T13:32:00.034-04:00

It's been more than a year since our trip to San Francisco, and I am just getting to blog about it. The truth is that I'd always wanted to go to San Fran, so I was super psyched when I had enough United miles to book two free round trip tickets for August 2010. I had made lots of plans and had super high expectations - why wouldn't I?

... and, then I got pregnant.

I was in my first trimester and super sick and tired when it was time to travel. Rescheduling the trip was not an option as I thought that somehow I would be able to shake it off.

Wrong. You can't shake off pregnancy. Maybe the flu or a cold, but not a pregnancy. It not only penetrates your entire body and mind, it temporarily changes you as a person. You literally have zero control over your body and mind, even if going to San Francisco has been your dream.

So, the sad reality is that the trip wasn't what I wanted it to be: I fell asleep on the tour bus and missed half of the sightseeing tour, I threw up at the Golden Gate bridge, and slept for 16 hours at the hotel after the trip to Alcatraz. Poor Ed... He wanted to do stuff, but he never complained once. He wanted to ride a trolley, but we didn't because I didn't want to..

But, we did manage to do some things: we walked the streets of San Fran quite a bit, compared to our typical non-walking life style. We visited Alcatraz, we ate out at some cool (and pricey!) restaurants, we went to China Town (and had some strange and not very appetizing Chinese food), and went on a San Francisco Dinner & Dance Cruise, which was wonderful. We were in San Fran for only 3.5 days (long weekend), so there was only so little we could do.

After we got back to DC, we decided that we will definitely go back. There is so much to see, including Sonoma! It's definitely a trip that couples should do sans children, so I’ll keep on dreaming of San Francisco in the meantime :-)

I brought along my Canon SLR but I didn't take many pictures for the reasons mentioned above. Below are the ones that I am not too embarrassed to show.

True Friendship Grows Stronger Overtime...

2011-09-04T13:47:00.005-04:00

Different route, same destination.

2011-08-29T14:03:00.018-04:00

Today, Will started his journey into the world of kindergarten, in the K-2 Autism classroom at Newton Lee Elementary.

Today, Will also went to a bus stop for the first time as the bus no longer picks him up or drop him off in the front yard of the house. This is a big change for Will. This is a big change for me. This is a big step forward.

While we were standing at the bus stop, I realized that this bus stop was just for Will as it was just the two of us standing there and waiting. We also saw lots of kids from the neighborhood gathering across the street from us. They were kindergarten-age students... I saw their proud parents taking pictures, talking to other parents, laughing, and being proud of their little munchkins. As I was watching them, I found myself wishing that we were on that side of the street... Wishing that Willie and I were part of that group.. Wishing that we were all talking amongst ourselves and our kids back and forth, full of excitement and hope. As I was thinking about it, I looked at Will and saw that he was happy to be just where he was. I also realized that while we were standing at the bus stop by ourselves, which felt a bit lonely to me, what really mattered was that Will was going to the same school as those kids, with the same goal to learn and be the best he can be.

Then a school bus appeared out of nowhere, stopping at the stop across the street. So we watched those excited and a bit scared students getting on the bus, as their parents kept snapping those unforgettable milestone photos. Then the bus left, and the parents slowly walked back to their houses.

Our bus still was not here.. Our bus was late.. Will started to get anxious.. I got anxious, too. "It's ok, Willie.. Our bus is coming.. It's just running a bit behind. I promise you, it will be here any minute now. "

Our bus was 30 minutes late.. But, it came, and that's what mattered. When the bus stopped, Will quickly grabbed his back pack and hopped on the bus with excitement -- I didn't even get a good-bye hug. :-) It's ok, I don't blame him a bit -- he had been waiting for a long time for that bus, so he was ready to go.

As I walked back to the house, I couldn't help but feel overwhelmed with pride and joy. My boy was on his way to his first day in kindergarten, on a school bus. With all of his sensory and anxiety issues, he waited patiently for his bus for 30 extra minutes, then he was still excited to ride the bus by himself, and he even remembered to take his back pack as he was running towards the bus.

Autism forces us to take a different route to most places in life.. Yet, what matters is that we all have the same destination - learn, excel and become the best we can be.

Unconditional Love..

2011-08-26T09:52:00.005-04:00

(Courtesy of Chris Derecola, Dirty Martini Photography)

Three Days Before the Virginia Earthquake...

2011-08-25T13:00:00.002-04:00

A Moment in Time....

2011-08-24T10:51:00.003-04:00

We Did It!

2011-08-22T20:36:00.008-04:00

"It is often said that it is love that makes the world go round. However, without doubt, it is friendship which keeps our spinning existence on an even keel. True friendship provides so many of the essentials for a happy life – it is the foundation on which to build an enduring relationship,it is the mortar which bonds us together in harmony, and it is the calm, warm protection we sometimes need when the world outside seems cold and chaotic. True friendship holds a mirror to our foibles and failings, without destroying our sense of worthiness. True friendship nurtures our hopes, supports us in our disappointments, and encourages us to grow to our best potential. This couple came together as friends, they pledge to each other not only their love but also the strength, warmth and, most importantly, the fun of true friendship."

Trip to Chincoteague Island, VA

2011-08-04T17:04:00.000-04:00

A few weeks ago, we ventured off to the Eastern Shore of Virginia... We had multiple reasons for going, including checking on our house that we currently have rented out. But, frankly, we just wanted to get away from the DC area for a few days for some good seafood, the beach, and new experiences.

In preparation for the trip, I researched local hotels and restaurants on yelp.com and tripadvisor.com. A good friend of mine is a die-hard yelp fan and contributor, so I figured I could trust those reviews to be my guide for local food gems and things worth seeing.

Well, Yelp, I must say, I am disappointed.. Maybe my standards are too high, but, when I see a 4.5 stars rating, I expect the place/food to be above average. That didn't happen more than once, so I am going to write my own reviews... And, yes, I will make sure that they make it to Yelp as well.

Waterside Inn, Chincoteague, VA
My favorite things about the hotel were the incredible view of the Chesapeake Bay and our neighbors - the ducks. I felt like they were our pets - they were just outside our patio, doing their thing, walking, swimming, sleeping.. Every time I went outside, there they were.. They couldn't care less about us, they were just living their quiet life. Those were my only favorite things.. The rest of it was average or below. The hotel definitely needs to be renovated, screen doors need to be replaced, central AC would be nice, too. Skip the hotel breakfast, if you can. Despite my morning hunger, I couldn't eat their food. Sorry, Waterside Inn.

Wright's Seafood Restaurant, Wallops Island, VA
This was the first restaurant of the trip, and it was great. I didn't come across it on Yelp, but Ed knew of the place because he used to live there. While the atmosphere and decor were dated (like most places in the area), the food was great, and it had a nice view of the Chesapeake Bay and the bridge to Chincoteague Island. We had awesome crab cakes and a divine chocolate meringue pie. Ed and Victoria had a particularly good time looking out the window and watching sea gulls trying to catch the fish in the water. So, my verdict is that I would definitely recommend this place if you keep your focus on the food and the view vs. the interior decor.

Sea Star Cafe, Chincoteague Island, VA
Everyone on Yelp was crazy about it for its gourmet sandwiches and great ocean view, so we went there.. Turns out, the place shut down its dine-in restaurant and only kept the take-out services. By the time we got there, they already closed (it was just after 7pm), so we didn't get to try it. Overall, kinda disappointing that the Yelp reviews were outdated.

Bill's Seafood Restaurant, Chincoteague Island, VA
Below average and overpriced. Skip it if you can help it.

Don's Seafood Restaurant, Chincoteague Island, VA
Average place, but has an awesome dessert selection. Definitely try their Smith Island cake.. It's incredible.

Bloxom Winery, Bloxom, VA
That's definitely the highlight of the trip.. What a hidden gem in the middle of nowhere. The owners are from Europe.. They bought the land in 2000, planted in 2001, and started making wine in 2004. The atmosphere is as if you are in some Italian province, they make home made pizza and bread, and the wine is good. Of all the places we visited on this trip, I recommend this one out of all of them, especially if you are wine lover.

Mr. Whippy's, Chincoteague Island, VA
Nothing special. Skip it if you are craving for something more interesting and local, like Island Creamery. The line there was so long, we decided to skip it and go to Mr. Whippy's.. We learned our lesson.

Saigon Village, Chincoteague Island, VA
Awesome, unbelievably awesome Vietnamese food.. I actually learned about it on Yelp, and everyone was rating it 5 stars. I agree - the food is incredibly tasty and authentic.

---------------------------------
Overall, we had a great trip. Considering that we actually brought our 4-month old Victoria with us, we were able to do a ton of stuff . I wish we could have stayed at the beach for more than 45 minutes, and seen the wild ponies, but, it would have been very hard to do with the baby, so we decided to skip it.

I think that what I loved the most about the island is that it is so unpretentious and genuine... And, while everything seemed to be dated by about 20 years, it had that one of a kind aura about it. We will definitely go back to Chincoteague next summer.

Rock of Ages

2011-07-24T20:59:00.006-04:00

For Ed's birthday, we got out for 5 whole hours to go see Rock of Ages at the National Theater in DC. The musical was great, the songs were all good old 80's rock, and the cast was incredible. We had an awesome time, but it felt like 5 minutes rather than 5 hours... We don't get out enough, if at all...

And, just to remind myself that we really did go out and I didn't hallucinate it, here's a picture of us in front of the theater... it was earlier today, but it already feels like a distant memory.

The end of an era

2011-07-19T10:52:00.017-04:00

Next week will mark the end of an era - the era of intensive, one-on-one, home-based, 15-hours per week ABA therapy for Will. Why? Because Autism insurance still does not exist for 99% of the population, and my AOL Cobra with Autism insurance benefit runs its 1.5-year course on July 30. Because the out-of-pocket monthly cost is ~ $3,300. Because we simply cannot afford it.

It breaks my heart. It makes me cry. It makes me frustrated. It makes me angry. It makes me sad. And, there is not a damn thing I can do about it at this time.

Our ABA era began in 2007, when I was frantically researching therapies for Will, suspecting that he had Autism. Everywhere I looked it said that ABA therapy is the only effective therapy to treat children with Autism, based on years of data and research. So, I found the nearest ABA-therapy provider, and it happened to be the Autism Learning Center (ALC) in Falls Church, VA. I used to live in Falls Church in early 2000s, and drove by the building where Autism Learning Center is located on a daily basis.. The irony of life, I thought... If someone told me then that someday I will be going to that building alone and lost, looking for help for my Autistic son, I think I would have probably lost it. As much as I want to know what the future holds, we are better off not knowing it.. It will be here when we are ready.

The owner of ALC is a dad of an autistic child himself, so he understood Will's needs. I remember when I first met Dr. Paul Glass, and how he encouraged me that everything will be ok, and that Will is going to get the help he so desperately needed... It was such a comforting feeling to talk to someone who was able to relate to your pain and needs and to give you hope. But, the chilling reality of it all was the therapy cost.. $3K per month.

I am forever grateful to my Dad, who sponsored Will's therapy for more than a year. He did it for as long as he could, or, perhaps, even longer. I am lucky to have worked for a company called AOL that elected to purchase a health plan with the Autism insurance coverage. I am grateful for the federal program called COBRA that allowed us to continue having this benefit even after I was laid off. I am grateful because the majority of Autistic kids are not this fortunate.

Our recroom in the basement is set up entirely around his ABA therapy sessions.. It has lots of books, toys, flash cards, legos, trampoline etc. etc. It stores years of therapists' work, documented in giant three-ring binders with daily behavior sheets, progress notes, potty training reports etc. etc. I can't look at them without getting emotional... It feels wrong for all of it to end now.

I am scared to think that he will no longer have any therapy... I am scared that he will wait for the therapists to come and he won't know why they no longer do. This is the life he's known since he was two, and now it's about to change.. again.

But, we do have a plan: Will is starting his ABA-based, full-day kindergarten next month. It's a small class (8 kids and three teachers). The whole classroom is divided into small cubes for different activities and sensory needs. When you walk into that classroom, you completely forget that you are in a regular elementary school -- it's 100% structured to tailor towards Autistic students. It won't be one-on-one, but it will be more than 7 hours of ABA-based training per day, with field trips and peer interaction. I am so happy that he will be in that class, and I am hopeful that he will be making lots of progress.

I hope that the change is for the best... I hope...

Mama Bird

2011-07-14T21:07:00.007-04:00

I have a new friend... She is a bird, a cardinal, and she has two baby birds. I came across her nest a couple of weeks ago, when I decided to trim my river birches, which had gotten out of control and were hanging over my neighbor's backyard. So, as I was about to start trimming away, she flew out of her nest, which she had built in a rose bush, right in front of the birches... That's a pretty good idea to build a nest in a rose bush, as the thorns on the branches actually helped support the nest when it got windy, I thought. Carefully, I peeked into the nest and saw two white eggs.

Another nest, I thought... Another life will go to waste because those eggs will probably be abandoned.. For some strange reasons, for the last several years I've seen many nests in my back and front yards, but, sadly, the eggs ended up either falling down or being abandoned. It really bothered me because I thought that somehow it was my fault. I know, it's silly.. Yet, why would those birds abandon their babies? What scared them away that they would not come back?

Last week we had a big storm... So big that I thought that some of my trees would be uprooted. I was really worried about the mama bird and the two white eggs in the nest. After the storm passed, I went outside and peeked to see if the nest was still in the bush.. It sure was, and she was sitting there, looking worried. I know, she is a bird and she always looks the same.. But, I could tell, I could just sense her worry because I am a mama, too.

Yesterday I peeked into the nest while the mama bird was away.. And, to my absolute delight, I saw two little fuzzy baby birds.. They were tiny, their eyes were shut, and one of them had a white worm in his beak, while the other had the beak wide open, waiting for the mama bird's food. As I walked away, she appeared with a worm in her beak.. And, as soon as she flew into the nest, the babies started to squeak as if excited.

All of it reminded me of Victoria.. I am proud to say that I still nurse her and breast milk is still the main item on her menu. Nursing her (and Will years ago) is the most incredible, magical feeling that I cannot describe. When I nurse her during the day, she is distracted and wants to see the world vs. face the breast... So she rushes through her feedings, just to get enough milk not to be hungry. But, at night, when she is hungry, and only half awake so her eyes are closed, she opens her little mouth just like the baby birds, breathing with excitement and impatience, looking for the breast. Night-time feedings are difficult for me because I want to go back to sleep as soon as possible, but she loves them and certainly takes her time... It's the best food, it's mommy's warmth, it's safety, it's comfort, it's love. And, even though I am exhausted, I would not trade it for the world.

I love having the mama bird and her baby birds in my back yard. I feel like this is a good sign and a new beginning.

Taking a minute...

2011-07-08T11:39:00.005-04:00

It's been insanely busy.. It is going to get even more busy. I have a few posts in the works but only if I had time to finish them.. I will though, I will make time for it somehow.

In the meantime, in between a million things, I am taking a minute to post these photos.. It's a milestone.

... a picture worth a thousand words ...

2011-06-20T21:40:00.007-04:00

Pre-K Graduation

2011-06-15T13:37:00.020-04:00

Three years ago, my boy entered the Newton Lee Elementary School in Ashburn, VA for the very first time. He was a new student of the generalized Special Education pre-school class, and just 2 1/2 years old. His dad got him a red L.L. Bean backpack, which at the time was almost as big as Will. Will was scared and couldn't understand why he had to go somewhere with the people he didn't know.. Will was crying.. Will was trying to escape and be with his Mommy... But, the teacher took him by his hand and walked him to the classroom... While Will was terrified, I was torn between being proud of him for going to school and worried for how he'd do there without me...

And, he did it! He made it through his first day just fine :-)

And, today, Will graduated from preschool. We've had a long and interesting journey, learned so much along the way, had great teachers, speech and occupational therapists, assistant teachers etc., who have given Will an immeasurable amount of love, attention, and dedication.

Today, I am also proud and excited to say that Will is going to continue to attend this school in the new year, but as a kindergarten student in the ABA-based Autism classroom. We are very fortunate that he was able to get in, and I have much hope and optimism for his progress in the new year.

Congratulations, Willie! We love you very much!

Congratulations, Ed!

2011-06-04T21:40:00.014-04:00

It's official! Ed passed his finals and is ready to graduate with a Bachelor's of Science in Electronics Engineering! It was not an easy road as Ed did most of the studying while serving in the US Navy and working full time.

But, it was even harder to plan a surprise graduation party for him because he is so observant and notices any minor change in my behavior. But, I pulled it off! :) Ed was surprised, the party was great, and the time with family, including Ed's sister Tammy and her husband Matt and their two boys, was wonderful! The event also coincided with Pop-Pop and Tammy & family meeting Victoria and Will for the first time, so you can just imagine the attention they got. It was truly an unforgettable weekend.

Congratulations, Ed!! We are all so proud of you!

Imagine

2011-05-19T14:56:00.013-04:00

We use our imagination every day... For instance, we daydream that we are not in the office but away on vacation or home, doing whatever it is we love doing... We even imagine the things that never happened because somehow it justifies our actions. We imagine because that's just what we do, that's how we are wired... It all starts with pretend plays when we are kids, when your imagination has no limits and you believe in Santa Clause and Cinderella, and that Disney World is the most magical place on Earth.

Now imagine living in a world of directives only... Where you are told what to do, and you follow a specific set of routines with minimal deviation. That people talk to you in a way that can only result in a "Yes" or "No" response, and there are no open-ended questions... Imagine that you live in a world where even if you had any imagination, no one would be able to understand it, or relate to it, or even know what it is. Imagine that you live in a world where you are different, very different from everyone else.

That world is Autism. My son has Autism. And, recently, it occurred to me that I've never had a real conversation with Will, and he is 5 1/5; that I stopped asking him questions that I know he won't give me an answer for; that I do not ask him what's on his mind because he won't tell me; that I've never had a Xmas list for him; that I never really know what he is thinking or... imagining.

Just because we do not know what someone else is feeling or thinking or imagining, does that mean we should stop asking? Naturally, the answer is no, but it's so easy to forget and fall into a routine of directives, predictability, and 'yes' and 'no' questions.

Tonight, I will ask my son how his day was, what he imagined, and what he looks forward to. I know that I won't get an answer, but I bet you all the money in the world that I will get the most precious smile, a hug, and a kiss... and I will imagine that someday he will be able to tell me.

In the last 12 weeks...

2011-05-09T09:13:00.001-04:00

- I became a Mom for the second time after giving birth to the sweetest, most adorable little girl, Victoria, who is extremely observant, has a full head of brown hair, looks just like her paternal grandmother, and has the most contagious smile I've ever seen
- I went through and recovered from a c-section surgery
- I lost 31 lbs
- I hosted my mom (a.k.a. "Bahbbi") for 2 months to help with the new baby
- I hosted my mother-in-law to be (a.k.a. Grandma) for one week to help with the new baby
- I signed up for boxing/kickboxing and am loving it. I even have my own set of ladies boxing gloves
- I drove 1.5 weeks after the surgery against the doctor's orders
- I almost lost Will's COBRA insurance and, consequently, the ability to pay for his therapy through the end of this summer... ALL MY FAULT
- I spent 48 hours agonizing over how I was going to get his COBRA back, crying and hating myself... But, I got it back!
- I was threatened to be sued
- I got a lawyer to help me fight for my son's well-being
- I was served by the local sheriff's department
- I had to fire someone I care about
- I had to fire someone who made Will look like someone he is not
- I hired someone who I hope is going to give Will what he needs
- I've been nursing Victoria 99% of the time, every 2-3 hours. If you do quick math, it's about 800 times, 15-20 min each, totaling to ~240 hours or 10 days..
- I've started taking my daughter to daycare, which has been hard on me
- I've been working from home part-time just two weeks after giving birth, and full-time as of last week
- I used to hate hot pink... I love it now because my daughter looks so good in it
- I deactivated my Facebook account because I wanted to take a break from it. It only lasted one hour because three of my closest family members called me asking if I unfriended them. I re-activated it because I didn't want everyone else to take it personally
- Victoria, Grandma, and I got up at 5am to watch the Royal Wedding live. It was one of the best family moments I've had in a long time
- I saw that Will loves his step-brother, Jordan
- I realized that the purest love of all is my love for my children. I could never love anyone more than I love them
- Will started to call Victoria "Teeta".. Maybe that's how he hears it when we say it?
- When I talk to Victoria and see her smiling and cooing back at me, I get a strong desire to have another child.. another girl :-)
- I've gotten used to being home
- I am going back to the office tomorrow

Why Do I Blog?

2011-04-19T21:50:00.007-04:00

It makes me think and put things in perspective. It helps me understand my own thoughts and feelings.

It's therapeutic. It's similar to playing the piano and composing music because you still use your fingers and a keyboard to express your mood and thoughts. And, while no one can hear you play the piano when you are in your home, the blog audience is unlimited.

It's as personal as you can imagine since I blog about things I often could not speak about, yet it's more public than I'll ever know because I share it with everyone in the world.

It gives hope... the only reason I started to blog 2 1/2 years ago is because Will was diagnosed with Autism, and I was alone and scared. Autismspot.com was the place I visited to feel supported because it made me realize that I was not alone... that there's hope... that things will get better... or, that maybe I'll just learn to deal with it all. I am grateful for it and many other sites and bloggers who share their life stories.

It's uniting... it makes me feel like the whole world is one big village called the Internet, and all of us are the Internet citizens sharing our stories and lives through blogs.

It's me time - I am alone with my thoughts... and it's fun because I get to tell a story.

Here and Now

2011-04-02T11:15:00.002-04:00

I have a small picture in my bathroom that says "Life is not about waiting for the storm to pass... it's about dancing in the rain." I look at it every morning, every day, every night. The saying helps me quite a bit as I am one of those people who constantly try to live in the future. Be it good things that I look forward to or bad things that I am terrified of, I tend to spend too much time thinking about what's going to happen some day.

I am a planner by nature, and planning usually means planning for the future. Unfortunately, it's natural for me to forget sometimes that while planning is important, things may change, and all we really have is here and now. And, things do change all the time...

Having a child with Autism naturally forces you to worry about the future... How's Will going to be when he is a teenager? Will he get along with his little sister? What is going to happen when he figures out how to unlock doors and fence gates? What if he takes off one day and not look back? What will I do then? Where will he go after he graduates high school?

Constant questions from relatives and friends, such as "Is he doing better? Is he making progress? Will he recover?" still upset me a lot even though I try to never show it. I just try to give a quick answer like "yes, he's doing well, but he still and will always have Autism." I think that the reason it upsets me so much is because deep down, my heart bleeds from the fact that he has Autism, that he is mostly non-verbal, that I can't tell what he is thinking most of the time, and that he can't make friends etc. etc. Even though it's been more than 2 1/2 years since his diagnosis, I still struggle with it. I struggle with it because I don't know what his future holds, so all can do is plan... Planning makes me feel like I have some sort of control over it, when in reality, I don't. All I can do is help him use all possible resources available for his development, but, beyond that, that's pretty much up to God or Universe, whoever is in charge of it all.

The same approach applies to everything else.. personal relationships, work, everything. My mom always reminds me of the saying "God laughs at us when we make plans." I tend to believe it to some extent; basically, it means don't overdo it as the only sure thing we have is here and now.

Welcome, Victoria!

2011-03-25T14:27:00.005-04:00

Our little princess was born on 02-22-11 (cool date, isn't it?) Life is crazy now with everyone adjusting to this big change and very little sleep. Hence, this post is very short. :-)

on being pregnant...

2011-01-14T09:40:00.000-05:00

These days, I find myself out of breath just from having a work-related phone conversation. The idea of multitasking, which, typically, is second nature to me, is simply daunting. I've stopped making lists for myself because it's frustrating to see how I fall behind behind on most things; even cooking and talking on the phone at the same time, which is not even considered "multitasking" in my book, is now a thing of a recent past.

I don't remember how it was when I was pregnant with Will, but, I think that maybe my job was less demanding then. Or, maybe getting five years older does make a difference in pregnancy, even if you are still in your mid-thirties. Or, raising a 5-year-old with special needs while being pregnant with your second one makes you feel completely spent. Maybe it's all of it.

"You need to slow down," says my doctor. High blood pressure is an issue, and, while daily medication helps control it, any level of stress causes it to go up again.

"You need to control your moods," says my doctor. Damn, I want to be able to control my moods, too! But, pregnancy-induced mood swings and "being hormonal" is how I seem to roll these days, and it's extremely frustrating.

Yesterday, I had a 4-hour commute -- 2 hours each way. Driving to North East DC during the rush hour is maddening and exhausting, and then you've got to squeeze 8 hours of solid work into a 6-hour day with people constantly asking questions, pulling you into meetings, well, you know how it is. Typically, I thrive in a fast-pace environment, especially when I see new opportunities and ways to make things happen. Yesterday, however, while giving a presentation at work, my acid reflux kicked in, I had to cover my mouth in fear of throwing up right there, in front of everyone. After the meeting, I went to my desk and felt my socks "eating" into my legs.. I looked -- my legs were swollen pretty badly, which is common in pregnancy, but it's still very uncomfortable. All I wanted to do then is lie down, surround myself with large, soft pillows, close my eyes, and take a nap... Instead, I had to face a 2-hour commute back home.

So what keeps me going? My home life... I love my home, Will and Ed, and everything around us. We have many challenges, sometimes it seems like too many, but we always find a way adapt and overcome. It's the little things, like seeing Willie's beautiful smile when I put him to bed at night, or him enjoying saying "the end" at the end of every book that I read to him.. Or, Ed giving Will "piggies" and Will laughing really hard and then chasing after Ed asking him to do it again and again. Or, it's us watching "Two and a half Men" after Will goes to bed and catching up on the things that happened during the day. But, it's also the big things, like Ed working hard to make sure that we are financially prepared to face a few months of unpaid maternity leave. (I will dedicated a separate post on the fact that the US Federal Government does not have a paid short-term disability or maternity leave.)

Such is life these days... People ask me frequently how I felt when I was pregnant with Will, and I honestly do not remember. I really think that Mother Nature erases those memories from your brain so that you could go through this again :-) Hence, this post is mostly for me, so that I can remember how hard it was to do it all while being pregnant.

Happy Birthday, Willie

2010-11-03T10:11:00.023-04:00

- Perfectly You -

On the day you were born
You were perfectly you
On the day you were born
Love was all that you knew

On the day you were born
You were joyous to live
On the day you were born
You had so much to give

On the day you were born
You were one with God's voice
On the day you were born
The angels rejoiced

On the day you were born
No one could know
All the beautiful gifts
You were here to show

On the day you were born
I wish I had known
The glory life has
When only love is shown

On the day you were born
And every day after
I would have loved you completely
And filled you with laughter

On the day you were born
I just didn't know
But from this moment on
I want you to know

How much I love you
And how precious you are
And how sorry I am
If I've dimmed your "Bright Star"

On the day you were born
You were perfectly you
And every day since
You've been perfect too!

(c) Kimberly Sauter All Rights Reserved

Walk for Autism Now

2010-10-21T10:51:00.005-04:00

As part of the Autism Awareness Month last year, I put together a video of Will to share a little bit of our personal story along with the facts on how much Autism affects children in the US and around the world. As I am preparing for the National Walk for Autism Now on November 6, 2010, in Washington, DC, I am re-posting the video here, on my blog.

Autism Awareness - April 2009 from Marina Tuttle on Vimeo.

The good news is that Will is making progress, thanks to the ABA therapy and the work of his teachers and family. The sobering reality is that we have a long, long way to go.

Please join me, in any way you can, to help raise awareness and fund Autism research to help Will and millions of others with the disorder.

Thank you.

http://www.walknowforautismspeaks.org/national/will

routine has left the building...

2010-09-09T07:34:00.007-04:00

Pregnancy is a confusing thing for many reasons. Truly, it is a miracle more than anything else for obvious reasons. Yet, for some of us who live with the morning sickness that lasts all day for the entire duration of pregnancy (plus all the hormonal changes and mood swings), it's an exhausting test of your physical and mental abilities, your relationships with everyone around you, and, basically, your entire life as you know it.

For those who are routine-driven, like myself, it's even more of a challenge as there seems to be no way to establish any sort of a routine. For example, one day, unexpectedly, the foods you've had for two weeks and that did not upset your stomach will make you sick.. really sick. So, there can be little planning ahead and there's no buying in bulk and stacking up the shelves -- you just don't know what you can and cannot eat until you test it, but even that may not last. And, your favorite pre-pregnancy foods? Forget about it. My brain and my body are no longer on the same page: while my brain is still fighting (but losing) for Independence and freedom of choice, my body seems to have its own secret agenda, and there's no compromise.

So, what to do? Not much.. just keep on going. Keep testing the system and dealing with the consequences. And, don't get ahead of yourself as it's much worse when you get your hopes up on the day you feel good, go to a good Vietnamese restaurant and enjoy a bowl of pho, and then pay for it for two days. So no Vietnamese food, no Chinese food, no Indian food.. the list has been getting longer each day for me. And, now even peaches -- my safe choice of fruit -- are on "that" list. The good news is that eggs are still ok. If eggs go, I don't know what I will do.

Well, I guess this is one of those posts that perhaps I should have kept to myself.. But, just maybe, others are going through a similar experience... And, if they come across this post, it will help them feel like they are not alone. After all, isn't that why we share in the first place?

life is a gamble?

2010-08-23T14:58:00.018-04:00

Life is an interesting thing and it never stops surprising me. Be it good times or bad times, I've always tried to find some bigger meaning behind everything that happens to me or around me. However, three years ago, while going through divorce and Will's diagnosis of Autism, I started to think that maybe life and things in it are sort of random. I say "sort of" because in many cases, you can see the "signs" and analyze the past to arrive at a logical conclusion of why things are they way they are. But, in the case of Autism and divorce, when it came down to the two people I loved so much and shared my life with, I guess my brain just couldn't explain why everything fell apart.

But, little by little, with the help of many good people, I was able to accept my new life. Moreover, I started to enjoy it and be proud of it. But, did I find a logical explanation for the things that had happened? Not entirely. I did go back in time and "saw" the signs for divorce, but my faith in my then spouse and his proclaimed unconditional love and devotion made me blind, and, ultimately, compromised my judgement and actions. Did I find an explanation for Will's Autism? No. And, frankly, I stopped looking. Instead, I started to learn to accept that certain things happen just because.

I try to manage every aspect of my life and plan every second of my day, and it does work for awhile, but then, when I expect it the least, things change. And, when I analyze it and trace it back a few years, I am in luck if I see the signs that eventually got me where I am today. But, otherwise, I am left with the "well, sometimes things just happen and all you can do is accept it and make the best of it" explanation.

Life being a random thing is a scary concept. Anything random is scary to me, which is why I do not gamble or play lottery of any kind. Lately though, I've been thinking that maybe life is a gamble... So, the natural question is how do I play the game and win when there are no clear rules? The only thing I can think of is to go with my gut (which got me in trouble before) or take a calculated risk (which is still a risk!), and then hope for the best.

Scary business.

on making history...

2010-08-11T11:55:00.017-04:00

Some 13+ years ago, when I decided to immigrate to the US (with the encouragement of my parents), I knew that I was making history in my little world. My family is very small and very much localized: with the exception of some relatives living in the Ukraine, my roots are deeply planted in the town of Nizhny Novgorod. Needless to say, a move of such magnitude was more than a big deal to anyone in my family, including me.

I don't know what I was thinking during the time of the immigration, but I know I was excited and determined about the opportunity and the challenge of doing it all on my own in a foreign country. At the same time, I was also incredibly scared... When my dad bought me that one way ticket from Moscow to Chicago, it hit me... I cried from that point forward and did not stop until I finally went through the INS in Chicago. I will never forget my dad's words as I was leaving: "Marina, treat it like business. Get your education, try living there, try getting some corporate experience. If you don't like it, come back. You know that we will always be here for you. But, by then, with your acquired experience, you will have been indispensable here in Russia or anywhere in Europe. You have the opportunity that none of us ever had, so take it." And I did.

For some reason, the upcoming departure from my current job to join the US federal government as a government employee is giving me that same, familiar feeling that I had 13 years ago.. It is like I am making history for my family once again. Growing up in a military family taught me to have respect for governments and, given the history between Russia and the US, I am even more privileged to now become a part of the US government and try to make a difference for the country that has become my second home. Growing up in the eighties in the former Soviet Union and being a daughter and granddaughter of the men who dedicated their careers serving Russia in the Russian Army, never in a million years did I think that someday I would be working in the US government.

The timing for the job change could not be worse for the reason I cannot speak to at this time. However, just like my dad told me 13 years ago, this is a unique opportunity that many wish they had and I have it, so I've taken it. I know that it won't always be easy, but I guess it never is easy when you go off the beaten path and make your own history.

keeping it under control

2010-08-05T11:24:00.010-04:00

How do you keep your life under control when the things that make up your life seem to have their own agendas? If you know the secret, please let me know as you will save me from years of self-imposed stress and frustration.

For me, personally, to feel like my life is under control the following things must be present (not in any specific order):
· Bills get paid on time
· Work gets done and, at least 50% of the time, exceeds expectations
· Will is doing well and, if not making progress, not showing signs of regression
· My loved ones in the US are healthy and go about their business, as expected
· My loved ones in Russia are healthy and go about their business, as expected
· My house is clean and neat
· And, maybe, just maybe, I get a little bit of time to travel, use my camera, and do some post-processing (which can easily take me hours, if no one pulls me out of it).

So is this Utopia? Maybe, but that doesn’t mean I won’t strive towards it. So, what are we to do when half of the things mentioned above are not where they are supposed to be? “Just relax and don’t sweat the small stuff”, I hear. What if it’s not small stuff to me? What if having a spotless house makes me feel like at least in my own micro world, things are under control and in order? What if having my manicure and pedicure done makes me feel like I am still a woman, not just a constantly producing machine for whatever it is I am supposed to produce, be it work deliverables, paycheck, life style maintainer, a mom etc. etc.

Naturally, when I am stressed, so is everyone else around me. Will, especially, feeds off my energy. Since he cannot really express it to me through words, it manifests itself through sleepless nights, high stims, and, well, regression in his behavior. So it’s a vicious cycle.

Since I don’t have the answer to how I can keep it all under control, I am thinking about starting doing yoga. My doctor recommended it given my insane high blood pressure situation. Yesterday, I made the first step and invested into my first yoga DVD. Needless to say, I have high expectations.

I am also thinking that I need to blog more… The challenge is that when you write for living (even if it is dry, technical writing), the last thing you want to do is to write more after work. It’s kinda sad because I love to write, but staring at the computer screen all day trying to find ways to say something in a way that different audiences understand is not easy, and it just sucks out any desire to even go near my computer at home.

Photography… I need to do more of that, too. But, the question is when? There are days when I feel like having hobbies is a luxury, and you put yourself last so that your kids and employers get the best of you.

Maybe this is the price I pay for trying to have it all. That’s fine, as I don’t mind busting my ass to keep on trying. I just wish someone wrote a manual on how to keeping it under control.

i'm back... or am i?

2010-05-27T13:01:00.002-04:00

It's been awhile, hasn't it?

Happiness and Powerpoint?!

2010-03-09T19:59:00.015-05:00

According to Forbes.com, I live in the richest county in the US -- Loudoun County, Virginia (population: 277,433; median household income: $110,643.00). Ooooh.... big deal, eh?

Not really. More like the opposite. All the research done over the years on money and happines showed that while money is a factor when it comes to happiness, it is also a factor when it comes to unhappiness... Funny how that works.

To make more you have to work more. More hours away from home and family. More hours on the phone with people you don't care about. More hours wasted on commute. More hours staring at the computer screen, stressing about deadlines, agonizing over office politics, or worrying about job safety - you get my point. Gradually, your job becomes your life vs. an earned paycheck, and the tiny bit of time you actually do spend with your family becomes more of a facade and a check box (I did it!) vs. being an essential part of your life.

People think I am a natural workaholic because I like to work and I work a lot. The truth is, I am not... I am just responsible and laser-focused on getting stuff done, and I want to get it all done between the hours of 9 and 5. I can't work after 5 because I have a child who needs me. I don't want to work after 5 because I want to relax, have a glass of wine, flip through magazines, and make a delicious dinner for the people I love. I also love to read... I need books in my life... Sometimes I go months without reading for pleasure and it starts to slowly suffocate me. I also love to write, and I really haven't been blogging as much as I would like to. I also love photography.... and gardening, cooking, travelling, and spending time with my son and helping him overcome obstacles one little step at a time.

Life is too short to spend all of it on power point presentations. So, do I work after 5pm? No, I don't. But I do get back on my computer at 8pm, when my son goes to bed, and work for hours until I can no longer keep my eyes open.

Does living in the richest county in the US make me proud? Hell no -- it makes me question why we live here. It makes me want to move as the pressure of having to work more hours will continue to rise.

When it snows, it blizzards.

2010-02-16T13:07:00.019-05:00

You think I'm talking about the 75 inches of snow that we got in Northern Virginia in the last few weeks? Well, while it certainly has something to do with the post, it isn't the main reason for it, so keep on reading.

2010 came into my life with a blizzard of changes:

1. January 11, 2010: Will's new nanny start date. As you can imagine, a new caregiver for your kid means LOTS of changes and adjustments, even if the nanny is good (which she is).

2. January 13, 2010: I got laid off from AOL. In the 10 years of my professional career, I got laid off for the first time ever, after having worked for AOL for almost 6 years. I didn't see it coming, but came and hit me in the face.

3. Losing my job would not have been as traumatic if it hadn't been for the Autism Insurance benefit that Time Warner/AOL started to provide last January. Since only a handful of companies in the US offer Autism Insurance, being laid off from AOL also meant that Will's daily ABA therapy would have to be discontinued -- there is just no way I can afford to pay $3,200 per month to cover the cost of the therapy. So after some back and forth with the AOL HR and COBRA people, I got really great news that AOL COBRA actually covers the Autism benefit for the maximum of 15 months! Moreover, since I got laid off, it would only cost me $288 per month to have medical insurance for both of us, Autism benefits included. You can imagine how happy I am about that.

4. January 27, 2010: My first day at a small business company as a director of client services. Basically, I got a new job 2 weeks after getting laid off from AOL, and now I work exclusively from home. It's a big change from working for large corporations during the last 8 years of my career... Although it's been super stressful and insanely fast-paced, I have to give it more time for things to sink in and for me to adjust to a different work style before I can decide if it's the right fit for me long-term.

5. February 1 - 11, 2010: two blizzards in a row (now I am talking about the snow).. record snow fall since 1800s? A $600 investment into a monster snow blower? Are you kidding me? Now couple THAT with closed schools, canceled therapy, nanny unable to drive due to the snow and yours truly still having to do work because I work from home. Yeah, I am complaining.

6. Last but not least, I met someone special a few months ago, who has become a big part of my life in a very short amount of time. It feels wonderful, exciting, scary, overwhelming, different, too good to be true, and really confusing all at the same time. Makes sense, right? :-) Either way, I would not change one thing and I hope for the best.

Life is truly an amazing and unpredictable thing no matter how you look at it. And it's true -- if it doesn't break you, it makes you stronger. So here's to being strong!

First Day of Snow

2009-12-08T10:11:00.001-05:00

First Day of Snow
Originally uploaded by marina.tuttle

I hope my rose bushes survive the heavy snow and ice we got yesterday. Some of the branches were completely frozen and stuck to the ground, and a few of them weren't able to handle the weight of the ice and broke. Boo hoo. :-(

Chateau de Sancerre 2007

2009-11-28T18:32:00.016-05:00

A couple of weeks ago I was shopping at Costco (mainly for diapers and wipes), but, somehow, found myself in the wine section (I always manage to do that). It being a holiday season, I decided to treat myself to some new wine. Typically a Pinot Grigio drinker, I recently switched to Sauvignon Blanc (Pinot Grigio was getting a bit too sweet for me). So I picked up a bottle of Ch. de Sancerre 2007, Sauvignon Blanc from Loire, France.

Before I go on, I have to give you some quick background on my relationship with French wines.... When my Dad came back from France a few years ago, he told me to never buy French wine unless it is at least $50 a piece. Why? Because according to him, French wines below that price are garbage. He claims to know that because he took a few tours of wineries in France and knows "the business." So ever since I've been buying local (US) or Italian wines, and stayed away from expensive French wines that would certainly break my budget...

.... until about two months ago. My mind was changed thanks to the RSS feed from wine.com and the numerous articles and reviews of excellent and affordable French wines. (My Dad doesn't know about it and I plan to keep it that way for now.)

Anywho, back to Chateau de Sancerre... I got a bottle of 2007 Sauvignon Blanc ($19.00 per bottle), brought it home and tried it that same night. And I was blown away. So clean and crisp, so light and elegant, I can honestly say that I could drink it all night and enjoy every bit of it. This wine is like your favorite purse that goes well with anything.. and yet, people always compliment you on it. Seriously, try it, especially if you are a white wine drinker. It will become one of your favorites, I am sure of it.

Cheers!

Why?

2009-11-20T19:12:00.023-05:00

Because. It's really that simple. Sometimes it's logical, sometimes it isn't. Sometimes it's predictable, sometimes it isn't. Sometimes patterns of behavior make a good projection for the future. And, sometimes, patterns are just patterns. Do what you believe is right and let the rest go.

---------------------------------

Do we think too much these days? Never used to think that thinking in any amount is a bad thing... Lately though I've been wondering if ignorance is truly bliss.. I've always been a why person, so I have to know why things happen the way they do. Moreover, I have to be able to understand the logic behind it. So, when things don't go the way they "should", or illogically, my brain gets lost.

I tend to ask a lot of why questions about life and why things happen the way they do very openly. And, occasionally, I hear things like "you should go see someone/talk to someone," referring to me going to see a therapist.

Why is it that almost every person I know either has a therapist/psychologist/psychiatrist, and/or taking anti-depressants? Are we all really that screwed up? Or, do we have too much to deal with? I don't remember my grandparents having therapists or taking anti-depressants... and they lived through wars and poverty. So, did the world change or did we change it by having wanted more and more and not being able to handle it once we got it? Or, did we just get weaker and spoiled, and would rather pay a trained psychologist to tell us how to make/keep us happy?

Is it because we have the luxury of time and money to study ourselves in an attempt to "figure ourselves out"? Are we really that mentally lazy or incapable that we need a stranger to tell us about us? Why is it that the closest people to us like family and friends can no longer serve that role and we have to hire a consultant to help us? How can life be simplified to the point where we no longer feel the need to hire a third party to help us make sense out of life?

Maybe I should ask a therapist.

Not so bad after all

2009-11-16T19:48:00.021-05:00

Willie turned four a couple of weeks ago. As part of his birthday present, I brought him to AOL to check out where mommy works and to have lunch at our cafeteria. He loved all of it and really didn't want to go back home. His nanny told me that he cried all the way home and even after he got home... I wonder why I don't cry when I get home from work everyday? Maybe I am missing something...

Two weeks ago I also went to see a family doctor. Then I got meds. And now I am doing much better. It feels good to actually write that and feel that. It's been several years since I've felt this calm, collected, and just myself. I didn't realize how much I missed that feeling. Even the bronchitis I've been battling for the last 1.5 weeks can't change how good I feel emotionally. After the years of stress, heart break, turmoil, and the most brutal emotional boot camp, I finally got a break.

I am really looking forward to the holiday season. I've already started my Christmas shopping and have been brainstorming Christmas Eve/night menus. My mom is coming to stay with us until the second week of January, so that should be interesting. My mom's visits are always interesting. Oh, the three of us are going to Williamsburg, VA for a few days and hang out at the Great Wolf Lodge. It's a huge indoor water park, and I only heard great things about it, so we are doing it. I am sure that trip will become its own blog post.

Work's been busy... AOL is going through a lot of changes and we are all trying to move fast and stay relevant. It's refreshing to be part of a quickly changing environment, so I am hopeful that we/the company are off to some interesting times. And that's all I can really say about it here.

Last week I met up with one of my closest friends from Russia, Tanya, who was in DC for 1.5 days for work. Mainly due to my annoying bronchitis, I only got to see her for about an hour. She also had a package from my mom (a bunch of medicine you cannot get in the US w/out a prescription, like ear drops, dammit) and a big bag with my favorite candy - Mishka Kosolapy. I never asked her for the candy, so I was moved that she remembered my favorite candy after so many years and brought it for me as a surprise. It's the little things...

I haven't done much reading or spent any time doing photography stuff lately. I think I am just resting from these hobbies and gaining strength to turn back to them when the time is right. At the same time, I have been doing a lot more cooking and enjoying it immensely. I even gave up Panera for my home-cooked "melty" sandwiches.

So overall, I am happy to report that things are not so bad after all... :-)

Hello, hypertension

2009-11-04T20:57:00.003-05:00

I hate doctors, medicine, pills, hospitals, and everything related to that. Well, maybe except for the Discovery Health channel, which I love to watch.

But, it turns out I’m no robot after all. I am pretty disappointed with myself, I must admit. I thought I could take on any amount of stress, deal with it, shake it off, move on, and be as good as new. Right?

Wrong.

In the last few months, I’ve been waking up with headaches even after 8 hours of sleep (which is rare, but still). And, sometimes, the headaches last all day long… Moreover, any significant excitement (positive or negative) also tends to cause my head to ache later.

While I casually blamed the headaches on my life style and all the stress around it, gradually, this new ‘headache’ thing started to significantly affect my everyday life, and just wouldn’t seem to want to go away.

So a month ago my mom suggested I buy a blood pressure monitor. I listened (which is also rare).

I never really monitored my bp before, except for when I was pregnant with Will. My bp was high then, but I blamed it on the pregnancy, naturally. So it's been a discovery for me that my baseline blood pressure is high (above 140/100 first thing in the morning). Based on my bp logs of two weeks, I have hypertension, stage 2 (the last one).

Last Monday was a particularly stressful day for multiple reasons, and my blood pressure spiked to 190/110. I spent that night in the ER.

Tomorrow I have my first family doctor appointment to get additional testing and get on a bp medication. I feel like a grown-up now – I have a family doctor… Haven’t had one since I had a pediatrician back in Russia.

I don't know if this thing is temporary or I'll have to be on meds indefinitely. Honestly, I don't really care right now -- I just want to get my bp under control and the headaches gone.

My 2010 New Years resolutions list should be interesting…

You snooze, you lose.

2009-10-15T13:21:00.022-04:00

It's been a while since I felt the need to blog about Autism. Reasons: 1) I felt that for some time Will had been making progress, and life was becoming more "normal", 2) been busy with selling the house, then not selling it, then refinancing it and all the stress that came from that, 3) I generally like to blog about the things I love doing, like cooking, photography, music, travelling, and, of course, things I do with and for Will.

But, blogging about Autism is like cutting my heart out of my chest and giving it to the rest of the world to examine, under a microscope. It's that personal. And, it's that painful.

Last night was really tough. Will has a cold, so he coughed half of the night, and was finally able to fall sleep around 3am. At 5:45am, my alarm went off, as always, but, instead of hitting the 'off' button, like I always do (which makes a 'beep' sound), I hit the 'snooze' button (which produces no sound). At that point, I thought Will was completely asleep but, when he didn't hear the 'beep' sound, he went from a sound asleep stage to an absolute psycho melt-down stage in less than two seconds. He jumped off the bed and started running around, trying to push every single button he could find in the bedroom (vcr, tv, light switches etc.) in search of that 'beep' sound. It lasted about 30 min, and me trying to comfort and re-direct him was only making him more frustrated. Finally, I just sat there and stared into space, waiting for all of it to pass. Seeing my child be like this was horrible and, for the first time since his diagnosis, I realized that Will needs more help.

Since Will perceives the world and life around him as a set of patterns, any deviation from those has a disastrous effect. Naturally, the easiest thing would have been for me to reset the alarm and hit the 'off' button. But, you can't give into this ritualistic behavior because, otherwise, as you continue to feed the problem, he will continue to expect the same outcome.

A structured school environment and daily ABA therapy help him a lot with the issues of Autism, but I feel like now we need to do even more. I don't know what though, and I am afraid of what the doctors may suggest, since no one really knows how to treat Autism. I am and always have been against any sort of anti-depressant or anti-psychotic medication but, perhaps, it's time to put my personal convictions aside and take Will back to the Children's National Medical Center for a check-up.

"Sharlotka" (Russian Apple Pie)

2009-10-10T15:13:00.029-04:00

Autumn is my favorite season... The air is fresh and cool, yet it's still not too cold to sit outside with a blanket, enjoy a glass of good red wine, and watch the leaves fall.

Autumn is also the time for those of us who cook to do so more often -- it's the season of hearty soups, stews, rich casseroles, and pies.

Speaking of pies... I've been meaning to make Sharlotka (a common name for a Russian apple pie) for a few weeks now, and today was the day. The recipe is so easy, a caveman can do it (hehe).

Ingredients:

* 3 large apples (I find that yellow apples taste the best for this type of pie)
* 4 large eggs
* 1 cup of flour
* 1 cup of sugar
* 1/3 tspoon of baking soda
* 1/4 of stick of butter

Directions:

Peel the apples first, then cut/slice the them up however you like. I tend to slice them pretty thin, but that's a personal preference. Place the cut-up applies into a baking/pie dish, pre-treated with olive oil, butter, or PAM, to prevent it from sticking.

In a large mixing bowl, mix eggs, flour, sugar and baking soda. Once the batter is ready, pour it into the baking dish over the cut-up apples. Stick a few small pieces of butter into the batter in the pie dish (my mom's secret - "it will taste better"). Place the dish in the oven (uncovered) and bake at 375F degrees for 30 min.

Serve warm or room temperature. I like to sprinkle some powdered sugar on it when serving to make it a bit more sweet. Priyatnogo appetita :-)

National Symphony Orchestra -- Season Opening Concert

2009-09-26T22:29:00.021-04:00

A couple of months ago I was reviewing the Kennedy Center's repertoire for the current season, which is something that I've done every year since I'd moved to the DC area, and learned that the Center just created a two-year program called "Focus on Russia." I also learned that the National Symphony Orchestra's season opening concert was going to debut Evgeny Kissin, a world-known Russian pianist, performing Chopin's Piano Concerto No. 2. It was a no-brainer -- I simply couldn't miss it.

Tonight was the night, and I was really looking forward to it. When I walked into the Center, I was startled by what I saw: it looked like a black tie event and 90% of the women were wearing high-end evening gowns and up-do's. Don't get me wrong -- I've been to the Kennedy Center plenty of times before -- but I've never seen a crowd of this caliber. As I was going to my seat, I saw David Gregory and his wife & friends. When I sat down and looked up, I saw the former Secretary of Homeland Security Michael Chertoff and his entourage. I didn't recognize anyone else, but it was evident that this was Washington DC high society. At the same time, there was plenty of Russian talk in the air, so I felt at home, even though I was dressed like I was going to a business meeting.

The concert opened with Glinka's overture to "Russlan and Ludmilla." It almost made me cry -- every Russian knows and loves Glinka's music especially because of its folk nature. But, as much as I love Glinka, I was in complete awe of the the orchestra's performance: it was amazing, absolutely amazing. Tonight was the first time when I heard the National Symphony Orchestra live, and I was completely blown away by the musicians' mastership.

Later into the concert, Jozsef Lendvay, Jr. and orchestra performed Sarasate's Zigeunerweisen for Violin and Orchestra, and it was so beautiful. Oh my god, as his 1693 Stradivari was crying, so was I; it was impossible not to be moved by his performance.

After the intermission, it was Kissin's time. As they rolled out a concert-size grand Steinway, my heart started to beat faster. Kissin is two years older than me, but I remember back then, when I was growing up in Russia, he was already famous, and started to perform at a national and international level at the age of 12. But, I never heard him live until tonight.

I hyper-focused on Kissin's fingers for 38 minutes -- that's how long the concerto lasted. It was absolutely amazing. Not a single flaw, not a single moment of hesitation or lack of unison with the orchestra... he played the entire concerto by memory. Kissin was incredible.

The concert ended with Strauss' Danube. What a great way to finish the concert -- there's really nothing more relaxing, cheerful and beautiful all at the same time than Strauss' waltzes. Again, I was simply overwhelmed by how amazing the orchestra sounded.

During the entire concert, I kept thinking "Are my ears deceiving me? It's just absolutely perfect... all of it." It was a similar feeling to what I had back when we were in Spain this past summer, except there I was thinking "Are my eyes deceiving me?"

Tonight's concert was absolutely perfect. Bravo.

P.S. Often people ask 'Is there a real need for a conductor?' The answer is yes. Why does a football team need a coach? Individual musicians and football players are all talented and skilled, but they are only responsible for doing their part. You need a conductor/coach to bring them all together and give them a sign for when they need to perform. There's no orchestra w/out a conductor, just like there's no football team w/out a coach. Bravo, Maestro Ivan Fischer.

Hello, September...

2009-09-15T19:42:00.013-04:00

Much has been happening in the last few weeks, so I felt the need to document the highlights because I never want to forget any of it.

+ I joined a Fantasy Football league this year and was lucky to get my first pick - Adrian Peterson. I also just won week 1. This whole experience is turning out to be much more interesting and exciting that I'd expected, and I'm loving every minute of it.

+ I am still a NE Patriots fan and a proud owner of a football jersey with Teddy Bruschi's name on it. In fact, I am wearing it as I'm writing this post :-)

+ I turned 34. It was a very happy day.

+ Will's started his 2nd year of preschool. He has a new teacher who, I believe, is going to push him to achieve significant progress this year. I am psyched to have her on our side.

+ Will's ABA therapy has been increased to 5 days a week... So his day starts with preschool 7:50 am - 11:50am, and finishes with therapy 1pm - 4pm. No time for napping and, he's still only 3.

+ I put my house on the market on 9/8, and had an open house this past Sunday.

+ After looking at ~ 20 townhouses in the area, I found a community where Will and I are going to move to this fall. I love what I found, and look forward to calling it my home very soon.

+ I have three photography books on loan that I should have read by now, but I feel too tired to read anything.

+ I've been eating way too much chocolate and exercising way too little.

+ Work has been a challenge for different reasons, but I do the best I can not to let the small stuff get the best of me. But it still gets to me. :-(

+ I am grateful for all the help and support I've been getting from the people in my world during this hectic and stressful time in my life. I really wish my Dad would understand me better.

+ Will and I need to get on a better sleeping schedule that results in me getting more than 4 hours of sleep per night. I really should be sleeping now.

Thoughts on "Nineteen Eighty-Four"

2009-09-02T21:48:00.013-04:00

A few months ago, I was having a conversation with a co-worker about intellectually stimulating books. When I mentioned that I am always in the market for those, he recommended “Nineteen Eighty-Four” by George Orwell.

I had no idea what the book was about or what to expect when I first started reading it. About ten pages into it I had to put it down. There was a description of a war scene: a mother was screaming in fear, while desperately trying to save her small child from bullets and bombs flying at them. The description was so realistic and powerful that I imagined myself there... It then went on giving graphic details of the mother and child’s death. That was when I closed the book and accepted the fact that I couldn't handle it.

A week passed... I didn’t touch the book, yet it was on my mind. Slowly, I accepted the horrible and graphic depiction of the war scene as I realized the meaning it carried. So, with great caution, I went back to reading the book and, little by little, became completely captivated by it.

The book painted the worst possible scenario of how far a dictatorial political regime could go. I know that a lot of people, especially people in the US, believe that Socialism or Communism is bad and evil by nature. The truth (or what I believe) is that neither is bad or evil, but it makes sense to use a political regime that is best suited for a given society, based on culture, history etc. No regime is good when abused, and all regimes have their strengths and weaknesses.

While I found the book absolutely depressing and brutal most of the time, it always gave me a glimpse of hope... Hope that the real truth, justice, human spirit, and laws of nature vs. laws of a political machine would prevail. The writing is brilliant and the monologues and dialogues are so intellectually stimulating and philosophical, that there was a moment when I actually questioned if 2 + 2 = 4. But the real bonus was that the book brought back many memories from my life in the former Soviet Union… memories that I hadn’t thought of in many years, if ever.

The Party

The entire book is based on the principle that the Party is the start and the end of it all. The reason things existed the way they were was because the Party wanted it that way. It went even further to suggest that if the Party wanted people to fly, which obviously went against the laws of gravity, they would be able to do so.

It made me think of the principles and teachings of the Communist Party in the former Soviet Union.... When I was growing up there in the 1980s, I did think that believing in our Party and its principles was the way to live. Both my Dad and Grandfather were Party members with college degrees in mathematics and radio engineering and distinguished military careers. I was raised to believe in science, progress and innovation, and that Communism is a reachable and ultimate goal of our society.

The government did decide what was best for you as a citizen because the government had the right vision for our society. And, if it was decided to limit the ration of toilet paper, it meant that this was a necessary measure for the country and we would have to be more economical. I remember standing in long lines with my Mom to buy chocolate candy because the supply was incredibly limited but the demand grew each year. I remember that bananas were a real treat and rarity, and the only reason my Mom was able to buy them was because she had a job as a quality expert for imported goods (that was a Money job, by the way). I remember going to the store to buy milk and bread and that there was only one brand of milk and two types of bread (white and rye). But I don’t ever remember thinking or asking myself or my parents ‘Why can’t the country give us more of this or that?’ Things and amount of them didn’t seem to define people. Education and career accomplishments did. And, if you had those, you also had more things, but that was the consequence of the former.

I don’t remember anyone being particularly unhappy with the fact that we couldn’t travel the world or buy Levi’s. Overall, my life and my family and friends’ lives during Socialism were stable, structured and sort of predictable (well, except for fearing the Americans and their nuclear weapons). Structure and predictability also meant confidence, safety and protection, which I still believe to be good things, so there you have it.

There’s a reason why Putin is still the ruling hand of Russia – while he is dictatorial in nature, he’s given people that same old sense of safety and protection. And a lot of people love him for that only, and will follow him blindly no matter where he chooses to steer the country. And yes, I do still believe that the Russians live and function better under a highly structured and firm political regime.

Freedom of Religion

The Party in the USSR never questioned the laws of nature. Moreover, the USSR and the Communist Party was all about pushing science to the edge. Who was the first person going to the outer space? Yuri Gagarin, thank you very much! :-)

But, religion was forbidden. How can there be god when everything was or could be explained by science? It’s just not logical. So yes, religion was banned. And this is where the Party went too far – if the Party said there was no god and we had to believe in science, there was no other option. If you are not with us, you are against us. It’s the only truth.

I remember finding a tiny silver cross in my Grandma’s old jewelry box when I was 11. I remember how it made me feel – I was confused and upset with Grandma. How can she have this?? This is just wrong. Is it even remotely possible that she doesn’t believe in science and secretly believes in the fairy tales of god? No, I didn’t turn her in, like one little girl in the book turned her father in to the Thought Police because he was screaming anti-party slogans in his sleep. But I did confront her about it. She denied having the cross. I told her that I had seen it just a few hours before, but she said that I must have mistaken it for something else. I remember crying about it, too. I never told this story to anyone until today. Too bad I can’t talk to my Grandma about it – she died 14 years ago.

Today, because I was raised an atheist, I struggle with the whole concept of god and religion. I want to believe it so badly, but I honestly can’t say that I do or do not. I go to church, I pray to God, and I even took my son to Russia two years ago and had him baptized in a Russian Orthodox church. And guess who was standing there in the church as his Godfather? My Dad. But, do we really believe in God or do we just go to church now because we are free to do so and it also is a popular thing to do? I truly don’t know. I wish that back then we had a choice to at least learn about religions and why they are important. I wish...

----------------------------------

There are a lot of unanswered questions in my mind about then and now; about why we did things we did back then and what impact it has on our lives today. I’ll be sure to find a Russian publication of “1984” and have my Dad and Grandfather read it by next summer, if they haven’t already. That should be a very interesting discussion.

Sesame Place

2009-08-25T19:27:00.050-04:00

Will has been a loyal fan of Sesame Street ever since he was a toddler. I bet we have every single Sesame Street DVD in the house, and many of them have already been replaced due to heavy use (or teeth marks). For Will, a typical morning is a bowl of Cheerios and Sesame Street (or Barney, on occasion), so we pretty much live it.

Thanks to Facebook and my neighbors, who posted pics from their trip, I learned that Sesame Place actually existed. Moreover, it's only a 3.5 hour drive from home. And so we went.

The Good
The park looks really nice, clean, and has a ton of different activities for kids. When we first got there, I realized quickly that Will got completely overwhelmed by the enormous amount of people (I think I got overwhelmed by that, too). After a few attempts to get him to try a few little kid rides, the scope of our visit had to be reduced to just the Splash Castle and other "wet" activities. And those turned out to be a lot of fun.

The Count Dracula's Splash Castle is a huge water park with water slides of all sizes and the occasional dumping of the water on everyone, which is the biggest hit for kids.

We also rented the Count's cabana for the day ($170), and it was worth every penny. Basically, it's your own little cabana with a fridge, unlimited water, a safe box, three couches, dining table and a ceiling fan. You can close the curtains to make it completely private. We changed there, had lunch there, lounged there, and even had a special visit from the Count to greet the "cabana" kids. That was definitely the highlight of the trip.

The Bad
Hotel
If you care about your accommodations, do not go with a Preferred Hotel package. Before booking our hotel, I had done some research on sesamestreet.com to see what sorts of things and vacation packages they offered. Now, I am the type of a consumer who buys Snuggle dryer sheets over the competing brands mainly because it has a picture of a cuddly teddy-bear on the box. Naturally, after reading their hotel descriptions, how kid-friendly they are, and and how much Sesame Place recommends them, I purchased a vacation package with a preferred hotel - Comfort Inn in Levittown. And here's my experience: I found the hotel to be really dark and the rooms super narrow (I felt like we were living inside a candy box). It also didn't help that our room was on the first floor, facing the parking lot and Bristol Pike, so the curtains had to stay closed the entire time. Later we found out that there's a Sheraton right across the street from Sesame Place. I could not believe it when I saw it there and really wished I had done more research. I don't know if the place is any good, but at least it would have gotten rid of all the stress from driving and a hefty $15 daily parking fee.

Sesame Place Characters
..or I should say the lack thereof? Maybe I got spoiled by Disney World with its presence of characters on the streets, but we didn't see Elmo or Big Bird or any of the characters with the exception of the Count. It felt as if the characters moved out and a million people moved in and flooded Sesame Place. The place felt more like a typical amusement park vs. Sesame Street/theme park, and that was disappointing. It didn't seem to give that *magic* feeling that Disney does.

We did have a dinner with Big Bird reservation, but the line was insanely long and it was so hot, it was hard to breathe. Even though Will had the orange bracelet (special needs bracelet), for some reason I felt rude getting in front of the rest of the little kids who had been baking under the sun for a long time waiting in line. So we left and had a great dinner at the Outback Steakhouse instead.

The Ugly
No offense to the people living in Langhorn or Levittown, PA, but the area is really questionable. I didn't feel comfortable driving there, and closed roads with detour signs that didn't lead us anywhere made our drive to Sesame place ~20min long vs. the ~5 min, as reported on their website. All I can say is thank God for my GPS. I don't think I ever relied on it as much as I did on this trip. It took us through many back roads and neighborhoods, but it never let me down.
And, believe it or not, there are no signs or advertisement for Sesame Place anywhere nearby. I mean, it's probably the only reason people drive from all of the country to Langhorn, PA, as it's the only Sesame Street theme park in the country. But no, not a single sign.

********************************

Overall, I am glad we did it -- it got us out of VA, took us to a place we've never been, got us scared a few times but, in the end, everyone had fun. It also made me realize that Will is probably a bit too young for any sort of an amusement park (he's still only 3), unless it's a water park, which we have plenty of in the area and don't need to drive 3.5 hours for that alone. If we ever go back there, it will be in a couple of years, and I'll be sure to do more research before booking a hotel.

A Little Pond in Ashburn, VA

2009-08-16T10:42:00.009-04:00

A Little Pond in Ashburn, VA
Originally uploaded by marina.tuttle

Just playing with Flickr to see how I can post directly from there to the blog....

As a side note, I am glad I finally took some pictures of the pond. I've been taking the same route to work for more than five years and always enjoyed looking at it for about 2 seconds as I "fly" by. It's one of those moments when you go 'Oh I wish I had my camera with me...'

So last Friday I brought my camera with me... Once I got out of the car, I realized there was really no safe place to stand to take pics (it’s a major but really narrow two-lane road). But, if there's a will, there's a way, and I did manage to find a piece of safe land to stand on and shoot a few pics, while cars were flying by a little too close to me.

Was it worth the risk? Probably not. But, it surely made me happy and now I get to look at the picture of the pond for as long as I want. :-)

Trip to Spain – Part 2

2009-08-11T21:17:00.013-04:00

“Darling, we are in Spain.”

I was overwhelmed by Spain: from the culture to cuisine to architecture to landscape to climate – everything was beautiful and breathtaking. However, what made the trip so unforgettable and special was the fact that I was there with one of my closest friends.

It was the conversations we had until 3 o’clock in the morning, while drinking champagne and eating Ronda Fresca... Or us grilling Dorado on the patio and eating those absolutely delicious salads with Crèma Balsamica… Or us running around El Corte in Marbella and Fuengirola with the kids and strollers in search of the perfect Andalusian dresses and accessories. Or dining at the El Faro restaurant and talking politics to our other Russian friends, and seeing Will try new things spontaneously, like eating calamari and ice-cream or playing with his new Russian friends.

It was also us just being two moms… walking to the beach every day holding two chairs, two umbrellas, two surfing boards, two large bags filled with towels, snacks and beach toys, and our three kids, each trying to either escape or cry for some reason. And, when our patience with the kids was running low, my friend and I would look at each other and say “Darling, we are in Spain…Everything is perfect.” Then we would smile, adjust our designer sunglasses (yes!) and keep on walking, holding our heads up high. And that’s how we roll.

I close my eyes sometimes and still see us walk the streets of Mijas… I can see those incredibly white buildings in the mountains, and my friend buying the cutest Flamenco dress in one of the boutiques for her little daughter … I can see Will scoping everything out in silence but I know that he’s just trying to take it all in. And I keep shooting – every building, every corner, every street is so unique and beautiful, it must be photographed.

It is crazy how life works – the people closest to you live thousands of miles away, in different countries, on different continents, and we see each other once a year, maybe. And, while modern technology allows you to keep in touch every day no matter where you are in the world, it is still not the same when you can’t see your friends more often. Perhaps, that’s what makes trips like this one so special and meaningful – you truly treasure and enjoy every second of it, be it in a villa in Spain or in a small apartment in Russia.

Trip to Spain – Part 1

2009-08-05T23:09:00.035-04:00

“He Was Perfect”

I had initially declined my friend’s invitation to come to Spain this summer. Main reason – travel time. I simply couldn’t imagine taking Will so faraway, on multiple flights, with a 4-hour layover in France, to a country I’ve never been. But, after giving it more thought, realizing that it could be a once in a lifetime opportunity, and knowing how much Will would enjoy the beach, I decided that it was worth it. I also knew that we were going to stay with my dear friend and her kids, so I was confident that we would have the best time there.

When we first got on the plane from DC to Paris, I warned the nearby passengers that Will is Autistic, and apologized in advance for any disturbance or noise. I meant it… I felt really bad for what I thought was about to happen. But nothing happened: he played with his books, watched a few Sesame Street DVDs, ate his dinner, I changed his diaper (although that was a bit of a challenge, given the size of those bathrooms), and he fell asleep. Once we landed, one of the passengers came to me and said ‘He was perfect. You should be proud of him.”

There were many times during our trip when we were either getting on or off an escalator in an airport, or standing in line for security checks, or going through customs, and I was absolutely sure Will would fuss or tantrum. But nothing happened. Not a peep. I kept thinking “I can’t believe this. He’s behaving better than typical kids. He must be in some sort of a shock from all the change.” So I kept looking at him in search for that absent look that we often see in Autistic kids. I didn’t see any of that – he was calm, alert, and observant.

During our stay in Malaga, we had a tiny Fiat Panda that my friend had rented, and we rode it at least twice a day. Will had to sit with two other kids in the back, in a small booster seat. He did great with that too, with the exception of insisting on closing the car doors himself (that’s his trademark though, so can’t really expect him to change that overnight).

When in Paris, on our way back to the US, we took a bus between the terminals at the Charles de Gaulle airport, and Will sat on a bus seat, all by himself like a big boy. He was serious and collected. I saw some passengers looking at him and smiling… I knew they had no idea that he was Autistic, and they were smiling because he was being like a little adult, riding a bus. I smiled, too. It was a very rare moment, when I felt a sense of normalcy and acceptance for my son… It is ironic that of all the places, it happened in Paris, on an airport bus filled with strangers.

During the trip, Will had to walk more than probably in his entire life. Some of it was due to us not having any choice, some to me being too tired to carry him, some to me wanting him to walk to be more independent. And it was all good for him.

That passenger from our flight from DC to Paris was right – Will was perfect. I don’t know why it all went so well... Maybe somehow Will knew that we both needed this trip... Maybe God helped us... Maybe it was all of it. But for sure, it was a giant leap forward and now the sky's the limit.

---------------------------------------------------------

July 13, 2009

1:00pm Drive from home to Dulles Airport – 30 min
Dulles Airport, checking in, waiting to board – 3 hours
Washington DC. – Paris, France – 8 hours
Layover in Paris – 4 hours
Paris, France – Malaga, Spain – 2.5 hours
Looking for our baggage and finding it in Lost & Found – 30 min
Drive from Malaga to Mijas (our final destination) – 30 min
---------------------------------------------------------
Total Travel Time – 20 hours

July 25, 2009
4:30am Drive from Mijas to the Malaga Airport – 30 min
Malaga Airport, checking in, waiting to board – 2 hours
Malaga, Spain – Paris, France – 2.5 hours
Layover in Paris – 4 hours
Stuck on the plane due to a cargo compartment issue – 2.5 hours
Paris, France – Washington DC, US – 9 hours
Dulles Airport Customs/Baggage – 1 hour
Dulles Airport to home – 30 min
---------------------------------------------------------
Total Travel Time – 22 hours

Russian Cutlets (Kotlety)

2009-08-02T19:54:00.031-04:00

This weekend I finally decided to make the Russian Cutlets or, as we say in Russian, kotlety. It is a very a common dish in Russia, my son Will loves it (my Mom'd made kotlety many times when she was visiting), so I'm a bit ashamed that it took me this long to do the same. But, better late than never, so today was the day.

I used my friend Lena's recipe (thank you, darling!), and, even though the entire process was pretty time consuming, it was worth it.

Ingredients:

- 1 lb. of ground beef
- 1 lb. of ground pork
- 6 slices of white bread
- 1 egg
- 3 cups of 1% milk
- 1 onion
- vegetable oil
- dill for seasoning
- salt & pepper

Instructions:

1. Take about 6 slices of white bread (I used sliced Italian white bread), remove the crust, and tear the bread up into a medium-size mixing bowl. Pour about 1 1/2 cup of 1% milk into the bowl and mash the bread so that it becomes a clam chowder-looking mixture. Make sure that you don't have large pieces of bread floating around - you want the mixture to be of the same consistency. Break one egg into the mix and stir. Add a dash of salt and black pepper, mix, and set aside.

2. Mince one onion and throw it on a preheated with vegetable oil skillet. Saute for about 5 minutes, turn the heat off, and set aside.

3. In a large mixing bowl, mix the ground beef and ground pork. For best results, use your hands. Yes, this is where you'll have to get intimately acquainted with your meat (I am not a fan), but it's necessary for everything to be mixed properly. Some people use sterile gloves because they don't like to touch raw meat. Some people. :-)

4. Pour your milky bread mixture into the bowl with beef & pork, and mix. Add the sauteed onion, and mix everything really well.

5. Now the fun part begins -- the making of the cutlets! Make as many as you can (shape them like mini burgers or large cookies) and place them on a cookie sheet. I made a total of 37 cutlets using this recipe, so it's about 3 cookie sheet worth. You won't be actually using the cookie sheet for cooking the cutlets, but rather, for staging them there before they make their way to the skillet.

6. In a large deep skillet, heat up some vegetable oil. Place your cutlets (the number of cutlets will depend on the size of your skillet and the cutlets) on the skillet and fry them for about 3 minutes on each side, on medium heat, uncovered. Once they are browned, pour some milk into the skillet, turn down the heat to the lowest setting, cover the skillet and let the cutlets steam for about 10 minutes. That's what will make the cutlets juicy and soft - the milk gets absorbed into the meat and makes them moist and tender.

After the 10 minutes are passed, remove the cutlets from the skillet and place them on a large plate or a casserole dish, where they can cool down. Sprinkle some dill for seasoning.

You'll have to repeat Step 6 multiple times until you run out of meat. As I've mentioned above, this recipe makes about 35-40 cutlets.

The great thing about the cutlets is that you can have them with mashed potatoes, barley, rice or any other typical side dish. They will last you for about a week (keep them refrigerated). All you need to do is change your side dishes, and it's like you have a whole new meal. Can't beat that.

Hope you enjoy kotlety as much as we do. Priyatnogo appetita!

Traveling Toddler

2009-07-30T21:03:00.033-04:00

In preparation for the trip to Spain, I spent hours researching various products in the marketplace that make flying with a toddler and his/her gear easier. My past experience travelling by air with Will involved special straps to carry his car seat like a backpack. That ended up being a giant pain in the back, literally: it was super heavy, awkward, and somewhat hazardous to the people around me, especially when I made turns.

This time I decided to do it right. I was convinced there had to be an easier way to have your kid, his car seat, and your carry-on luggage all managed by one adult. Sure enough, there was. Traveling Toddler is such a simple and genius idea to strap your kid in his car seat to your carry-on rolling suitcase, and use it as his stroller. It solves multiple problems at once: you can check in the stroller and forget about it, you don't have to lug your kid's heavy car seat in addition to your carry-on luggage, and you can even have another carry-on (e.g. backpack). And, most importantly, your kid is happy and cozy in his own comfy car seat while you are navigating through crowds.

When I first came across the product, it almost seemed too easy and suspiciously cheap ($15.00 on Amazon). But, after reading its 5-star reviews with the customers so happy with the product, they'd cried, I went for it.

Initially, it took some practice, and it didn't work with all of Will's car seats (so make sure your car seat manufacturer and model is listed as compatible, if you decide to purchase one). But, once I got the hang of hooking and unhooking the car seat straps to and from Traveling Toddler and, ultimately, the suitcase, it was really easy, and it only took seconds.

We used Traveling Toddler going from Dulles, US to Paris, France, to Malaga , Spain, and all the way back without any issues. I also got so many compliments on my little "system", not only from random travellers who were also desperate to find a way to make their travel with kids easier, but also from different airport security staff. Surprisingly, I didn't see anyone else with Traveling Toddler, so that makes me think the product is either still really new or people are too sceptical to give it a chance.

Next time we travel by air, Will is going to be too big for his car seat, as I am about to transition him to a booster seat. Nonetheless, I am happy to have found a product that truly makes travelling with a toddler much easier, so now I am spreading the word. Travelling with kids doesn't have to be a nightmare, and I hope Traveling Toddler helps you.

Bon Voyage!

Malaga, Spain

2009-07-18T21:16:00.000-04:00

I still cannot believe it, but Will and I are in Malaga, Spain, staying with a close friend, who's vacationing there this summer.

So far, the trip has been out of this world... I honestly can't think of one word to describe it. Perhaps, it shouldn't be.

A friend of mine gave me a journal before we left, so I've been writing in it a lot to capture as much of everything that's been going on as possible (I actually had to remember how to write vs. type). Eventually, once we are back home, most of the content in the journal will make its way here.

Vuelvo mas tarde! :-)

Borsh.. my way.

2009-07-04T21:05:00.000-04:00

Since I don't typically crave Russian food, I make borsh (Russian beet & cabbage soup) only a few times a year. But, every time I make it, it reminds me of how hearty and delicious it is, and is always worth the time it takes to prepare it.

One thing about borsh is that while there are general guidelines for making it, no recipe is the same. I still somewhat follow my mom's recipe, which she, according to her, perfected from my grandma's recipe. In turn, I have perfected my mom's recipe :-) It's all about perfection.

So here goes my attempt to document something that's been in my family for many generations.

Ingredients:

- 2 packs of beef stew meat (or one large pack)

- 1 medium size green cabbage

- 3-4 carrots

- 2 medium size beets

- 2 tomatoes

- 1 onion

- 4-5 cloves of garlic

- 1 lemon

- 2 large yellow potatoes

- 1 chicken cured hot dog

- voo (virgin olive oil)

- fresh dill and parsley

Instructions:

1. Place the meat in a large pot, add cold water (about 2/3 of the pot) and bring it to a boil. Let it boil it for a few minutes and then dump the water, rinse the meat, and re-fill the pot with fresh water (about 3/4 of the pot, as you will need room for the rest of the ingredients). I boil the meat twice to make sure that the actual broth that you are going to use for the soup is nice and clear.

2. Bring the water with meat to a boil and let it cook until the meat is cooked. Shred the cabbage and place it in the pot. Stir. Reduce the heat to low and half-cover the pot with a lid.

3. Grate (or use a food processor) the beets and carrots, chop the onion and place all three ingredients on a large heated pan/skillet with lots of olive oil. Stir and saute the mix for 5-7 minutes on low heat. Then add cut up tomatoes, garlic, and lemon juice (I usually squeeze an entire lemon into the mix). Lemon juice is very important here as it preserves the brightness of the red color of the beets - the signature color of the soup. Add some salt and pepper, a little bit of water, and stir. Lower the heat to the lowest setting, cover the pan with a lid and leave it be for about 10 minutes.

4. Add the beets & carrots juicy "salsa" that you just prepared to the beef and cabbage in the pot. Stir slowly. Cover with the lid and let it cook for 5-7 minutes. The heat on the pot always stays low - remember that.

5. Cut up potatoes (I usually cut them up into small cubes so that they cook faster), add them to the pot, and stir. By now, you should have very little room left in the pot, but the good news is that you are pretty much done :-) Cover the pot and give it about 10 minutes for the potatoes to cook.

6. When the potatoes are cooked, add some fresh dill and parsley and stir. (I also like to add one cut up chicken hot dog to the soup. I think it makes it a little bit more interesting, but doesn't take away from the main dish.) Turn the heat off, cover the pot with a lid, and let it sit for a few hours to cool down. Once cooled down, keep the soup refrigerated.

Serve borsh hot with a little bit of sour-cream or as-is.

Enjoy or, as we say in Russia, pryatnogo apetita!

Размышления о России... (A Russian version of "Russia on My Mind...")

2009-07-01T20:03:00.000-04:00

Прошло уже более двух лет с тех пор, как я и Вилька побывали в России. Это было в июле 2006 года, когда Вильке было вcего 9 месяцев. 12 часов лета из Вашингтона в Москву, а потом 7 часов езды на машине в Нижний было не легко, но игра стоила свеч.

Вилькино крещение в Русской православной церкви, всреча с прабабушкой и прадедушкой, времяпровождение с его тетей Олей и дедом и баби, а также c разными друзьями и людьми с которыми я выросла было просто безценно и, в какой-то степени, сурреально... Сурреально, потому что мои родители, родственники, и все мои pусские друзья никогда не были и наверное не будут частью моей и Вилькиной каждодневной жизни в США.

Честно говоря, это факт хронически разбивает мне сердце. Иногда я жалею о том, что иммигрировала в США т.к. это практически полностью отделило меня от моей семьи.

C другой стороны, я так же благодарна судьбе за возможность приехать в Америку и построить свою жизнь здесь своим трудом. Но, к сожалению, как бы я на это не смотрела, постоянно быть в далеке от родни и Нижнего Новгорода, где я выросла, училась в университете, и прожила свои первые 20 лет, очень тяжело.

Мысли о возвращении назад в Россию на постонянное место жительства посещали меня до Вилькиного диагноза Аутизм. Ho, eсли Вы думаете, что Аутизм это понятие достаточно новое, и врачи до сих пор не знают точно не причин болезни не как ее лечить, то в России люди только сейчас начинают узнавать что такое Аутизм. Нет пока в России специализированной терапии и услуг для образования детей c особенностями Аутизма в обычных школах. Я раньше вообще думала, что в России нет много детей-инвалидов или в принципе людей с врожденной инвалидностью. Но, к моему удивлению и сожалению, таких людей в России столько же сколько и в США, только в России их не видно, потому что они не выходят из дома. Россия, на сегодняшний день, не приспособленна к тому, чтобы обеспечить оптимальную жизнь для людей с физическими или умственными отклонениями. Вилькино настоящее и будущее намного лучше и более перспективно здесь в США, нежели в России, и поэтому все мысли о возвращении в Россию теперь отпали.

Ну, а как насчет того чтобы ездить в Россию более часто? Проблема в том, что когда человек уезжает из своего родного города и страны, и только приезжает погостить раз в год или реже, появляется такое не реальное чувство или ожидание, что все должно оставаться на своих местах... так, как это было в детстве. Это то идеалистическое представление о своем детстве, где все всегда было хорошо, и мама с папой любили друг друга. И, возмножно, у кого-то действительно так все и происходит. Но, в моем мире, слишком много всего поменялось за последние годы, и это наверное основная причина моего нежелания часто посешать Россию: большинство моих друзей переехали в Москву и Израиль, сестра уехала в Англию на учебу, а родители развелись.

Видеть как мама и папа ведут свои раздельные и очень разные жизни послe 30-летнего брака и не иметь возможности проводить время с ними вместе как одна семья иногда просто не выносимо. И я все понимаю - это жизнь, люди разводятся, но во мне все равно живут эгоистичные чувства, что их развод забрал у меня то ощущение семьи.

Не давно я поделилась своими мыслями по поводу России с одним из моих друзей, и реакция была такая: "Значит теперь ты решила наказать своих родителей за их ошибки?" Меня просто покоробило, когда я услышала этот вопрос... И я почуствовала себя маленькой эгоисткой.

Я много думала о своем отношении к родителям с того момента... И, действительно, жизнь это такая штука, что иногда все меняется, хочешь ты этого или нет. Но, родители всегда остаются родителями, хорошие или плохие, вместе или раздельно. Я чувствую себя виноватой за то, что Вилька и я не приехали в России этим летом... Было бы здорово увидеть маму с папой и бабу с дедом.

Я надеюсь, что мама и папа приедут к нам в гости в этом году, и мы с Вилькой поедем путешествовать назад в Россию в 2010 году. Я надеюсь, что моя сестра тоже будет там с нами. Я надеюсь, что баба с дедой живы и здоровы, и что дед раскажет нам о своих мемуарах, a баба будет охать и причитать на тему зa чем я вообще иммигрировала в США. Я надеюсь...

Russia on My Mind...

2009-06-30T17:58:00.000-04:00

It's been more than two years since I've gone back to Russia... The last time we went was in July 2006, when Will was only 9 months old. As hectic as it was to travel 12 hours by plane and then 7 more hours by car, the trip was worth it (although I am confident that I aged 5 years on the flight back, when Will cried for 10 hours).

Will's baptism at a Russian Orthodox church, meeting his great grandparents for the first time, hanging out with his aunt and grandparents, and seeing all of the people I grew up with was priceless and kind of surreal... Surreal because my parents, relatives, and all of my Russian friends are not and never have been part of my and Will's everyday life in the US.

It always breaks my heart. Sometimes I regret immigrating to the US because it separated me from my family. Other times I am grateful for having the opportunity to come to the US and build my life here, all by myself. But no matter how I look at it, always being away from my family and Nizhny where I grew up, went to college, and spent the first 21 years of my life, is very hard.

The thought of moving back had crossed my mind before Will's diagnosis of Autism. If you think that Autism is a fairly new disorder in the US and doctors don't quite know yet how to treat it, Russia is only now starting to get familiar with the term 'Autism'. There are no therapy services or special education services with the goal to streamline your children in the long run. I used to think there were no handicapped people in Russia. The reality is that they are just as many as in the US, except most of them sit in their homes and rarely go outside; Russia is not handicap-friendly. So, Will is better off here in the US, and I can't think of a better reason to stay.

But what about visiting Russia more often? Well, when you leave your hometown or home country, and only visit once a year or less, you sort of expect things to stay the way they were when you'd lived there... It's that idealistic view of your childhood and how everything magically worked back then, and Mom and Dad were in love. And, for some people, maybe it just works that way. But, in my case, too many things changed in the last several years, and that's probably the main reason why I haven't gone back to Russia in so long. Most of my friends moved to Moscow and Israel, my little sister moved to England, and my parents got divorced.

Seeing my Mom and Dad living their own separate lives after a 30-year marriage and not being able to spend time with them as family is crushing. And, even though that's just how life works sometimes and I understand all the reasons, I guess I still feel selfish that I can no longer be with both of them and have that sense of family.

I recently shared my feelings about visiting or not visiting Russia with a friend, and the response I got was "So now you are punishing your parents because of it?" That really struck a chord with me, and made me feel selfish and immature.

I have thought about it a lot since then... And, I guess that's just how life works. Things change, they always do, and sometimes they don't change the way you want them to. But, your parents will always be your parents, together or separate, good or bad. I feel guilty now for not going there with Will this summer, as I am sure my parents and grandparents would be thrilled to see us.

I hope that my Mom and Dad will each visit us later this year and Will and I get to go on our "Back to Russia" adventure in 2010. I hope that my sister is there, too. I hope that my grandparents are alive and well, and my Grandpa can tell us about the memoires he's been writing, and Grandma can ask me again and again why I immigrated to the US in the first place. I hope...

Comfort Food - Buckwheat Porridge

2009-06-26T21:31:00.000-04:00

It still fascinates me that I want Russian food only when I am down. Unless I am either sick or sad, I do not miss or crave the Russian cuisine. Moreover, I would rather eat something else. It always disappoints my Mom when she visits because all she wants to do is cook for us, but I eat her dishes only out of respect.

The first time I realized that I absolutely HAD to have Russian food was about 4 years ago. I was 10 weeks pregnant with my son, and was going through the worst first trimester all-day sickness. I had lived in the US for about 8 years at that point, and it was the first time I felt like I needed the food with which I grew up.

I Googled 'Russian Food', found a great local Russian food store in Herndon, VA, http://russiangourmet.com/, and it has been my comfort food store ever since. The place always has just the right Russian goodies, the staff is super friendly (well, Russian-friendly), everyone speaks Russian and, sometimes, I think that just by looking at me, they know what's on my mind and can relate... just because we are all Russian :-)

So what do I usually get there to satisfy my craving and make me feel all better again? Roasted whole buckwheat groats.

Buckwheat porridge (Grechnevaya kasha) is probably one of the top three side dishes in everyday Russian cuisine (the other two being potatoes and rice). It's a great choice for people with diabetes, GI issues, and all sorts of food allergies. But, besides being super healthy and relatively low-fat, I think it is super delicious and goes well with meat, chicken, sausage, or mushrooms/veggies.

It's really easy to make, too. All you need is:

200 ml whole roasted buckwheat groats
a few knobs of butter
½ tsp salt
boiling water

Pour the groats into a medium-size pot with boiling water, add some butter (the more the better!), sprinkle with the salt, and mix. I tend to use about the same proportion of water to buckwheat groats as with rice. If you don't use enough water, the groats will be dry and you can pretty much throw the whole thing out and start over. (Some people like to substitute water with milk to make the porridge more rich).

Cover the pot tightly with a lid and reduce the heat to low. Cook it for about 30 min. The porridge is ready when all the liquid has been absorbed into the buckwheat, and the groats are soft and fluffy.

I just made the porridge for dinner last night (I also mixed in a couple of cut-up organic cured chicken hot dogs to make it into a balanced meal). My son Will is the pickiest eater in my world, but he ate his entire dinner without any convincing.

I feel better already.

Home for Thoughts

2009-06-26T19:50:00.000-04:00

I feel like consolidating things these days: email accounts, bank accounts, credit cards, and even blogs. I have created different posts on way too many sites (facebook, autismspot.com and others) in the last year or so, and now I feel the need to bring all of them into one place. I guess that means I will be blogging here. My thoughts (or at least the ones I am willing to share) now have their first official home on the Internet.. and this is kind of exciting. :-)

Teaching Empathy and Compassion

2009-05-31T20:35:00.000-04:00

I know that all parents can relate to meltdowns to some extent – all children at one point or another have meltdowns in public. It’s stressful, embarrassing, frustrating, and all you want to do is make it stop as soon as possible and run home.

The challenge with Autistic kids’ meltdowns is that they are much more intense, they last longer and, at times, there really seems to be no way to stop it.. So you grab your kid, carry him to the car, go home, and hope you never get to meet the people who witnessed it again.

It happened to me this weekend. Will was already tired from a busy weekend, but the weather being so nice, I decided to take him to our neighborhood playground before dinner. Bad call.
He had a meltdown at the playground because he couldn’t swing on the swings for as long as he wanted. Typically, this issue is manageable as he can be redirected easily to a new activity, but not today. In his attempt to communicate to me that he wanted the swing, and being already so stressed out about it, he realized that vocalizing the words ‘swing’ and ‘push’ is not going to get him what he wanted, so he started screaming every word he had in his vocabulary. Then the flapping… I will spare you the rest of the details.

So I grabbed him and carried him to the car. He is 35 lbs and super strong for his age, so it was a battle. And, as I was walking away from the swing set, I heard one of the moms say quietly “psycho”.

When I heard that, it felt like someone punched me in the back of my head. I wanted to turn around and punch her back, but for real. I didn’t. I kept on walking with Will in my arms fighting me.

Will cried for about 2 min on the way home and then passed out. I cried the entire way home. Tears of anger, frustration, pain and fear. It’s a painful contrast to hear encouraging feedback from therapists and teachers on how your precious little boy is doing, and, at the same time, to hear a stranger at the playground call your 3-year-old a psycho. Both within the same week.

I wish that mom called Will a brat – that way, I could have brushed it off as her being unaware of Autism. But, the fact that she called him a psycho made me realize that spreading Autism awareness is not enough. We need to teach people empathy, compassion, and understanding. The question is how.

"..like a lotus growing out of the mud, its beauty and purity unsullied by its origin"

2009-02-04T20:32:00.000-05:00

I find it extremely difficult to talk or write about Autism and how it affects Will and me. It is as personal as you can imagine and it hurts more than you can imagine, unless you have a child with Autism or any other special needs. Because I find it so hard to talk about it, I truly admire the parents who have been really outspoken about Autism and how it affects them and their children, in an effort to educate others. I am grateful to them for becoming my voice as well as the voice of so many families with children with Autism.

But you don’t have to have a child with special needs to understand me. Think about how you feel when your kid gets sick and, for a period of time, you don’t know what it is and if your child is going to be ok… And, on top of that, the treatment that our child needs is not covered by any medical insurance in the state of Virginia. You panic, right? It’s your child and you can’t help him/her. Well, I live with that feeling every single day.

As a parent, it is your duty to do provide for your child, and that includes an endless list of things. But, along with food, water, and shelter as the basic and most vital things, there is also medical care. As of today, there is no insurance coverage for Autism treatment in the state of Virginia or any neighboring states. The cost of treatment for Will is 100% out of pocket, averaging ~ $3,200 per month.

Last night, VA Commerce and Labor Subcommittee silenced the bill for Autism Insurance Coverage. No vote was taken. No action. In a way, I almost wish they voted ‘No’… At least it would have been something… something to hold them accountable for. Which is probably why they didn’t vote at all, right?

Not being able to help my 3-year old son soon because my Dad’s generosity is about to run out of cash due to an economic crisis in Russia is becoming my reality.. Do I move to one of the 8 states that provides Autism Insurance? Would I be able to sell my house in Leesburg in this housing market? Will I be able to get a job at a non-self-insured company that has to comply with the state mandated bill? These are the questions that run through my mind day and night, and I don’t know what to do. Early intervention is key – the ABA therapy is most effective when done in the early ages of development, so it’s not like we have plenty of time to stick around and wait.
This is a difficult time for my family as well as other families in Virginia affected by Autism. We are all stunned by what happened last night in the General Assembly, yet we continue to believe and hope that the bill will be passed in VA Senate.

When I find myself having a particularly difficult time dealing with all the challenges of Autism, I always read this quote from Roy Richard Grinker, and it makes me stronger and puts everything in perspective. Tonight, I would like to share it with all of you.

“Isabel has taught me that the unexpected, even the beautiful, can emerge even from the undesirable, like a lotus growing out of the mud, its beauty and purity unsullied by its origin. The beauty can be found in a single person, inside of whom there’s something – no, not something ‘normal’, but a brilliant light or an inner truth struggling to blossom. So, when people pity me for my daughter, I don’t understand the sentiment. I work hard for Isabel, but I don’t regret it or feel sorry for myself. At the end of the day when I tuck her in, she’s not a case of Autism, or even a child with social deficits and language delays. She’s simply my daughter. My job is to clear the land for whatever growth is to come, even if, sometimes, no one else believes it will happen.”

Nothing Left

2008-10-17T20:30:00.000-04:00

How does a single mother with a full-time job raise a child with Autism? I don't know how.
Ever since Jenny McCarthy's latest book came out, I've been reading it at night instead of working, checking email, responding to calls etc. The more I read the book, the more I read other stuff on Google, researching different studies, opinions, stories.

I have not done any biomedical intervention .. yet (that's what her latest book is mostly about). For me, it has to be an educated decision, which means I have to do a lot of research. That's just how I do things, and that's what I do for living too. Research is key but it takes time. And, when it comes to helping your sick child, it becomes your top priority. I am not ready to make a decision yet, but I am afraid I am losing time... I am racing against some imaginary clock that says that I have to figure it all out before Will is 3.. He will be 3 next month.

So, I haven't been a champion at work.. "Marina, you haven't been yourself.. You haven't really showed any initiative lately. You just do what I tell you to do and that's it. You don't seem to be creative to find new ways and new areas of opportunity for our team and company to grow..." That's what my boss told me today, when he called me into his office. My boss knows about my life.. He is understanding and supportive. But I guess it's work after all, and people worry about the bottom line. In this economy, bosses want to make sure their employees are always at their best. And, because of constant layoffs, those who are still there have to become more efficient with more work.

I have nothing left.. No energy, no initiative, no emotion when it comes to people or things unrelated to Will and his health. Nothing left. How can I care about my company's success when it's my responsibility to help my son? When I am in it alone and it's really up to me to make sure right things are done at the right time for him?

I wish I could just quit my job. But I can't. I live paycheck to paycheck and I have no savings (typical, I know). So I need this job. I will always need a job to provide for Will and his treatment. So what do I do? How do I get the emotion and the drive and the initiative that I used to have back and be good at my job when I already have nothing left?

"The What Therapy?"

2008-08-14T20:26:00.000-04:00

Today I had to take my 2 1/2 year old son for a physical so that I can register him for the special ed preschool he will be attending this fall. Will was diagnosed with Autism back in April. His regular pediatrician never thought there were issues with Will's development, so I stopped going to the ped's office after all of Will's shots were taken care of. His diagnosis was finally given after many appointments, calls, wait lists etc. - you all know how it goes - that was driven by me, his mother, and not his pediatrician.

So today I was back in that office. I was greeted by a new pediatrician, who just joined the practice. She seemed very sweet and knowledgeable at first sight. I began to update her on Will's diagnosis and what measures we are taking to address it. I said, Will has been getting ABA therapy every day for the last 7 months. She looked at me completely confused and said 'The what therapy'? I repeated, "ABA. Applied Behavior Analysis. Have you heard of that?" She responded: "um, no". Just to give you some perspective, there are more than 500 children under the age of 7 in my county (Loudoun County, VA) who are on the Autism spectrum. The what therapy?

I can't decide if I should be sad, scared, or mad. I am meeting with two state senators tomorrow to discuss the need for Autism insurance coverage in the state of Virginia. Wish me luck.

Early Signs

2008-04-04T20:44:00.000-04:00

When it's your first child, it's hard to really know what's normal and what's not, even if you are a well-educated parent. I spent the first year of my son's life working from home part-time, so I was able to observe and monitor his development very closely. I am one of those moms who like to observe, analyze, research and make conclusions based on the data at hand about everything. I do it for living too. And, I have to admit that I had attributed all of his early signs to his unique personality. We all did.

Here's my recap of Will's early signs:
1. Fascination with lights. Will used to stare at the Christmas Tree for hours. Naturally, since he was only 2-3 months old, there wasn't much else for him to do, so we all thought it was 'normal'. However, I remember that we all noted the intensity with which he looked at those lights. Intensity and duration thereof was the sign.
2. Whenever Will was in his crib and got excited when someone walked over to him, he used to (and still does) move his legs really fast, as if he's running. We used to say 'Oh look, he's running! He's moving his legs so fast! He will be a great runner!' Those are called self-stims, and are signs of Autism. He started showing those signs between 3-6 months of age.
3. "Will loves music! He is conducting! Look, he is raising his arms and moving his hands all over, as if he is conducting! He'll be a conductor! The next Mozart!" Or also known as 'hand-flapping', which is another sign of Autism. This habit emerged between the 3-6 months of age.
4. Staring at and examining small objects (toys), as if micro-analyzing them. "Will is going to be just like Mommy - he will be a great analyst! He is going to do data analysis, or become a great IT engineer!" Hey, I still believe that! :) I first noticed that about Will when he was around 6-8 months old.
5. No consistent eye-contact, and the was this general sense that he is not that much into people. Will has always been very emotional and affectionate with me, but even so, I always felt some resistance. I remember thinking that while it took me 30 years to become that way, he was born that way!

When I went back to work full-time, Will was 11 months old. I got Will into a really fancy daycare, where teachers (supposedly) had Master's Degrees or 10+ years of experience working with children. Three weeks after his first day, the head teacher told me that she and other teachers were concerned that Will was deaf. Will wouldn't respond to his name, and appeared 'in his own world'. His last week there, Will refused to go into his classroom. He didn't want to be around kids, he wanted to go to the hallway and stare at the giant fish tank for hours. Four weeks after his first day there, the head teacher asked me to remove Will from their daycare center because Will "failed to adjust like the rest of the kids", and they couldn't give him the 1:1 attention, which he insisted on. That was the beginning of our journey.

Will is my first and only child. He is almost 2 1/2 years old, and we got the diagnosis of 'Autism' this past Tuesday, April 1, 2008.