Tuesday, February 26, 2008

The word that scares everyone....

On February 5th, we met with a new pediatric neurologist who was the polar opposite of the asshat who works in our county. The new doctor greeted Kate and crouched down to talk to her. She talked to us. She LISTENED to us. We loved her.

Even though she told us the exact opposite of what we wanted to hear.

Kate has autism.

And it's funny (well, funny as in "strange" and certainly not funny as in "we're having such a good time"), I've asked doctors repeatedly, "Are you SURE it isn't autism?" They kept telling me, "no -- she's far too outgoing." As much as I knew that Kate was suffering from autism, it still has hit me hard. Hit both of us hard. To be honest, we are both still feeling shell-shocked. Scared. Angry. Confused. But we know this the diagnosis fits.

Sadly, it fits all too well:

  1. We have to work to get eye-contact from Kate. We have to ask for it most of the time. And ask for it multiple times. Or take away an item. Or snap our fingers. Or clap our hands. Spontaneous eye-contact is rare.

  2. Kate is absolutely pre-occupied with books. But because her fixation is books, even experts have overlooked this problem. "A kid fixated on books," they think, "what's bad with that?" Everything, if books are more important than people, relationships, learning, and living in everyone else's world.

  3. Kate doesn't play with toys much. Or friends. When she does, it is because we have specifically taught her how and demanded that she do it if she wants her book.

So right now we are trying to learn and learn FAST. We don't know a lot, but we know this:

  1. Autism is a medical disease that is evidenced by social withdrawal and several other physical symptoms such as digestive issues, sleep problems, learning problems, and impaired relationships.

  2. If not treated intensively, it gets worse. Much worse.

  3. The brain has a window of opportunity to be "molded" more easily. This is typically before age five. While good interventions always have their place, these interventions are more potent when the brain has better plasticity.

  4. Some children can recover from autism; all can improve with treatment.

  5. We're feeling fragile now, but we know we are strong. We could, however, use a few prayers right now.

  6. Kate will become the best Kate she can be and there's nothing we won't do to ensure that happens.

  7. God has blessed us with this beautiful, intelligent, intriguing, grace-filled child because we needed her and she needed us. God has a plan for us and, although it may be painful right now, we welcome His plan and every opportunity to show the world that everybody matters. We are still The Lucky Ones.
More later, but we wanted to update those of you who were wondering about Kate's appointment. The new neurologist has been a definite blessing. She also ordered more bloodwork on Kate (bloodwork, by the way, that I had requested from the AssHat neurologist of our county), and it's all come back abnormal. We will also be doing a 48-hour ambulatory EEG to determine if the abnormal electrical activity is truly seizures or something else. More on that fun procedure later.

Please keep us in your prayers. We'll be fine, but we're just in a bit of pain right now. Ultimately, we're grateful for a diagnosis that is leading us to a better understanding of our sweet girl.

With love from our home to yours,

The Lucky Ones

Sunday, February 10, 2008

China Weather Update

Addison's orphanage is in a city that was one of the hardest hit by the weather crisis, but thanks to the wonderful organization, Half the Sky, they received funds to purchase heaters, diapers and other needed items to get through this difficult time. It means the world to know that our son is the recipient of so much love.

That's the really neat thing about adoption: It involves so many people who love our children before they can come home to us. With Kate, we believe she had a birth mother who loved her, we know she had a foster mother who loved her and nannies that adored her.

With Addison, we have pictures of him with his foster mother, with a volunteer in the hospital when he had his heart surgery -- we know he is deeply loved. I really believe that the gifts of love he is receiving now is what God has planned for him before we can love him in person. I guess that's why I'm okay with the waiting.

Anyway, thanks for your prayers for the Chinese orphanages. They are still struggling and Half the Sky continues to do what it can to provide them with what they need.

Sunday, February 03, 2008

Bundle Up, Baby Boy....

China is currently experiencing the worst snowstorm in 50 years. We had heard only a bit about this the other day, but did not realize the enormity of it. Even the balmy areas like Guilin (where Kate is from) whose climate is much like ours in Florida and Guiyang, Guizhou (where Addison awaits), is experiencing heavy snow, plummeting temperatures and VERY LIMITED ACCESS to such things as safe drinking water, heat, diapers, etc.

According to http://www.china.org/:

The snow, the heaviest in a decade in many places, has been falling in east, central and south China since Jan. 12, causing deaths, structural collapses, power blackouts, highway closures and crop destruction.
Hunan Province and the western Guizhou Province have been the worst hit by the unprecedented spell of severe weather.

From http://chinatravelguide.com/ctgwiki/2008_China_Snowstorm
According to Zou Ming, deputy director of the Ministry of Civil Affairs, some 223,000 houses collapsed under snow and ice, 1.8 million people were evacuated to shelters, and 18 million acres of crops were destroyed.
Some remote areas in Guizhou (贵州) are starting to run out of food, water, and medical supplies.

Worst yet to come
The snow has destroyed large areas of crops, toppled power lines and disrupted trains and trucking lines in Central (华中), Southern (华南) and East China (华东). On Feb. 2, China warns that "The most difficult period is still not over yet. The situation remains grim," quoting to the cabinet's summary of an emergency meeting to coordinate relief efforts. Weather forecast predicts that more snow, sleet, and heavy wind will hit central and eastern provinces soon.

Our little boy is in 30 degree weather, with intermittant power and limited access to what he needs to be healthy.
We are very concerned about him and
have no way to find out how he is doing.

Please, please, please keep Addison and all the children (and their nannies and foster parents who are caring for them) in your prayers.

And if you can spare a few dollars, please consider donating to the emergency fund run by Half the Sky foundation. Read more information below:

A note from Jenny Bowen, founder of Half the Sky:

Latest reports tell us that this weather is likely to continue for another 10 days. Because local governments are overwhelmed by the situation, it seems that there is, in many places, no relief beyond what we can provide. We have not been able to find news of any international relief organizations working on the ground although the China Red Cross is apparently providing some meals to stranded motorists.

Guiyang, Guizhou – UPDATE: Power is intermittant. They repeat the request for diapers and now understand that HTS has okayed the purchase.

As it is impossible to get new supplies of goods to the markets, costs of basic necessities are doubling, even tripling in some cases. We are now working with the Ministry of Civil Affairs (which has the responsibility of dealing with natural disasters nation-wide) to determine which institutions outside the HTS community need our help as well. We will continue funding the costs of basic goods until the money runs out. In answer to some of your questions:

We can’t ship the necessary diapers, blankets, clothing, food ourselves. There is no transport that can get through right now. We will continue working to find a way. In the meantime, we are wiring funds where banks remain open. Where banks are closed, we are guaranteeing reimbursement to any citizen who funds the purchase of needed goods for the children.
In every case, the institutions are calling us to state the needs, we approve, and they know they must provide us receipts for all purchases.

We’ve now placed a special “Little Mouse” button on our home page which will take you right to the fund page. If you are having problems donating online, please try again. I wantto tell you how deeply, deeply moved the orphanage directors, staff and all of us at Half the Sky are by your concern and your generosity.