Ukraine Passports

A friend of mine who does not have a blog asked me to post this, as it is information Ukraine adoptive families would like to have.  I wanted to keep it in it's original form, but wasn't able to get it in one screen shot so it's cut into two.

It DOES happen!

Back in June I posted to the 16 year old me. My dad has malignant melanoma diagnosed 25 years ago and is watched pretty closely. I'm conscious of it but will admit to not being as careful as I need to be.

And then came the reality check, and sadly it's affected the life of a beautiful young lady! If you've been reading here for a long time, you've seen "googsmom" comment quite frequently. She is my longtime internet friend Jennifer. Several weeks ago her 17 year old daughter Mary was diagnosed with adult melanoma. This is not just "skin cancer" where you remove a little spot and get on with life. This is more. Like last week as part of the staging process she had part of her foot removed and has lymph nodes in her groin removed. Right now she is considered stage 1b, but if the lymph nodes come back positive that puts her in Stage III. There are only 4 stages folks.

Please go read Jennifer's blog, add Mary and the rest of their family to your prayer list and if you have teenagers, or you yourself are a sun worshiper, STOP NOW! I promise to keep sunscreen in the saddlebag of my bike from now on AND USE IT!

A Stolen Life

I've been trying to make a point of reading more lately. I just finished one of the best books I've read in a long time.

"A Stolen Life: A Memoir" by Jaycee Dugard

Do you remember her? Kidnapped in June 1991 at the age of 11, and discovered alive in August 2009. This is her story, written by her.

Jaycee is not a professional writer. Her formal education stopped in the 5th grade when she was taken on the way to her bus stop. But don't think her lack of "formal" education affected her ability to learn about herself and the world she was held captive in. For a woman who never had a writing class, she certainly has no trouble helping her reader understand what was an incredibly confusing situation for a young girl, including allowing us to see how a sick mind can easily control an manipulate a child. I am amazed at Jaycee's insight and her ability to make sense of her world. Jaycee's strength and determination to survive have given me a lot to think about as I read her book over the last two days.

For those of my friends who are into animal assisted therapy, you'll love the reunification therapist's use of horses to help Jaycee and the rest of her family learn not only about themselves, but others in the world as well.

An excellent read, with proceeds of the book allowing Jaycee to support herself, and the JAYC Foundation, which "provides support and services to ensure the timely treatment of families that are recovering from abduction and the aftermath of other traumatic experiences."

I'm also interested in Jaycee's pine cones. At the time of her abduction, Jaycee grabbed on to something sticky and pokey. It was a pine cone, which in her book she says was her last connection to freedom and her life before her abduction. Now it represents to her the seed of new beginning.

This makes me think of Axel, and all the other kids adopted out of horrible traumatic situations. Ever since Axel came home I have been trying to think of a theme for his bedroom. I think I just found it.

Joshua

My heart is breaking for the Parker family today. Several months ago they brought home two little girls from Ukraine.  I knew they also had a son, Joshua, who was having some medical problems but I didn't really know what all they were, other than it's complicated! I remember reading that she had two kids sharing a hospital room at one point and my heart broke for the whole family and what they must be enduring as they try to juggle everything. It is hard to have one medically complicated child, they are dealing with two.

My friends, due to progression of Chiari Malformation (among other things) that is no longer treatable, Joshua is on hospice care. Next week, on August 6th, they're having a 5 1/2 birthday party for him. Please go to my friend Lorraine's blog and read about the birthday party. Lets help make Joshua's day the most special of all!

It's COMING!!!!

Do you see it? Over there...on my left sidebar...that green box with a countdown going. See the countdown going? We are SO EXCITED to be getting that darned halo off!!! I've been trying not to complain, but the thing has truly destroyed our summer. There won't be much left of it when Axel's halo does come off, and he'll still be under restrictions, but he will NOT be encased in lambswool anymore, and he WILL be able to get wet!!!! Oh, how I've been waiting to get this boy in the water! How I've waited to see him RUN and PLAY...and get DIRTY like a little boy should.

Not only that, but just 3 days later is his 11th birthday. His first birthday party every. His first birthday with HIS family. The first time he'll have a day that is all about HIM!!!!  I can hardly wait!

Conflict of Interest: What is it?

Are you involved with a non-profit organization and concerned about conflict of interest? Do you wonder what's o.k and what's not? "Conflict of Interest", when it comes to non-profits, is a commonly misunderstood problem. It's important to make sure the organization you're working for or with has taken steps to avoid issues revolving around conflict of interest. Several people have come to me lately, asking what I know about "Conflict of Interest" when it comes to non-profit organizations, and I told them I would do some digging and answer their questions here. Keep in mind I am NOT an attorney. Not even CLOSE in fact! It has also been several years since I've sat on the board of a non-profit organization.

I know conflict of interest is discussed a fair amount in board meetings, and I remember voting on a conflict issue when I wasn't completely sure I understood the problem. One example presented to me by a reader was this, "If a non-profit requires a client to work with a specific company, when an employee of that company sits on the board of the non-profit, meaning a board member is profiting off the decision of the non-profit to require people to work with that company. Would that be seen as "conflict of interest?"

From what I'm finding, and what I remember from previous board decisions, yes, that is a very clear case of Conflict of Interest. In that particular case, the non-profit could avoid conflict of interest by offering several different choices to the client. Those choices should offer the same or similar level of services and be competitively priced with one another, which would allow the client to choose who to employ rather than being forced into that decision.

You can go here to read more about how to avoid Conflict of Interest with non-profit organizations. I hope you'll find it helpful. I found it kind of interesting to read as past issues with non-profits came to mind.

Children all over the world

There are children with and without special needs all over the world who meet the criteria of "orphan". The care these children receives varies from country to country. There are MANY countries who will allow adoption of children into the U.S, some are Hague Convention countries and some are not.

You can look up the information about adoption from ANY country by going here. There you will find information about how to adopt from each country along with statistics on how many children have been adopted into the U.S. from each country on the country specific pages. (however, I don't know how accurate those are. The Immigrant Visa representative from the U.S. Embassy in Belgrade says the Serbia statistics listed are inaccurate. The page lists 12 adoptions for 2010, and he says there have been closer to 50.)

There is also the ISS. International Social Services which may be helpful when dealing with a country in which no U.S. adoption agency has a program.

Be brave. Step out in faith.  Contact other countries. But also BE SMART! Work closely with the U.S. Embassies in each country to make sure you're not being taken advantage of financially. Find U.S. based child-centered non-profit organizations working in these countries to help you. You really don't have to dig very far to find this kind of information.

I've recently made some contacts in another Eastern European country that has only adopted a couple of children into the U.S. Hopefully I can post that information soon!

And so I slack....

I have become a blog slacker. What can I say? It's summer, and since Axel is stuck in this God awful halo, and it has been hotter than Hades for like a month, our summer has been very boring! I don't even think I've taken pictures since the 4th of July.

The other part about blog slacking is my blog reading. If you don't use Google Reader, you will spend a lot of extra time clicking around to all your favorite blogs. With GR, all your blogs are in one place! You can see who has updated and read their posts right there. It even puts the number of unread posts behind each blog name.  It's great. It's convenient. It's a time saver. But I haven't even been doing that. I am behind on my blog reading, so those little numbers behind each blog name have been growing at a rapid pace.

There is a special place on Google Reader where you can "mark all read" and start over. It will wipe out all those numbers behind the names and you won't be behind anymore...in theory. But I can't do it. I can't click that button. I feel like if I do I'm going to miss out on something; some big announcement, a child coming home or amazing pictures of someone's vacation.

So this morning I went to google reader and I did it.

I checked the box.

How's that for an exciting summer?

The Michael's Incident

Awhile back I had an incident in Micheal's craft store. I'm sure you've had a similar experience yourself. You know, when you go into the store for one small, inexpensive item, and spend...more. There was a similar incident five years ago, when I came home with a Xyron 900 (used approximately 7 times since purchased.)

On this day I was at the store to get velcro to modify Axel's shirts for his halo. Velcro. It only costs a couple of dollars.

But there is something about a store like Michael's, and all the "how to" books, and shiny jewels, and and and. It all just makes me feel so CRAFTY, and I feel that tiny little creative gene buried deep in my DNA squirming around. It says, "Set me free!"

The next thing I knew, I had done just that! I had FAR more stuff in my cart than I ever needed. But I was going to CREATE stuff, all with Polymer clay. No really! But you can't just buy the clay, you have to buy the really cool gadget tools too. Like the pasta machine (really!) and rollers and cutters and other little gadgety tools that I'm sure I'll use eventually. And books. Lots of books!

Some of you have have been around a couple years, and might remember when I got a bug to create clay babies. There are people in this world who can do some amazing things with polymer clay, and I wanted to be one of them. My results were not quite what I had in mind....

It's o.k. to say you're afraid. I was too! They're scary looking. I decided polymer was not for me, and I swore off clay babies for good. I would just have to admire them from afar. 

So how is it I now had a cartful of clay tools and stuff again? Because THIS time I got smart, and decided to stay away from realistic looking things. I mean, if it resembles something real, like a baby, it's too easy to see the flaws, right? 

This week I have finally had time to play with my clay. (somehow that sounds wrong.) First I made this guy, (it's a baby in a walker for those who have even less imagination than I!)  and I loved him...

That was until I took a picture and realized how unforgiving photographs are! Every little nick and blemish shows. Have I mentioned I am not the most careful person in the world? (There is a reason Dean won't let me paint wall in this house!) I'm pretty sure this has to do with my short attention span. Anyway, I was determined to try again, and this time FOCUS on what I was doing and not have little problems glaring back at me. So then I made these guys:

You might have noticed a color theme going on. For those unfamiliar, this blue and yellow are the colors that represent Down syndrome. 

So that's what I've been doing the last couple of days. I'm just going to keep practicing and practicing until I get good. I have an idea in mind that has been there for years. But whatever I do, I promise to never touch a clay baby again! 

*disclaimer* these items were created using the step-by-step instructions found in the book "Polymer Clay Characters" by Annie Lang, but don't look at the book and think mine look like hers. It's that short attention span thing.

Dreaming Under Prayers

I've spent days trying to formulate this post in my head. It deserved a post a week ago, but the words weren't coming.

It all started with a knock at the door.

It was the UPS delivery guy, bringing a package for Axel, addressed from Dean's cousin Mona out in California. Axel was very excited to get a package with HIS name on it!

Together we opened the box, and I pulled out the letter that was enclosed.

Immediately my tears started flowing. In the box was a prayer quit, and it is beautiful!!!!  It is beautiful, with different cowboy patterned fabrics. It is perfect for Axel! All made by Mona and her friends in the quilt group at her church. Mona asked that they make a quit for Axel, so that we would have a visual way to see all the prayers that are being said for Axel and the rest of us. Each knot in the quilt represents a prayer said, and as I touched each and every knot, I felt the love that came with each one of them.

But Mona could not know what God does. How PERFECT this quilt is for Axel. You see, Axel loves little "things", like yarn,  to roll between his fingers. It's how he comforts himself when he is stressed, and it's how he puts himself to sleep at night. Now, as he goes to sleep, he finds the tail of a knot and rolls it between his fingers. It's like he's rolling all those prayers between his fingers, feeling each and every one of them.

And I have no doubt that's exactly what he's doing.

Thank you to Mona, and the Prayer Quilt Ministry at St. Andrew's Lutheran Church in San Diego, CA, for covering Axel and the rest of our family in prayer.

Edited to add: Mona resPonded tonight, and thought I might like to know a little more about how the prayer quilt came to be. "...The ladies in the Prayers and Squares group at my church take requests from members and make these beautiful quilts. Then on Sunday morning, any quilt that was made that week is presented at the altar and the congregation is told why each particular quilt was requested. After the service the quilts are laid out in tables in the courtyard and members stop by to tie the knots and say a prayer...."

I'm home

This will be short, cuz I'm *really* groggy and am fighting to keep my eyes open.

First things first. I do NOT have esophageal cancer. YAY!

I do have some other issues going on, all of which can become more serious later on if not dealt with.

I have a hiatial hernia, which is why the constant pressure against my esophagus, and why it's worse when I lay down. It can also cause reflux into the esophagus.

I also have a Schatzki's ring. It was big enough for now that it didn't need to be dilated, but it will have to be watched. This is where my food is getting hung up, and why I feel like I have something stuck in my throat. Because I do.

Schatzki's rings are caused by GERD. Untreated GERD, combined with the other issues, put me at more risk of developing Esophageal cancer later on, so I need to get the GERD treated. Didn't know I had it. I have no heartburn or anything like that. So, I'll be having an overnight PH probe done. YIPPY SKIPPY!

I'm just reading the GI's report now, and it says suspect laryngopharyngeal reflux as well. The treatment for that is the reflux meds I already tried last spring, which did nothing, so I'll have to talk to her about  that.

I will finally say the C word now. Cancer. My biggest fear was esophageal cancer. I'll tell you know, if you have untreated reflux, you need to treat it aggressively! Untreated reflux is the cause of Barrett's esophagus, which leads to adenosarcoma of the lower esophagus. Once it's in your esophagus, by the time you start having symptoms it is very often already in your stomach.

Ok, I'm going to go take a nap now. Nighty night!

Climate Changes

In Minnesota, we get one, sometime two days out of the summer that reach 100*. I think we're on day 10 or 11 or something like that now. At the moment it is 99*.

The humidity level in the rain forest average between 77 and 88%. We are currently at 85% humidity here! Did I mention this is Minnesota???? 99* and 85% humidity. YUCK!!!!

It's still better than snow though. I'll take this over snow any day!

Entrapment

I *really* wanted to get a picture of this, but it would have been cruel to leave the child there to get the camera. It was tempting though.

Axel was playing with his train table. He was just barely out of my sight, but in full sight of Dean. He plays so nice and quiet, that boy!

Then Dean said, "Axel...? What are you doing?"

Silence

"Axel...are you stuck?"

A tiny voice said, "Yes." (YAY! A developmental milestone!)..... "GUCK" (stuck)

I went over to investigate. Apparently Axel had dropped one of his favorite booklets under the train table and sat down, and leaned under the table a bit to get it. That's when the bottom edge of the table became wedged between his halo bolts, uprights, and other parts. It took BOTH Dean and I to get him "un-guck".

He was probably there a full 5 minutes before we realized there was a problem. He never made a sound, just accepted the fact he was now trapped and resigned himself to that fate. A couple months ago he got his finger caught in the mechanical parts of a toy. He pinched it pretty bad, but no sound was made. I didn't discover it until I walked by his room, then did a double take when I realized he had an odd look on his face, while holding a toy in his hand. Or was he? Nope, his finger was badly pinched in the trigger of a nerf gun.

Never a sound was made.

So many people have asked how Axel has done accepting the halo. When he woke up with the halo, the look on his face was that of resignation. "Now I have this thing on my head. Oh well." He has never once complained about it. It's kind a sad, really. Axel is too accepting of things. He hasn't yet learned that he can put up a fuss. He can complain. He can express PAIN. He can YELL if he is hurt...or if someone does something mean to him. We know why he is this way. It's learned behavior. It's from years in an institution and having absolutely no choice in anything. From being imprisoned in some fashion or another. The emotional scars speak for themselves. Hopefully someday Axel will learn that he can speak for himself.

The Art of Distraction

The purpose of this post is to distract you. You know, like a slight of hand kind of thing, only this will be on your computer screen. Are you ready?

The Mystery of the Puddle in the Car

We bought a car in September of last year, right about the time we were trying to scrape together the cash to bring Axel home. It's a flood car. Do you know what that is? It's a car that's been in a flood, totaled by insurance, auctioned off, gutted, and the entire inside re-done, wiring checked out, etc.

We've bought flood cars from this same dealer before, as have many of our extended family members. This salvage dealer has always (and still is) great to work with. We bought a 2009 Toyota Camry with just 30,000 miles for less under $6,000. Car runs GREAT! Every thing in the mechanics and wiring is perfect. (Dean is driving our other flood car. Paid $4,000 and he's put 120,000 miles on it in 2 1/2 years! Its certainly paid for itself.)

Taking deep breaths as I remember I have a really big day tomorrow. Breathe in, breath out....

So no issues with the car. Drove it all winter long without issue. Drove it all spring without a problem. Vacuumed it out about a month ago, both front and back seats, and all was well. Love my car.

Until about 3 weeks ago, when I noticed a bottle of water had leaked on the floor of the rear passenger seat. There was standing water back there, so I soaked it up with a towel. Two days later there was another puddle there. There has been a puddle there EVER SINCE! I suck it up with my carpet cleaner and the next morning there is 1/2 inch deep puddle there again!

Trying not to imagine a tube being shoved down my throat.

Where could this be coming from? I could see if there was...like...water in a door or something, but FAR more than a door's worth of water has been sucked up from the floor of the car. And...wouldn't we HEAR the water in the door? I could imagine this happening if there were a leak in the floor and we were driving through rain or something, but it happens with the just parked in the driveway. IN.THE.SUN!

Really totally freaked out about what the results of tomorrow could be.

My theory is this car has a ghost.

Some of you may remember my posts about the ghost in our house. You know the one who turns the bedroom t.v. on half way, switches lights on and off, hides my keys and harasses the dogs when they're napping.

Whatever you do, don't google the symptoms I've had for the past 9 months. The searches never lead to anything good. I know, I've read the first 30 pages of the search results using a wide variety of search criteria.  

I don't think it's the same ghost. I think this is a car ghost. Why would a ghost leave a puddle of water in my car? I'm thinking I don't want to know, but I'm getting quite annoyed with it. It makes my car stink. It get stuff wet. It eliminates Angela sitting there when we're going somewhere as a family. I could have Axel and Angela switch seats, since Axel's feet don't reach the floor, but this is Angela we're talking about. Change is NOT going to happen.

I hope I remember to not eat anything after midnight and until my late afternoon appointment. I have a tendency to absentmindedly put food in my mouth when I'm on the phone. If you talk to me tomorrow, remind me, ok?

Dean didn't really buy my "ghost in the car" theory. I'm not surprised really, considering he also doesn't believe there's a ghost in the house. So I googled, puddle+rear passenger seat+camry.

Guess what? It's NOT a ghost! It's a plugged condensation tube! See, Google CAN be your friend when you're searching non-medical related stuff. WHO KNEW?! It it wasn't 100* right now, I would go pull the carpet out of my car to find that dang hose. Maybe tomorrow, when I'll need further distraction.

Project de-clutter

A year or so ago we rented a HUGE dumpster, and filled it. Most of that stuff came out of our storage room that the mice had infested, along with our shed that was just as bad. Most of the stuff we ditched we hadn't seen in years, so it didn't really make a visible difference.

Thursday was a bit trying for me, and really threw me for a loop. I keep telling myself that I'm imagining the lump, and they're not going to find anything anyway. And then I swallow again. Or take a pill and it gets stuck. And oh yeah...the doctors felt it.

My mom said she is coming down for the endoscopy. My mom lives 4 hours away, and while she is often in "the cities" for various ministerial obligations, I don't remember the last time she had time to stop in. But now she's coming down for this. I will be honest...that freaked me out more than the fact the doctors felt the lump too. My family is pretty medically knowledgeable, and my mom rearranging her schedule to come down for this two hour procedure...well..wouldn't YOU get freaked out?

So, the clutter in my house has been driving me crazy for several weeks, but I just haven't had the energy to do anything about it. Somehow Thursday put me over the edge. As the kids' PCA was leaving we set her schedule for next week. She'll be keeping Axel busy (Angela will be away at camp) so that I can work on the de-clutter project.

Then Friday happened, and as I sat at the kitchen table I could feel the kitchen closing in on me. It was crushing me; the cabinets, the stuff collected on the counter tops, the cabinets I'm afraid to open, the poor use of space because of the previous owner who installed them. My heart was racing and I couldn't look away from it. I think I was having a small panic attack. And now my mother is coming.

I emptied the worst but also most-used cabinet when I realized I needed containers. Axel and I went to Target and got some "stuff" to help me organize. At midnight last night I had one wall of upper cabinets done. (One coffee drinker in the house and 38 coffee cups? I think that's called "excess"! Had my mother opened that cabinet, a cup would have fallen on her.)

I also attacked the school corner, which for weeks has been a collection of bags and piles with nowhere to put the stuff. Oh, and I put the Nativity set away. ;-)

Today and tomorrow I'll be taking a break because I have to pack Angela for camp, and make the four our one-way drive tomorrow to drop her off. Monday I'm back to de-cluttering.

Oh, and for those who are wondering, Tuesday is my endoscopy. I know they won't find anything. I just know they won't, because I'm only 44 and I'm not in a high-risk group. Very rarely drink, don't smoke, sometimes eat fiber (GREEN SMOOTHIES!) and I don't chew tobacco. Given all that, its very unlikely they will find anything. I would think if there were something serious there, it would feel worse than it does. I can eat, I can swallow (though sometimes stuff gets stuck) I'm not in pain...usually.  I'm fine. Really. But if they do find something, they'll be taking a biopsy.

Well...wth?

ok, well I started this post three times, and then erased it. I have no idea what to say. I should probably just delete now.

........2  hours later....

I would like to start the entire day over, thank you very much. I just went to the doctor to rule some things out. That's all. I should know my track history with that is not very good.

Good grief...no clue what to say. It has been a long day.

.......30 minutes later.......

A few months ago, I would guess October or so, I started having some trouble swallowing. It felt like there was a lump in my throat, and food was getting stuck right there. It caused me to clear my throat constantly. I really didn't have time to do anything about it. I was getting ready to travel to get Axel and all the preparations that come with that.

After Axel and I came home I went to my ENT. He looked down my throat with a scope and from there couldn't see anything, and my vocal chords looked fine. The most common cause for chronic throat clearing is reflux, so he put me on Prevacid. I took that for 6 weeks, and there wasn't any change.

The throat clearing got better for awhile. "Better" being not "constant".

In May when I went back to Serbia, it was starting to bother me again. Worse this time. Sometimes when I ate, it hurt to swallow as food moved past what I felt was a lump. My friends in Serbia made comments about the throat clearing, which was now constant. Yeah yeah yeah...I'll get it looked at.

Then on Sunday, I was in the shower washing my face when a spot on my nose started bleeding....and bleeding and bleeding. Ok FINE, it's time to go in.

Today was the day, and the spot on my nose was still bleeding. What was on my nose appears to be Basal Cell Carcinoma. The plastic surgeon happened to be in today, so he removed it and sent it off to pathology. He's pretty sure, based on how it looked, that it was Basal cell. If there's a skin cancer to want, it's Basal Cell. My dad has Malignant Melanoma, and I'm glad that's not what's on my nose. Basal cell = remove it and move on.

My throat, on the other hand, is another story. I had already diagnosed myself with something related to my thyroid. It's easy to treat, and in the grand scheme of things not that big of a deal. Even if it was thyroid cancer, I could handle that.

The doctor felt all over my neck, commenting on the very large lymph node under my jaw. She did not feel any nodules in my thyroid, and it was of normal size. She had me swallow water, and as I did she could feel the lump I was feeling. In fact, if she put any pressure at all there while I was swallowing, it REALLY hurt to swallow. The lump didn't hurt, the swallowing did. She called another doctor in, and he felt it as well. They agreed, there is a lump, and it feels as if it's inside my esophagus. Now they're scheduling me for an endoscopy so it can be looked at, and a biopsy taken. By the way, they did a thyroid panel, and those results were just posted to my online chart, and my thyroid levels are well within normal limits.

Google is not my friend right now. In fact, I'm just going to stay away from it all together for a bit.

I do know that I don't have any of the "high risk behaviors" usually associated with things like....esophageal cancer. I don't smoke, I rarely drink, I don't chew tobacco, and as far as I know I don't have reflux.  I am about 30 lbs over weight, and my diet basically sucks. I also know that all of that doesn't really matter. A person can have no risk factors and still develop esophageal cancer.

I begged them to tell the GI doctor to put me all the way to sleep for the endoscopy. I don't want to remember it, and I don't want to hear stuff. I also don't want to feel the scope shoved down my throat. I'm a big baby, I know.

I will not lie. This pretty much freaked me out today, along with a couple other factors I haven't mentioned here.  Axel and I went to the grocery store and I wandered around there three times and still couldn't figure out what I needed to get. Ok, well that happens a lot, but this was worse than normal, I think.

Eyes of a Child

In the eyes of a child there is joy, there is laughter

There is hope, there is trust, a chance to shape the future

For the lessons of life there is no better teacher

Than the look in the eyes of a child

 On occasion you will hear me complaining about Zhen's eyes. Seriously, why couldn't the orphanage arrange to have his cataract removed when he was a baby? Then his vision could have developed normally as he grew. The sad truth is that in Eastern Europe, babies with disabilities just don't get the medical care that they need.

Then I stop whining. And I'm thankful. For I remember a bright and beautiful boy that I met at church in Ukraine last summer. Meet Andrei...

About two years ago, Andrei was having some problems with his eyes. His parents took him to an eye specialist in Kiev who recommended laser surgery! Cool huh?

After the laser surgery was performed, the doctor came out to talk to the family and said... "Oops, we made a mistake and your son is now blind in that eye". (Can you even imagine?! The word "malpractice" comes to my mind.) The doctors did not operate on the other eye at the time, (thank God!) but said that it would need surgery in the future.

Over the course of the next two years, Dema and Marina, Andrei's father and mother, home schooled Andrei because the doctor said that a blow to the head or a fall could make him permanently blind. Now, I ask you, is that any way for a young boy to live, in fear of getting bonked on the head or falling down? No rough housing with his little brother? No running?

Now Andrei is now down to 50% vision in his one good eye.

What a nice looking family! Andrei's father leads the singing at church and teaches young adults. His mother is the church pianist. This photo is a couple of years old.

Last Friday, Andrei was having some problems with his eye and so the doctor wanted to take his eye out (!!!) and coat with silicone to help preserve the eye. Well, instead of that (sheesh!) we would like to get Andrei to the United States as quick as possible so that the doctors here can work on him. Marina had an appointment today at the US embassy in Kiev and thankfully, she was able to get the visas they need to leave Ukraine right away.

In a couple of weeks Andrei and his mother will travel to Chicago. A doctor there believes that he can help save his one good eye. A nearby church has agreed to host mother and son for one month while Andrei receives treatment. The good doctor cannot treat Andrei for free, but he will reduce his fee. What a great opportunity!

In keeping with our mission to improve the lives of children in Crimea, Project TLC would like to assist this family with their expenses. We will dedicate contributions received over the next two weeks in order to preserve what is left of Andrei's limited eyesight.

The total projected need is at least $2000, so please share this far and wide, and donate as you are led. You can go here to donate,

Or you may send your gifts to:

His Kids Too!
219 – B Delta Ct.
Tallahassee, FL 32303

*note Project TLC on check memo

God bless you!

Hoops

Axel and I are gonna go buy hoops today. Maybe.

A first!!

Since Axel has been home for 7 months now, we don't see quite as many "firsts". When we do, we can sure tell, but there are times when Dean and I look at each other and ask, "I wonder if he's ever done this before?" We can only guess.

It is evident to me that Axel got away with A LOT of naughtiness wherever he was. Clearly tears were a tool for avoiding anything that appeared difficult to him. And when he thinks the boss of the place is out of eyesight? That naughty laughter starts almost instantly. He doesn't realize we can hear what he's doing. LOL

So for the past several months Axel and I have been sitting down to the table each day for school time. As long as we're doing something that is easy for him, he's happy to comply. The second something is introduced which is even slightly challenging to him, the tears start to flow. Well, it's not really tears, it's SCREAMING/CRYING.

When this first started, I would give him a minute to compose himself, then we'd start up again. Then it became an instantaneous occurrence, so I would remove him from the table and off to the crying spot until he calmed down. You know, it is SO EASY to see what is really happening when you're not in the midst of things, or are an outside observer! LOL It took me a couple days to realize the crying jags were lasting longer and longer each time. In fact, I think it was the time he cried for a full hour. Only it was a rhythmic, no-tears-involved kind of cry. Mr. Smartie pants figured out that the longer he cried, the longer he'd get to stay away from that table.

There is also another dimension to the cry. I'm pretty sure some of it is reflex. Like it is a learned behavior and normal for him to cry for hours at a time and once he gets going he can't stop himself. He gets a look of desperation on his face, similar to a child who cries then does the breath-holding thing. He starts to desperately point at random objects all the while crying this rhythmic cry. The first few times it was very sad to watch. After that it just became annoying. Frustrating. Sometimes he would get a look of total fear in his eyes, which made me wonder what memories are locked inside him mind. Ending our lessons on a positive note was nearly impossible some days. Some days I felt like the meanest, most evil mother in the world. Some days I felt like I'd lost all compassion. Some days even I avoided our lessons!

This behavior was NOT going to fly in school. I wanted to tell him, "Listen kid, you're in for a reality check pretty soon if you think you can do this at school!"  I needed to teach him a way to turn this off. I hate to compare my kids to my dogs, but there is so much about kid training and dog training that is cross applicable. With dogs, when there is an undesired behavior, you need to only stop the thought process, then predict the behavior so you can guide them to a different response the next time. Do this enough times and you will erase the "tape" that has been replaying over and over again in their brain, replacing it with a more appropriate thought process. How could I do that with Axel and his crying that so interfered with what were sometimes very minor tasks?

One day back in April, Axel was working on a letter activity with me. He could recognize all of his letters by that point, both upper and lower case. We were matching them together, an activity that was easy for him. We'd only done 3 pairs when he intentionally start matching them incorrectly. This is called "attention seeking behavior", and he does it a LOT! He would look at me out of the corner of his eye, then put an incorrect match together, then sign "wrong", and get the guilty look. He would do it again, and again, and again if allowed. I wouldn't allow it, instead removing all of his choices so the ONLY match possible was correct. Ohhh I was playing dirty and he didn't like it. The crying started. Loud, frantic, fearful crying.

"Axel, jump up and down like mommy."

He instantly stopped crying and started jumping. Seriously, I've never seen anything like this! The ability to STOP like you'd never been crying in the first place. Like you sneeze, and then it's done kind of thing.

"YAY! Ok, back our letters."

This worked two times, and then he was on to me. He didn't WANT to stop crying, because the crying is what kept him from having to work. It's more than a power struggle though, because once the crying started he couldn't turn it off without having his brain engaged with a different activity. It's slightly more than just distracting him. Can you tell I'm having a hard time explaining this? LOL

I asked myself, "What have I done that is really very hard, maybe even painful, that I needed to distract myself to relax?" Well, giving birth of course! And what are we taught to do? BREATH! Deep, cleansing breaths. Later that day, when we were just hanging out having fun, I taught Axel how to take "big breaths", and blow it all out. I spent a couple of days practicing this with him here and there. I even modeled how to use this when crying. I cried a fake, frantic cry, then put my hand on my chest and took a deep breath with a big exhale, then back to what I was doing.

Finally it was time to sit down and do some work again, and within a couple of minutes the crying started, "Axel, take a deep breath." He put his hand to his chest, sucked in, exhaled, and the crying stopped. Within just a few days he was able to make himself "relax" and take a deep breath, and stop the crying on his own. It was great!

And then he had his surgery.

A few weeks later, when it was time to start our lessons again, it didn't take me long to discover that he'd lost many skills, including the ability to calm himself. Even the easy tasks were now a challenge.

I was so frustrated. All that work down the drain. We started over.

Then yesterday happened. Axel and I worked at the table on LOTS of different activities, and for the first time ever, he didn't cry. He didn't shed one single tear AND he did a couple very challenging activities!!!  Axel felt success. He did it. He made it through the lesson without crying. He did some things that, while they were within his ability, were very challenging, but he DID THEM. I'm praying that both Axel and I can remember how good that felt, to get through a lesson without all the unnecessary stress.

School plans for fall: Pt 2

And so, just days before Axel's surgery, we met again to discuss observation reports and determine how to best meet Axel's needs in the next school year. With surgery looming and just days away, school decisions, bonding issues....this was a lot of stress at one time. I promised myself I would NOT cry during this meeting. Most who know me will say I am NOT usually a crier, and yet the people sitting around that table had seen me cry at every single meeting, and heard me struggle to maintain composure on every single phone call. Please God, just this once, let me be tear free!

The observations from the DHOH staff were all the same. Axel's communication needs were not being met in the classroom. There were times when Axel would...in sign... initiate conversation with staff, and either they didn't notice or they didn't understand him. There were other times when staff initiated conversation with him but they either forgot to sign, or signed incorrectly so Axel couldn't understand them. By early afternoon, Axel would stop communicating and start acting out instead. Please remember, this is NOT the fault of the classroom staff! It would be like expecting your child's regular ed. teacher to suddenly learn ASL overnight. It's just not possible. 

We discussed options such as an ASL interpreter. Axel does not have the ability to access an interpreter at this time. He can't understand this person is signing what that person is saying. Its too confusing for a child at Axel's level. We discussed the possibility of a classroom aid who is fluent in ASL. (there are a few in the district) That brings the question of who would be teaching him, and who would be assessing him? Neither of these options allow for Axel to have free and natural communication with his peers or classroom staff. The Dhoh staff recommended that Axel go to the ASL program. (Despite my prayers, I'm pretty sure I was crying by this point.) 

If Axel had even the slightest hearing loss, the decision would be easy...he could go to the ASL immersion program in the neighboring district. 

But Axel hears.

In the end the district agreed to write the referral to the other program, but because it's a program for deaf students, the other district has the option of rejecting the referral. Those seats in the classroom are meant for students who have hearing loss, not kids like Axel.

Two weeks ago I found out, informally, that Axel has been accepted into the other program! Not only that, but they are EXCITED to have him there! Just like me, they can't wait to see Axel SOAR with this new and constant exposure to a fluent language model. I know our home district is excited as well. There will still be kinks to work out, and behaviors to work through as Axel realizes that everyone there can understand him even when he's yelling at them in made-up signs. LOL