Green Bottle Boy Turns 11 and Gets an Orthodontic Device to Celebrate!

How does a mom face the adolescent years when her son is Green Bottle Boy? Very very apprehensively. Of course, I do have to give him credit. He is the kid that we always predicted would be our trip to the emergency room and in all 11 years of his adventurous life, including times when he fell through a window protector, fell and hit his neck on the sharp edge of a table, swallowed a bug that flew into his mouth while walking down stairs, and being my only child to ever truly choke on something, he has never had a trip to the emergency room. That's actually pretty impressive.

Of course, he didn't start out so lucky. Green Bottle Boy was born with an extremely rare neural tube defect and leading up to his birth, we weren't even certain how long he would live. So, every March I reflect on how one simple brain surgery completely fixed the defect and he has thrived since even before it was corrected. The story of his birth, though so stressful at the time, is now a beautiful monument to how precious he is.

So, in reflecting upon what is wonderful about him, I have to say that one of the things I love the most is how his brain works. For instance, several months ago, I gave him a math placement test. I assumed that he would test into 5th grade in the new curriculum (which I ultimately didn't switch to), however, I thought I better be certain. I told him that he was supposed to do the first 15 questions, have me check it, complete the next 15 questions, have me check it, complete the next 15 questions, have me check it and then finally move on to the last set of questions.

"You need to do one section at a time and then have me check it. Do you understand? Because you don't need to move on to the next section if you miss too many of the questions in one section. Got it?"

"Yes Mom, yes Mom, I get it."

So, of course, he sat down and did the entire test without having me check. That's not the great part, though! The great part is that he failed the 4th-5th grade portions of the test, but passed the 6th-7-th and 8th grade parts with flying colors! Now, what in the world do you do with that?

He's obviously a really smart kid. He loves to read, is a gifted artist and musician, and is incredibly creative.

Some of my favorite quotes of his are:

1) (While holding his head in complete anguish over my lack of understanding) "I wish you could just be inside my head and understand what I'm trying to say!"

2) "Yes mom, I'll take care of the tarantula and you won't need to help with anything."

3) "I am too paying attention!"

4) "Why in the world did you put my desk in front of the window!? You should know better! The raindrop patterns are way more interesting than handwriting!"


I also love his fascination with nature. This kid, a kid who took years to figure out where exactly our living room was located, actually found a sun dried red ant on our red deck. The ant was "frozen" in a dramatic position, one arm reaching toward the sky as though it was begging for mercy as the sun relentlessly shined its rays on him.

His first word was, "Tree!" He was 11 months old. It was just really important to him. His second word was banana, which was pronounced, "Balalala" rather than the typical "Nana" that most kids use.

He loves identifying plants, tromping through the woods and just laying in the sun. He is really the quintessential little boy.

But, he's also not so little anymore!

Society Without God

I just finished reading "Society Without God" by Phil Zuckerman. Although a very repetitive book, it provides some useful insight into how "secular" people view religion, and, without the author fully understanding, how "secular" people confuse true Christian with Civic Religion. Of course, many Christians confuse real Christianity with Civic Religion as well, so there needs to be even more grace for those who are completely separated from God and lack understanding. Obviously, it's a deceptive topic.

Apparently Sweden has a national church of which people can pay taxes and become a member. Any person who truly follows Christ sees an obvious problem with that (many people who like organizations such as Vision Forum probably don't). However, it is apparent that the Swedes have bought into their own version of Civic Religion, just as many in America have, and that the Swedes have brought it to it's ultimate outcome: death. Sweden, despite it's national church, is a completely secular nation.

What was interesting to me in reading the book, was the outlook of the Swedes towards Christianity. None of them had a clue as to what Christianity was, including the author, and yet they were convinced that they did. In fact, by definition, someone could be a Christian, even if they didn't believe that Jesus was the son of God!

Some of the rather humorous things I found in the book were:

1) The belief that believing in an afterlife meant not investing in this life. I find that so humorous because the entire reason I am able to lay down my life in service to others and to give up material possessions is because I am confident that there will be an afterlife! An afterlife frees me to focus on what is truly important (relationships) and not concern myself with accumulating wealth or meeting my selfish desires. The great benefit to that is that the more I have laid down my life for others, the more joy that I've had. That's probably because, as I said, the knowledge of an afterlife frees me from focusing on the wrong things.

2) The belief that life is meaningless or that believing life is meaningless will give an individual a full life. Okay, I read the entire chapter on this and didn't know if I should laugh or cry. I'm just so glad that I'm not there! I guess a meaningless life is okay if you find enough ways to inoculate yourself against the aimlessness and isolation.

3) The belief that every Christian believes the exact same thing about the Bible, how to interpret the Bible, and how to apply the Bible. What a misconception! Obviously, this author didn't talk with enough Christians (or even Civic Religion followers) to get a complete grasp of the role of the Bible in Christianity.

4) Unbeknownst to them, the bulk of the "good" in their society is based on Christ's teachings. In fact, one guy actually said something to the effect of "I was taught don't do something to other people you wouldn't want done to you." Hmmm.... As my wise husband pointed out, Swedes claiming that they can have a "good society without god" would be like John Rockefeller's descendants writing a book about how you can be rich without working.

While I get very frustrated with American Civic Religion and I can't stand how Christianity gets mixed with patriotism and politics, I'm thankful that I live in a country where there is still some passion, some life and some desire for purpose. As Zuckerman described Sweden, I couldn't help but think of the novel "The Giver". It sounded like a society where everyone was taking their pill in order to not see color, not have "urges" and just go about their business. Not messy, but not too full of life either. I'm sure that that picture is not completely accurate, but it certainly is not ever going to be America. We are far too diverse of a culture to ever all think the same, and being the same appears to be, from reading this book, a necessary aspect to success in Sweden.

"Society without God" was certainly worth reading, or at least skimming, as it strikes me as a prophetic telling of where our nation is spiritually headed.

Cherrio -- Unless You're Different.

Well, my early morning ire was up again today.  Every time I think western humanity is past discrimination, I get a new taste of just how "civilized" we are.  This time, the taste came from Great Britain.  Yes, the land that brought us the Bible in English, C.S. Lewis, J.R.R. Tolkien, Paddington Bear, and the concept that tea can also mean little yummy sandwiches and cookies, not just a pale yucky liquid.

There is an uproar over a new character on a popular children's television show.  The show, Cheebie, has hired an energetic, engaging young lady who just happens to have been born with a partial right arm.  Since her appearance on the show, there has been an uproar among parents in Great Britain, because apparently their poor sheltered children can't handle seeing a disabled person on television.  

Here are some comments, with my thoughts following them:

"How do you explain to a three-year-old that a host only has part of one arm?" 

She was born with one arm.  Sometimes that happens, but it's okay.  It doesn't hurt and she just has to learn how to do things differently than a person with two arms.

"We are programed to shun people like that as a matter of nature."

What?!?!?!  I think that people are programmed to shun people as a matter of selfish fear, ignorance and an inability to discern what is truly important. 

My child was immediately freaked out and didn’t want to watch. There’s a time and place for showing kids all the “differences” that people can have, but nine in the morning in front of 2 year olds is NOT the place! 

The only times  I've seen children "freak out" about a limb difference is when the child is 1) excessively sheltered and only been around people exactly like them or 2) when the child has obvious severe emotional issues and is trying, desperately, to get the attention of their parent.   I don't even believe that his kid reacted this way, because 2 year olds don't even normally notice the differences, let alone freak out.  Obviously, the Dad was freaking out and putting it on his kid.  This child will grow up disabled, too, because it's got some incredibly horrible parents that aren't bothering to teach him how to embrace humanity. I would much rather have a limb difference than such a shallow and selfish mind. I would have to wonder, as well, if this parent could "stomach" this better at another time during the day.  Maybe after one or two beers? At what point in the day or in life does he think you should do the arduous task of "introducing" his child to disabilities? Is it better after a good lunch?  Probably not before bedtime because he'd worry about nightmares... maybe he could medicate his son and then tell him? What incredible ignorance! 

In my 7 years of parenting children with special needs, I know, I KNOW, that the issue here is not the children watching the show but the ignorant parents.  Kids can handle disabilities, especially young kids.  They ask a couple questions and they move on, so much better than so many adults.  

Well, kudos to the BBC to stepping out and kudos to all the parents in Great Britain who are teaching their children!  Maybe they will  be able to change a society that has, more than once in this past year,  displayed a great disregard for life. 

Here is a Today Show Link to see more about the controversy. 

 

See Us on Inside Edition!

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Girl Swims with One Arm and Inspires

5 Years Old and Running, in a Crawling Sort of Way

Well, Nappy has  been home for over 2 years and just recently turned 5. She's now telling everyone that she's going to soon be 6, and I keep asking her "What's the rush?". I'm still getting over the fact that my oldest, Lawyer/Social Advocate Boy, is now 12. Where, in the world, did all those years go?

After 2 years of parenting my most-special-needs child, I fully understand some of the frustrations that other parents face, and I wonder what happens when it's a parent who doesn't have the courage or energy to stand up and talk back.

Because we're fighting a muscular condition, I've known she needed some type of physical therapy from the start. So, why, WHY???, I ask, did I have to beg, cajole, pray incessantly and go through a year of being told I was a bad parent in order to get just that? Why did I have to endure medical professionals telling me that I was in denial of her condition, simply because I believed that she could manipulate her environment more than they did? Why did I have to endure OT sessions where an OT tried to help me teach her how to do things, when, in reality, Nappy can figure out on her own how to do things? Why did the "experts" like telling me she couldn't work a wheelchair, would never walk, and that she needed therapeutic preschool? Why did they make presumptions without just cause?

Obviously, I'm not over that.  However, I do love talking about how they were wrong on all accounts!

However, now, she is has the best intervention possible. One day a week I can take her to OT (Occupational Therapy) and PT (Physical Therapy). For one hour a week, her wonderful therapist, Miss Shannon, works with her arms and shoulders to stretch and strengthen what is there. What an amazing difference it has made! Shannon understands how bright Nappy is, and that Nappy wants to learn and move forward, and she understands that the best use of therapy is to work on those muscles and joints in order to get more flexibility and strength. We do, at therapy, exercises that we can't replicate at home, so each therapy session is supplemental to the exercises I do daily (at least in theory daily...) with her.

And, PT... well, Nappy can now stand on her knees for minutes at a time, walk on her knees while holding on to something and even balance on her knees while on a platform swing. Even if she never walks, these skills have tremendously increased the options for her to manipulate her environment. Miss Melissa, as Nappy calls her, has taught us exercises to do with her at home and in the pool that have improved her trunk strength and increased her stamina. This kid is all over our house now, with new confidence and strength!

So, I'm still frustrated with the doctors and therapists out there that won't listen to their patients or their patients' parents, but I'm excited to, finally, see the system working. I wish there was some way I could inspire other parents to have a big mouth like me so that they can advocate for what their kids want.

Nappy is also reading. She's reading anything she can. As we drive down the street, she's behind me in her car seat:

"Suuubbbwaaayy -- Subway!"

"Giiiiiffffttt shoppppp -- Gift Shop!"

"Biiiigggggssss -- Bigg's!"

Non stop chatter and reading. She's playing to piano, too, which is great for her hands. She loves it.

And, she's incredibly logical. Take, for instance, what happened after I forgot to pack underwear for her to wear after she changed from swim lessons.

"Sorry, Nappy, I forgot your underwear. You'll just have to go without until we get home."

"Okay. But it will be cooollld without pants!"

"Well, you're going to wear pants!"

"Mom, I can't wear pants without underwear!"

"Yes, you can. You can't leave the Y without pants!"

"But I can't wear pants without underwear, so I can't wear my pants."

"You think you can go home with no pants!"

"Well, that's better than going home with pants and no underwear. You just aren't supposed to wear pants without underwear."

Needless to say, I won the argument.

She's just a wonderful little treasure... another precious jewel, like the other 143,000,000 out there that still need families, only still uniquely herself. 

The Gifted

I've always thought the concept of gifted kids is very funny. How much of it is really true, how much of it is the parents pushing or encouraging and how much of it is an incessant need on the part of parents to think that their genes are far superior to everybody else? Or, in the case of adoption, the incessant need of parents to think that they are providing an ultra-rich cultural and academic environment that produces gifted children?

Take, for instance, in our county, all the "gifted" programs at the schools. First of all, in the city there is a high school just for gifted kids. One whole big high school full of kids that are gifted -- now add into that number all the kids who passed the test but didn't go there, and then all the kids who are in the "gifted" program of all the other public and private schools. Don't forget the home schooled ones or the "undiagnosed" ones! You end up with a mighty large number of "gifted" kids! It almost makes you wonder just how "gifted" they all are if there are so many of them.

Malcolm Gladwell once pointed out that research has shown that while Mozart was gifted in music, he would not have been the phenomenal success that he was if it weren't for his father, Leopold Mozart, who taught, pushed and shaped him into the musical genius that he was. Could he have written his first piece of music at age 5 unless his dad was there to help? Probably not.

So, I've always thought this gifted stuff was malarkey, but, then again, I've bought into it.

Several years ago I was at Border's and perusing the workbook section in the education department. I was looking for books to work on with Lawyer/Social Advocate Boy. Of all the different series of workbooks, I, of course, was drawn to the one entitled "The Gifted Kid's Home Enrichment Program".

"Well," I thought, "That's obviously the one for my boy!"

As I looked through it, I realized the marketing scam involved. See, I had looked through some of the other series there as well, and this series, the series for the outrageously intelligent child, had the exact same concepts in it as the other ones! These, though, we're more popular because what parent wouldn't chose the workbook that calls their child "gifted"?

That got me thinking about why honest marketing schemes don't work in education. For instance, who would buy "The-slightly-Below-Average-Kid"workbook or "Your-Kid-Is-a-Slacker-In-School-So-You-Have-To-Buy-Them-a-Workbook" workbook or how about "Your-Kid's-Teacher-Didn't-Teach-It-Right-the-First-Time-So-Now-You-Must-Spend-$10-In-Addition-to-Taxes-Or-Tuition" workbook?

It just seems like those wouldn't sell so well.

The other night Rob and I were talking about what exactly one might find in these workbooks. We came up with "Billy and Bob's Needin' Extra Schoolin' and Learnin Workbook".

Such a book would have to focus upon logic through the use of words problems, such as:

Billy had $1 . Bobby wanted that $1. He is much bigger than Billy. So Billy gave Bobby his $1. How much money does Billy now have? (For a great two parter, they could add in "How much money does Bobby now have?")

Billy had $1. Each piece of candy cost .50. Bobby also wanted candy, and is still much bigger than Billy. But Billy had recently attended a "Boundaries" workshop and decided to say "no" to Bobby. What did Bobby do in order to get Billy to buy him candy?

Then there might be a puzzle section that contains puzzles that a bit scaled back:

Sudoku
1 _
_ 1


Crossword puzzles:

1 down, 3 letters, a "kitchen utensil that starts with the letter P and ends with the letter T."

I really believe that if they did market this, but rather called it "The Gifted Child's Home Enrichment Program", it would, indeed, sell well.

One of the things that I have always hated about organized schooling is the need to catagorize kids into the "haves" and "have nots". What really determines how "gifted" a kid is? And, even if the kid is gifted, is he more worthy of learning than the kid who isn't? What gifts matter? Doesn't being gifted with compassion or mercy have more meaning than being able to "stay ahead" of your peers?

In the context of public education, I have to question how just it is to give one child more opportunities than another just because he's "smarter"... yet, it's often justified because being "gifted" actually makes them an "exceptional learner". In education college, I was taught that the gifted are actually "special needs children". Please! So I guess it works well for schools to put them all together to work hard and improve the school's test scores?

Well, at least with home schooling I can just teach Jesus'way: Meet them where they're at and take them to the next place.

I've Got the Holy Holy Spirit

You just never know with a 4, nearly 5 year old. Especially when your kid is incredibly precocious. But, Nappy, as of late, has had an intense interest in Jesus and the Holy Spirit. A lot of people would say she's too young to really understand things, but I know that she's already experienced more trauma, loss and gain in her short 5 years on earth than most people experience in the first 20. Plus she's seen God's work in her life in very direct and vibrant ways. I believe she is falling in love with Jesus in a very real way. He not only made her part of his eternal family, but He gave her a family on earth and she understands that.

This interest has since flourished, and several days ago, she asked me about the Holy Spirit. I explained as best as I could who He is and how He works. Well, she was all about a super-spirit that could fill you with wisdom and courage and give you direct access to the voice of God! She asked, actually demanded, that we pray and ask Jesus into her heart and the Holy Spirit to live in her too.

So that we did.

Then when she was done, she smiled at me and said, "Mom, I GOT the HOLY SPIRIT! I'm gonna live FOREVER!"

I told her that was true, but to remember that her body would die, just not her soul, and the part of her that lived in her body, the part of her who was really and truly Nappy, that part would go to heaven, and in heaven, God would give her a new body.

"Yep!" She said, "The Holy Spirit and Jesus will give me a new body because I won't ever die!"

The next morning she came down to breakfast literally beaming with the Holy Spirit. It was quite a refreshing and beautiful sight. She is definitely in love. She even wrote a song:



That afternoon, we went to her regular physical therapy appointment. She'll be transitioning to a new PT soon, and that PT came to her session to meet her. While I was talking with her old PT, Nappy rolled up to her new PT and assumed what can be described as nothing less than asouthern pentecostal preacher mode. She even developed a southern accent! A Southern accent with the typical "--mba" that preachers like to throw on when their really worked up. I was worried she might start pulling snakes out of her pockets. It was that intense.

"I've GOT the HOOOOOLY SPIRIT! And YOU(-mba) can(-mba) have it too! He'll FILLLLL you up! And you can LIIIIIVVVE Forever! All -- YOU--- HAVE--- TO ---- DO--- is PRAY AND ASK (-mba)!"

This lady, who doesn't know us from Adam, just looked at my beaming daughter and then at me and then at my daughter.

I could read her mind, "uhhh...note... nut cases...."

However, my mind was reeling! Where did this come from? Not the message but the delivery! Did Jimmy Swaggart have some of his indiscretions in southern Ukraine? Are there Ukrainian equivalents to the snake handling preachers in the US? How could a little girl with genetic stock from Ukraine and in a family that never listens to that type of preaching ever have come up with this?

It was love. Her personality when it's in love. Heaven help us when she's a teenager.

But, the story gets better. The next day, I was discussing with the kids the story of Nate Saint, Jim Elliot and other missionaries that were martyred. I asked the kids what they thought they'd do if God ever called them to that. They were all discussing their answers when Nappy cut in.

"Well, I don't ever have to worry about that because I've GOT THE HOLY SPIRIT! I can't die!"

"Uh...Nappy..." I told her, "You can die."

"Nope, I can't." She replied, "When you have the Holy Spirit you can't die because he lives in you. So, na -na-na-na-na-na I've got the Holy Spirit and I can't die."

"Yes you can." I replied and explained it all again.

"Hmm.." she replied, appearing to be devasted over the news (wait till she finds out that she'll also have to pay taxes!), "Well, I'll keep the Holy Spirit anyway, because it's still a pretty good deal!"